Yesterday, I flipped out of my chair due to faulty pavement, ripping off two toenails, and bruising the right half of my body. For some reason my body went into spasms when I hit. Can anyone explain that? Just to let you know, concrete is REALLY hard, particularly jagged concrete.
Emotionally I am pretty trashed. Sure, I am pretty bad physically but emotionally I have hit that place when you google to find out exactly how many of your different prescriptions you need to take to kill yourself. Turns out I literally have enough to kill myself about 14 times over. I don’t want to spend a lot of time going into detail but really, what I post is about 1/5 of the bad stuff. I don't think I have bad karma or people are out to get me or anything, sometimes that is just the way things go sometimes. The question is what do I do about it?
I cannot chose happiness right now, however much I might wish for it; but I still have choices. And right now, I chose to write, to find some humor in this, maybe, somehow.
Yesterday, I went with Linda to meet her locum GP, a woman who looked me up and down and said, “So, you’re the one with Shy-Drager.” It wasn’t even a question really. So she knew about Shy-Drager? “Of course.” And she’d seen it before. It turns out that Linda’s health problem is, well, me. I need more care and she needs more sleep and now I need to go to VIHA and somehow make that happen. I talked to the locum about how none of the specialists want to sign off on a diagnosis, and even symptoms like my heart and blood pressure variations get kicked from heart to neuro and back.
The locum, a formidable woman in her late 50’s turned to me and said, “Your doctor needs to write ‘Elizabeth has multiple system atrophy and needs emergency caregiver support’” She made it clear that I need more care and trying to fill that gap and work is making Linda sick. She also made it clear that I better get my butt in gear as my care needs would only increase. She was the first who so bluntly and calmly talked about multiple system atrophy. So I met someone who actually knew about MSA and had no question in her mind that I had MSA. I felt a little relief to know for sure. I felt like a burning fist to the gut to know for sure. So a sucky prolonged ending and not enough that I was dragging Linda down financially, but now I was exhausting her, draining her. What exactly could I produce in my time left that would be worth the effort of keeping me alive?
My answer is to do something that makes life harder; challenge yourself for fuck sakes Elizabeth. Aren't you tired of being the one reacting to others? I am obviously getting placid, or flaccid. When was the last time I tilted at a windmill? I inquired about assisted skydiving (you really need to have some hand control for that cord I think) and assisted hang-gliding. I found someone had "heard" about assisted hang-gliding, so a whisper, a rumor for me to follow up.
In my apartment my wheelchair can’t make it into the laundry room, the door is too small. My home care person was putting things in the washer yesterday and I was trying to direct her. I decided I needed to "be part of something" and literally threw myself forward out of the chair onto the floor. Seems I had forgotten about getting flipped out a few hours before (Ow!). I dragged myself over to her and she was, “What are you doing!” She demanded.
I poured the amount of detergent we needed and passed it up to her. “Helping.” I told her.
“Helping?” she said is this very no-nonsense, you-are-an-idiot tone as I then dragged back to the chair and tried a few times to get back into it. “Helping, of course you are helping” she continued watching me. “I said I could do it but no, you have to ‘help’ which leaves you on the floor. ‘Help’ away!” I finally make it into the chair and give her a "see, I'm still alive" smile, she just continues, “What should I say? Should I say 'Don’t help!'? With you it is like telling a child not to put their fingers in electric sockets, they are going to do what they are going to do.”
I was getting the sense she really wasn’t about to applaud my initiative toward more independence. Oh well. The thing is that my coach and other athletes really never understood why I would push to levels of training that were extreme when it was pointed out to me that I might train like an Olympian but I didn’t have the talent of one. I was always going to be nobody, a non-contender. I didn’t train because I was ever going to get some medal, but because I could be better, do something I had never done before. It is those leaps into the unknown; pushing yourself when you already hurt that yes, sometimes hurt even more but sometimes you do something even you didn’t know was possible. It turns out that my home care person could have done the soap themselves. That wasn't the best "leap" I have ever made.
Do I want to die? Right now, most nights, I ache for it; like a lover's touch. I am surprised the amount of pain I can take, and face it alone. I had to enable comment moderation because a particular family relation who had sexually used me (or rather my body; there wasn’t a lot of pillow talk), decided after many years to suddenly take an increasingly focused interest in where I was; and could he find me, see me, be with me? He used the blog as a way to try and get me to respond to him (a nice jolt of terror every morning by email), and tried to convince me that every time I didn't talk to him or respond as he wanted, I was "hurting" him. So I faced it and told him (and some family) that hey, didn’t really like what you did, and if you want a relationship with me then I guess we will have to talk about this.
Anyway, his response was to call the family members immediately and say who knows what (probably that I am mental or something) and eventually a letter to me which is sums up with: ‘I don’t like jokes like that’ and the word “disgusting” in reference to me a bunch of times. At which point I added moderation to the blog; and that’s pretty much the last I have heard about it, from anyone.
So while I thought, “Hey, finally I’m free and I don’t need to spend a bunch more years coming up with reasons to avoid said person and hide how I feel and the shame. Now, it is out in the open and I won’t feel ashamed again.” Except of course it seems no one knows how to deal with IT and what I am sort of feeling right now is that pretty much everyone would be a lot happier if I didn’t exist. Because without me and my big mouth they could have a wonderful happy family if wasn’t there being so cheerful about not being ashamed anymore because: incest yes but finally out in the open.
Turns out the truth does set you free.....from anyone getting near you. Which is rough But you know what, I haven’t cut myself, not once. No getting drunk. No taking a bunch of drugs. No suicide, well not yet. I just keep one hand on the sword and I keep going. I try to be there for Linda. I look for something good and happy and somewhere I can pitch in and help people. A few days ago I offered to carry an old couple’s groceries back for them, but they choose to hold onto their walker and make it back inch by inch. I was waiting in the wheelchair behind them, because they were both probably under 5 feet tall. I am sure I could have picked them up and carried them to their door. I guess I can’t blame them for desiring independence. What should I do, wrestle their small box of groceries into my lap with a “I need to do this more than you do!”
Anyway, here is to the death of October 2007 and I can only hope that whatever comes in November is better than October. A couple days ago one of my care workers said, “Well, why don’t you try to ‘beat’ Shy-Dragers?”
This seemed that total pie in the sky "think happy thoughts to beat that stage 4 cancer" talk; so I said, “Because it has never been done; you know, it is that brain melting thing.” Then it hit me, wait a minute, did I say that no one has ever beaten this thing? Ha ha, does this not sound exactly like the challenges Elizabeth goes for (and why am I suddenly referring to myself in the third person?). “Yeah,” I said, “I’m going to beat this.” Home care worker was pleased with a that’s-the-spirit comment.
Of course I’m not going to beat it; I know it’s impossible. That is what makes it so darn attractive. I’ve already started working on a plan to find every redundancy system in the body for autonomic systems; like singing instead of speaking for tongue function. Not that being the first person to live with MSA is my only project. I will, of course, continue toward being the first female wheelchair boxer with an exhibition bout; figure out how to break as many other mental and physical barriers as possible and narrate it all the way. But first I have to stop thinking about pills and how easy it would be to “buy a one way ticket to Tulsa.” (Isn’t Tulsa sort of an afterlife?)
And that is Tuesday.
1 day ago