Vague Wisdom

Holidays aren't easy for me. I like socializing on some level, but it's not energizing for me. It takes a lot of energy for me to be social. So holidays are a mixed bag. I have one more big social thing to get through and I'll be able to rest for a while.

Inspired by a last-minute idea, loracs and I headed for an actual bookstore (a chain store but still...) last Thursday. When my baby sister's kids were small I would insist on buying them a book. They would get other presents from us, but the book was required. I considered it a small attempt at infusing the love of reading into my niece and nephews. As far as I can tell, I didn't succeed, but I tried.

Anyway, the family had pretty much agreed that we would only be getting presents for the children of the family. Which for loracs and I means my great-niece. She is just four years old. We had already purchased her gifts, but then we decided we would continue my tradition at least for this year and get books for everyone.

We had a lot of fun getting them and I think we were mostly successful in finding literature that was appreciated. Anyway that ate up our Thursday. We went to my baby sister's house for Christmas eve. My grandniece is speaking so much better. She was pretty revved up from presents and holiday candy. So we didn't do a lot of sitting around and talking, but she was really fun to watch. Got home not too late and then went to a movie on Sunday Christmas day. Saw Coco which is a Pixar animation that was really enjoyable. I had originally planned to go with loracs to a friend's house and have some deli food. But I felt pretty wiped out. So loracs dropped me off home and went to see them. No worries I got deli later, but I did feel bad that I missed everyone. However I knew I was not up for a group of people. I hope everyone had a good holiday.

Went to see Linda at the hospital today. I'm actually very encouraged. When we got there she was awake and aware. She's still on the ventilator, so she couldn't speak, but she could answer yes or no questions and flip her brother the bird. :-) She is still very sick, but she is improving. They still don't know if this was caused by Valley Fever, but at this point it's kind of academic. They don't want to keep her on the ventilator going down her throat. If it stays there much longer it can cause a lot of damage to her vocal cords etc. However they think she's going to need to continue on a ventilator for a while yet. So, they need to do a tracheostomy. When my sister Cheryl talked to Linda about the possibility of a trach, Cheryl thought that Linda had shook her head no. I wasn't sure at the time how drugged up Linda was. I wasn't sure that Linda understood that the tracheostomy was temporary and she would be getting off of the ventilator as soon as her lungs were strong enough. I had several conversations with Linda about going on a ventilator, but it was always about the possibility of me going on one permanently (this was when I had pneumonia and wasn't sure if my lungs were strong enough to recover). I needed to make sure that she understood all the ramifications. So I went to see her today. I think she was mentally competent to make the decision, but because she was on medication the hospital needed someone else to sign consent for the tracheostomy. I talked to her about it. She seemed to be okay with the idea, not enthusiastic (who would be), but okay. I told her that as far as I was concerned she was the boss. If she still thought she wanted the tracheostomy, I would sign the consent. Which is what I ended up doing today. Linda has a long way to go yet, but she is getting better. Slowly, but surely.

Thank you everyone for the good wishes.

Last Wednesday night I went to see Girlfriend at the Berkeley Repertory Theatre with serene. I like Matthew Sweet's music, so I was pretty sure I would enjoy the show and I was right. It was a wonderful evening. The Berkeley Rep did two musicals based on popular music this season. American Idiot by Green Day and Girlfriend. Although, American Idiot was more successful as a musical, I'm not entirely convinced that current music lends itself to dramatization. My working theory which is very preliminary is that back in my youth there were such things as concept albums. Where the music was actually intended to tell some kind of story. We don't seem to do that much anymore (although American Idiot appeared to be conceived as a musical and Green Day was much more involved in its show then Matthew Sweet was in Girlfriend.) So the musicals have much more of a concert feel to me. This isn't a criticism, I enjoyed both shows very much. it's just that after both shows I didn't feel like I'd gone to the theater. Of the two "musicals" I've seen at the Berkeley Rep, Girlfriend was less successful in my mind as a musical.

serene looked beautiful in her sparkly black dress. After the show we got sushi where I was introduced to butterfish sashimi which was very tasty and I ate usual tonkatsu (I'm almost sure I misspelled that, but I'm too lazy to go look right now.) I really enjoyed myself. Thank you so much loracs for the transportation assistance. The evening was much more enjoyable being dry. You wouldn't know it from what I write here, but I have a really good life. Much better than I ever expected.

* Finally got to my pulmonologist. He assures me I'm still breathing.

* Got blood drawn (they only took two tries and they got it out of my arm, not other "interesting" places like wrists and fingers). I'm feeling quite smug about that because I'm what's called a really hard stick and I pretty much hate all medical stuff. Acquired from pretty much a lifetime of way too much and too many doctors and hospitals.

* Have an appointment with my GP on Friday.

* Having a little trouble getting started on the next Tiptree Award nomination process. I'm what they call their procurer which means I contact publishers to get review copies of nominated work to the jury.

* Volunteered to do publications for a new science fiction convention.

* Managed to resolve a difficult listserv moderation problem with a difficult listserv member.

* Called for new medical supplies.

* I need to call for other medical supplies and deal with a durable medical equipment problem. (i.e. need to start the process to get a new transfer lift.)

* Proofread a trashy science-fiction novel that I read and loved (well, liked a lot) as a child for Bookshare. Steve Wilson's The Lost Traveller, do you know it? Terrible after-disaster story with Hell's Angels. I had truly horrible taste in literature as a child.

I came back to California in 1980. The first thing I did was go to the Center for Independent Living. There, I found listings for accessible apartments, personal attendants and help getting my benefits straightened out. I also found a community. Folks who were maybe not exactly like me, but who knew the terrain. They were deaf, or blind, or used a wheelchair or may have had difficulty walking and still managed. I learned about this new community at the wheelchair repair shop that CIL operated. Wheelchair repair was our barber shop. Often we would just hang out there. Not needing any work done on our wheelchairs, just there to hang out. We talked about what then Governor Reagan was doing to programs we depended on. We planned our responses. Organizing van rides to Sacramento. Gathering money to bail out fellow community members who had been arrested doing civil disobedience. There I learned how to be an advocate by listening to my sisters and brothers. Learning from those pioneering advocates like Ed Roberts and Judy Heumann.

That wheelchair repair shop was run by Andy. When Governor Reagan's cuts caused CIL to discontinue their wheelchair repair services. Andy got a job at Shield which was a medical supply company that was trying out a wheelchair repair service at the time. I went right along with Andy. Getting my new batteries or getting my front wheel forks straightened out after hitting a pothole a little hard. He helped modify my chair so it was more comfortable or more useful. The wheelchair repair shop there wasn't quite the hub of our community anymore, but we still connected with each other while waiting for our batteries to charge or for Andy to weld the new modification on my lap tray. I got to be friends with many of the other wheelchair repair technicians. There was Paul and Chuck and Gail and many others. Paul is in intensive care right now at Summit Hospital. He has some kind of undiagnosed infection and I'm not sure if he will recover. Chuck is retired. I'm not sure what happened to Gail and many of the others.

Once Shield made it too difficult to work at their wheelchair repair shop. Andy decided to start his own place and Wheelchairs of Berkeley was born. It started out in a small storefront on University Avenue. Later, it moved to a larger site on University and finally ended up on Shattuck across from the Berkeley Bowl where it has stayed for what, more than 10 years? Andy opened two more shops. One in San Francisco and another in San Jose. The San Jose shop never really took off. I believe the San Francisco shop is still there. The wheelchair repair shops slowly changed. Some people didn't like the changes Andy was forced to make. Some for financial reasons others because Medi-Cal and Medicare regulations changed. His shop got a little less friendly a little less flexible. Some wheelchair users moved on to a place in Emeryville that felt more like the old Wheelchairs of Berkeley. I stuck with Andy, a little out of loyalty, a little out of habit.

Andy still gave me a friendly hard time every time we saw each other. Making jokes about the latest blow up in our community. I didn't see him as often anymore. I mostly had my wheelchair worked on by employees. Some I knew almost as long as I knew Andy. Others became friends, maybe not close friends but still friends. I probably got better treatment than other customers just because everyone had known me forever it seemed. Yesterday on a local Berkeley disability list I found out that Andy had sold his interest in Wheelchairs of Berkeley in November last year. He is now living in Oregon looking for a new project, a new direction for his life. I'm not sure if people will get this, but I'm a bit in mourning. A huge chapter in my life is ending. I e-mailed Andy and thanked him for all these years. I wished him well and told him I'd love to keep in contact. I'm not sure we will manage to stay in contact but I hope we do. Today I'm feeling a little wistful for those times when I had community. When we were fighting the good fight together.

Comic Store Cashier: I'm going to Disneyland this weekend and it's going to rain the whole time!

Me: That doesn't sound like fun.

Comic Store Cashier: Yeah, and it's been like five years since I was there.

Me: I think the last time I went to Disneyland was in 1984.

Comic Store Cashier: That was the year I was born.

*sigh*

I tend to think of myself as someone in the background. Yes, people like me and notice me and think I'm a good guy and all, but generally, I'm one of the group, one of the crowd. I have been the center of a lot of activity in the last few weeks. I can't say I've loved all of it. Suctioning may be necessary in your life some day, but it's the most unpleasant thing I've ever allowed requested someone to do to me. I have been about as scared as I've ever been in my life, and I have felt more loved than I have ever felt.

There's no way for me to express the gratitude I feel towards all of you -- those who visited me in the hospital, like leback and waywardcats and tracytreefrog (and the rest of my blood family, who won't read this) and sogwife; the phone calls I received from people like elisem and snippy; the balloons from epi_lj, oksana, and clawfoot; and my Guardian Butterfly from kalmn. There are others, and I may be forgetting some.

But anyway, I am slowly on the mend. Today was the first day I slept through the night. I can see normal from here, and want it desperately.

Again, thanks to everyone. I don't know how I would've gotten through it without my loved ones and all your thoughts, prayers, wishes, and good vibes.

And wild_irises, you deserve some kind of medal or parade or something for helping me and loracs and serenejournal to get through all of this.

We took Gilly to the veterinarian in Marin County again yesterday. She needed two of her large canines filed down because her jaw never straightened out. The canines keep scratching the interior of her mouth. She also needed a root canal on one of the other teeth. So the root canal went well. She got her teeth cleaned, but the teeth didn't get filed down very much. Normally, there is more enamel on the tips of the teeth that can be clipped off. Lucky us, our Gilly's teeth have more, I don't know what they call it, "tooth pulp"(?) and clipping the teeth as much as we need to would have caused her some pain. So the plan is to wait three to six months and hope that the pulp has receded. (a little like when you clip your finger nails) and maybe we can file the teeth down to where they need to be. Alternately, we do a couple root canals and then just cut the teeth in half.

Because we didn't want to run all the way up to Marin and then run all the way back home just so we can do it again to pick Gilly up. We spent the day in Marin had breakfast at The Corte Madera Café. I had what they called Stuffed Hashbrown's, it's hashbrowns with cheese and pieces of bacon in it. They serve it with the eggs cooked to order on top and toast. Carol ordered their pancake sampler; one blueberry, one corn and the one buttermilk pancake. We shared our breakfast with each other so we got to taste each. I loved the Stuffed Hash browns. The corn pancake was just okay but the other pancakes were wonderful. I had a double shot latte to wash it all down. We wandered around Corte Madera, San Rafael, and Larkspar In the car. Stopped to look around an outdoor mall. Where Carol got to play with an iPhone. Which is a very nifty gadget but a little overhyped in my opinion :-). We caught Ocean's 13,but by then Carol was starting to have trouble with her back and hip. I don't think she was having much fun after that. I'll liked the movie, but it was by far the least engaging of the three. It was self-conscious trying to regain the feeling of the first two movies and I don't think it quite made it. After the movie we went to The Container Store which I had never been to or heard of before. I could spend a lot of money there if I wanted. :-) I did pick up some CD/DVD sleeves to put in a notebook. I'm planning on getting rid of all my jewel cases and storing my CDs and notebooks on my desk. I'm trying to get control of all this stuff I collect.

After our shopping it was about time to get Gilly. We grabbed fast food on the way home and that's about it.

My dog Gilly is sick. It started as a little red bump on her gum line. I assumed it was an abscess of some kind. Something that needed to be dealt with soon, but not life-threatening. We decided to use the opportunity to change our vet. We have been going to "our vet" for over 20 years. The clinic had seen all three of my dogs. When my first service dog, Isaiah, died suddenly and unexpectedly of hypertrophic cardiomyopathy. They did everything they could to revive him. They helped loracs get through it and they donated money to the SPCA in his name. When it became necessary, they put my second service dog, Klipper, to sleep. Until I found my doctor Steve, I used to joke that if I could find a doctor as good as my veterinarian I would go to the doctor a lot more often. However our old veterinarian was in El Cerrito which isn't a long drive from Berkeley but is starting to be a long drive from San Leandro. so we ended up going to VCA in Oakland on the recommendation of a very good friend. They just had more after five and weekend office hours.

We saw Dr. Tammy Maggie (her real name) who seems to be a very sweet and caring doctor. She gave Gilly a course of antibiotics, but warned us that it didn't look like an abscess it was hard to the touch (not a good sign). The antibiotics seemed to take care of the little bit of infection but the bump got larger after week. She scheduled us for a biopsy, but their schedule makes the first available appointment the 17th of this month. They don't seem to be particularly concerned about the wait, but the bump is getting bigger quicker. So we're probably going back to our old vet at lease for a while. We think will be able to get a biopsy sooner there.

A good friend of loracs just died today. It wasn't completely unexpected. She has been having significant health problems for years. Being in the hospital much more than being out these days. We went to visit her yesterday and picked up her power chair because the hospital had insisted it be taken away and our van made it easier to pick up. It was a little thing that we could do to make things easier.

Then there are the ongoing health worries of another person close to me (people might guess who, but I'm uncomfortable talking about other people's health stuff specifically). So far everything is fine and I have no reason to believe that they won't turn out just fine, but the waiting is a killer.

Normally, I would expect to be really depressed about all of this. I hate my loved ones to be sad. I hate it when Gilly isn't well. I disliked the stress that many of the people in my life are going through. I should be depressed, but I'm not. I'm still worried and want everything to go well, but I feel pretty good. I think part of why I'm feeling good is that I feel like I'm taking care of the people I love. I feel like there are things that I have done and that I will do that are real and will really help the people I love. I think I'm a good partner in stressful situations. Surprisingly to some I'm strong in those circumstances. It feels good that I am needed and I can help.

So much of my life is about others helping me. I like when I can care for those I love some. Even those I just like. :-) So, all of this is to say that life hasn't been easy lately but we are handling it. My thoughts and prayers are with those who have lost. My fingers are crossed for my silly Gilly girl. I'm glad I know such remarkable people who I know have and will make my life easier. I am especially glad that those people are good about accepting help from me when I can offer it.

Its official, I have a cold. I kept hoping that it was just my imagination, but I'm pretty sure I have a fever. Symptoms aren't too uncomfortable yet. All I really feel is a little bit of tightness/rawness at the back of my throat. Then there's the fever which is making me lightheaded. I really hate being sick. Even a little sick.