Na Smuaintean

How do you feel when you walk out your door?

2009-11-06T15:00:00.000-08:00

It has been a long time since I've posted here - and today I don't want to talk about Cushing's. I have watched with sadness as the reports come in about the shooting at Fort Hood, and wonder with the rest of the world what would bring a person to the point of committing such an atrocity. The reactions took a dismayingly familiar tone, many people jumping to conclusions and spewing hatred towards Muslims, others trying to moderate that, wait to see, reminding people not to judge all people of a faith because of the actions of this one man. We've been here before, and I won't go into all the arguments around it.

I am not Muslim, but I have friends who are. One dear friend of mine posted on Facebook, "Anybody got my back?" I knew immediately what she meant, but most of her respondents didn't seem to. Unlike most religions, especially Christianity, followers of Islam are very visible - especially women who cover. I think it must be tough to even look middle-eastern in this charged climate. However, regardless of your race or background, if you are a Muslim woman who covers, you are symbolic to many - of whatever their perceptions are of Islam. This friend of mine and I recently traveled great distances to see each other for the first time in years. We met in Tennessee, in a smallish town. We went to an IHOP for breakfast. I was a little bit surprised by the attention we attracted, though I suppose I shouldn't have been. I tend to get treated differently because I am so large, but this was a whole other kind of attention, a different vibe. I often get treated with obvious reserve, even distain, and sometimes outright verbal abuse because of my size. I have learned to not worry about it, deal with it if I need to, and assume that people have their own issues. It's not really about me. Most of the time it doesn't get to me. I have another friend who talked openly (hurray!) with me about how it was for him to go out with me and be aware of the way people who don't know me acted around me in public. It's something I face every time I walk out my front door, it's just a part of life. The thing is, I don't worry that someone is going to be so filled with hate that they might physically attack or try to kill me. I don't worry every time a fat person commits a crime that I will be held responsible for their actions. I told my friend I have her back. I wish I could literally be with her when she walks out her front door. Think of this when you see Muslim women, when you interact with someone with a middle-eastern name, when you hear someone spitting out hateful generalizations. The person who shot so many people at Fort Hood is the one responsible for his actions. Support the people around you who are very aware of the risks they take when they leave the house.

Facing the Future

2009-06-19T22:12:00.000-07:00

I don't want to go through another brain surgery.

I saw the neuroendocrinologist today, after a couple of months of waiting for the appointment. I *had* been very clear up to now that of the two really viable choices before me, I was going to choose to have my adrenals removed. It meant that I would have Addison's Disease for the rest of my life, but I would still have all my pituitary function, I wouldn't have the risks associated with another pituitary surgery, and it would take care of the Cushing's for good. Thirty years of this insidious disease is more than enough.

Surgical consults were not encouraging. I spoke with two top surgeons here in Seattle, and both of them had very little experience doing bi-lateral adrenalectomies on Cushing's patients, and both of them were grim about what it would involve for me. Neither of them thought they'd be able to do it laparoscopically, and an open abdominal surgery for someone my size and with my compromised immune system, and Diabetes (because of the Cushing's)... they were not confident at all and said the "baseline risks" were huge. There was one surgeon in Wisconsin who had done twenty of these - many times more than anyone else had, and all of them laparoscopically, many on patients my size. I was so encouraged to find him, and then kept hitting brick walls trying to find a way to get the surgery covered out there. Medicaid said they would do so, but each individual provider (surgeon, pathologist, anesthesiologists, etc.) would have to separately become contractors with the State of Washington Medicaid. They won't do it.

So today he said that in light of that, even though a second pituitary surgery has less than a 50% chance of success, he recommends that I take that path. I am not likely to be able to keep pituitary function this time, which is huge, and for me the grief involved seems impossible to bear. Among other things, it would mean the end of any chance of having children. There are the other risks of course, of blindness, brain damage, and the usual surgical risks of - you know, death and all. Diabetes insipidus is something I've been told is a really difficult thing that sometimes also happens in these surgeries. There are many things I have learned as I've researched it, and I have been through this once already. I saw film of the surgeon I will likely have, doing this procedure when I went to the Cushing's Symposium recently. It's intense.

I have many fears around this... As a singer, I'm afraid of damage to my vocal chords when I'm intubated. I'm afraid of the risk of going blind or brain damage. I'm afraid of the more likely risk that it won't work and it will take another five years of my life watching the tumor come back before tests prove that it has returned and another treatment tried. I'm afraid of the pain. I'm afraid of going through this without a significant other this time, no partner to care for me through the surgery and especially afterwards. I'm afraid of the months and months of withdrawals as my body tries to adjust to lower levels of cortisol. I'm really afraid of the long, long haul afterwards. I've been told repeatedly by these doctors that it is going to get much, much worse for a long time before it might get better. The p.a. who works with the neuroendocrinologist said, "After your surgery people are going to start asking if you're feeling better, but that's just not your path. You have to be prepared for that." How?! I have said that it is as if I have been told that to save my life I have to cut off my left arm or my right hand. Neither choice is without terrible pain and loss, but there is no other choice but a long and miserable death. I am overwhelmed.

So I am not being "St. Kathryn of the Tumor", like I joked about last time... I am not laboring under the kinds of fantasies I had last time, that I was somehow going to gamble and win the medical lottery. Even if it ends up being a successful surgery, and the tumor does not come back again, I am not going to come back from it like I wish to. It is a very long and painful road ahead, a continuation of an impossible marathon that feels like a detour from the life I should have had. This time I am stepping into it with my eyes a bit more open, and I am standing here honest in my fear and pain and unsureness. I have heard that true courage is when you do things even though you are afraid, so perhaps that is what I have grown to be able to do now. I don't know how long I can sustain it, but I am not hiding today. This is the life I have, "should have been" or not. I am still watching, without much hope, but I am still open to the possibility that somehow this will have meaning, that I can grieve the losses and come out at some point not feeling like my life has been such a sad waste of potential. There is so much I had wanted to do and be.

I am grateful for the people who have stepped up and supported me through this long, long journey. I hope I can someday repay the debt I owe to so many. Your kindness means more than you could possibly know. I will need it over the next few months and years.

Twenty Years Later

2009-06-03T16:37:00.000-07:00

I keep thinking about Tiananmen Square. I was nineteen, about to turn twenty. I remember avidly watching the news daily as events unfolded. I remember thinking about how my peers the world over were changing everything, and I wanted to be a part of it! I watched the fall of the Berlin wall (and a friend brought back a piece of it), I watched protests in Russia end the Soviet Union (and heard stories from a friend who helped carry the giant Russian flag to the tanks on which Yeltsin stood), and I watched with amazement and tears and hope as thousands of students peacefully sat in Tiananmen Square and erected at statue they called "The Goddess of Democracy". I watched in horror and dismay as all their hope, and the hopes of so many across the nation (there were protests in many cities, not just there!) were literally crushed by the tanks that rolled through the crowds on the streets of Beijing. I watched as the now-iconic images were broadcast of a lone man, the next day, carrying plastic bags of - groceries? who knows? - facing down a column of tanks on the wide boulevard that led to the Square. He amazed me, and amazes me still. How many people in history have made such stands? How many have done so to no fanfare or notice? How many of us have moments in our life where we make choices whether or not to face the impossible crushers of our dreams and freedoms?

It is interesting to see the people now, twenty years later, who were there in those days. So many are "old" now, and I join them, about to turn forty and not understanding what that number means, or how my life came to this place from the young woman I was at nineteen. My dreams have been crushed by impervious disease, my fight has waxed and waned as my courage and resources have over the years. I saw a report on the Chinese youth today, how they're not interested so much in these issues, they are much more concerned with material gains. It reminded me of my generation in the U.S.; teenagers of the '80s were supposedly all about the money and parties, and looked at by the youth of the '60s in much the same way. The parallels are not perfect, the world has changed so much and the pace of change itself keeps growing exponentially - but I wonder if another ten years will show a new interest in political and moral issues amongst the Chinese youth. I always felt a bit out of step with my peers, because I was passionate about these things in a way that would have befitted a different time, but I saw more changes come that made me feel a part of the world I lived in, and the passion of people like those protestors in Tiananmen Square had an impact on me far greater than I'd realized at the time. It is nothing in light of what their struggle was and is, but I wonder if any of them understand how deeply they affected the rest of the world - to this day.

Playing Games With Medical Detritus

2008-10-29T13:26:00.000-07:00

Weird blog post title, yeah? I have recently been having more cognitive trouble - probably due to the Cushing's and also the medications I'm on. I'm having trouble remembering things, even what I'm saying mid-sentence, or not being able to come up with the words I need to say something, trouble concentrating enough to even read, or forgetting things I've always kept really good track of. It's scary frustrating, but I'm learning to adapt.

One of the scariest things has been the fact that I've had a harder time keeping track of my medications, including whether or not I've taken my insulin. My doc suggested that I pre-fill the syringes so I can have the doses for the day set out and I'll know for sure. Great idea! So last night I was filling them up, including my pill box for the week since I'd only just been able to pick up my prescription refills... I always wish there were a way to recycle pill bottles. I started playing with all the little caps and thought, hell, I should make up a game that uses this detritus as playing pieces. People have done some amazing art with medical paraphernalia. I want to play again! It's such a way to thumb your nose at the horrors of it all. How horrors become mundane and retain their terribleness I don't know, but medical hell becomes BORING - grindingly. Impersonal, institutional, inanimate, impervious. Play just screws that whole paradigm, and I love that! When I went in for my first brain surgery, I had just cut off my long hair (which had become thin and stringy and gollum-like) and I dyed it an unnatural loud fuchsia. Did my nails to match. The last thing I remember before totally going under anesthesia was someone picking up my finger and saying, "Hey, check out her nails!" That was fun. If you're going to be a 455lb body on a table while they lift off your face to get the tumor in the middle of your head, you might as well leave a sign of some personality there. Maybe this time I'll write a goofy surgery joke on my body for them to find. Something. I think it's probably a bit of a survival tool, too. It's so hard to feel human when you're going through what can feel like the hospital factory. Maybe they have to detach in order to do what they do, but it becomes obvious that most people you are in contact with aren't very aware of the suffering the patients are going through. No one can really be so. I'm grateful to have the medical care I get, and most of the time they are competent and compassionate, but I am the one living in my body, the only one living my life. There's a window where the suffering is bad enough to permeate everything, but not so consuming that nothing is left but pain, and that is where you can sometimes choose to play. It is an act of defiance, taking a stand, and keeping your humanity. It is the best of innocence to play, and choosing to step into that is an act of hope, standing in health while illness is present. I'll let you know when I finish making up that game.

Beautiful

2008-10-05T00:11:00.000-07:00

Crisis is a desperate place to be, and I have felt trapped nearly everywhere I turn by the grief and pain and isolation and fear... and then there are moments of Grace. There is still beauty around me, still joy to be had when I quiet myself and see. I walked out of my apartment and saw that these two plants I hadn't noticed for months had suddenly become a stunning juxtaposition as one bloomed and the other put on an autumnal display. I grabbed the camera and took it in.

Sometimes I think that "grace" is the ability to let things matter.

Diagnosis Recurrence

2008-09-23T21:46:00.001-07:00

It's official: Cushing's is back. I went through my four weeks of torture - three kinds of tests, multiple sets of them, every week for a month. (TMI alert:) Each week I had to pick three days to do the tests - spit in a tube at midnight, collect 24 hours of pee, deliver pee to lab, get a few blood tests done, spit in a tube at midnight again, mail salivary tests to a lab in Wisconsin. Yes, I spat in a tube at midnight and mailed it to Wisconsin. Every week for a month. I also kept a daily symptoms checklist. Could you rate your "acne" or "facial hair growth" on a scale of 0-3 every single day? I did the best I could. Blood tests have gotten more difficult. The lab tech who usually manages to stick me with minimal effort said it's getting harder and harder. Nice. So the tests are done, the results are back, and on Friday I saw my primary care physician and she said she'd consulted with the neuroendocrinologist and they agreed that it is definitive, finally. Told me to call his office on Monday.

It was kind of unexpected to feel grief at the "official" diagnosis of a recurrence. It's not like I didn't already know, but I think there's always a part that kind of hopes I'm just being melodramatic or paranoid and that it's really not the terrible news I think it is. So Monday I spoke with the neuroendocrinologist. I was surprised he spoke to me himself and not just his p.a., but I'm glad he did. I had to roll my eyes when he said, "It's not rocket science, it's obvious that you have a recurrence". NO SH#%, SHERLOCK! He said we could do more testing if I wasn't convinced. I almost choked and said, "No, I've known this for around two years now". My highest UFC result was 161 - normal is 0-50...so finally the numbers are supporting the symptomatic evidence. He said that I had such a strong diagnosis of Cushing's before my last (!) brain surgery, that it was very clear. He didn't remember that my tumor was also unusually large. If I'd had a small one I'd have had a better chance of success the first time around. I read in my files that I only had a 20% chance of success. They didn't mention that to my face. He said that whether or not I decide this time to do another pituitary resection or a bi-lateral adrenalectomy, there is a really good chance the first procedure won't work and I'll have to do the other one anyway. My future is not pretty looking. He kept saying that he was committed to working to "get the Cushing's beat", and that even having Addison's Disease and Nelson's would be better than Cushing's. The reading I've done has scared me. He brought up radiation as well, but there is an even lower chance of success with that. I hadn't realized that there is such a thing as "ectopic" adrenals, making it possible for there to still be cortisol production even with an adrenalectomy. It's going to be a really tough decision to make. I have appointments with the neuroendocrinologist and the neurosurgeon on October 6 to talk about it. In the meantime, I'm trying to manage all the medical issues that continue to spiral from the Cushing's.

It's a lot to handle at once, and there are so many things going on in my life at the same time, I find myself wondering about meaning here. I don't believe in deity the way I was taught growing up, and I'm not sure how karma makes sense here either. I don't understand "how", much less "why"... It is unfathomable to me that I am doing this without a partner now, without family to go through this with me in a present way. It is an astounding amount of information to process and tasks to accomplish and decisions to make on my own, while dealing with being so sick throughout. I have never been in so much pain, and dealt with so much grief and had to rise to the occasion functionally in my whole life. Every time I think I've faced the biggest challenge of my life, there is more. I keep trying to make sense of it all, and I don't know that that is possible. I do know that if I can face this with my eyes open, not holding my breath, I will find something new. Walking through fire is going to change me. It already is. I wonder if I will come out of this at all, but I suspect I may find meaning where I never have before. I might finally let go of things I have held dear that have held me back. I think I've always clung to the thought that relationships would make anything bearable. I'm not going to find my strength there, at least not exclusively. Ultimately, we are all alone. No one is going to fully understand what I am going through or have been through. No one will be able to care for me enough. The only way I can survive this is if I find a way to let that go and face my own strengths and weaknesses. There is going to be pain that no one can fix and there are already nights alone where I don't think I can bear another minute. Maybe I won't make it, but I have to find that strength in myself, and step into this experience - including all the things I desperately want to avoid. I don't know if I can do this, but I am doing it today. I think the best way to benefit from the support of the people around me who do step in with me from time to time, is to be standing in that knowledge. I think what holds true for relationships in general is true in a crisis as well; if you find what you need within yourself, you are also more likely to attract that to you from outside. It just seems to count more now. There is no room for pretending.

Four Years Since (first?) Brain Surgery

2008-07-27T23:13:00.000-07:00

It's been an uncomfortable day today. I have been seeing the date creep forward on the calendar, wondering how it could have been four years already since the surgery, and at the same time feeling how differently the world looks now. I re-read my post from the one year "surgaversary" here. I was so full of hope, then, as hard as it was.

I don't think anything has turned out as I'd hoped. I still believed that with patience and perseverance I would eventually be healthy. I didn't believe the lurking fear I had that it may come back. How can you and still go on?

So here are where things stand now. After about a year and a half, progress slowed and then started to reverse. Within the last year there have been some jagged drops down again. I am back on the insulin after a difficult bout with blood sugars in the 400s that coincided with the worst insomnia I've ever had in my life, a return of the adrenaline anxiety and headaches. The sugars are more under control, the insomnia was finally medicated to a tolerable level but has since returned. I'm having headaches most days now, the pain level in general is much higher than it was even a year ago, and I'm having migraines again nearly once a week. I gained back forty of the eighty pounds I'd lost - in a flash, and have managed to slowly re-lose about twenty or so of that. It is not a stable thing. My skin is getting bad again, and the shape of my face within the last year has returned to its "Cushingoid" shape. (Ugh, hate that word.) Energy level has tanked, and on some days it is nearly impossible to just get a shower and dressed without multiple breaks. Endocrine issues suck!

On the medical end, I have continued with the same primary care physician, have seen an endocrinologist at the U.W. where I'd had my care before (my doc from the first diagnosis and surgery retired, though), and have now gone to a neuroendocrinologist at Swedish Hospital who is one of the top pituitary docs out there. He is very, very into thorough testing and has put me through the wringer. All three docs have said that they think it has returned even though nothing has shown up on the MRIs I've had, though that is not unusual with slow growing acth producing pituitary tumors. There were moderately elevated cortisol levels in my last series of tests, and the one before that, and the symptoms otherwise are very, very clear (cortisol levels were quite low for the first year or two after surgery). Two of the docs think I should get treated now, no more testing; the endo doc at U.W. has recommended radiation (last option on my personal list). The neuroendo doc has said that his first recommendation would be to have a bi-lateral adrenalectomy, which leaves me with other issues for the rest of my life and doesn't take out the tumor (but does remove the possibility of cortisol production), or to get another transphenoidal pituitary adenomectomy, this time taking out some or all of my pituitary gland as well. None of these options are without risk and major repercussions, some for the rest of my life. For this reason I understand wanting to have all the "t"s crossed and "i"s dotted before moving on. I don't want to have the wrong thing done and go through all of that suffering for nothing. On the other hand, the testing is bad enough in itself and my health continues to deteriorate in the meantime. I see nothing in front of me to inspire hope. So much of the damage is already done, already permanent, no matter where we go from here. I should have the next set of tests done and results in another six weeks, then more discussions with the docs... blahblahblah.

I keep finding myself shaking my head when I remember my five-year plan that ended with me on the Master's Swim Team. I realized this weekend, finally articulated, that I have been holding my breath for much of my life. I think I've sort of been white-knuckling it through terrible losses, holding on with the idea that if I just made it through this one more thing, or these hundred more things, I'd be able to have the life I was supposed to have and then I could look back on the awful things as painful, but not so much loss. I haven't lived it, I've procrastinated, held my breath, thinking that just past those things in the distance I'd be ok, life would be ok enough. It hasn't worked out that way. There doesn't seem to be any place beyond, where my real life will happen. This is it. This has been it. It is too unbearable to fit in my head. I wonder if reconciling this idea is where true hope will be, or the ultimate despair. I don't know. I think my grief debt has compounded interest.

So. To make it through another moment, on this inauspicious day, I am finding small things that feel good as much as possible. British television, long emails with old friends, spice cake with neufchatel frosting, hugs from an ex-boyfriend who came over to help me get the computer to talk to the camera... everything is heavy with this sadness today, but I'm not in bed with the covers pulled over my head. That is something! I still have the questions for myself, where will I be next year? Five more from now? The questions themselves speak of some kind of hope. ...and maybe tomorrow I'll find something to laugh at, or pay a little more on the grief debt.

Dixie in Seattle

2008-07-22T16:47:00.000-07:00

It was another banner day on the #16 Metro bus. I was headed from Downtown to Greenlake. There are almost always some kind of tourists on that route, trying to find their way to the Space Needle. I got on the bus today and squeezed past a large and pale so very southern family. It looked like young parents and their toddler and infant and both sets of grandparents and maybe an aunt? and a great-grandparent? There was a man behind me, unconnected to the southerners, having a long and boring conversation with someone in his own head, sounded like he was talking about warehouses and shipping things. There was no phone, no bluetooth headset, and the monologue occasionally wandered into random places. I didn't listen too closely though. I couldn't, he was being drowned out by very loud nasal not-from-around-these-here-parts tourist voices all stressing out but smiling at each other. The young mother had a nervous perky incessant patter directed at her toddler son, "no, sweetie, we don't put that there, not there, sweetie, not there, look, over here, over here, over here, ok one more but then we have to put it away, here it is, one more but then we're going ok, one more now we have to put it back" (I'm not exaggerating!) We were approaching the fountain by the 5 Point Cafe that features a bronze statue of Chief Sealth and some bears. Suddenly the boy's dad very, very loudly said, "HEY, you wanna see uh INDIAN?? Look! We're comin up on a INDIAN!" and all the rest chimed in, including grandpaw "LOOK AT THE INDIAN, BOY!" "Didja see the INDIAN?" It was loud and went on and on, and I shuddered to think... wondered if they had realized there were Native Americans all around them today. We turned the corner and one of the older ladies exclaimed how scary the monorail looked, wondered if she'd throw up from fear if she tried to ride it back downtown like they'd evidently planned. Oy vey!

I realized, as they were figuring out how to pay their fare and where they were supposed to go, that I was looking at them with just as culturally biased eyes as they were seeing Seattle with. I immediately assumed ignorance and bigotry and probably had images of back woods and abusive situations. They could be lovely people, though untraveled and unaware in this context. I hope their world was expanded today, and I hope I managed to stretch my perspective just a bit, shave an edge off my own hubris. Still shaking my head...

Well, Yeah, and I Miss Him Too; the update lists

2008-07-16T23:41:00.000-07:00

Ok, so as requested, an update on life as a single woman so far:

* It's weird to do the same things as friends with someone you've only known as a romantic partner.
* I love mushrooms
* It's wonderful that no one is shaving over my sink anymore
* Hugs can be dangerous
* How does this celibacy thing work?????
* Dealing with medical stuff alone sucks
* Everyone seems to be suddenly having babies
* I am apparently quite popular with the cab driving set

There's more, but insomnia has sucked the mind out of my brain leaving a thin stream of whining left to write with. I think that makes sense, but possibly only to my addled self.

Life lately is three things here;
* heat
* re-arranging my apartment to try to make room for art space
* the ever-growing medical hulabaloo.

Three things I hate about that:
*miserable stickiness
*utter chaos and clutter
*hopeless suffering.

Three things I like about that:
*the pleasant relief of cool sea air coming in my window off the Sound at night
*prioritizing what i truly love and use over stuff i don't
*um... can't find anything to like about the medical stuff. ok - i like that there are at least a couple of medications i'm on that make some of this more tolerable.

Best thing that's happened so far? Re-connecting with old friends, including a timely random contact from one of my favorite people I'd lost touch with years ago. If things were to improve health-wise I'd so be out there forging a new life for myself. Medical World has taken another miserable dive. That's the challenge, always, trying to find ways (and motivation) to create as much of the life you want as you can within the resources and limitations you actually have. I know, duh! Takes an amazing kind of effort to do so, though. It's easier to give up and tune out, settle. In my somewhat warped childhood mind, I remember trying to imagine how I would find beauty, something worthwhile if (when, I thought) I were to end up in a concentration camp. I have quite a list from those ruminations. There is always something to value, some kind of beauty somewhere even in the worst of situations. The pretty color of brown the mud is. Something. Having the capacity and motivation to find and appreciate that in overwhelming circumstances is the real trick. Or just find it all ridiculous and laugh. Silly, silly concentration camps! Edge of sanity skills, that. Girl needs sleep.

So Long and Thanks for All The Fish

2008-05-15T01:18:00.000-07:00

It's been five days and, let's see, almost five hours...

Jason and I went out for fish and chips last Friday night. Things had been feeling weird between us for a couple of weeks and I couldn't figure out why. There was an odd little fight, about nothing in particular and I asked what was going on, told him how I'd been feeling. Turns out, he'd been feeling like he wanted to end the relationship, "for awhile now, but I don't think I knew that was what it was", he said. Wow. It was a good and terribly hard conversation. We talked about it, about what we wanted and didn't want, and about how we love each other, about how we will always, but that this was really it, we were breaking up. In the twelve and a half years we've been together, we broke up once, six years ago, and when we got back together that time I'd told him if we ever broke up again that would be the end, I wasn't doing the back and forth thing. He remembered that. So hard.

We held hands across the table and I thanked him for being honest with me, thanked him for twelve years of loving me, and thanked him for the fish and chips. He sort of laughed, choked up, and said, "you goof!" We left the restaurant and he walked me to the door of my building, said he felt weird. Me too. We said goodbye there, he didn't come up this time.

I find myself mostly numb now, and I keep doing the math; twelve and a half years...most of my adult life, about a third of my whole life, all but one year of living on my own... I keep trying to grasp it, and it is elusive and surreal. How do you come to terms with such a thing? Any reactions I have are distant and vague, but I know this is big. It's coming out in ways that don't seem emotional, but are obvious - I can't sleep, eating is an ordeal, I don't want to be with people or talk to anyone or do anything but sleep, if only I could. Ugh. All of this while mostly numb, though, which is a mixed blessing. I had a premonition, a few months ago? - in the near past anyway, that my life as I knew it was going to be forever changed in a way I couldn't foresee at the time. I have lost my cat and my boyfriend in this brief time, and feel like I'm waiting for the third thing, trying not to be paranoid.

There is good here, too - I am glad that we ended so well, that we both want to be lifelong friends, that we were brave and honest. Along with all the scary unknowns, there are now a huge number of new possibilities that might even be wonderful. I find myself suddenly realizing things that seem so random - like how we're never going to do this or that that we'd planned on, or how he's never going to fix me breakfast again, or that now I can eat mushrooms or legumes or shellfish or tofu or mustard whenever I want to, or that now I can make fashion decisions without ever taking into consideration what he liked to see me wearing. Not that I couldn't do those things while I was with him, but it just was a challenge. Now I can discover who I am as a single person again, but at this point in my life. And somehow I have to figure out how to handle serious medical issues and crises without my main support person. That one is scary and too much to think about deeply. I have never been a 38-year-old single woman before, much less with these health challenges. Oddly, though I don't feel at all like I'm putting out any sort of vibe, I've been hit on more than once already since Friday. I find that perplexing, but ok, whatever! So not ready to look that one in the eye either. I wonder what's going to happen when this numbness wears off. Not sure I want to know... I do wonder where my life will be in a year, in two, in five years? There are a whole different set of possibilities now than there were a week ago.

...Jason, I will always love you, and will always value the wonderful things we shared and the way we grew together from our twenties into our thirties. We've both come such a long way. I want the best for you, and for me too, and am glad we will share that future still, if in a very different way. Thank you.
P.S. "theend" ;)

Confessions of The Journey

2008-04-17T22:37:00.000-07:00

I've been thinking a lot about spirituality lately, for lack of a better categorical word... I have also been feeling tired of being quiet about things that I'm afraid will scare people in this area, so here's the big post - probably bigger for me than it really is for anyone else.

I grew up in a very, very conservative Christian home. I also had long serious conversations (with whomever was willing) and thought deeply about religious/philosophical things when I probably should have been playing with Barbies or soccer or something. I couldn't quite figure out why I kept getting the incredulous "How old are you?" instead of actual conversation most of the time. I learned to keep my thoughts and questions to myself for the most part. When I was about fifteen I finally announced to my parents that I was No Longer a Christian. They told me that I still had to go to church, but it didn't have to be theirs (still one they'd approve of, though) as long as I was living under their roof. I went to Baptist and Methodist and Assembly of God Pentecostal churches, a storefront rocker church, and a high Episcopal church. Got myself an education. At the same time, I was exploring other things, from Paganism to Islam. Paganism was where I was most clearly drawn, and also a source of conflict, something I felt like I had to hide from the family (Demons in the house!!).

So I finally moved out, 2,000 miles away, and decided to try going to a church one more time, to see what I thought/felt about it once I was completely out of the family context. It was an interesting time. A part of me really did want to believe, but I finally realized that I actually just didn't. I'd listen to the speakers and the songs and kept coming to the bottom of things - I didn't believe the premisese they did, so none of it really made sense, or mattered. I had struggled with all the built-in "safeguards", the many things one is supposed to do if doubt is there, and the picture that kept coming to mind was that a whole bunch of people were telling me that grass is purple, but I'm sorry, it's green - when I look at a lawn, I see green, and having "faith" that it's actually purple and that someday I'll see the purple is such a stupid lie. I don't want to live my life propping up something I deep down don't think is true. I very clearly remember the day I walked out knowing I was never coming back.

Paganism was different. There were completely different ideas about freedom, and personal responsibility when a messianic figure was out of the picture. I saw a lot of irony in how so many Christians I'd seen over the years practiced what they called "Witchcraft" more than any Witches I knew - and many Pagans I knew lived lives more like the Jesus Christians talked about than the Christians did! Weird. I also started understanding more about life in, oh, the rest of the world. In trying to describe how I grew up and the transition out of that world I have started saying, "It's kind of like growing up Amish". It was a world of its own, and really quite isolated. So I've been a Witch for many, many years now. I've spoken about Paganism some with my parents - maybe just my mom? It was awhile ago, so I'm not sure they'd remember. They kind of tend to forget things they don't want to know. I know they know I am not a Christian though, because every now and then my mother's heartbreak cracks through and I hear how painful it is for her to know that her daughter is going to be in hell for eternity. They pray for me a lot, and I know they love me. It's hard.

For me the Craft has been many things over the years. It has been a place of beauty and strength, peace and progress. I have had times when it sustained me, when I felt the power that goes along with being responsible for your own fate, and the hugeness of places that intersect with our conscious world. I have felt honored, empowered, and sometimes very, very empty. There is a part of me that misses having a personal relationship with a personal deity. I don't believe there is such a thing, but I sometimes wish there were. Sometimes I want a messiah/best friend/JesusGod, even as I know it is a fantasy. I wonder how so many people, so many smart and educated and travelled people can believe the wild stories as literal truth. (I don't believe in absolute truth, either.) It baffles me.

So I find myself in this weird uncomfortable place. I am very much drawn to something I don't believe - not the Christianity I grew up in, mind you, but this thing that I see in people I know and respect who are genuine and smart and living lives of intentional care, integrity, and some kind of love that is beautiful and appealing. I find most of what I grew up with to be false and gross. I am torn. I also find the Craft beautiful and appealing, but there is something missing there for me. It may be my own fault, it may be because I have been a solitary practitioner for years now, and I need something relational in my spiritual practice. I don't know. I'm out of my little closet now, though - for my Christian/monotheistic readers who didn't know, I have been a practicing Witch, an initiated dedicant to Bríd for many years. For my Pagan readers who didn't know, I am not sure where I'm going to end up, and I am looking at lots of things, including a kind of Christianity! Yikes!! Time to go make some offerings, I think.

The Power of Choice

2008-04-05T15:19:00.000-07:00

As I've been struggling with these ideas of hope and meaning and helplessness and despair, I have had some wonderful people to talk with. One of them is a friend who is in very similar circumstances to me, same age, same economic situation, but she has MS. We were talking today about the idea of choice in the midst of terrible things. She has struggled with it too. I keep hearing this message that is supposed to be empowering, that I have choices - and I do, but so very many are terrible ones. She brought up the "Sophie's choice", I thought of the people in the burning Twin Towers, some with a choice at a window to die by fire and smoke, or to jump to their deaths below. A terrible choice indeed.

Most of our choices are not so terrible, nor are they so clear. There are worse things to have to choose between, too. One differentiation my friend made today was between participation and responsibility. I think I have resisted the whole idea of "power of choice" when you're not ok with any of the choices available. How is it empowering to have a rapist with a gun give you a choice between rape and death? Or rape of your child and death? Those are extreme examples, but there are parallels with the lesser kinds of choices I feel like I face on a daily basis. I feel like if I participate in that process, if I own the choice, it doesn't move me from a position as a victim to a position as a survivor/empowered person/whatever - to me it feels like it moves me into a position of complicity, an ally with the perpetrator, agreeing with the evil that I will do one or the other of my own free will. And that brings it back to what is truly free will... and how coercive is it to have nothing but terrible choices to pick from? I think with most of these issues there is no actual perpetrator, unless you want to call it "fate" or blame it on deity or even yourself in a karmic way (there's a whole other thing), and to me that is also frustrating, banging your head against the proverbial wall - the impersonal impenetrable unconsciousness...

Don't know how to wrap this one up, but it's something I keep trying to figure out.

over.whelmed.

2008-04-04T23:25:00.001-07:00

It's been awhile since I've posted! It's hard to write here when things get dark. It's been a really really hard week on several different levels.

I saw my primary care physician yesterday, and we talked about some of the physical things that are going on. She had the nurse give me an ekg because she was concerned about my heart. My heart is fine. I think I've actually been having panic attacks, it's just that anxiety has never shown up as chest pain and asthma-like attacks before. Ah, well, I guess ridiculous suffering has to change in flava every now and then, mix it up a bit. Yeah. Anxiety is more and more of a problem because of the Cushing's progression again. She came back into the exam room and said, "Well, your medical vacation is OVER", and proceeded to tell me about the appointments and tests and treatments she's setting me up with, cardiology work-up ("you'll need it before another surgery anyway and you're at really high risk"), lab tests, wants to mess with meds some more, we'll talk Monday when the labs are back about the plan, there's a call in to the endocrinologist blahblahblah. I have a dentist appointment coming up because my teeth continue to deteriorate; everything that Cushing's does progresses, no matter what I do. I felt weighted down so heavily. I have spent years, years, being conscientious about my health, braving all these things the doctors have bade me do, fighting to be heard, fighting to get better, fighting for some kind of future that doesn't have a medical life as the centerpiece.

This last month, when I "quit" (as much as I was able to), I had a taste of what it was like to just suffer from the effects of the illnesses, not that plus the stresses and pains of the medical activity as well. I don't have the energy to fully explain what that means right now, but I have never felt it so keenly. It was funny, in an odd sad-ish kind of way, when my rather hip, uber-smart doctor was examining me, she noticed my nails (painted hematite in a random fit of dark fashion expression) and said with an almost wry smile, "you're funny, k. you're so sick, and you still manage to do your nails". She added that that was a good thing. It's so ironic, or something. The moment is so illustrative to me. It was actually really good to hear her acknowledge that things really are that bad, and at the same time, I had the mixed reaction I feel when someone points out the fact that I seem so together anyway. It is a good thing, and it also is a maddening thing. If the whole picture were more obvious, I think there would be more support, something. And if I had less of the strength of an ox, I wouldn't have suffered this long! Stamina, strength, endurance - these are good things, right? I experience them with a kind of bitterness sometimes, because I know this marathon would have been over long ago otherwise. It would not be so hopeless if I knew why, perhaps, or if there is something better ahead, something worth it.

(And the caveat here - please understand that I do value and cherish the many and enduring ways that people have shown support!)

Vacation Evaluation: D -

2008-03-18T16:24:00.000-07:00

Back from "vacation". Sigh. Does everyone feel this way? It was a strange experience. Even with all the phones off, schedule cleared, doors locked, curtains drawn, I could not for the life of me relax. I finally took the batteries out of my clocks because the tick-tocking was bugging me so much! (Ok, so I'm neurotic.) I was told by someone who saw me today that my face looked "softer", a little bit more rested (and he made a gesture with his fingers to emphasize "little"). Hm.

Here's what I'd do differently next time: I would plan things to do - not a "to-do" list, nothing set in stone, but I would have options already planned out, like a menu of things to easily do if I felt like not trying to sleep anymore - meals included in this list. I would try to get away from my apartment for something truly restful away from the stressful reminders and aggravating ambient noise of my middle-of-downtown studio. (Like a massage, if I could scrape up the money.) I would also plan a more gentle re-entry here...

And what have I taken away from this experience? I need to do this deliberately on a more regular basis. I have bought into what I imagine everyone else is thinking, that I have tons of "spare" time, I couldn't possibly need down time. But I really, really do. I need to purposefully set aside time with no appointments, obligations, phones or screens to rest, relax, or fall apart if necessary! I need to learn how to do that well. This has taught me that. I don't know how to rest. Time to learn, or I'm in trouble.

So how do you do it?

Aloha

2008-03-11T00:22:00.000-07:00

I'm feeling a bit wicked, in a remote way, and I think I like it.

Can't afford a vacation? No energy or time or access to beaches and quiet places away from the city? Make it happen anyway. I am *so* done, so over-stressed, so at my end, I decided to make myself a break. I've planned a few days on my own, no appointments, no helper, no boyfriend, no phones. I'm getting my place cleaned up, fridge cleaned out and carefully re-stocked, worry items and to-do lists checked off or put aside. I am going to sleep as long as I can whenever I feel like it. I'm quite looking forward to it. Saw the pcp today and told her that I'd gotten a package of new medical tests and orders from the neuroendocrinologist for another month of medical torture and I just put it away. Not interested, no thank you. Oh my Gods how liberating that feels... from this distance where I'm living these days, anyway. She said, looking at me sideways, "Well, put it aside for a week. Get some rest. Come back and see me next Monday."

I'm going on vacation, baby!

Naked on the Sidewalk

2008-03-08T20:14:00.000-08:00

Ok, so I wasn't really naked, but I sure felt unexpectedly bare and exposed.

I was walking down the sidewalk today, on my way to catch a bus. Jason had just picked up Nuala's ashes from the animal hospital and I didn't want to open them...I'd left the box unopened at home. There weren't any other people near me when the guy walking towards me started loudly addressing me from about twenty feet away. He was a little tall and thin, clean, maybe in his mid-to-late forties, longish gray and white hair. He looked directly at me and yelled, "Are you ok, sweetheart?" and clutched his heart with both hands - "Is you heart ok?" I was shocked out of my walking-down-the-sidewalk reverie and didn't know how to respond - then he said, still in this loud voice, "I love you!" and threw his hand up in the air as he passed me, "Never forget that!" and we both kept moving on in opposite directions at the same pace. So weird. When I was at the bus stop about ten minutes later I saw him walking across the street, intermittently talking to himself.

I would have ignored any such attention without hesitation, and I didn't respond, but I did hesitate - caught completely unprepared, I almost answered, "no". I didn't think I was projecting any pain at all. I wonder if it was truly obvious, or if it was one of those odd things that happen with people... sometimes crazy has a radar for truth. No boundaries, though, clearly!

Nuala Luna

2008-03-03T19:02:00.000-08:00

warm soft bundle of
sweetness

I miss the weight of
you -
close furry familiar
little alien beast

fierce huntress of paperclips
and string,
you fetched me out of
my torment
into purrs and
tiny paws

sleep well, my babygirl,
'round loving hand -
and hunt to your heart's
content

Nuala is Gone

2008-02-24T22:53:00.000-08:00

Jason just left and my apartment is empty. It's emptier than it has been in seven years.

Thursday night I came home and found Nuala, who had been walking and eating and drinking and "talking" when I'd left after lunch, curled up on the floor. She didn't greet me at the door, she didn't respond when I called out to her. Jason arrived minutes after I did and went to pick her up and she was not ok... very lethargic and weak. We gave her fluids and she responded some, but not very much. He stayed the night - I really wasn't sure she'd make it, but she did. He went home to get a shower and some rest and I held her all day long. She'd make a move like she needed to get up and I'd put her down and she would pee. Twice she did this, and it got to me so bad to see her rouse herself to not pee on me even in her state. She seemed to improve in the afternoon, started to vocalize again a little, walked around, though weakly, and even finally showed an interest in food and water. I was so happy. Jason kept saying, "but she's not -" and I would stop him, "I know, I know".

We went to bed Friday night, with Nuala curled up on her little bed on top of the pillow next to me, same as every single night for the last seven years. She was soft and snuggly and tucked her head over my hand and we slept. I got up yesterday morning and she wasn't responding to touch or to having her name called. She was still breathing. I picked her tiny body up and she was so stiff she couldn't uncurl. She's never spent an entire night curled up in her bed without getting up once. I held her like a baby, something she loves - gently rubbed her belly and scratched her chin. She responded to that, but weakly, and then relaxed enough to unbend and suddenly peed all over me. "Oh, babygirl!" We cleaned her up and the floor up and talked about what to do. I couldn't put her down. We finally called the Elliot Bay Animal Hospital and they asked some questions and said we could bring her in even though she'd never been treated there. Nuala moved like she needed to get down and I placed her carefully on the floor, supporting her 'til she was steady on her feet. She didn't move once she'd stood, just started to shake with strain and peed like she was made of water. She has always been the most vocally expressive cat I've ever met, and she made a sound I'd never heard from her. It was weak and scared and so helpless and miserable. I took care of her and we decided it was time. I held her while Jason got his shower, he held her while I got mine, and we called the hospital and a cab and took her to the hospital. They were so amazing. We walked in and they said, "Nuala? Right this way" and got us straight into an exam room. It was warm and comfortable and they had a cozy blanket folded up over the table for her. They asked some questions and Jason filled out the paperwork and I signed a couple of things. The doc came in to examine her and was so gentle. She was surprised at how not dehydrated Nuala was, considering the shape she was in. That made me feel better about the care we'd been giving her. She said that she thought we had made the right decision and had brought her in at the right time. They could do some major interventions that might keep her alive for a couple of more days, but that's it. I had to say no, though. Her voice kept echoing in my head and I didn't want her to suffer any more. The vet, with much compassion, said that she really thought that was the best decision. They gave her only a mild sedative since she was already so relaxed and left us with her for 15 minutes or so while it took effect. Jason and I held her and each other all together and told her how much we loved her and how beautiful she was and how she wasn't going to have to struggle anymore, sweet kitty. The hardest part is that she was still so responsive to our affection and it felt like she still wanted to snuggle up and be with us. The vet came in sooner than I'd expected and asked if we were ready. I would never be ready, so I nodded yes. We got out her favorite bed and put her on that on the blanket. They had to use clippers to shave a bit of her back leg for the injection. It was loud, but she didn't seem too bothered, and I just kept my hands on her and rubbed her forehead and got close to her face and talked to her, "it's ok, sweet baby"... The doctor said she was doing it now, and I saw her eyes start to change. I moved my hand to support her head, and I kept saying "Thank you, Nuala, thank you so much, thank you!" and then I felt the weight of her head fall heavy in my hand. The doctor was listening to her heart and said, "She's gone" and I lost it then. Like I'd been holding it in all this time to not distress her while she was so sick, and suddenly I was hyperventilating sobbing, like a convulsion, like throwing up. I couldn't open my eyes, I couldn't control anything. I felt Jason standing behind me and I had my face in my arm because I didn't want to crush her little head though I couldn't move my hand away. I remember the doctor putting her hand on my arm and saying things like that Nuala is in heaven now, and she thanked me for giving her such a gift, for being so kind as to bring her in and not prolong her suffering. She sounded like she was crying. She said over my sobs that it was ok, it's a sign of how much I loved her and of what a good kitty she was. They left the room and told us to let them know when we were ready for them to take her. I kept petting her and talking to her and not knowing what to do, but her little body started to lose it's warmth and I didn't want to feel that. Jason got someone to come in and they gently picked her up in the blanket and everything and took her out. They brought her empty bed back in, called a cab for us and said they'd let us know when it was there and left us in the room. When we left I stepped into this unreal place, this sunshiny spring-like day where everything had changed, but it felt like nothing had changed, nothing had happened, nothing was real. Numb. Jason wasn't numb. He was heartbroken like I've never seen him.

It's been so hard. I feel a little bit crazy. Most of yesterday I'd feel snatches of emotion and then numb, cold blank numbness. I couldn't get warm even when people around me were taking layers off. My headache of several days still won't go away and gets worse when I cry. We didn't go home right away. When we finally did walk in the emotions started more for me. Seeing the pain on Jason's face made it more real. But I keep thinking she's asleep on the couch or sitting under the table by my feet or that noise in the kitchen was her, or that I have to keep the bathroom door shut so she won't wander in and get "lost" like she did after she lost her vision. I keep seeing her out of the corner of my eye. My chest is heavy, literally like there is some kind of pressure/weight on it, my throat hurts, my skin is tight, I ache more than usual, my whole body hurts and I am fatigued to the bone. Jason got up before I did this morning and I woke up and before I'd even really opened my eyes I reached over for her and her little bed was there but empty and I sobbed, buried my face in her empty bed and couldn't stop the gasping sobs. I felt Jason sit down next to me and hug me and I opened my eyes and looked at him and he said, "I know". Today's been like that.

We went out for a late breakfast. Yesterday was actually Jason's birthday, poor guy. We had breakfast nearby and walked through the Market. I kept wishing I had the money to buy pussy willows - they were all over the place. Made me think of her for obvious reasons, but they match her coloring, and are soooo soft, just like she was. I keep thinking of her somewhere sunshiny, able to see everything and stalk whatever moves and play and curl up in the sunlight for a delicious nap and somehow be surrounded by the love she's had here. Somehow. Jason bought me two stones from an artisan who carves things into rocks. They are both small, sized to fit in your closed hand. One is gray and says, "I MISS YOU" and the other is white with a gray heart carved into it. Gray and white. It is good to have something to touch. When we got home we cleaned her dishes and put them on the shelf, cleaned out her litterbox and put it and the nearly full bag of good quality litter and the liner bags in the community room of my apartment building. There are many low-income cat owners here, so I'm sure someone will want it. I kept her carrier and other things. We're going to donate the unopened cans of her kidney-friendly food to Doney, the local charity vet service that does what it can with what it has. They were able to help us get her subcutaneous fluids and taught us how to do that for her every day at home. I'm also going to start a list of good memories with Jason. We've been doing that all day, between the pain. I want to remember those things well.

I think I've been a little bit judgmental of peoples' attachments to their pets. I've always been a little afraid of becoming "the cat lady". Well, tough shit. It is what it is. This is one of the hardest losses I've ever suffered, and I know I haven't hit the worst of it yet. I am forever grateful to this sweet little spirit who chose me the minute I first picked her up and she tucked her head into my elbow and melted into me. She had as big a "daily word allotment" as I do, *so* expressive, she was always affectionate, always fully herself. She cared so much about how I was, would come over and get in my face if I was at all upset, but couldn't have given a whisker about the details. She made me laugh, she wanted my company and my affection and would give it right back fully, she loved to play, even when she was too old to stalk and jump anymore. She never once bit me or scratched me on purpose or hissed at me or anything. She was the sweetest cat who ever lived and I'm not the only one who thinks so. She was beautiful with her soft gray and white tuxedo, perfect little white boots, funny "x" in her right ear, and pretty green eyes. She was beautiful in her constancy and her sweetness and her self. I hope, if there is an afterlife for cats, that she gets the extra-special best one EVER, to reward her for all she's given and all she is. I hope she got to run up to someone she was excited to see, with her tail quivering straight up in the air, her ears perked up, and the very Nuala "mrrrrrA?"...

I love you, Nualita, my sweet kitty!

Pretty Oganized Drawers

2008-02-13T17:03:00.000-08:00

Slow but steady progress is happening here in my crowded little studio apartment. I have gone through all of my clothes, all of my shoes, all the drawers in my dresser, and my pantry shelves. I have gotten rid of a lot, and I *love* the pretty. There's something about a well organized space that is just yummy. I think this is going to be a long hard first pass, though. I am getting rid of a lot, but not enough. I'd so over-filled my space that there were things neatly stacked or shoved into spaces that I could cover up and hide but not truly put away. Now I'm getting it all diminished enough to put away, but it's still not really less, nor nearly functional. Breathe, breathe..... whew. Ok, so I guess I just keep plugging away.

This photo is of my newly organized drawers. ;) I used to keep them this way all the time. I want to paint that dresser a shiny black with some kind of cool detail - maybe just glass knobs or something simple. My urge is to embellish everything, paint it all with designs and patterns and colors, but there is enough chaos in my small space. Function first, then I'll decide on the design. Yeah.

Now I'm going to try to calm the dizziness that's been building this afternoon. I can do a little here, a little there as I'm able, and if I don't give up, things start to look different, more possible.

By the way, I'm suddenly also feeling so much more open again to possibilities with giving. What are your favorite ways to give, or organizations to donate to, volunteering that you find meaningful?

Nostalgia

2008-02-11T13:38:00.001-08:00

I have been getting really, really nostalgic lately. My dad sent me photos I'd never seen before of my 4th birthday party. Wow... I've never seen photos of me or my family from that time. I joined Facebook and suddenly found myself back in touch with friends from my childhood in Ecuador, some of whom I hadn't talked to since I left when I was ten! The usually inactive listserve from the international school I went to in Quito has suddenly sprung to life and they are waxing wistfully about what they miss from those days. It is all so very vivid to me, and somehow unfinished, like so much in my life. This weekend I also attended a rehearsal of a Scottish folk band that I am friends with (yes, all seven of them, to one degree or another), and OMG did that hit me hard. I deeply miss the Scottish Gaelic music, I miss singing, I miss playing my instruments, I miss being part of a musical entity, I miss being challenged (they shoved a set of bongo drums at me and said to play along if I wanted to and I really dug it - new experience, drums). ...and I miss community.

Being sick can be very, very isolating. You have to be consistently proactive about staying connected, which is hard to do when you're in pain and exhausted and overwhelmed to begin with. I think people genuinely care, but as a situation goes on long enough to fade from crisis to chronic, people have to get on with their lives as well, and you have to figure out how to live the "new normal". (Not to say that many wonderful people don't go out of their way, too!)

I have realized this about nostalgia, at least when it is deep and prolonged - it is a sign to me that I need to do something about what's missing in my present and future. The past is so much more colorful and was so much more hopeful. I think grief is important, but I also, in a different arena, need to find ways to live a life now that is rooted in the present and reaching forward as well as being connected to the past. It takes a lot of creativity to find ways to live the life I want with such drastically diminished resources. I am continually working on figuring this one out, partly because my situation continues to evolve... which is happens in life generally, I think, it's just exaggerated with health issues. I have been stuck for a long time by the fact that I couldn't imagine a life I actually want under these circumstances.

I think maybe instead of trying to find something I want (and ending up in frustration and despair), I need to figure out what things are who I am; my values, my interests, my gifts - and then how I can live those things out now, how I can fulfill those things in some way, and maybe the desire will follow. I have to face down the grief to do so, but I'm trying to set that aside to deal with as a separate (though current) thing. The other thing I'm finding really important, maybe most important, is to find ways to give. I know I need to not overextend myself, but there are still things I can do for others, and that is part of living who I am and using my gifts, too. There has to be purpose, some kind of meaning - and if I can't see it in my health situation, I can find it in something completely different and focused outside of myself. (...getting tired of that anyway!) I think giving, in whatever ways, also very neatly brings it full circle - I can't think of a more wonderful way to reach past isolation and find connection.

Now to figure out the specifics... hmmm...

What the???

2008-02-06T15:39:00.000-08:00

It's been a surreal week so far here at the Market. People in my building are pulling their hair out, rumors of excess drinking, panic attacks. I understand entirely. Some mysterious person/restaurant/store is doing some very loud drilling in these concrete walls, and Market maintenance doesn't even know who it is. They start early in the morning, and continue frequently but sporadically throughout the day. zzzzZZZZZZZZZZ! It's like a dentist drill, but in your apartment instead of your tooth...every day this week. I had a dream that the restaurant below me was installing a fire pit in their new "turkey room" (??) and I fell asleep in there after telling the hostess that we really needed to be notified when they were going to do that, and how long it would last. She escorted me out, and I had to sneak back in to get my glasses and shoes in the turkey room. I woke up for real, disturbed not so much by the drilling as by the sound of the radio from the construction guys on the roof across from my closed window. No, please, I really don't want "Dream Weaver" going through my head all day!
(You're welcome ;)

Last night was maybe the oddest thing I've seen at the Market (not including people and their behavior) - Lance and I were walking up the block back to my building after dinner and saw the most inexplicable scattering of doll carnage in the middle of the sidewalk, at 9:00 at night. I had my camera with me and snapped a few shots, while Lance kept asking, "What does it mean??"

Damn it Damn it Damn it!

2008-01-31T13:07:00.000-08:00

I feel cursed. I keep trying to find some outlet where I can be creative, productive, make some kind of progress and feel like I'm foiled at every attempt. My hand has been hurting badly for some time and recently has gotten much worse. Now my Dr. said that I have micro-tears in my ligaments. Or tendons. Anyway, it's bad enough that my fingers are bending sideways and the pain is making it harder and harder to do basic things. Like typing, but how many things do I love to do that I need my hands for???

I have taken so much hope in these things since there's so much I can't do with the rest of my body so debilitated... playing instruments, doing intricate creative things, artwork, cooking, taking photos, writing, typing, even reading a book! I'm getting so superstitious at this point, I'm afraid to sing for fear my voice will suddenly go away forever. It is so mind-bendingly difficult to see and feel so much potential get pulled out of my reach, torn out of my arms. Not just potential now, but things I thought I had, things that brought me joy or solace or fun or healing... who am I without these abilities? Am I supposed to learn something? I find that cruel and annoying. I keep re-directing my energies and vision and keep being met with loss. Nevertheless I learn.

So what is solid? As long as my brain functions I have will. I can choose amongst the options present. I can find ways to be grateful. I have a heart that somehow continues to love. I have the ability to imagine (no small thing, that). I have relationships. I will always have had my experiences. The smaller my scope, the more I know who I really am, because I am not those mutable things. They are expressions and joys, they describe who I am, but they are not Me.

And I am not alone. Most people face this at some point in their lives, to some degree... many more than I have...

Still, though... damn...

The Plan to Do What I Can -starting at home...

2008-01-30T23:18:00.000-08:00

I just got rid of the rug in my living room that I've had for ten years. It was a nice enough rug, but spot-cleaning it was not enough and I have reached a frustration level in so many areas of my life that I am feeling powerfully ruthless!

I sat down the other night and wrote two lists. One was titled: "I Would Feel Better" and I listed a million not impossible things - from tuning my instruments, to getting on a regular sleep schedule, to keeping donating in my budget no matter what, to singing a song every day... and things that are small but bug me, like dusting behind something, or cleaning and better organizing my jewelry, or big things like re-organizing my space and getting all my art stuff out of my friend's storage unit. It is a good list. There are things I can do right away like "make a cup of tea", and "open the curtains", and "read something out loud that's not in English". I suddenly thought of "DO with what you have". I don't! I fret over how crowded and difficult it is to get at my stuff to do anything with it. This spawned my second list.

List #2 is titled, "How I Would Like to Live In My Current Home, with My Current Things"(mostly, anyway). I made a paragraph about how I want my kitchen to feel and function, and moved on to every area of my apartment, and the things I want to be able to do. I ended it with how I want to feel when I walk in my front door, and what I want to be able to do in my home. Right now I have so much *stuff* that none of it is really being used and I sit here aggravated and frustrated and unmotivated. When I suddenly had this clear, specific vision of what I want, the whole picture of what I want, the path to that vision became much more visible as well, much more possible.

Of course the irony of my life kicked in and this week has been one of much more intense pain than usual, more debilitatingly so... Great - motivated, but resources diminished. THANK YOU SO MUCH. I know what to do though, after casting about in frustration for a bit. I remember this drill. Narrow the scope. Keep the vision, diminish it to the possible. So today when Jason came over to help me give my kitty her subcutaneous fluids, he helped me get the rug out the door (it was too hard for me to clean and kept bunching up under furniture and my cat is now often missing the litterbox). Rug gone. Institutional linoleum floors instead. But they're cleeeean! I went through my pantry shelves and got rid of things that are expired, or things I know I'm really not going to eat, or things I have several of that Jason could use in his sorry little empty kitchen! My bounty is suddenly visible instead of a messy crowded set of shelves that made me lose my appetite. Garbanzo beans! I'd forgotten I had those. Nori - I haven't made miso soup for ages! This is what I want to do with everything. It will need to be on a big scale (I truly have enough in this studio to fill a four bedroom house). I am genius with space, yes I am, but this has exceeded capacity for more than just storage. I want function and room for joy, if it should ever want to make an appearance.

And On And On And On It Goes

2008-01-25T13:07:00.000-08:00

After the frustration sinks below the surface, this sculpture expresses so much of how I'm feeling right now! Aurgh, it never seems to end.

So after all the anticipation and painful drama of the testing, I got a call from the physician's assistant (not the dr. himself) to tell me that my tests results were "mildly elevated", that they think I might be cycling, and that I should go off the estrogen again and wait two more months again and do more testing. More.

I think they're right, I am cycling, which happens with Cushing's - the hormone production can go up and down and symptoms can rage and then nearly disappear. It's a slippery little bugger. Nevertheless, it is pretty clear that the Cushing's is back again. The doctor told the p.a. that "with a little more positive test results (he'll) be ready to move forward". ?!?! I asked about the other recent positive tests and she didn't know what I was talking about, even though I'd brought that information in to my first appointment with them a couple of months ago. Lost the records. I was so, so frustrated.

I saw my primary care physician yesterday, my wonderful doc who has been with me since before the first surgery. She looked as disgusted as I felt when we were talking about what the neuroendocrinologist had said. She said that whatever I do, I should stay off the estrogen indefinitely. I also can't go on the medication that may help with symptoms as it would also interfere with whatever tests we still have to do. Then she layed out three choices for me: wait two months and do more testing with the neuroendo, go back to the endo who was so dismissive and arrogant towards me but had said "we don't need to re-invent the wheel, we know what's going on here" (and wanted me to have radiation), or I could go to a completely new endocrinologist for a third opinion. She said I'm entirely within my rights to do so for a surgery that serious (another pituitary surgery or a bi-lateral adrenalectomy). Ugh. My friend Tasche said it was like "The Price is Right" in HELL. Pick a door, any door. Today the trapped feeling has subsided to discouragement. I am still moving forward, though it seems on a journey with no end. I think I am going to wait two months and do one more round of testing (this time it won't be as extensive, thankfully!) and if the neuroendo still wants to wait and test, I will decide between the two other options. More waiting, more enduring the state of things.

I feel like I'm waiting with my cat, as well, having been told she has probably a couple of months to live. I have actually been encouraged a little bit with her. She is adapting to her lack of sight, learning to find things by listening and smelling and feeling her way around. She *really* perked up after she got some subcutaneous fluids and she loves her new kidney-friendly food. She is "talking" to me a little bit differently, too, maybe trying to communicate more now that she needs more. I'm cherishing every minute.

So enough with the drama already! Time for some fun things or interesting non-medical things, please. Hmmm.... I need to do some scheming in that direction, I think.

Trying to Make the Impossible Fit in My Head

2008-01-18T17:23:00.000-08:00

The vet called today with test results. My little cat has chronic renal failure. It's bad. She's seventeen years old and teeny-tiny, and they were talking like there isn't hope. I can't fit it into my head. I keep bursting into tears. She has been there for me in ways I never expected and cherish with all my heart. So I told the vet that since she is still active, moving around and talking like she always has, eating and drinking and using the litterbox (when she can find it!!), and regularly content and comforted and purring in my arms, I am not ready to give up on her. There is much to be done and it is very, very hard as I struggle to take care of my own daily necessities, but it really is the least I can do for her. I struggle with guilt for not having been able to get her to the vet earlier, more frequently. She is loved, has been so as long as she's been with me. I have to trust that she will let me know when she is done.

These thoughts feel like more than I can bear. I won't eulogize her yet though. Silly kitty, interrupting my pity-party with a crisis of her own. Sheesh ;)

Done for Now

2008-01-15T17:37:00.000-08:00

Done for? Well, maybe not - but I'm finished with this round of testing as of this evening - YAAAY!! Just got the MRI finished, and this time they didn't miss the vein and send contrast dye burning through my arm, so even though I needed a chiropracter by the end of it, the experience was better than last time! Sooo.....now I wait to hear the results. Somehow I'm still not done with appointments this week, though. So many doctors!

My dear little seventeen-year-old cat has decided that now is the perfect time to have a health crisis of her own, and I'm finally going to be able to get her to the vet this week. I'm amazed at how little help is available for low-income pet owners, even as far as just setting up payment plans! I finally found a place, with help from a friend, and there is much hoop-jumping involved, but it's worth it for her. She really is the sweetest creature ever. No, I mean it. EVER. I know, I've wandered into the crazy cat lady territory; a cane using, enormous woman in odd outfits, anthropomorphizing her fur baby. Yep. But if you'd met my Nuala, you would know that it's true!!

Swimming Through Medical Hell

2008-01-08T14:20:00.000-08:00

Day two, it's only day two of the five-day work-up. Damn. I have a room at the Inn for tonight, the night I was told I could stay in the cafeteria and then that of course that wouldn't be allowed and evidently they thought I should sit on the sidewalk all night, needles, tubes and all. It's done though, I have a room.

It is a good thing to have a room of one's own while in the hospital. I have many times already been grateful for a place to retreat to and have my meltdown before going on to the next appointment. Not that I haven't already had my "public" meltdown. **Hospital details warning here - it's going to get graphic: Foleys. I dreaded this for many reasons, but had told myself that yeah, it'll be uncomfortable, but do what you have to do and get it over with. Hah! As if. To start with, the nurses kept coming in and out of the room without a thought to the fact that I was lying there all exposed facing the door. Nice, thank you. It was supposedly going to be "uncomfortable". It was painful - to the extreme. I have often thought something was unbearable, and been sickened and amazed at the fact that I was bearing it anyway. This was not bearable, not do-able, no matter how hard I tried to calm down. I was crying so hard I couldn't open my eyes. I'd swallow and breathe and try to stuff it all down and chill and, nope, sorry, every minute movement was unbearable. I said I was going to try to deal with the thing for the next two hours til my next lab appointment and as soon as I tried to get off the table, that was it. Couldn't do it. So now I get to try to accomplish the same, um, sample gathering, with a technique that is far from accurate and actually is injuring me in the process. But it's bearable. That was part one of the morning of medical hell, already a couple of hours long. Next I was sent into a neighboring treatment room to have a central line, or picc line, put in my arm so that they can do the gazillion blood tests this week without stabbing me anew each time. Sounded like a good idea. I had a picc line when I had my brain surgery three years ago and it was fine. ....nope, this was HELL DAY. It took over *two hours* of digging and pulling and shoving and horror before it was done. She said it was unusual for me to be able to feel it all the way up my arm and into my shoulder. Yeah, every.single.movement. The pain was as excruciating as the arterial stick they did when I had a heart catheterization done from my wrist. Uncontrollable yelling in pain, back-arching nightmare that went on and on and on and on, getting stuck and forced and stuck and spasmed... She finally decided that maybe she should have listened to me when I told her the other arm is the one that works, and still tried on the same arm, but in a different spot. On the inside of my elbow, right where it bends. Ok, that's a good place to have needles and tubes and adhesive tape that I'm allergic to. She finally ended up using pediatric equipment, which was still very painful and uncomfortable, but again, bearable. I spent much of yesterday shaking and unable to get warm, in shock from the morning's stupid hell. It really didn't need to be that bad. **end of the worst of the graphic part**

So - now I'm doing a gazillion blood tests every four hours of the day and night, collecting all sorts of things so they can measure hormones in every different way and at all different times, and tomorrow I have a CT scan of my adrenals. Monday is the MRI of my brain, and then they will call me probably on the afternoon of the 22nd to talk about the results.

I've met three other Cushing's patients here. Two of them have already had two surgeries and still aren't ok. The other one hasn't had any yet. It is grim, and my health seems to be far worse than theirs, though I'm significantly younger. One of them, I'll call her New England, is *so* in your face - she's done this before, uses the nickname "Cushies" to describe patients with this disease, and is intent on bonding. Very, very intent. She wants the "Cushie Camp" experience, and talks about our neuroendocrinologist like he's the leader of the cult, and I'm expected to join with the other followers and ally, bond, worship, fawn. Sorry. It's funny to see, she is very active on the boards on the Cushing's website evidently - I've never dealt with this kind of thing before. It sort of reminds me of other nerdy obsessions like Star Trek and anything else you have conventions to go to to meet your online fellow-obesessors, but this is sick, literally! This disease is not who I am, it is not my life. It has taken over my life, and it has a dramatic effect on me, but it is a separate thing. The other one who is local and pre-surgery is more quiet, we get along really well and have exchanged email addresses. I like her husband, too - he reminds me *so* much of another good guy a friend of mine is married to. She's lucky to have him here with her while she navigates the whole thing. Wish I had someone to carry stuff sometimes - try balancing a cafeteria tray of food while using a cane and having balance and coordination issues.

Enough of this for now. I'm finding ways to escape, things to look forward to. Thursday I get to be at home and just taking pills at appointed times - hurray! I'm going to go get a bowl of Pho, and I'm unreasonably excited at the prospect. Friday afternoon I will be finished with this week, all tubes and things removed, and I am going to enjoy being physically unfettered by medical detritus. And I am going to snuggle my cat until she decides she's had enough. Aaahhh, what a relief. Pre-emptive relaxation; yes, please!

Here We GO!

2008-01-03T13:21:00.000-08:00

Thought I'd post a graphic I found of (only some!) things that happen with Cushing's Disease. It's almost correct - I think it's actually of Cushing's Syndrome, which is the same thing I have but caused by an adrenal tumor or something other than a pituitary tumor. My tumor is in the middle of my head, base of my brain, wedged between the optic nerves, in front of the spinal column and right by a big ol' artery. This graphic kinda cracks me up. I love how sensitive the medical people are, coming up with terms like "Moon Face" and "Buffalo Hump". Niiice. Goes right up there with "Morbid Obesity". Oh, and "Emotional Disturbance" - love that one; ya think??

So I feel like I'm on the part of the rollercoaster when you've slowly cranked up and up and up and up the steep giant hill and you're curving over the top staring a the impossible drop and loops ahead... everything is getting set up now for my week at "Cushie Camp" (iw, hate that nickname), a five-day work-up to see what the landscape is with the tumor and cortisol production, etc., this time. They don't have a room for me Tuesday night. The doctor actually said, "maybe you can hang out in the cafeteria all night or something". Right. All day testing, all night up, all next day appointments too... after days already... and I'm having a hard enough time coping with every day life in my apartment! Oh, this is going to be an interesting year... Here-we-GO---

Jason will visit me, and has offered to stay there with me hanging out Tuesday night, and Wednesday day if he can get off work. Seumas gave me a posh little travel bag of Arbonne skin care products so I can have a wee spa while I'm there. I also have a stack of Gregory Maguire books that will hopefully last the week... might have to supplement that. I'm going to have to check about internet access... I also was reminded that there will be other Cushing's patients there doing the same thing. I've never actually met another one before, so that could be really cool. Might make a new friend or two.

(rather hide under the covers and make it aaalllllll go away!!!)

Boxing Day

2007-12-26T12:56:00.001-08:00

December 26 is always a weird day. Leftovers, emptiness under the tree, stuff to try to integrate into our lives. As a kid I always felt a little forlorn, even as I enjoyed the shiny new whatevers - there was always some kind of disappointment, and the loss of the anticipation that was half the magic of Christmas. As an adult I get really, really impatient to get things back to "normal". Too much crap in my too small space. It's still pretty though. This photo is the big present I got for the bf this year. It's been on his geeklist forever - a DAS keyboard. I have to stretch to understand why he's so excited about it, but it was really fun to see his face.

Things won't get back to "normal" this time. In a week and a half I will be in the hospital for five days of grueling tests, and then when those results are back we'll know which surgery option to take, and then the "normal" that I've become accustomed to will disappear forever. I wonder what the new normal will look like? I won't know for a long time. Trauma feels normal to me at this point. 2008 is going to be a bumpy year.

Well, in the spirit of Boxing Day, I will thank those who have been such a help to me in 2007; my helper, who manages to communicate with me fairly well even though I don't speak Tigrinya, and always leaves me feeling like I can breathe in my apartment again... my primary care physician, who has been with me since before my first brain surgery and has always cared about my health and well-being... my therapist, who is the reason I'm still here even when things look the most unbearable and doomed... my friends and family, so many of whom have been there through thick and thin (literally!) and given me practical help (rides, help with medical bills, meals out) as well as crying and laughing with me... and my boyfriend, who has walked this journey with me, still calling me beautiful when the Cushing's has changed my body so much, still by my side when the future promises struggle, still calling me into relationship when I just want to hide under the covers and never come out again. Thank you, all of you, for the beauty of your lives, your selves. ...and for hearing the sincerity of this without losing your lunch or getting cavities! ;)

A Long Dark Night

2007-12-07T03:34:00.000-08:00

It's 3:34 a.m. and as usual, I can't sleep. I've been avoiding writing in this blog for months. It's the same in my journals - the more that's going on, the less I write!

So here's the basic scoop: the Cushing's Disease is back. My health has taken a major dive in the last several months, after a slow deterioration for a year before that. I had so many hopes that the brain surgery three years ago was the end of the Cushing's along with all the damage and decline associated with it, hopes that the life I'd held on for was going to finally be possible... I am saturated with grief. Right now I'm in a holding pattern as I wait to be off certain medications so that when I go in for a week for testing in January it will be as accurate as possible. After that we'll know what the best option will be - one or more of the following; another brain surgery, having my adrenals completely removed, and/or radiation. All of it is terrifying and involves a lot of risks and misery. Some of it is devastating, none of it looks hopeful to me. I'm tired. This has been a marathon that seems to have no end.

So this holiday season is a tough one. I'm trying to understand how one can manufacture hope when it seems unattainable, what there may be that I believe in that is something I can hold on to, that will somehow sustain me through this... and through what's on the other side of this batch of awful. I don't know. I overheard someone mention the U2 song "Grace" and downloaded it the other day. I ended up in tears without fully understanding why. I haven't thought much about grace. The idea reaches deep into the heartache and I don't know what to do with it, don't understand it.

I wonder if maybe grace covers what hope can't find.

Delightful Interludes

2007-07-05T21:12:00.001-07:00

I just had a typically wonderful evening with my friend Lance. Somehow we almost always manage to find something fun to do, or a pleasant place to be, or humorous adventure to have together. We started our Thursday evening get-togethers under the auspices of practicing speaking Spanish. Just about the only thing left of that endeavor is one of us calling or emailing the other to say, "It's Jueves!!" and plan our evening's setting.

Tonight we ended up at our new favorite place for Ethiopian dining in Seattle - Tagla Cafe. We've been to a good four or five Ethiopian restaurants in the city, and both agree that this place is the best. They have wonderful food, and the most friendly staff. The owner just about fell over when Lance greeted him in Amharic (thanks to some extended time in Addis during his late teen years)... now I've even learned how to say hello and thank you - Amesegënallô! Afterwards we went to the Chocolate Box, an amazing place recently opened on Pine Street, dangerously close to where I live. They have every kind of gourmet chocolate confection possible, a coffee bar, a pastry counter and gelatos! My only complaint is that all of their seating is bar stool height. They are open late and have sidewalk seating, though, perfect for a breezy summer evening after a hot day. We had a gelato and iced coffee (decaf for my insomniac self) and it was the loveliest end to a Jueves with Lance.

Happy 4th of July

2007-07-04T16:52:00.001-07:00

A Piece of Pretty

2007-07-03T16:56:00.001-07:00

There has been a lot of pain and fatigue in my life lately, but some beauty as well. I've been taking a moment here and there to play with the camera I got for my birthday. These are two photos I took in the courtyard garden my apartment opens into... some of the beauties of summer...

Take Me Away!

2007-06-27T17:08:00.001-07:00

I think I need an old fashioned sanatorium. You know, the kind of place 19th century novelists mentioned where people went to rest and take in special water and air to recover from nerves or consumption. I have an image of someone in a chair with a blanket over their legs, reading outside in a mountainous area, while someone dressed in a white nurse/nun outfit brings them a glass of water on a tray. I guess now they call them "spas" and you pay lots of money for gourmet diet chefs and acupuncture and daffy new holistic water torture things. Not that I wouldn't totally go for that, too!

I've been doing lots of things lately, more than I should, apparently. My body keeps shutting down when I try to force the issue and do more, more, more! Maybe I can find a way to shut out the ambient city noise and turn off all the things in my apartment that ring and beep and find the time to nap and read and take long hot showers and nap and read... my own personal sanatorium/spa... do-it-yourself style. Not quite the same, but maybe it will work. What do you do when you've pushed yourself way beyond your limits?

Birthdays

2007-06-25T10:34:00.000-07:00

So now I'm 38. As usual, the number means little to me. Numbers stopped making sense somewhere around 22 or 23 . Since then I've sort of stood by vaguely baffled, watching them roll past. I realized I subscribe to the spanish view of it all - "yo tengo 38 años" (I have 38 years) - as opposed to the english perspective, "I am 38 years old". The number to me refers to what I have, not to who I am - age is not my identity. I also tend to remember what Eddie Clayton told me when I expressed shock at the fact that he was 17 - something I discovered after he kissed me (I was 19). His words echo in my head still, "It's only revolutions around the sun, baby". So there it is - my entire reaction to turning thirty-eight is pretty much: "Hm."

That being said, birthdays rock - especially with a boyfriend like mine. He decided to make it a birthday weekend, so I've been catered to, given flowers, and celebrated for two days already. Woohoo! Not to mention a fabulous evening out with friends last night at Ipanema, our favorite local Brazilian grill. Yum.

Third Sunday in June

2007-06-25T10:33:00.000-07:00

I called my dad today, suddenly remembering that it was Father's Day and I hadn't gotten him a card or anything. He wasn't home and I was kind of relieved. I left a message with all the proper greetings and hung up, feeling slightly queasy about it. Who doesn't have ambivalent feelings about their parents on some level? I know I love him whether I feel it at the moment or not, so it wasn't a lie... I guess what felt wrong was that there is so much unresolved in my relationship with him, and the message sounded like that isn't the case.

These things I think of when I think of my dad: His tall, and large presence in a room and in my head. The promises he made and kept, and the ones that he didn't. My confusion about the adventures he lived and the ones he avoided. My confusion about his feelings for me. Yeah, confusion is a huge part of my dad consciousness... My mother once told me that he "hates intensity", to which I said, "well good luck in this family!" There are so many questions I haven't even asked him in my head, largely because somewhere deep inside I want to be easy enough for him to like.

These good things I remember about my dad: A long conversation I had with him about growing up in Chicago during World War II while he stirred a giant pot of his favorite tapioca pudding. Him bringing me a spare set of keys in the wee hours of the morning when I'd locked myself out of the car - and not even being annoyed with me for doing that or calling for help. Watching him enjoy my friends at a ceilidh and deciding not to take a photo because he didn't want to ruin the moment. Cashews, pecan sandies, waving handkerchiefs, a baffling record collection...

I hope he and I can somehow be more open with each other in whatever time we have left, especially about the hard things. I'm glad there are good things, too. I do love him...

I'm glad I left that message today. Mostly.

Snapshot

2007-04-06T23:44:00.000-07:00

Jason and I went out for gelatos tonight at Bottega Italiana, a great little gelateria here at Pike Place Market on 1st Ave. It was the first warm day of Spring, and everyone seemed to be out in their new summer clothes. A long "line" was forming across the street in front of Showbox for the Floater show - more like a dark-color-wearing, hip or trying-to-be, vaguely linear mob. Their unruly noise occasionally coalesced into chants. Whatever. There was a guy drumming on the sidewalk, but I don't think he was going to the show, just part of the street tonight.

It's been awhile since I've enjoyed my neighborhood at night. Living downtown can be interesting, but not so full of locals at night. It's typical of most big city downtowns at night; people with money going to and from restaurants or entertainment venues, and people without money trying to get some or find their way through another night. This felt different. There were those disparate elements, but it felt like my neighborhood does during the day, minus hoards of tourists or business people on lunch breaks. We sat on the couch at the Bottega, enjoying each other and yummies and people-watching, and all the colors of the evening pass the open door. A reeeally cute young Korean couple came in and shared each others' icy treats. OMG they were like something out of "Rooftop Room Cat". I love Korean telenovelas!!

I've had enough sugar and caffeine to keep me up most of the night, but it was fun to be out in the fresh warm air... I'm still glad it's supposed to be cold and rainy next week. If it were up to me that would be about the right balance - one or two days of warmish sun and the rest chilly and at least cloudy... with the occasional mist and spatter. Ok. I'm off to bed now.

Fire and Lightning

2007-03-26T22:41:00.000-07:00

I just nearly set my apartment on fire! I was microwaving dinner, a lazy frozen option - set it in the oven for the four minutes as directed and went back to watching television. At some point I remember vaguely thinking it was too long and wondering if I'd entered forty instead of four minutes and foolishly dismissed the thought. The next clue was the horrible awful smell. I caught it at almost twelve minutes, smoke swirling around the microwave - yikes!! I was sure the detector would go off, but it never did. The stench was terrible and even with windows open and fans running, it still is. I'm so lucky. I drowned the mess and then tied it up in a plastic bag, cleaned out the smoke-stained microwave, and still the stench. Oy vey. Somehow I've lost my appetite. Don't know how to get rid of this smell!! Anyway, here's the public service announcement - ALWAYS double - check the time on the microwave and don't walk away from cooking food!

That's twice I've had close calls recently. Last week I was sitting at the computer during a seemingly gentle rainstorm when there was a sudden flash and a jolt like I've never felt before. It felt like the air was saturated with electricity, like you could breathe it in, and I felt it travel up my right arm and into my chest! A second later there was the most terrific bang I've ever heard, and all the alarms in the market started going off. I called Jason, who had been awakened by the thunder twenty blocks away. He thought his lamp was going to explode when it flashed. My electronics are plugged into a surge protector thankfully, so things blinked but don't seem to have been affected. My chest hurt and my arm was vaguely numb and tingly the rest of the night. I didn't connect it at the time, but that night I also had the worst migraine I've had since before the surgery nearly three years ago. The next day my neighbor two doors down said he saw a blue flame flash across his wall and thought there was a car bomb. I think our building must have been struck!

Here's to close calls that only result in dramatic stories!

And the Grand Prize Is...

2007-03-19T18:59:00.000-07:00

What a day it's been... not much sleep last night thanks to some pretty severe dental issues that have left me with a fever as well, a rough start to today. It's been rainy and cold, usually my favorite, but not so much when I'm already under the weather, so to speak. I went to my doctor's appointment at the clinic here at the Market under the aggressive rhythm of the helicopters watching the protesters here downtown for day two. My troubles pale when I think of the wars around the globe and all who suffer amidst such conflict. Still, I find enough to complain about here. I was weighed like I usually am and have gained more in the last six weeks than I have in that kind of time period since the tumor was taken out - I'm back up to 392.2 pounds. I sat in the office crying after the nurse left. Numbers don't scare me, but all the numbers together pointing to the return of Cushing's does. I don't want to watch my health deteriorate for reasons I can't control again. I don't ever want to weigh over 400 pounds again, it's hard enough now. I'm so discouraged, and in pain, and exhausted. Tomorrow I have to get on a bus and go get the MRI of my brain. Hopefully I won't still have a fever and it won't still be raining. Kinda wish I weren't going alone, but there it is. I told my sister something last week that keeps echoing in my head. It made her laugh, anyway... "You know, the first time brain surgery was all dramatic and exciting and everything, but the second time through it's just really annoying." Yeah. This is not the life I wanted to live. So is this the challenge I have before me? I am not able to live a life as full of love and adventure and beauty and service and growth as I always knew I was capable of... at least not in the ways I've always desired and dreamed about and *seen*. Is this my challenge? To find the ways to be truly Who I am meant to be despite and including this thief of a disease? It's certainly not what I want.

Ghosts

2007-03-15T23:15:00.000-07:00

I stopped at an antique store here at Pike Place Market today. It's one of my favorite places to wander around in when I have the time and energy. I like the pretties, but it's the stories that float around the objects that draw me in. I usually breeze past the jewelry cases, more interested in the odd objects that have survived the years, an eye out for books that capture my breath or an inexpensive beautiful handkerchief to add to my mother's and grandmother's collection.

Today I lingered by the jewelry case, struck by a beautiful wedding set, and then another and another. I realized as I read the tags and all the dates that the women who wore these rings had probably all died recently. Ring after ring, anonymous in a case in a store. It felt so poignant. I thought of the women in their youth full of dreams for their future, setting up their new married lives, spending lifetimes with these rings on their fingers every day, more a part of them than any other object in their lives. The saddest part to me was that these rings were not cherished family heirlooms now, passed down from one generation to the next. The antique store is full of things like that; someone's family photos, someone's ancestors, anonymous and up for sale. So many people whose lives those objects passed through!

I bought a book, a beautiful big children's book from the 20s for only ten bucks. It's full of illustrations and all sorts of stories and songs, the kind of tome that is never published for children today. I find myself wanting to curl up with a blanket and some cocoa and read a lot, imagine the hope and innocence and imagination that was possibly nurtured in children who read that book over the years. They're probably dead now too. Ah, well...

Hmmmm...

2007-03-15T23:00:00.000-07:00

Trying to brainstorm here, try on some possible visions for the future... I think I would really love to do something involving people dealing with cross-cultural situations; adjustment or re-adjustment to this country, debriefing kinds of things where I could help people through the process- either people from here coming back after service or extended time somewhere else, or even better with refugees or other immigrants trying to find their way in this new country, maybe with businesses or churches or relief organizations? I think I would enjoy teaching ESL, but the best part for me would be serving as a bridge and a resource for people maneuvering their way through the cultural and psycho-social challenges, moreso than the linguistic aspect... though I definitely enjoy that as well. I think these are things I could be good at and have an interest in anyway, and I could maybe be of value to others. If I'm ever not disabled anymore...

So in the meantime, what? I write, commit random acts of song and artwork, slog my way through the medical establishment and try to leave people better off than I encountered them? (And try to scrape myself together again when I find myself shattered all over the sidewalk...)

Wishes

2007-03-12T23:13:00.000-07:00

I've been thinking a lot lately about what I really want. I keep getting accused of being vague by certain friends of mine, and I realized that part of it is that I am not clear myself. I think I have become stuck in this place where I want what I can't have, in so very many ways. My life has not been what I thought it would be, what I wanted it to be. I've dealt with that before by not paying attention to that fact and trying to adjust my expectations to the realities at hand. What I've discovered is that I only post-poned a grieving process that now has a grip on me. I think I would have some sort of hope of getting un-stuck if I could envision a future that I actually want, but I don't seem to be able to do that! Not one that I want that there is also a realistic hope of attaining. I hear my friend accusing me of being vague again.

Ok. I had a vision of my life that included eventually being fit and healthy, relatively pain free and physically able. I saw myself as a married woman, in an amazing relationship, with a family, in a community of faith, with work that had purpose and where I would be using the abilities and passions I have. I did see that! I saw myself in an international context, growing and deepening and maturing through different roles in my personal life and within my community. The possibilities I actually see before me now are grim, and the losses of the vision I had are devastating. I don't know how to get to a point where I am hopeful about my future. ...and I am so very, very, very tired of living the life I have.

So back to that life... tonight I will take the first of two tests to measure my current cortisol level, and tomorrow I will hopefully be setting up an MRI of my brain. There appears to be a possibility that Tumor Tom (that bastard!) may be making a re-appearance. I really wish I could be planning something entirely different. Forget the life I have...

In my random fantasy life, tonight I would be getting to bed early so that I'd have time to finish packing tomorrow for my trip to Ecuador and then to Argentina to sing with the Gaelic choir in Buenos Aires! That sounds much more fun to me. *and* I would have plenty of money for these adventures thanks to proceeds from my artwork and album sales and workshop fees and books and articles... and I would be taking my beautiful iBook to send updates along the way =sigh=... and I'd have *fabulous* things to wear on my fit and healthy body as I trekked my way around the southern latitudes. Yep. ...and to dance in at Tango clubs in Buenos Aires... and energy to do all of these things with joy and elan! Woohoo!

Ok, time for the midnight salivary cortisol test. Ugh.

Another New Number

2007-01-08T11:00:00.000-08:00

I can't believe it's 2007. I can't believe I'm 37 years old. It just doesn't fit in my head! We keep spinning our way around the great burning orb and somehow that carries us from birth to death... I can't seem to grasp it. So I shake my head and move along with my day, tick-tock. There is an odd comfort in knowing that it's all wildly absurd, that we manage to survive as long as we do, walking bags of water with sticks inside that we call bodies... there is a silliness to the universe, I think. Or maybe it's just the medication I'm on today...

Some people do this all the time!

2006-10-30T16:07:00.000-08:00

J. and I celebrated eleven years together this weekend. It was lovely, highlighted by one of the best meals I have ever had. We went to a french restaurant here in the Market called "Campagne". I'm sad to say that I've lived in Seattle for twelve years and at the Market for eight and have never been to this well-known establishment. I'm so, so, glad we finally got around to this experience!

We got dressed up, declared each other handsome and beautiful, and walked the block to Campagne. The entryway is sheltered in a quiet brick-paved courtyard. The air was brisk, the lights were magical as we walked by the murmuring fountain to the door. We were greeted by warm soft light, our coats were taken, and we were shown to a table in the intimate dining room by our host. I was a little apprehensive about negotiating my way through the tables and chairs with my cane (and my...largesse), but all was handled deftly and we were tucked in and swiftly met by our waiter. He was an older gentleman, good at his job, quiet, made good eye contact, sized us up quickly. We were given lovely little herb cheese pastries to start, so yummy!

It took forever to decide what we wanted, even though we had previewed the menu on the internet when we'd made our reservations. We finally decided, and then got to meet the wonderful sommelier. There was a man well suited to his job. He was great. We told him we normally drink reds and hadn't really enjoyed white wines, so he took up the challenge and asked us what we liked and didn't like about wine and described some of his suggestions and we chose a french one - Naick, L'oustal Blanc. He brought it over and decanted it. Wow! It was a full-bodied fruity wine, nicely spicey. I asked if it would be possible for us to keep the label and he said we certainly could and he would get that soaking off the bottle. Bread arrived, with wedges of the best butter ever. We were enjoying ourselves muchly before our meal had even really started.

Le Petit Plats arrived at the table; J. had the gratin aux oignons - a sweet onion and parmesan gratin garnished with watercress and radish salad in citrus vinaigrette. I had a delicate squash soup served in a miniature tureen with a swirl of cream. It was yummy, though I couldn't help comparing it to the amazing pumpkin soup my friend makes for his annual winter solstice banquet. I prefer my friend's, but this was lovely. Dinner proceeded at a leisurely pace, with plenty of time for J. and me to hold hands and gaze at each other across the table and all that wonderfully sappy romantic stuff. I also couldn't help but eavesdrop as the sommelier interracted with other diners around us. The couple at the table next to us gave him carte blanche, so with every course they had ordered he brought them new glasses and took them on a fascinating journey of wine growing regions and how the different wines were made and how they paired with the food they were eating. He was so genuinely enthusiastic about it, it was infectious. He stopped by our table again and asked how we were enjoying the wine we'd chosen, and placed a card on the table that had the wine labels pasted inside, and he had dated and signed it! I'm writing what we ate on the facing page and keeping that for the scrapbooks I never make.

Our Plats Principaux arrived, beautifully presented. J. had the poisson du jour - spotted white trout served with cucumber and sorrel salad,sweet Walla Walla onion purée and tarragon oil. It was such an interesting mix of flavors. He also ordered pommes frites 'a la canard - potatoes fried in duck fat! I tried one of the small discs. It was rich, a meal in itself. I had the supreme de pintade – Guinea hen breast roasted with garlic confit and carrots, served with sautéed escargot. I thought I made a mighty good roasted chicken. Mine now seems naïve and clumsy. It smelled so good I just enjoyed inhaling for awhile before I even picked up my fork. The seasonings were just right, it was roasted to perfection. The carrots were young and sweet, beautifully carmelized, and nearly melted in my mouth. The garlic was roasted to spreadable consistency, the escargot circling the chicken breast like worshippers around a goddess. I also had champignons sauvages. I love mushrooms, but these were the best mushrooms I have ever had, ever. Ever. I nearly licked the plate. By now the wine had softened, and the vanilla tones our sommelier had spoken of began to take the stage. J. and I started to lose our ability to describe anything beyond the word “wow”. We couldn’t leave without the dessert experience, so we braced ourselves and breathed and chose how we wished to die.

J.’s dessert landed first, a beautiful tarte aux pommes; plate generously drizzled with thick caramel, the round apple tart centered under a rounded spoonful of crème fraiche. It was topped by a nearly transparently thin apple slice that was somehow sugared. Sooo good. All the flavors were artfully balanced. I had the gateau au chocolat, of course. It was a decadent twice-baked close-your-eyes-and-try-not-to-moan-out-loud warm dark chocolate treasure. The perfect foil was the scoop of buttermilk ice cream on the side, and the artful circles of raspberry coulis framing the devastating little cake provided the right third accent. There was a thin lacey cookie curled into the ice cream as well, but I had no energy left to pay attention to such a thing. We ordered some decaffeinated café au lait and it arrived with two sugar lumps on the spoon, one white, one brown, and a knot of orange peel. It was dessert on its own. I am so going to do that next time I make coffee at home. Our waiter asked if I wanted a refill and I realized there was no more room no matter how good it was. We were done. He brought our check with two hand-made chocolate truffles. I must have looked horrified, because he offered to box them up for us. I thought that would be a good idea.

We managed to get up from the table, were given our coats (so nice being helped with my coat!) and walked out, grateful for the bracing chill of the night air. As we left the sheltered courtyard and the noise of the city surprised our ears, I said, “back to our real lives”. We were ready. When we opened the box later we saw that the waiter had added a couple of extra truffles. Merci beaucoup!

A Stale Imperative

2006-07-03T00:47:00.000-07:00

So what do I do when I can't blog because I'm sick of the sound of my own voice? I have spent most of my life jounaling, writing letters, notes to schoolmates, emails, phone calls, long talks over coffee, blah, blah, blah... the more I need to talk, the more I can't stand the sound of myself. A friend once told me that I have "a biological imperative to communicate". This was after I grabbed my cell phone on my way under the table during an earthquake and managed to make *two* phone calls with one hand while holding the broken table-top on over my head with the other. Yeah. I used to think the worst scenario I could imagine was to have a stroke or be in a conscious coma where I was aware but could not communicate. I finally decided that I would probably just develop amazing telepathic abilities and people would just have to learn to talk with me internally. Yeah. Still sick of the sound of me, though. This imperative has become nauseating, and stifling it is becoming less difficult, though more and more depressing. What do you do when you find yourself saying the same things over and over and over again? I picked up old journals, even the ones from early high school where my speech patterns were affected by the excessive use of the word, "like" and other silliness, and they were all basically full of the same old shit. Pain, angst, pain, drama, questions, fear, pain...... I thought I liked the person I am, but I don't like the voice I hear, the person I read in those journals over the years. Few things have changed in the 20 plus years since I have started journaling. I no longer live at my parents' house, I am no longer a virgin. Those things are probably good. I have had some good experiences along the way, but substantively, I see little difference. The biggest change I see is that back then, life still held possibilities. Even in my suicidal adolescent depression, there was still some possibility that things may turn out differently, that life could somehow not play out the doom I sensed so strongly. It has been worse than I thought. Had I known, I would have felt even more despair than I already did. So here I am, older, so much older, the same words, same struggles, stale and with fewer possibilities. Where is hope? How can I be honest with the messiness and the unattractive redundancies and still find a reason to go on through it? I know how to run from it and create something else, but it didn't make this go away when I did that before... just procrastinated. blah, blah, blah...

Riding the Bus

2006-02-22T23:43:00.000-08:00

Oh, my, it's been awhile since I've regularly ridden the Metro busses. Always an adventure. Today I got to ride the bus while going through medication withdrawl - yippee! In that uncomfortable state I was amused to meet a young guy from Boston full of questions about what to see and do here, listen to two very loud cell phone conversations, one in Spanish, one in Cantonese, I believe... and then witness a beautifully "bus" experience. It was sooo riding the bus... There was an older goth woman sitting near me, talking to her friend across the aisle about office situations. I see many of these women now, my age or older, still dyeing their hair jet black with bangs and dark red lipstick, growing up and not. As they were talking, a middle aged guy in a tye-dyed shirt next to her loudly said, "EXCUSE ME, IS THAT SILK?" She said, in a perfectly friendly voice that no, it was velvet. He then said "CAN I TOUCH IT?" and she said yes and I so knew that was not the last of it. About five minutes later he said, "CAN I TOUCH THE VELVET AGAIN?" and she said yes, but quickly returned her attention to her friend. He asked, "IS IT VERY EXPENSIVE?" and she said no not really, and he thought that was good. He had a friend, too, and they discussed in detail what they were planning to get at MacDonald's with their five dollars in coupons and six dollars in cash. I wasn't eavesdropping, I wasn't! Then he turned back to velvet goth woman and told her, "WE'RE GOING TO MEET AGAIN, YOU KNOW, IN ABOUT FIVE YEARS OR SO." She said, "Ok" as if he had said something entirely reasonable. He added, "MY HAIR MIGHT BE DIFFERENT, THOUGH." and she said "ok" again like they were clarifying their entirely reasonable plans. She and her friend got off the bus at the next stop and went on their way, he and his friend were off to MacDonald's two stops later. I was trying not to laugh and throw up at the same time, very grateful for the cold air when the bus arrived at my stop soon after. Yep. Always an adventure.

Weird Dreams

2006-02-04T00:11:00.000-08:00

I dreamed last night that I was in a multi-storey vacation home on the banks of a river, and I lived there with my parents. It was a beautiful place, filled with lovely cherished family things. I was all the way on the bottom floor, looking out the doors to the small deck over the river. Something drew me to the doors and as I walked over there, I saw silt cloud up from below the surface of the water. It struck me as odd, and I jumped a little bit, to see if I could make it happen. It did, and was alarming. I realized that the house was unstable and actually on the water. I turned around and the floor was unstable and looked down to see a large crack jagged across the room and the floor dipping oddly as water came up through it.

I ran up the stairs, multiple flights of them, and told my mother. I said that we had to get out, that the house was going to sink, and we should grab whatever we could on our way. She wasn't alarmed, and wanted to see what I was talking about. We went all the way back down again, and I ran with agility down the stairs, no cane like I have in real life. We finally got to the bottom and I said, "Mom, stop!" because she was rushing over to the doors without looking first to see where to be careful. She said, "I see it" in a calm somewhat dismissive tone, and promtly stepped on the floor right by the crack, causing it to tilt and she fell in. Water splashed over her head as the floor flew back up and the other side hit her in the head. She bobbed back up and moved the floor away from her head, saying, in the same calm tone of voice, "I'm fine". That's when I woke up, in a hyperventilating traumatized panic.

Wonder what that was about.

Christmas Pieces

2005-12-19T11:21:00.000-08:00

I think I remember when Christmas broke. It was a magical time as I remember it, and I so desperately wanted to be able to sustain the glimpses of the wonder and perfection it held for me. I remember asking my parents if Santa Clause was real. They finally said, "No, but we like pretending that he is". I understand. Crack. It was sad to me to realize that. I remember one Christmas when my older siblings were arguing and my parents were getting frustrated as we were getting ready to go to church. I remember feeling near desperate tears and saying, "Stop fighting! It's CHRISTMAS!!" I couldn't believe they would violate the sacredness of the day. It wasn't the religious sacredness I was feeling so respectful of, it was the perfection. It was the one day of the year that was supposed to be full of all the wonder and love and happiness - just that day should be perfect, anyway. Crack. I also remember the year I was eight. My older brother and sister couldn't stand each other, and instead of wrapping their presents for each other and putting them under the tree and waiting for the family ritual gift exchange (on the perfect day when the real love we felt for each other would be out in the open), my brother handed the obligatory gift to my sister in the hallway on a day sometime before Christmas - unwrapped, without even a "Merry Christmas". I think it was more like, "here's your present." She did the same back to him. I stood there shocked and horrified and hurt at the awfulness of the gesture. It was so full of bitterness and no hope. Crack, break. I guess it really wasn't Christmas that was breaking, it was my illusions about my family. I so desperately wanted there to be the love and care and peace that I believed was truly there just beyond the actual reality. Part of me still does.

There is real love and care and peace in my family, at least between some of us - most of us? There are also some cracks that have widened to canyons, and we are all grown and living our lives as best we can. I still love and have learned to hope again, most of the time... and I've re-discovered the wonder and joy of the season, after years of hating it. I don't expect perfection anymore, and in some ways I have a better delight in the beautiful bits that are for real and imagined. I enjoy the giving as much or more than the getting these days, like a good grown-up does. Every once in awhile I remember what it felt like, when the lit up tree was the most magical place in the world, and it was all I could do to breathe as the anticipation built to Christmas Eve, and the special loveliness I felt dressed in velvets and patent leather shoes singing the nicest music with everyone all together... Those pieces are still wonderful to have with me now.

Thank Goodness I'm Not Thirteen

2005-12-12T19:29:00.000-08:00

My cab driver wore all black, including his sunglasses, but not the surgical mask he put on when I got in the back seat. He told me to put on my seatbelt - in the back of a cab! That's a first. He wasn't very talkative, but somehow by the time I got to my doctor appointment he'd told me that he was vegan, had always lived in Seattle, and hated the phoniness of the holidays. I tried to reassure him not too cheerfully that there were only a couple of weeks left as I stepped out into the cold gray drizzle. So many people were there, half of them looking disoriented as the place was undergoing renovations and everything was turned upside-down ...and then decorated! I got throught the appointment with my new endocrinologist, did the lab tests with minimal trouble, and went out to wait for the ride home. When they hadn't shown up for a good 45 minutes, I went outside to call, sat on a bench and felt something odd as I was speaking with the person at the call center. He said another cab would be on its way... I carefully stood up, not believing what I'd felt until the cold, cold, breeze violated my behind. Oh.my.god. Somehow my pants, not too tight, not worn out, had TORN, and not at the seam, they'd torn right to left, right across the butt. Thankyouverymuch. My jacket (thank the gods I had one) wasn't big enough to tie around my hips, so I kind of held the sleeves in front... along with my backpack, all in my left hand, while my cane was in my right hand. I hobbled around trying to be sure not to miss this cab, and every time I sat down for a minute, it tore a little more. By the time my cab showed up it felt like my pants were falling down in the back. IW!! Getting out was tricky, but I managed. I have rarely been so glad to get home! Honestly, it made me laugh. It's not like I walk around with an overflowing cup of dignity anyway. Woohoo!

Awe, I remember Chaos!

2005-11-14T22:27:00.000-08:00

I watched a documentary on the evolution of Punk tonight. I didn't catch the first third, maybe. It made me feel so nostalgic. It's been a million years since I've been to a show like that. I'm a different person now than I was when I went to those kinds of shows as often as I possibly could, but there will always be a fondness in my heart for the loud and fast and gritty scene-that-was.

I've realized something recently, and it's made me less attached to the music I have hoarded since I was able to buy my own albums. Not too long ago I was given a record player and for the first time in years was able to spin my record collection purchased in the 80s. It was really interesting to see which artists stood the test of time. Some of them I no longer have any interest in. Some still interest me musically, and some only nostalgically. A lot of music that I was passionate about was all about the world that that music lived in, and when that world is no longer alive, the music loses its magic. Especially the music I was enchanted by as a young teenager was all about the things that were happening somewhere-out-there-right-this-very-minute, a world that I could imagine myself finding and getting involved in, and much of which I actually did.

I am no longer a wild and freaky looking punk chick, if I ever truly was, and the scene I loved that I was actually a part of no longer exists. I can't go back to Chicago and go to a show every weekend and know I'll see people I know. That was fun, and I no longer feel like I'm missing out because I'm not living that lifestyle anymore. I'm still involved in performance, and there are shows of a different genre that I could go to here in Seattle and be sure I'd see people I know. Growing up is so interesting and cool. I think it's time to test my music collection for the real treasures again...

Whhoosh!

2005-10-26T00:43:00.000-07:00

I left the salon today, my hair shorn and gunked up with too much product from my $10 student haircut, hoping it would look good after I'd showered all the crap out of it and styled it myself. The wind had kicked up while I'd been in there, and managed to almost tear my jacket off and displace whatever style the woman had laquered onto my head. Something caught in my right eye and I walked two blocks squinting out of the other one, watching the leaves and street rubbish swirl and leap under the gloomy October sky. I think Halloween is coming! The wind is dancing the old year's death watch. I love autumn. I love the chill and the damp and the bluster and the changes. I love the colors and sweaters and boots and the smell of summer gone and winter coming. I love the promise that endings bring and the contrast of holiday and dreary weather. Time for some spicy hot something to drink, I think!

Almost Back

2005-10-18T12:35:00.000-07:00

Ok, It's been awhile since I've posted. I've been given some stern looks and questioned about whether I'm going to be one of those people who "start a blog and then forget about if after two months". No, I'm not! So here's a pledge that I will continue, and fight feeling Overwhelmed every time I think about things I want to do but have no energy for. It's tough to strike a balance, especially when I'm in a marathon of long-term recovery. There's so much I want to do. I guess that's something everyone deals with, though. It's hard to find ways to keep your life proportional and not just give up and lead an existence of survival. What a joy it is to have the option ---

--- I'll be back again soon!

Not Mr. Rogers

2005-08-10T21:38:00.000-07:00

Oh, life is never dull for long here. I have a few quirky neighbors, spicing things up now and then. There is one in particular who has been quite consistently odd. He is a small Asian man, probably in his forties, though at first glance he seems much younger. He speaks enough English that you can sometimes guess what he's trying to say... although sometimes I don't think language is the reason he's hard to understand.

The first time I interracted with him, I had just moved in and he knocked on my door at about 11:30 pm. I answered the door and there he stood, a saucepan in hand with something that smelled particularly off-putting with unidentifiable animal bits and some kind of fat floating on top. He asked if I wanted some soup. I think it was meant as a friendly gesture. I thanked him, but declined. At various times he has shown up at my door asking for change for the pop or laundry machines, trying to sell me a "blank" used video tape, and often at odd hours of the day and night. I have sometimes given him change, but have told him to please not come knocking on my door at night.

For awhile he ignored me. He seemed to be angry, and a couple of times had reeeeally scary looking girls hanging out with him for a week or two. His apartment door is right by the elevator. One time J and I were waiting for the elevator and heard him yelling in his room, apparently to himself, "F** me, f** you! F**me, f** you!" ...Ok....

A couple of months ago he seemed to be getting worse. He was talking to himself a lot, acting disturbed, not responding to hellos. From what I understand, the man has plenty of reason for his mental state. He survived the killing fields in Cambodia before coming here to the States. I have had no reason to fear him, but I fear for him. One evening I got off the elevator and he, in front of another neighbor also in the hallway, told me that he could kill me, you know, and I shouldn't listen to cable tv, it will mess with your head. My other neighbor said he'd wait 'til I got on the elevator before leaving the area. I don't think it was really a threat, but obviously something was wrong in his head!

About a week later, maybe less, J and I noticed a terrible smell in the hallway. The next morning, A said that she saw this neighbor in the laundry room banging his head on the washing machine. A little while later the police were in the building, one of them standing out in the hall by the elevator with gloves on. I thought for sure something had happened with this man, but it wasn't him. The man in the apartment next door to him, a very quiet Mexican man in his 50s, maybe, had died. A long, long time before. It was terrible. I think the reason my Cambodian neighbor had gotten so agitated was because he knew that smell. He was the one who alerted management and told them to check on his next door neighbor. It was a horrifying thing, but once it was taken care of, he seemed to calm down.

This last week I even had a friendly conversation about the weather with him, and he told me something about free tickets to the aquarium and some seals... something about seals. Today at lunch there was another knock on my door. There he stood, a bundle in his hand. Something in blue plastic was wrapped in a white plastic grocery bag, and he was asking me if I could keep whatever it was for him for a couple of days so someone else wouldn't come into his apartment and steal it. "Why don't you talk to the manager?" I asked, in my most helpful voice. "Who manager?" After some back and forth about that, he said they were all going to steal from him and tell him to call the police and 911 and they would steal from him too and nobody would help. I said, "I'm sorry" in such a way that I hoped to sound sympathetic but a bit formal. He said, "No sorry! Sorry no help!" and walked away gesturing wildly with his free hand and ranting his frustration. Ayaaa. I wonder what it was!

Shhhhh...

2005-08-10T21:24:00.000-07:00

Tonight I sat on my couch with electric things turned off and watched the light change over the water after the sun had disappeared from view. It's been a wonderfully cool and cloudy day for a change, and everything had turned soft shades of gray. Dark clouds peaked up from the horizon, sillhouetted against the bright clear gray of the upper sky. The crescent moon shone white over all the softness, casting its own compelling glow in the not yet dark evening. I love those kinds of moments. I felt like I was watching a secret. Those quiet luminescent soft gray scenes are not the kind that make tourists reach for cameras. It feels to me like most people have turned their focus away from outside, leaving me like a teenager alone at home, with a delicious sense of temporary ownership. Chilly dampish gray days just perk me right up.

Uncomfortable

2005-08-03T14:30:00.000-07:00

I've learned a few things this last week, all of them obvious. A perfect haircut is a very rare, possibly nonexistant thing. Never invite a vegetarian to a Brazilian grill, no matter how wonderful the non-meat options seem to you. A very Christian mother will never adjust to the idea that one of her children might be going to hell because she doesn't believe the same things.

Like I said, duh! On the not so obvious side, I am trying once again to fit into my head what is appropriate social interraction with friends when it comes to intense emotional things. It seems like it has something to do with getting older, or maybe that and other factors, like the social culture out here in Seattle compared to Chicago... I don't know, but it seems like it's ok to talk about intense or uncomfortable feelings, but for Pete's sake, don't actually feel them in front of anyone! It's messy and seems to be along the lines of throwing up in front of them. Please do that in private, no one wants to see it. I find that so interesting. I remember when it wasn't that way, but maybe that was the recklessness of youth. People had "bandwidth" for each other's messiness, could look each other in the eye. Maybe that was Chicago... I'm not talking about being disruptive at a dinner out or something, but it seems to be that way even in private conversations. Ah, well. Everyone has "issues", just like everyone gets physically ill now and again. Sometimes it's just uncomfortable to be a sentient corporal being. Hmmh.

One Year After Brain Surgery

2005-07-27T14:11:00.000-07:00

And still the hot summer days linger…

I feel like I’m waking up to the physical world. My health and body deteriorated so much for so long, that the only way I could cope with it, evidently, was to dissociate away from what I experienced physically as much as possible. My consciousness basically lived from the neck up and wrists down and even that was a pain since I was having migraines three and four days a week.

One year ago today I had “Tumor Tom (that bastard!)” evicted from my head. Much has changed in that time. I have broken addictions to the cortisol “Tom” was excreting (bastard!) in overwhelming quantities, to the prednisone they had me on afterwards, to the oxycodone that kept the pain at a level low enough to keep me from jumping off a bridge. I only occasionally get a bad headache now, and have only had probably two or three real migraines in the last year. That is remarkable after years of headache every day and migraines more often than not. I have gone from barely being able to get dressed and sit on the couch all day to being able to go to the pool and exercise in the morning and then go to a doctor’s appointment in the afternoon – huge progress in mobility and less of the smothering fatigue. I have gone from large constant quantities of oxycodone and Naproxen to Naproxen and occasionally nothing, usually regular Tylenol, and only sometimes Tylenol with codeine. I’m down to one insulin injection a day from four and my blood sugars are under control, my blood pressure is down, and my cortisol levels are normal!! My skin has cleared up, my period has returned after over two years of being gone (mixed blessing, that – a good sign of hormonal normalizing, and proof that I’m not old yet, but oy vey…), and my hair has grown back a little bit on the top of my head where it was falling out. I have lost 71 pounds – and an inch off my neck, 3 ½ inches off my waist, 5 inches off my hips, 5 inches off each leg, 2-3 inches off each arm, and that’s a mixed blessing, too.

These are wonderful things, but my experience of them is so unexpected. I actually feel in some ways like I’ve gained weight. My skin is getting horrifyingly loose, and suprises me regularly by getting in the way (What is THAT?). J keeps shaking his head and telling me I’m weird ‘cause he catches me poking my leg or something, amazed at this morphing body I’m living in. Even though I’m on fewer pain meds, my experience of the pain is just as bad as it has been. That means, logically, that it’s getting better, but I have yet to feel better. My best times are in the water, where I escape from gravity and can feel graceful and athletic and all the things I have yet to feel on dry land. It’s good, though, and it’s giving me a vision for the future. I’m having to adjust to the thought that I’ll need plastic surgery in a few years when I lose another couple hundred pounds or so, but I can imagine the day when I won’t need the cane anymore, or when I’ll be able to walk down hills or stairs without thinking about it. I have even written out a five year plan (starting a year ago) that ends with me joining the Master’s Swim Team! We’ll see how that goes, but it’s good to have a vision for the future that is expanding instead of diminishing. I’m still afraid to trust completely that it’s going to be ok, that the tumor won’t grow back, and I’m still figuring out what of the damage done by the Cushing’s is permanent, but that’s life anyway. We don't always know what is going to happen tomorrow.

These things I don’t like: huge droopy floppy bits on my body, not being able to sit or stand for long before the pain becomes excrutiating, tiring out suddenly and completely, trying to figure out how to pay for haircuts for my now short hair, learning the fiddle, the sloooow pace of progress, adjusting expectations (mine and other people’s) to the reality of life after “Tom”, needing help, still missing out on activities, being dependant on “the system”, feeling so impatient!!

Things I do like: getting lighter and smaller and fitting in things I didn’t fit in before, having a ride to the Y twice a week, being in the water, learning the fiddle, making progress, however slow it is – hurray!!, being free of constant headaches, being free of physical addictions, feeling a tiny bit younger, a system being there for me to depend on, my beautiful view, living at Pike Place Market, having such supportive and loving and goofy fun family and friends, my amazing boyfriend, having enough energy to do creative things at home now and again, good books, going out for coffee nearby, Netflix, iTunes, my kitty Nuala, imagining the positive things getting even better, enjoying chocolate again, …Hope!

A Little Junior High

2005-07-20T22:18:00.000-07:00

I was in the bathroom this morning when A arrived to work. I could hear that there was someone with her, not something I'd expected. I was not at my best, and still struggling with the awful stomach ache that has been plagueing me this week. I tried to comb and flatten my crazy unkempt hair, threw on the clothes I had set out, and went into the messy apartment to meet someone new. Evidently A is going on vacation for a week, and I- is going to fill in for her. She came along to learn the ropes. Maybe I would have felt better had I been presentable, or the apartment presentable, but that is why I have help in the first place. It was just unexpected. After we had gone through the awkward introductions (and I realized that I- probably speaks less English than A does), I sat down at the computer to check my email. A was showing her around, where things go, what the routine is... it just felt so WEIRD. They were chattering along in Somali, and going through my closet and my dirty dishes and my underwear drawer and I suddenly felt like I was twelve again. So vulnerable and clueless and paranoid; "Are they talking about me? What is she telling her? Are they making fun of me?" Oh, my imagination can take that and run. I finally called my sister and left a message, and then L, and then my sister called back, and between the two of them I was able to babble my insecuties out in Spanish (haHA! I can do it too!) and laugh at myself and felt much better. By the time the morning was over I'd gotten to know I- better and we were all friendly and much more comfortable. It's just such a weird situation to have an unexpected stranger going through your stuff... and saying things all the while that you can't understand. It gave me a taste of what it must be like to be in a country where you don't know the language. I think of myself as so international because I've lived in more than one country, but I've never had the isolating intimidating scary experience of moving somewhere I don't know the language. It'd drive me batty(er).

Accchh the Heat

2005-07-18T18:50:00.000-07:00

Ah, it's definitely summer. Summer downtown, in an apartment with west-facing windows. I feel interminably sticky and lethargic. Yesterday I looked at my over-ripe bananas and in the cool morning air, thought to myself that I should bake some banana bread. Good idea. Shoulda done it then. By the time the loaves were put in the oven I was ready to hose myself down and cry.

I got a lovely break when S whisked me away for a drive out of the city - "Let's go 'til there are more trees than pavement!" I think I might have squealed with delight... or maybe that was just in my head. Not much makes it out in this oppressive atmosphere. We ended up at Fin's Bistro in Issaquah, and drove home just in time to watch the sun setting over Lake Washington. Mount Ranier was out, radiant under the moon in the still blue sky.

It's funny, but no matter how much I need to get away, or how much I drink in the smells and sounds and silences away from the city, I love coming back. I love living in the "tall neighborhood", in this beautiful smelly noisy active downtown with a stunning panorama of water and mountains at nearly every turn. On the worst weather day I don't regret having moved here.

Still hate the heat, though.

Things I Love About A Hot Summer Day:

shorts and tank tops
bare feet on cool tile
the smell of warm earth and green things
water to be in
water in me
frozen sweet things
fans
really good iced tea
cross ventilation and shade
seeing someone besides me sweating
refrigerators
sunset

Progress

2005-07-14T14:39:00.000-07:00

Today is a day I'm grateful for baby steps. I realized I'd been feeling unsettled because everything around me seemed to be in flux. My apartment building has new owners, my water arthritis class has a new teacher, I thought A- might not be working with me anymore, my endocrinologist who has taken me through the whole process of diagnosis and surgery and recovery has retired - all sorts of things are happening that hit close to home that I have little or no control over. I keep getting opportunities to practice "surfing" - maintaining my personal peace and stability when the inevitable changes and upheavals of life happen.

Our building is now officially part of the Market, something that people have been afraid of, but I think it's going to be really good. Although I was grateful for what we had when this building was owned by the Seattle Housing Authority, the Market is so much more colorful and more of a community and not institutional, something I heartily disliked about the SHA. Why public housing has to have that prison/hospital/institution flava, I'll never understand. I have some theories...

Today I was very excited to feel good in the water again. It's *so* friggin' hard to not over-do it, but I must have found the right balance today. I didn't push it too much in class, and then I swam three laps afterwards (150 meters)... I really, really wanted to swim more, but I've learned my lesson. I still have to shower and get dressed and get home. Someday, someday I will go to the gym and work out without giving a thought as to how on earth I'm going to make it through the rest of the day. Today was good. I'm hurting, of course, but I'm functioning... and I may even step out for a minute later! No, really, this is huge progress!

There's a new woman in the arthritis class. Her name is "Jo" and I'd guess she's hovering around 80. I think she rocks. She has a black swimsuit with primary colored graphics on the top, and an old-fashioned swimcap that is white rubber with primary colored rubber flowers all over it. She has long straight legs and a wide curved back and a low raspy voice that sounds like she probably smoked for a few decades. She gets into the pool and strikes these old-school swami kinds of poses, and seems to be ignoring anyone who talks to her, but I think she's hard of hearing. She swims with the movements of a lifetime of skill pushing its way out of a body that's freezing up and wearing out. She told me that her mother was a swimmer and that she could swim before she could walk. I've definitely come to the conclusion that old ladies are some of the coolest people around. Most of them seem to have an iron constitution, having survived for so long, and they know who they are and what they like and don't like, and they have the best stories and often the most hilarious and unexpected sense of humor. I feel like I'm swimming in the deep end of the pool when I'm with them. The years of their experience loom under our feet while we float on the surface of the present. If I live that long, I hope I'm as cool as they are.

Significant Books

2005-07-11T21:43:00.000-07:00

"The Chronicles of Narnia" by C.S.Lewis - the first books I read on my own that really captured my imagination as a child. I was so into them I remember recounting each of the books to my sister B at night when we were supposed to be going to sleep.

"My Name is Asher Lev" by Chaim Potok - showed me something about myself that I'd never seen outside my own head, and drew me into a world I'd never seen from the inside before. I've read every book he's published.

"Cry, The Beloved Country” by Alan Paton - I read this around the same time that a close friend went to South Africa (he gave me the book) and Nelson Mandela got released from prison. When they had their first free elections, and I saw the news, someone was holding up a paper with the headline, "Vote, The Beloved Country". I still choke up about that.

"Hamlet" by William Shakespeare - also another N book. I read it out loud (by myself), and had a transcendant moment of being so into the play that I felt like I was channeling the character, not reading it (different than getting lost in a book like I usually do). Amazing, and something I've never experienced in quite that way again. It was also just before I saw the play Rosencrantz and Guildenstern are Dead by Tom Stoppard in which N played Hamlet.

"The Brothers Karamozov" by Fyodor Dostoevsky - the first major Russian novel I read, and at the time I had the luxury of an hour every morning alone to spend reading. It was a depth of writing that I'd not experienced before, and it made me fall in love with Russian literature, something that has grown my mind and my understanding of people and culture and history and so much else.

"Roots" by Alex Haley - I felt somewhat cliché when I read this book, but I'm so glad I did. It helped me understand the connection between history and the present in this country in a way I never had before, and he is also an amazing story-teller. I was very confused about the racial situation here when we moved to the States, so I have found it really good to learn what I can along the way.

"The Poisonwood Bible" by Barbara Kingsolver - the first book I read of hers was actually, "Prodigal Summer". I have read all of her fiction, I believe, and nearly all of her non-fiction. She has an amazing voice as a writer, as a woman, a person with a conscience. The Poisonwood Bible is about an awful missionary family, and I had to read it as a story of one family, not as an indictment of missionaries, but I thought she did an amazing idea of describing culture shock, survival skills, re-adjustment issues, and how people and relationships grow and change over the course of living in different cultures. I value her so much as a writer, and feel like I found a treasure when I discovered her books.

That's a start off the top of my head... of course there are *so* many other favorites, but these were the ones that I thought of off the top of my head that really impacted me in a memorable way. I'd love to hear yours!

Ordinary Love

2005-07-11T21:25:00.000-07:00

I'm looking out the window behind my desk and it's that wonderful time of night when it's dark out, but not black so that you can't still see. Everything is shades of indigo, highlighted by the different colors of artificial light on the boats and across the bay, glowing under the blanket of clouds. There's a ferry stalled in the bay right in front of my apartment for some reason. Hmh.

I had a non-momentous but really wonderful weekend with J. It's so amazing to be with someone who loves you well. I can't believe we've been together for nearly ten years now. Well, in some ways I can. What suprises me is that I had no idea I'd still be catching my breath every now and then at the sight of him, or feeling so goofy still when he pulls me close. I love watching him be the man he is, and is becoming. Never saw this stuff in movies, this every day preciousness, the treasure of the ordinary.

Now books, there's where I catch scent of such things. I had a great conversation with my sister S the other day, and when I told her there were several books I could think of off the top of my head that had really impacted me, she asked me to write them down. I'll include that in my next post.

*p.s., Congratulations to Emilio and Carlos - ¡Felizidades!

Not Being a Mother

2005-07-08T10:09:00.000-07:00

This morning A was here to help, and I was terribly glad she was going to be here. I was harldy able to move last night, either because or in spite of the fact that I made it to the pool yesterday morning.

It's been interesting lately with A. She is definitely not shy about sharing her opinion, in ways that I find shocking when viewed from my cultural context. She asks about how much things cost, she tells me if she thinks my nose is too big or if she thinks something I'm doing isn't the way she thinks it should be done. She's been telling me for awhile that I don't need the cane, I just think I do (I know that's not the case myself, and when I mentioned it, my doctor looked alarmed at the idea). I don't know why it partly distresses me so, but I couldn't decide whether to laugh or cry this morning. She is trying really, really hard to convince me to have a baby! "No, try, just one". She said my problem is that I'm not busy enough, I have too much time to think, and I should stop taking all the medications I'm on (since evidently my doctors and I have just imagined all of this) and have a baby and that would make everything ok. Wow! Most of the time I don't even feel the cultural differences between us, or if I do, it's comfortable, but this was not! A baby, indeed. Thaaat's a good idea. She said if I die without children I will be forgotten in two days! Ayaa! In another life that's exactly what I would be doing at this stage, but that's not the way the wind has blown. Maybe it bothered me because there is that part of me that does grieve the loss of what could have been. I'm very grateful to have a rich and full life as a daughter and niece and sister and aunt and godmother and girlfriend and friend and volunteer and neighbor and member of my community. I nurture those relationships, I have more to give to them than I would had I children of my own. I give birth to art and music and so much more. I am not half a human because I have not spawned. My life still has value just for having been lived.

Whheeeee!!!

2005-07-06T20:30:00.000-07:00

I feel so much better now that I've gotten out of my apartment for two days in a row! The pain isn't so bad when I can stop being so myopic all the time. Out with L and S last night, the best Thai food in town and some of my favorite company.

This morning I colored my hair - got the best laugh I've had in ages. It even made up for the fact that I got stood up by someone who forgot we were supposed to meet this afternoon. Went out with SH for sushi instead, and bought an amazing enormous old ring - there goes the last of the birthday money! So worth it. I feel slightly guilty for not buying something I need, but I never get to be frivolous and extravagant otherwise! I feel hopeful again, I think I'll even make it to the pool tomorrow and then to the dr. in the afternoon. Maybe she'll have the test results from my last appointment with the endocrinologist. It's so interesting coming up on a year after brain surgery to remove the tumor. In a way, I'm glad that this car accident happened at this point and not months ago. I know I wouldn't be doing nearly as well even that recently.

A was here to help me this morning, and didn't understand the disease I had and how it would have affected my injuries in an accident compared to another person who was healthy to begin with. The more I tried to explain the more I realized I had to start from a completely different place. She does amazingly well with the language and cultural barriers. I had to try to explain what cells are and what germs are and how some diseases aren't contagious... most people in this country function with an assumed level of knowlege about things like that, but she has had none of that particular kind of education. It's interesting trying to explain all of that to a very intelligent adult. I'm sure she feels the same way when I ask her questions about Islam, or relationship dynamics in her culture, or about the Somali language.

I'm going to go watch the gray twilight. I can see the ferry boats gliding white across the blue/gray water. Lights are starting to glow pink and orange and yellow on the surface, all beaming paths to my window under the dirty cotton sky.

False Alarms

2005-07-05T13:46:00.000-07:00

Blogging has brought home to me again how very dull chronic pain is. I'm sorry about that, but it's the reality of my life right now. Occasional pain can be dramatic and interesting, but this is boring, boring, boring.

I was feeling encouraged today, managed to walk to the front door of my building and back twice, though I didn't get to the pool today, I think I'll be able to Thursday. I was tidying up the apartment as much as I could manage and then the fire alarm went off. By the time I'd made it down two flights of stairs I was nearly hyperventilating sobs from the pain. I should have stayed in my apt - it was a false alarm, of course. At least I didn't try to balance the cane and the cat carrier. I managed to not let anyone but the woman who was walking down the stairs with me see what I was going through, and by the time the fire dept. had turned the elevator back on I was even breathing normally. I so seriously am looking forward to the day when that sort of thing is just a minor annoyance.

I think today I will find a project I'm able to do that will give me some kind of visible tangible result at the end of it. I need to accomplish something!

Independance Day

2005-07-04T09:33:00.000-07:00

I am in so much pain this morning. In the spirit of taking everything personally, I find it ironic that it is Independance Day here in the U.S., since I am feeling so very dependant on everyone just now. It is one of the hardest parts of being disabled, and what makes me most cranky. I feel like the toddler who wants to "do it MYSELF" all the time. I want my interractions with people to be social or personal or business, not care-taking. I want this part of relationships to be based on who I am and what I do, not on what I can't do or what I need done for me. I guess I do well enough considering, and most of my relationships aren't about that, but it still frustrates me to the extreme when from my end of things my life is about pain and what I can't do. I keep getting opportunities to learn how to live the life I have, not pine for the life I wish I had. There is much I can do. Starting with breathing. IN, out, in, out... ok, I'm calmer now. That helps. It's going to get better... and there is a lot of good Now. (even when I'm cranky)
I think I've been shut up in my apartment too long! Time to get out of here, out of my navel...

Stupid Pain

2005-07-02T15:56:00.000-07:00

I had plans this weekend. So much for that! I leaned over to pick up my cat and something horrible happened in my back and I'm frozen in pain. I haven't thrown my back out like this in years... thanks to the car accident a week or so ago, I'm sure. So my sweet J has helped me grunt and fling myself around the apartment and managed to get showered and dressed and settled on the couch with only a few outbursts. It just feels so STUPID! I've been working so hard to recover from a terrible disease, working to increase my mobility and then get hit by a car and throw my back out. Had a bit of a rant, called L and he listened to the venting and made me laugh and promised it was temporary, though ridiculously unfair. Sin agad e. I sang an out of key "I am in pain and it's annOOYING" song to J and he responded in operatic measure, "I'm so sorry you're in PAIN" and I'm getting some perspective. Stupid, stupid pain! Ah, well...

Since I haven't been able to do anything I'd planned, I've been watching Live 8. The issue at hand puts my paltry suffering in perspective. According to some of the statistics spouted, I'm 22 times wealthier than 1 billion people on the planet, and that is still considered below the poverty line here in the U.S. It's an interesting relativity. The money I have to live on in Seattle would buy me a completely different lifestyle in a poorer country, but here I also have access to medical care and so many other resources.

I'm glad this issue is being discussed, but a petty aside about Live 8; I remember watching Live Aid, and it was *so* much less self-conscious then than now. I know some of it is my age - I'm not as impressed and romantic about it as I was then. The first Live Aid spawned all those eventually annoying celebrity relay-songs ("We Are the World", etc). It really was a new thing at the time, though, and by raising money, it felt like we were doing something ourselves. I appreciate the thought behind this event being purely a political rally, not a fund-raiser. It seems like it may produce more change if governments are held responsible for the kinds of decisions those in power make, but... I don't know, the artifice! If I hear someone say something is so moving one more time (while they toss their hair and pose a little more for the camera)... My hope isn't crushed by such things, but it seems like an insidious element of celebrity politics.

Performances - I didn't see that many, but I was so impressed by Pink Floyd! They are so tight and so good and so comfortable being old farts. I want to be like that, completely living the life I have, being Who I am, not wishing for something else. That kind of wishing so gets in the way of becoming everything you're capable of being. I told J I need to get off my ass and use the abilities I have. He reminded me that I've been a bit occupied recovering from an overwhelming disease, etc. ...Oh, yeah. He's right. I'm right, too. I'm not happy with the level of music and art I've been doing - I'm not up for the level I've been at before, or want to be again, but I can still do more. I won't be ready for the opportunities that come my way if I'm not living those things every day at home!

That's enough for now. Can't sit in this chair for long, even with the pain killers I finally broke down and took. Whew! I hope all this Live 8 effort does change things somehow. Too many people have way more to deal with than I ever have or will. Stupid pain, indeed. It truly doesn't have to be this way!

Friday Morning

2005-07-01T11:46:00.000-07:00

Ahh, this morning the weather feels good - chilly and partly overcast. It's more in keeping with my physical malaise, which strangely, makes me happy. If I feel badly and the weather is nice, it stresses me out, always has. When I was a teenager and depressed, sunny days made it worse. I felt relieved when the weather was gloomy - to me it seemed less like "gloomy" and more like soft and quiet. Sunshine feels loud. It makes the colors shout, and I'm not always up for the noise. Makes me feel like an old lady! Chilly and damp is perfect weather for comforting things like tea or cocoa and curling up with a blanket and a good book, or cuddled up with someone and watching a movie - all activities I can enjoy whatever my disability, unless the pain is so bad that I can't enjoy anything. Maybe when I'm healthier the sunshine will just bring joy, without the wistful edge to it... someday when I can run around town and go on hikes and do all the fun things at that bright volume. In the meantime, I'll take photos and enjoy what I can and go back home and do something else. :P ...However, today is perfect, weather-wise! Just right for, um, typing! --more later!

Sunshine in Seattle

2005-06-30T15:31:00.000-07:00

The sun is shining in Seattle today, and unfortunately the heat along with it! Got out my little digital camera and shot some photos in our courtyard and out my window. I love my view, but I have to say I'm partial to the "usual" Seattle fare. I'm not a child of summer. At least there's water. Isn't it beautiful?!

Aurgh

2005-06-30T10:29:00.000-07:00

So I woke up this morning in hella pain, but I guess it's still better than it was a few months ago. Being in a car accident last week didn't help matters. I'm amazed at how complicated and stupid and stressful it is just to deal with insurance and medicare and medicaid, and all, of course at a time when you are least able to cope with such nonsense. Oh well, That's The Way It Is. ...it's another thing I've been learning - don't waste energy getting upset about things that are out of my ability to change, and if it is within my ability to do something, do it, or choose not to and get over it.

I'm forever grateful to the program that enables me to get help with cleaning and shopping and errands. A- is a blessing and a challenge to have in my life. We do pretty well, though, even with the language and cultural differences. I suppose there are advantages and disadvantages to the fact that I grew up culturally "out of place". I was born a foreigner, and then came "home" to a foreign country. I know at least how it feels to be not at home, to not have people understand you, and we're both pretty good at communicating with each other. She's taught me enough Somali phrases to startle the occasional Somali person I run into. Love that.

Beginnings

2005-06-29T20:47:00.000-07:00

First entry of my first blog ever... not my first time blithering. I think writing is magical, truly. There is someting phenomenal about the ability to see the thoughts in another person's head without hearing them speak, without being in their presence, without even having to be alive at the same time. Magic this powerful also illuminates the mundane, so please bear with me if I get long-winded. I have a very high daily word allotment.

Today I started putting away my birthday gifts and cards, assimilating the generosity into my life. I am so blessed with friends and family who think of me, especially as I've been dealing with recovering from Cushing's Disease and a long year of recovery from brain surgery. One more month and it will be the one year anniversary. I need to celebrate the milestone, mark the spot so I can measure the all-too-slow progress as time goes on.