Obligatory 2018 retrospective post coming right up!
This last year seemed particularly unkind. I honestly can’t recall another year in my life in which I was so tightly wound, all the time. My stupid disease actually seemed like the least of my worries. I distinctly recall thinking on many occasions, “please can this bullshit be over so that I can just focus on actually dying?” Our current political climate was a massive source of stress, every day, all the time. I had set up filters for my Facebook and other social media to automatically purge all mention of that asshole currently terrorizing us via the White House just to maintain some shred of sanity. Even still, it intruded too much of my reality, too often. I lost entirely too much sleep just panicking on behalf of those I love, and myself, and total strangers. Too many nights spent in abject fear as I watched my country descend into absolute fascism. In our last session together, my therapist actually told me that his wish for me in the coming year is to stop giving a shit. I can do literally nothing about any of this, and I would be so much happier if I could just let it go.
But then, he conceded, if I did somehow managed to pull it off he wouldn’t even know who the hell I was.
January I got my new wheels. She is named the SS Opportunity, because even before I get in that chair it weighs almost 400 pounds, and so if you do not get out of my way when I am in it you will have an opportunity to experience being in a wheelchair for yourself. I didn’t start using the chair right away, primarily because I had no real way to transport myself and the chair to places I needed to be. I needed a wheelchair van first. I also got a new boss at work, my sixth in 10 months. He came with a bold set of new ideas and new plans and promptly set about firing all of my techs and replacing them with new guys. It’s a given at that company that every time there is a new leader, they have to put their fingerprint on everything. It was a lot of shakeup and stress I really didn’t need.
February was particularly ugly. There was a very abrupt end to a very young life that fucked with me more than I can tell you. It’s not my business to tell you. I questioned a lot of things. My mom had a heart attack. Fuck February. The end.
March. I had my first clinic day of the year, my hands were officially decreed garbage as they registered nothing at all on the grip test. My estranged father, whom I had not spoken to or heard anything about in 20 years, died. I paid for his cremation. That’s all I have to say about that. Stephen Hawking died, and so ALS lost its one celebrity.
April was my fourth Sadiversary. I also had my 43rd birthday. We road tripped to Arizona to buy a wheelchair van, because they averaged five to $10,000 cheaper there. The road trip was entertaining, we learned a lot about how ADA regulations are apparently just a suggestion in Arizona, and no one who writes the rules actually has any fucking idea what it’s like to be in a wheelchair. Spoiler alert: a grip bar behind the toilet is absolutely useless and in it self does not make for an accessible bathroom. The van was at the mechanics within the month for a door closing issue. However, thanks to having the van I was able to start taking the SS Opportunity to work. She makes everything not only easier, but sometimes possible at all. I had gotten used to doing without a drink at work, or waiting until I was nearly peeing my pants to use the bathroom and planning what else I could do while I was up, because of the effort required to do those things with the walker. With the chair, I could just… Get up and go whenever I wanted. Wherever I wanted. It’s kind of nice to be able to put in a full day’s work and still have a little bit left of energy at the end of the day. I had forgotten what that was like.
May was blissfully uneventful.
In June, I put in notice at work. I lost a lot of sleep over that decision, and popped more Ativan than I’m probably comfortable admitting. My manager was kind of the opposite of devastated, which cemented in my brain it was absolutely the right decision to make. I gave him almost 3 months notice, and set to work making sure I did everything I could to keep the wheels at my job turning after I left. I was asked many many times why I bothered, and towards the end I started asking myself the same question. I freely admit though, to enjoying heaping spoonfuls of schadenfreude (I am fucking amazed that this program knows schadenfreude) when the CEO of that company was ousted for unethical behavior. I watched an amazing, very positive and life-affirming concert, and a burlesque show. June was pretty all right.
July saw me making official announcements to coworkers about leaving, and many many things happening at work that cemented it was a great idea to be leaving now. Which is not to say that I didn’t obsess and stress and freak out about it anyway. So much of your identity is tied into what you do for living, and I had – am having – a really hard time letting that go. The world at large collectively lost its shit over plastic straws. It had been quite a long time since I had seen so much ableist garbage on my newsfeed, so I guess we were overdue. I spent a good chunk of time educating idiots on exactly why plastic straws are a literal lifesaving device. I also got the bill for my wheelchair this month, and was eternally grateful yet again for the health insurance my job provides. I could have bought a very, very nice car for what this thing cost. I got angry again that the insurance company does not consider the lift feature to be necessary when they refused to pay for it. Still, I’m very glad I opted in for that anyway. I use it probably every time I sit in that chair, and it makes everything so much easier. It’s rather nice to be able to look people in the face when you’re talking to them; you really do become invisible when you sit in a chair. If you’re not eye-level, people forget about you.
August was when I stopped actually reporting to work. August 31 was my last official day, with three weeks of vacation to follow. So much angst. August was also when Jillian happened at me with her rotten cabbage juice bullshit. It takes a lot for me to get that angry. It was nothing however, compared to the anger of all y’all. That was a delicious thing to behold. I am grateful for you every day. I will never, ever doubt that you all have got my back.
September was the end of my working career for reels. It still doesn’t seem like a thing that genuinely happened. I had my last clinic day of the year, and my breathing was officially rated problematic. So that was fun. I had a team walk with me in the ALS Association’s walk to defeat ALS, and that was a very uplifting experience. As usual. And again, if I ever had any doubt that I have a tribe that supports me, that doubt is gone. I am loved and supported, and I will never forget that.
In October, I gave a death positive talk at an art show. It is probably one of my favorite things I’ve ever done. I’m genuinely proud of what I wrote for that show, and hopefully I convinced some people to fill out their advanced directive. Death positivity continues to become a mission in what’s left of my life. Halloween is my favorite season of the year, and we did a whole lot of celebrating and shopping and buying delightfully useless decor and stuffed animals. October is also Jay’s birthday, and I simply don’t have words to convey how important that man is in my life, and how grateful I am that he remains my best friend and my strongest ally and my chief supporter. I literally do not know what I would do without him.
November. Elections. Just… So much. I don’t think I really slept at all in November. It was the start of a pretty serious slide into depression that I am still fully immersed in. Hence my silence. Having nothing to do is waiting very heavily on me, but I also don’t really have the energy to do anything specifically. I’m not ready yet to look for volunteer work or anything. I bought a new laptop. That was pretty cool.
December has been spent desperately attempting to make something of what my brain has fixated on as my last proper Christmas. Also be around for the next one, but my hands won’t be able to open presents, or wrap gifts, or bake a fruit cake. Leaving my bed much less my apartment has become an ordeal. I fully realize a lot of that is the depression talking. But most days, things seemed pretty dark. Because they are. I have a terminal disease, and sometimes I just can’t find that sense of humor about it. Most days I can. Some days, it’s even actively hilarious.
Today marks the new year. Even if I die in the next five minutes, there is one number higher on how long I’ve lived. I have no fucking idea what the coming year brings. All I know for sure is there are a couple of concerts I have tickets to. In September, my short-term disability runs out. I really, really, really hope I have a permanent place to live by then. At some point during the new year there will be a post all about that I’m sure. Meantime, I have some eggnog and some snacks and a warm bed and very cute cats and no plans to do anything tomorrow but sleep and play video games. Can’t complain. I will take 2019 as it comes, and simply pray that it is kinder to me than last year was. I hope that for all of us.
Happy new year, my darlings.