Wednesday, October 31, 2007

Tuesday: I hit bottom, explain comment moderation & find a new challenge

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.


em said...

Dude! If you have to go somewhere, Don't Make It Tulsa! There is a way more hip afterlife, I just know it. Tulsa is so mealy mouthed and self sacrificing.

Don't believe that your family would be all nice and normal without your big mouth. I have a big mouth and a Sick Family of my own. Maybe the only chance at redemption they have is your big mouth.

I said this before, but I marvel at your fierceness. I really don't think I know anyone like you.

Also, maybe Linda's dr should be your dr. She sounds like she isn't afraid to diagnose you at least. You have probably already thought of that.

Daniel, the Guy in the Desert said...

The absolutely most painful injury I ever had was getting a toenail ripped out. Until it grew a scab, the exposed skin was subject to the most exquisite agony from the bandages touching.
Scream long and loud about your incestuous relative.
My ex wife was subject to incest and told me part of the story, but she blamed it on her cousin instead of the real culprit, Daddy. I had to find that out from the black sheep of the family, who let me know that Daddy has played with about all of his daughters AND his grand daughters.
I could believe the part about the daughters( although it was a stretch), but the part about the grand daughters?
That defied belief.
I really couldn't hold anything against her after I found out about all that.

Elizabeth McClung said...

em: I guess when I think of the great unknown, Tulsa springs to mind. Yeah, I do have a big mouth and I always hated smiling at the camera unless I was happy.

Not knowing anyone like me: Thank God! I have always maintained that while most people want the world to be like them, the quickest road to the apocalypse is to have everyone be like me.

I wish, but she's just a locum, a hired gun - here today, Ontario tomorrow. Thanks for commenting; it's not like I don't hear comments, it is just nice to see ones that aren't from inside my head. (okay, that came out a bit darker than I intended).

Daniel: This is the advantage of losing nerve function from the feet up - I actually felt something for a minute which is why I thought I might have broken them and didn't really want to take my sock off.

As for incest, hey, please don't give me a "Free to be a psycho bitch" card. I'm just trying to be free of all that crap, and all the need for secrecy because apparently using someone in the home cause your horny is well....nature, but a conscious act of saying "Gee...I think that was not a very nice way to teach someone 'this is who you are; this is what your body is for'" is seen as far more willfully destructive. Odd that. Thanks though. Actually the granddaughter thing is quite common; it is one of the problems of "reconsiliation meetings" - the abusee thinks "Gee, I'll get closure!", while the abuser thinks, "Cool, one more shot at her!"

Casdok said...

I am sending you some Reiki.
A most moving post and fantastic pictures.

The Goldfish said...

Thinking of you, Elizabeth.

Sally said...

Yes, why isn't Linda's doc your doc ? Is it possible? It would make sense for her care of Linda, to also be responsible for you. Make that a challenge?

Hearing the words - hearing a doc state the fact - MSA - no, in full - Multiple System Atrophy - it is all going to go, sometime - is stark. That is the bottom line, please continue to make that the bottom line, not drugs. I have a drug in my cupboard that would kill me if I took 4 a day for four days, rather than 4 once per week on the same day every week. Imagine how that frightened everyone that knew, including my daughter and my doc and ME. The one I love (my daughter), and my responsibility to her in the way of my death, is the thing I hope will keep me alive when, if for me, it gets too bad to live with it daily. But I don't have to deal with what you have to deal with so that may not be relevant.

Your witness to this condition is another challenge. Not just here perhaps ... ? I would say a weekly column in your local newspaper. Blogging for OUCH is not going to make a difference to the quality of the medical and home care you get. Publish it locally, witness the crap and the battle you have getting the essential medical and home care you must have.

None of this - peoples' reactions, the medics who don't want to know, the home care workers who patronise you, is caused by you, your character, your life choice, or chosen by you to make life complicated for everyone else - family, medics: all of this
is the medical condition. So no taking any of the crap piled on you from other sources ok !?

Not the abuser in the family. Of course he is not going to admit he is evil, of course he is working hard to get everyone on his side, including you. Bastard. State the obvious once clearly in a sharp note to everyone and let them get on with it. You have more important things to deal with.

Yes, I know we rely on peoples' reactions to us, their love and care for us, to keep us feeling safe, and if we make them feel uncomfortable then fight back, but when it comes down to it, all you need is the ones that love you and care about you, and show it. Hard that is I know. Take care of yourself and your needs, not their need to feel comfortable with you.

I am preaching, and this may not be subtly put, but I am trying to put into this in the time you have all the stuff I worked out over the last twenty years.

Care givers (apart from lovers) - the paid kind, are the pits. They
have little training in disability equality, the dignity of the person whose home and life they have entered, let alone how to use household machines. It took me five years of crappy ones to find a small team that I am happy to have helping me. You don't have the time, or the physical ability, to be patient with them. So practical measures - diagrams and written instructions pinned up on the wall next to every machine. A folder of written instructions for every day/task and getting them to read it and sign a bit of paper to say they have read and understand and will comply. Not having anyone in the house that does not treat you with dignity as an adult who is way more intelligent, capable, brave, and attractive, than they are. So respect.

Anything, anytime, you can bash it out to your blog and we will be here.

Sally said...

Just read your response that the Doc is a locum. So, can you ask her to make a written statement of what you are dealing with, that you can use as a weapon to get what you need.

Is there anyone in your local government (I don't know how it works over there) who can take responsibility for over-seeing that you get the medical support your condition demands ?

Sara said...

Ugh, this all sucks so much. I'm terribly sorry, and also holding you in my thoughts.

Lisa Harney said...

Professional caregivers/staff...ugh. Amanda Baggs at ballastexistenz has so much to say about them - good and bad.

Best of wishes on getting your GP to sign off on that diagnosis and the need for improved care.

kathz said...

May November be much better.

My best wishes to you both.

rachelcreative said...

How marvellous for Linda's locum to lecture you about getting your ass in gear without taking any responsibility. Cheers - very helpful!


No wonder things feel so dark. You've had a lot shovelled on your plate.

I thank you for sharing. I wish I had some answers. But can at least let you know I'm reading and rooting for a lighter November.

Ms. Pet said...

The family of the Incest Survivor generally never supports the Survivor. So...How to deal? Makes one feel incrediably Invisible and easily sacrificed doesn't it? I'm going to blunt, so please forgive me, as I don't know how else to say this. Feel free not to post this. Here it goes...

Does it matter how they react? I mean, I know you want them to rally and support you, I know where your coming from, specifically so. But your ill and your dying. So I say, say it all, as loud as you can, give it all back to them, don't for a minute go out keeping quiet on this one. Leave it on them to suffer the pain of the truth and don't take it with you.

I believe you by the way. *smile* I know you aren't lying, making it up, exaggerating and the like. *hugs* Email me sometime, you ever want to talk more in depth. *hugs*