Monday, February 16, 2009

An open letter to Sara E and Other Old Friends: the Story So Far

(An old friend from college (The Evergreen State College 1990), Sara E., wrote to my Facebook page, but due to the ridiculous security here at the home, I was unable to write her back. She says that she reads the blog, so if you will indulge me, I am going to take this opportunity to write her back and bring her up to speed on how I came to be in this home).

Hi Sara,

Please say Hi to Rolf. I used to run into Marc once and awhile but we lost touch. some time ago . It's too bad because he was a real nice guy. I haven't seen Dave since he moved to L.A. about 12 years ago. Through the alumni newsletter I heard he worked on Sphere and he has an impressive list of credits at the Imdb doing technical work but I haven't heard of him since. I had an address for him for a long time and wanted to write him, but so much happened so fast with me and my situation kept changing and not much of it was good, so I didn't feel like writing just to tell him how much my life was sucking. We stopped hanging out because at the the time neither one of us was having much luck in life and we were just bringing each other further down. Still, I do miss him. No one laughed like him. I see he does have a Facebook account if you are interested. When I get to a Wi-Fi spot that allows me access I'll try to contact him through Facebook. I see Chris Lucas has a page too and it's been at least ten years since I exchanged email, when he and Julie had their first baby. In the past 19 years I have been to a few weddings and have seen several of my friends have kids. I envy them, but I wouldn't wish the burden of me off on anybody.

You are welcome to pass my information on to Meghan and Jenn but I would be surprised if either wanted to get in touch with me. From what Dave said neither one of them liked me that much and Meghan pretty much told him I was a loser. I wish I could have proved that her perception was wrong. It's funny that Jenn is working as a librarian because I have thought about getting my Master's in Library Science. My goal would be to be an archivist, either for a record or movie company. I need to see if there is anyway I can get financial assistance since I am now disabled.

For the first two years out of college I lived on the insurance from my Mother's death and acted the part of an independent filmmaker. I spent $50,000 making a 15 minute film that I could make today with my camcorder and computer for free. Watching the film makes me cringe a bit, but it is usually well received and was good enough to get me a couple local jobs (Associate Producer for a short that was shown at the 1992 New York and Berlin Film Festivals, and a couple local music videos, one for a major label).

I learned three things during this time, a) don't spend your own money making a movie. b) never pay your friends to work for you (no matter what you pay them they still work on "friend time" and when the money runs out they bail on you), and c) I am not a schmoozer. I don't have a head for business or self promotion and without those skills I couldn't get anywhere in the film business. Plus, I was unwilling to move to Los Angeles at the time. I've often fantasized that had I moved to L. A. when I had the chance, and the type of people and scene I would have gravitated towards, maybe I would have became part of the group that created Mr. Show. If I had to do it over again, I would have concentrated on writing and tried my hand at writing sitcoms and/or sketch comedy.

Anyway when my money ran out I had to go to work, so after a series of health endangering and emotionally depleting customer service jobs for companies such as Ticketmaster, Eddie Bauer, & Microsoft, and a couple stints working for small businesses run by less than scrupulous businessmen, and a couple long-term temp jobsm I finally wised up and started working at the University of Washington. The first eight years I was on loan to the assistant editor to Reviews of Modern Physics, a quarterly physics journal. My boss Karie was a most fantastic and generous boss and I was given a lot of responsibility. For eight years it was pretty much just the two of us. The Physics department was not the friendliest place to work and they didn't do much socializing, In 2006 both Karie and the Editor retired and so I moved from Physics over to the front office of the Chemistry department. Whereas my time in physics was mostly a solitary experience, at Chemistry I made a lot of friends. But my boss the first year I was in chemistry was high strung and kind of nuts, but she was eventually replaced with my boss Nancy, who was also very nice and understanding regarding my health (even though she no longer works at the UW, she still keeps in touch with me). The boss I had between her and Karie, Shannon, actually gave me my one and only "Unacceptable" service review because she penalized me for the time I missed from work while recovering from my kidney transplant. Even if Igot healthy enough to go back to work I would not go back to Chemistry because the person who would be my new boss, Kim, was Shannon's protoge and equally as high strung.

Anyway, that's what I was doing for the past 19 years, but I should back up and tell you about how I eventually wound up in this God forsaken nursing home at the age of 44 (now 45).

In 2000 I had what I thought was back pain. Coincidentally I had a doctors appointment the next day, and as soon as my blood pressure was taken I was immediatley checked into the hospital. My blood pressure was through the roof and my back ache turned out to be an angina. I had an angioplasty and at that time the doctors discovered that my kidneys were shot and that I was eventually going to need a transplant. I wound up on dialysis four hours day, three times a week, on top of working 40 hours a week). During this time I also had a few other heart problems, including a second angioplasty.

I finally got a transplant the summer of 2006. Things seemed to finally get back to normal, I returned to work after just a couple weeks of recovery, but by the next summer my kidney was failing. Despite having insurance, I could not afford the anti-rejection medication needed to maintain my new kidney (even with insurance it was $1,000 a week). I went into the hospital and they were able save my kidney, but I wound up with this disease called calciphylaxis, which you can read about here. (They also gave me MERSA and Ecoli, but whatever). The amount of time I was stuck in bed caused my muscles to atrophy and ever since I have been stuck in a wheelchair and in this nursing home, trying to learn to walk again. Every time I have come close to being well enough or independent enough to leave, something happens to knock me back to square one. Back in October I had a full blown heart attack and had double bypass surgery. I worked my way back up to the level of fitness I was before, then over Christmas I wound up getting double pneumonia, sepsis, and a pulmonary bacteria infection. I found out later I almost died. Considering the hallucinations I was having the first three days in the hospital, at the time, I was begging them to put me out of my misery, but by day four I ws thinking more clearly, and by day six I was eager to get the hell out of there. Despite the fact I was only in the hospital for six days, this last illness took so much out of me that now, two months later, I still haven't fully recovered and am not independent enough to leave.

So here I lay. While recovering in the hospital this last time I was officially "retired "from the UW. (I say retired because I have the option of taking my retirement out in monthly payments, but 10 years of service does not garner any benefits. It was my intention of working there until I was 67).

I haven't taken my retirement money out yet because the nursing home will pounce on it. They take every cent I have, no matter how much it is. If I make $1,700 (which I do) they take all but $50. If I got and additional $600 a month, they would raise my "participation fee" and take that too. Also, if I ws to get more than $2,000 a month I would automatically lose Medicaid, which is all the health insurance I have at the moment. When I get better, I can reapply to work for the UW within the next two years and keep my seniority (but there might not be any job openings if the economy is still bad when I am better). It would be nice if I can find something with health insurance, but I would also like to spend some time going to school, possibly retraining for a different job.

I am now faced with the prospect of trying to find a place to live on my $1,700 disability check (Seattle rents average more than $1,000 a month). On top of that it has to be wheelchair accessible. When I am about to get out of here I will have to take my retirement out so I can afford deposits and such. I'll also have to spend it immediately and reapply for Medicaid because you are not allowed to have more than $2,000 a month saving and be on Medicaid. Ideally I can go back to the UW, even pasrt time, and get my medical insurance baxk (or Obama will do something in thr nrxt couple years to fix the system).

The worst part about living in this nursing home, where I have now been for 15 months, is all the demented old people. It is next to impossible to sleep when every few seconds one of the "zombies" starts yelling "Help!" Often, when you ask them why they are yelling "Help", they respond that they want a Kleenex, or something else trivial. The nurses have learned to tune out their cries. God help them if they ever really need help. It is probably why it took someone a half hour to answer my alarm when I was having my heart attack.

Anyway, it is great to hear from you Sara. It sounds like you've had some great adventures these past (Wow, almost 20 years!). Hopefully I will be back on my feet, or at least out of this place soon, and re-acess what I can do with the rest of my life. 45 years old "should be" a long way from being old and I hope that I can finally do something that leaves a mark on the world. This blog, may someday be just a way of keeping notes for an eventual book on what life in a nursing home is like (if people still read books in the future).

One of my best friends lives in Santa Monica and someday I hope to come visit her. If I do I hope to see you too.


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