Vague Wisdom

Hi there, long time no write. I'm trying to post more regularly again.

Still reading a whole bunch of zombie crap. I seem to be suffering from choice-paralysis. Can't seem to decide what to read or watch or listen to or do most anything. I listen to music by telling Alexa, play music. Then music I like gets played. I don't know where the info comes from on what I like and what I don't like, but she's remarkably good at picking stuff I like. So there is one choice I don't have to make.

I did binge-watch, Orange is the New Black. I had a difficult time getting through the first three seasons, but after that I really enjoyed it. Some very impressing acting on that show. It feels like the end was wrapped up a little too quickly. I get the feeling they were counting on another season, but didn't get it. There were too many storyline beginnings that just ended with a little resolution but not really.

I'm working on getting my study uncluttered. Our floor back there is deteriorating and we need to make some repairs. I'm also working on getting a wheelchair; a new lift, and I would really like someone to look at our electrical. We still have some pretty old connections that I would like to upgrade. I'm looking towards getting solar panels on the roof and hopefully some kind of power backup. Our electricity is fairly reliable, but does go out for short periods of time two or three times a year. Given how much I rely on electricity, I'd like some backup.

I've got a project working on for The Center for Accessible Technology. I'm going to be maintaining their website for people to review, suggest or publicize adaptive tech for people with disabilities. They used to have a fairly thriving community, but it petered out in the last few years. I'm trying to reorganize it and re-energize the place. I'm not sure I have the technical expertise to do what they seem to think I can do. Most of the meetings I've had with them about it has been the trying to reduce their impression of my abilities. Still, it's something to do. That's about it for now hopefully I will post again soon.

PS loracs and I attended a protest in San Francisco of several different groups: people with disabilities, size acceptance folk, LGBTQ etc. demonstrating solidarity with immigrants to this country. It is evil and how we treat those trying to escape the atrocities being perpetrated in South America. Just to separate children from their families and locking people up for no reason except that they wanted to be safe.

A rough beginning of the year for me. Nothing disastrous as usual but not exactly pleasant. Felt a bit ill for some of it and spent a few days recovering. I have my next dose of Spinraza this Friday. This is the first regular dose after the loading doses. It's been 4 months since my last shot and I find that I'm a little more nervous than I was. In preparation, I need to have a blood test and I have needed to get a blood draw for my yearly physical. I managed to get them done today. The only problem was I needed to fast for one of the tests and because of scheduling etc. I didn't really get coffee or food until about 5 o'clock today. However I did get one of my favorite dinners-breakfast for dinner. Had an omelette with some sausage and coffee.

Saw my therapist and reminisced about my mother. Feeling particularly disconnected from family, both blood and chosen. It will be okay. It's really no one's fault but my own. I hope everyone is surviving. I can't really hope for more given the current bonehead and chief.

I've been disabled all my life. I have not always known why. I don't mean in that, "Why me, Lord?" I mean I didn't have a diagnosis. Not for lack of trying, especially in the beginning. I went through all kinds of tests and back then doctor's were very... let's say "creative" in testing nerves and muscles. No MRI's then either. A test called the nerve conductivity test, takes a special place in my nightmares to this day. Add to this the fact that the hospital we could afford was a teaching hospital. I didn't visit my doctor once without a gang of student doctors poking and prodding me without so much as a how do you do. Then there were all the conversations about my medical health being had all around me, but no one actually talking to me. All of them assuming that I couldn't follow the conversation when I always could. All these things made the medical profession difficult for me to deal with. It's taken a while and to be honest, some big changes in how medical staff are trained to deal with patients to make it even possible for me to have things like a regular doctor.

So my relationship with healthcare is not good and I have largely avoided hospitals including neuro-muscular clinics that might know a little bit more about my disability than a general practitioner. After my pneumonia four or five years ago. Concerns about how my disability was progressing started getting more important. And with a lot of internal struggle I finally got myself to the MD/ALS clinic at Stanford to see what they could tell me. I dreaded it. I was pretty sure there was no good news coming from the clinic, but I am a grown up (sort of) and feel pretty good about this step.

I went to the clinic once and did all right. The clinic doctor asked me whether I wanted to get the genetic test to confirm my diagnosis. I'm old enough that when I got diagnosed there was not a test. Diagnosis was largely a collection of symptoms that suggested I might have this or that disability. I'd been given a diagnosis at 16 but had really done nothing about getting more information. So I said sure let's get the test. They took my blood and I just got a phone call from the clinic a day or two ago. In the time between taking the blood and getting the results, I did feel odd. Not worried or anything. Certainly nothing like the one HIV scare I went through, but just odd. I thought to myself what if I don't have what I have? What would that mean? So very much of my life is a part of my identity as a person with a disability. It's not like I'm not disabled. I clearly am. Whether or not it's the diagnosis I think it is. Anyway, like I said, I received a call recently from the doctor that confirmed that I have what I always thought I have. Nothing has changed, no real treatment. Certainly no cure, but it definitely feels more real. That might not be the right word, more solid, more sure? In another way it makes me kind of laugh. When a doctor calls you on the phone in a very serious voice and tells you that your diagnosis (the one you've had for 40+ years) has been confirmed. It isn't exactly big news anymore, but still it's a part of me now. I know it is part of me and not just a possible part of me.

The day beforer yesterday, I didn't feel very good, so in an attempt at getting some attention I posted an "ask me any question about me that you want to, but never have". As soon as I posted it I felt a little self-conscious and quickly deleted it. In the interim between posting and deleting ljgeoff asked, what is my day like? I've been feeling a little guilty that I didn't respond (why yes I was raised Catholic. Why do you ask? :-)) Anyway, I spent most of Saturday by myself. There was a party I was supposed to go to but the weather prevented it. loracs was visiting dbubley at the rehab center. So I was feeling pretty lonely. I'm slightly better today but I seem to be at a low ebb these days.

Tomorrow will be my 50th birthday. It's kind of a startling statement to me. 50. I keep getting hit with the realization that I've been on this planet a pretty long time. Things that seem really recent like the 80s are a really long time ago for some folk. It is a really long time, and I'm not supposed to remember long ago. I'm the youngest in the room. I'm the one that doesn't get references to The Shadow or Fibber Magee's closet. Nowadays, I'm often the oldest in the room. I saw Star Trek when it first appeared on television. I remember the lunar landing. I remember so many assassinations; John, Robert, Martin and Malcolm.

When I was 3 I had no right to an education. Disabled women were regularly sterilized in ignorance and for their "own good". Nobody heard of a curb cut. Later, doctors told me not to count on a long life. My parents, never expected me to go to high school or college. They thought I would stay with them until they died and then perhaps live out the rest of my life in a nursing home. After all, that's where many people with disabilities ended up, they still do because of the lack of community-based attendant care. Yet I got through high school and even through college. I never managed a full-time job, but I'd like to think that my volunteer work has made the world a little better.

This year has been a rough one for me and for mine. Sickness has left me feeling fragile. I'm closer to the end of my life than the beginning and I'm hating it. I try to concentrate on the good stuff. All the people who love me and take care of me. All and wonderful people who make me a little part of their life as I make them part of mine. I never expected to make 50. I thought I'd made peace with that long ago. I was wrong.

I hope I find someway to cope with what's coming. I'd like to think that I have a little of that stubbornness I'm so proud of left to deal. I've said this many times in the last several months. This has been one of the hardest years of my life, but it is also the year that I realized how well loved I am. loracs, we've been together for longer than we've been with anyone. Thank you for this life we've made. serenejournal thank you for this life we've made. And to the rest of you, my chosen family, my blood family and to all my friends: Thank you for the life we've made.

At least I think he is. Recently, I replied to someone on alt.poly in what could fairly be characterized as a heated manner. The person I responded to then unsubscribed from alt.poly. I still agree with what I said to her, but I don't feel very good that I played any part in chasing her away from the group. I'm not really looking for any responses I just wanted to put this here.