Typing one handed sucks. So I guess no long blog today about gender.
Actually today sucks. I wish I could explain to you the kind of cruelty that would make a care worker watch you pass out because it is interesting. Or refuse to help you transfer, or assist physically in any way because “She only helps those who help themselves.” The more fatigued I become, the more I realize what a cruelty this woman possesses, to hold up her own expectation of what a “good cripple” should be and deny care or even life assistance to those who do not meet it on that particular day.
My life, compared to some I can think of, is pretty okay, I mean, I can’t see out of my right eye but we have all gotten used to that by now haven’t we? Going partially blind is boring on this blog, hardly worth mentioning to be honest. I need something exciting and NEW.
I realized today that deep down, half of me does not believe that I am dying and half of me knows I am. While I was showering, I could not shampoo my hair. I mentioned how it is falling and the same soul of compassion said, ‘Yup, it sure is!” as she shampooed me. And I realized as I looked in the mirror, trying to use what hair I had to cover my scalp, that if I really gave a damn, or believed I might come back; or if I wasn’t so sick that I couldn’t summon the emotions that I should really give a damn, I would be calling a doctor. Because this isn’t cancer, and I don’t get it all back if things go right and this is just a "side effect". This isn’t just part of cost of “Surviving” but rather part of the process of dying. If I had known how much I would miss my hair, I guess I would have done a bit more things with it: I’d like to do a braid. How seriously pathetic is that, to be upset, to be crying because I don’t have enough hair, even four inches past my shoulders to do a french braid.
Linda told me, after she found me unable to move for an hour and had to try and wrestle me into a wheelchair, that she now realized that I am like SICK sick. She has been at work a lot and I guess since she is only home to help me go to badminton (2 weeks since I went) or other sports (1 week), she doesn’t see the progression. I wonder if I am the only one who does?
It turns out that dying is a lot more fatiguing that I thought it would be. And a lot more upsetting, a lot more little things falling out of your control. Today, for some time, I lost everything but the use of my thumb. So I guess that means my forefinger is going; losing axons or however it is my nerves die. My hand turned blue and I passed out. It wasn’t the first time. I had been talking to Linda. When I woke I couldn’t sit up. She said, “We’ll get the oxygen on you.” And traced the oxygen line all the way around the desk, up the chair and up my chest, pulled my head up and it was there, going into my nose. Passed out on oxygen: my new trick. So soon, I may not be able to talk much at all, if talking makes me pass on while on oxygen. Or increase the flow or both.
I’m not supposed to talk about the “D” word, because everyone is getting used to me being ill, being disabled. Not dying. Except I am not particularly impaired; I am FUBAR (fucked up beyond all recognition!). I guess that is what stuck in my head so much with the EMT on the ferry, the Coho. Once he heard my diagnosis, actually even before then, just once he saw me laying down and the lips and then found out why, he didn’t ask any questions. He didn’t fill out the section of the form about what meds I was on, because, what was the point? This wasn’t going to be a learning exercise or a review in marking clients who are high risk. I was ‘a matter of time’ and if he could hand me off to the next in line, then what did it matter what medications I was on because it wasn’t a medication reaction or an allergic reaction that was causing this.
Every day, I watch my hands, my arms, my fingernails to see…are they growing again, is it getting pink, did all that pain push it back for 4 days? And when the hand turns purple, as it does. What then? I am on oxygen, so what then? Go out at midnight for boxing practice? Hope things are better tomorrow? And if they aren’t? Then what, just something else out of my control, some new indicator of “it” getting closer?
I don’t get out enough. Someone today asked me if I qualified for playing Murderball (known as Wheelchair Rugby). The question was so surreal to my circumstances that I didn’t really know how to respond. I told them that technically I suppose I did qualify, the difficulty is that players who have stamina of only 2 minutes at a time tend to not have the highest priority on the team. The same goes with players who leave in ambulances, or arrive with their own “Crew” to revive them. That tends to freak players out. Because murderball players are SCI’s, who lead a nice stable lives and go to training and weight lifting and like the rest of the population, find those who go into seizures or have sudden brain damage between sentences to be a little creepy if not down right freaky. And like the rest of society, usually come up with a rule to make sure they don’t have to be around them, much less responsible for them.
Do I want people to be responsible for me? I guess I do, I want to keep being revived until all the fun is squeezed out. I am worried that it is going to be God’s little joke. Because my dying will either occur in the bed or in the head. And I worry that once I can’t do stupid and suicidal things anymore, that I won’t be able to die; won’t stop breathing, will go the long slow road. Is there anyone that wants to go that way? I found out that the waiting list to find out if I stop breathing during the nighttime in Victoria is now….a year. I think there might be a lot faster way, which involves either a care worker trying to wake me up or Linda away on a trip and two days of a heat wave.
I get angry, for no reason, or rather for very little reasons. Get very angry because I can’t lift my arm over my head today and thus can’t blow dry the hair it took three hours to have shampooed in the shower. People move my wheelchair away from my chair for their convenience, so they can put down a drink. It leaves me trapped. Linda does it, everyone does it. They don’t mean to do it, it isn’t INTENTIONAL. How often can you be cruel before it is intentional? I don’t know. I guess that is what I mean by angry. When do caregivers, and nurses and people in the ER and my own partner GET that moving the wheelchair away takes away my ability to make choices, infantilizes me? Well not after a year. Maybe this is some form of grief, at lost things, or hey, maybe I am just an angry person.
This really isn’t turning into a bright shining post is it? The funny just isn’t here. I will get to the post on gender though I wonder why when it took me six hours to write the first one and it seems a lot of people don’t really know what to say. Which makes me think I must have done a pretty crap job on it.
Also, in case anyone didn’t get the message; I do things which are suicidal and/or excruciating painful because I have to. Or because I also have a tendency to be suicidal. These are not “how-to” manuals. I am not plucky, I do not have ‘spirit’, I am dying and if suffering horrible pain for days is the only way I know how to STOP or SLOW dying, then that is what I do. And I do it for as long as I can stand it, because the alternative is more terrifying. I took a risk this week because I felt like I was already dead. Not because I think doing stupid and suicidal things is a good and reasonable way for people with chronic disabilities to live. It is difficult to explain the depth of shame and pain I get from finding out that people are imitating me; and now the suffering they feel, is to me, my responsibility.
If I really wanted simply to die in peace, I would stop blogging. But the truth is I am too scared shitless to do that, even on really crap days like today.
The veins in my arms seem to be free bleeding into the bend of my elbow creating bruises. Does that count as an interesting enough trick for today.
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