An apology for an ill timed death

Linda is leaving me to go on a tour of one of her ministries. Which is top secret. So I can’t say anymore. Cheryl is coming over so I don’t have to go into respite. By the way, we thought that since you COULD take off for parents having medical appointments, and not for spouses that the BC government was a government of heartless bastards who were minions of Satan. But last week we found out how MUCH a full time BC government manager could take off to take care of elderly parents who might have Alzheimer’s: 30 minutes a year. Yup, one half hour is included to take care of your parents in their sickness or disability, it is your choice how you use the half hour. Wow, see, now I KNOW they are heartless bastards in the employ of Satan. They even hate their own parents, and I don’t hate my parents, I have spent more time helping them in hospitals and such. Wow. Go BC government! Remember the slogan (again not a joke!): the best place to Live on EARTH. Which I assume is preparation for when the rest of the world is in nuclear war? Are there countries that allow LESS time off than ZERO for ill spouses (she does get a WHOLE DAY off when I die!), and 30 minutes a year for parents? Thinking….thinking…..nope! BC: The fucking worst place to live on earth! Don’t petition China for human rights abuses; petition US! Boycott BC!

Anyway, enough natter and why I am writing which is sort of an apology for not being dead.

Being truthful is very important to me and when I explain my condition, I explain what I can see. No one seems to have seen this condition in this presentation, but are pretty sure it is terminal but maybe prolonged terminal. Except no one has done a damn thing about it. And quite honestly, when they stop even testing for a couple months because your anemia is below 100 Hemoglobin and same with RBC. All because no one is willing to treat it, and that is the “minor” condition (the “Secondary to the secondary condition”), well, it is kind of disheartening. And when I am told I am here in October and it seems, as one day follows the next that I will see the next month and maybe the month after. I am not sure what to say because in April and the Summer the month of October was our far marker: “Will I be alive in October?” Probably not.

We even asked the neurological expert, who after hedging with the whole “I don’t see why you shouldn’t live for three years” and which isn’t the same as saying you will live, it is saying she doesn’t SEE a cause that would immediately cause your death. So I asked her, “Will I BE ALIVE in November?” And the Vancouver expert said…..nothing. Just looked at me and left the room. So what does that make you think in the Summer? And when someone summarized that I was having systems failing and was in tremendous pain and was not expected to last long, I did not correct them because that was how I understood things in the last summer.

Except I am not dead.

I mean, I am not having a lot of fun, in case you are worried about that. Sure, I wish that I could be perpetually in a sort of “reading week” bliss of just being a student and having a week to stay indoors and lay about and read. That’s what I wish life was like. Only I have a harder and harder time seeing out of both eyes (and not having odd or double vision). And I’m still having seizures, and still in pain, and still have the “do now....don’t pay for 30 whole minutes!” payment scheme. I am on oxygen, I can’t use my walker. I’m not in remission but the removal of heat and constant noise, and returning to 11 to 12 hours sleep a day is actually making me a) feel like I am ALWAYS having to go to sleep which is boring but also b) having some stability. I can talk 20 minutes sometimes before I slur or lose the ability to talk completely or pass out. I only having a couple absent (absance) seizures a day on some days. I am losing memory. I am losing nerve function.

Today I felt horny. I tried again, with intent and vigor, and made it JUST, just to the lip of orgasm, that place between “ready to go” and “going to pee” and back to ready to go” and back and forth until whatever scenario I desperately was creating in my mind involving a Feeldoe just isn’t making it.

Does going months without a successful orgasmic never mind multi-orgasmic masturbation count as “slowly dying” or just “a really, really irritating loss of nerve function?”

I am sorry, I am not getting better, though I am still trying. I am not getting out four days a week in my wheelchair, though I did get a wheeling project in today. And I went out yesterday to vote. But I am getting weaker. But I have good mental days. But I seem to lose time.

Linda says that my readers won’t mind that I am dying slower. I’m not sure, I mean, when you come to see the show, being told you are going to see a REALLY, REALLY slow train wreck isn’t quite as exciting. No, what I mean is that I am still degenerative it is just seemed to have stabilized in oxygen conversion instability (black fingers on weekend notwithstanding). And with the drugs, my seizures are down. And I am going to a clinic that specializes in my thing so there is a chance that I may be here to pester you for a while. Which means I may get my dreams, which I remembered were to go to Sakuracon. I had forgotten because I never believed that I would ever see the cherry blossoms bloom again.

The leaves are turning red and falling now. And yes, I am just as likely to stroke out or have heart flutters, as I did most of one day this week (hearts beating are important!) And I have had the start of congestive heart failure or something could start organ failure but right now, I really do think that I might be here to see the buds come out. That fall and autumn and red does mean the end of Elizabeth McClung. Yes, I might be in a bed most of the time and yes, I am still losing weight every week and bruising on my hip bones and pelvic bones from sitting in cushioned seats. And I don’t heal, not on my extremities, and not on my legs, not really anywhere. But I still race around and throw myself out of my chair for a hit, and I am thinking of taking up boxing again because I am tired of being scared in my own home.

Of course, when I can’t get my head off the pillow most afternoons and evening’s once I have had it lain down, boxing seems a mite of an overreach, but then, why UNDERREACH?

So with the rain and coming snow, there is a reflection, and that reflection is that winter is the time when people with disabilities and older people die. And I’ll be DAMNED if I am one of them.

I am sorry that I am not keeping to what I honestly thought was a sort of schedule, based on what was failing at what rate. It seems the heat dropping has significantly stopped stressing the various systems and that I am not in remission but at a slower state of decline. At least that is what it seems this week.

And I feel very bad, and very guilty and I am not sure what to say to my readers who have been really supportive and helpful in what is honestly a pretty horrid experience all around with also the “by the way you are dying…really quickly” thing. I still progress in couple months what other disease do in years; I still have so many diagnosed and untreated/untreatable condition I am a member of three societies and can be a member of several more. I somehow ended up a member of the Parkinson’s society without realizing it (I think Linda talked about me at a meeting and the next week my name on their newsletter through my door). I am still a partial quad. Still oxygen dependant and needing an oxygen concentrator to leave the house for more than an hour. I'm just not dying quite AS quickly. I hope that's okay?

But what is odd is that I don’t feel like this is sunset (endorpins? Pain meds overdosed?). Or rather it is sunset, and I am so far beyond what most people think is survivable (which I am, people don't even say to me, "If I was you, I'd kill myself anymore", they just sort of stare with, "Why didn't you kill yourself!" on their face) that I am determined to ride this toboggan to the end of the slope. And I see another curve of a hill ahead. Sunset still means the sun is going down, bad days, hospital visits but then maybe coming up for me again. No, maybe not on the same body and the same abilities, or even the same level or mind. But I am sure I can make myself annoying to the cogs of the machine. And send out postcards. And anything else I can scrounge money for to send off. Because people are special. And people who give a damn about me are demented but special, and people who care about Linda are smart; so are those who care about Cheryl.

So I am very sorry, but I will not be dying today. I may not even die before the end of the year. And while I honestly cannot see how it is possible to live through another summer, Sakuracon happens in the spring. And I will have an electric chair by then (the one that rolls around, not shoots you up with electricity!). And maybe I will sell some things at Sotheby’s and go to Hawaii. Fall has come and I am still alive.

I feel alone, I feel lonely, I don't talk much about the future or my future. And yet it is my apology that I am not quite yet death that I find myself setting goals, and talking about the future. And I might be alone during this winter, and lonely, but that is future, not the past, isn't it?

My counselor said that people with terminal disease find that living each day and simple gratitude are what give them peace. I told her that Lene said I’m not subservient enough and simpering to make a good disabled person to the AB’s in charge. She said that it was more taking each day as it comes. I told her, for me, it is taking the idea of what was possible and shredding it up. Linda says that if I lay down and just let each day happen, if I did not fight every day to make the best of my health, even if that is going to make me hurt for now, then I would already be dead. She has seen it and she believes it. I know this, I will not make it though this winter, which I expect to be rather frustrating, depression and not a few tears without a bit of fire and “fuck you!” and the sheer grit that I WILL go to Sakuracon…with Cheryl. And we will buy many books with scantily clad anime girls.

That’s the plan.

And after two to three bottles a day for two years, I have this wisdom to pass on: I hate the taste of Gatorade. But like many things that keep me optimally alive, I drink them.