Sunday, November 25, 2007

Things happening for no reason at all; Do you want to dance with me?

Money. That’s what I planned to write about today except that last night I was in intense unrelenting pain. This was definitely not part of The Plan. According to The Plan Saturday morning I should have a complete normal BP and heart rate. And I did. And then, just like the week before, the crash. You hear about a tribe in a desert that plays a game where they whack a goat’s head with a stick from the back of a horse: I was the goat’s head. I am now wondering if that moment of feeling pretty good and getting normal readings is like standing on a building site and having a wrecking ball smash into you throwing you at a brick wall 40 feet away. Yes, first it is pure agony from the impact of the wrecking ball, then as that ebbs and you feel the wind whistling around you think, “Okay, that was bad, but the worst is over and it actually is quite bearable.” Then you hit the wall.

Apparently the one thing I kept moaning/screaming was, “What did I do?” or as I lost functional speech, “Why?” Now this wasn’t the abstract philosophical “Why?” as in “Why do children suffer?” but a very specific extension of the thought that I had done EVERYTHING right. I had eaten what I was supposed to eat, I had drunk the right amount of water, I had exercised, I ate fiber, I had done everything that we are told that should not grant us but GUARENTEE us to feel good. So what did I do, did I not love God enough, did I not eat prunes when I should? I just couldn’t accept, seeing three decades of TV, newspapers and articles that inform, you get cavities because you eat candy; that you feel sluggish because you don’t exercise enough and you are depressed because you don’t have enough serotonin so take this pill. See, if you feel X it is because Y and the solution to all of it is to do Q and R and every other week take some V. There is this law taught to us, written into us, into our culture, our religion, even our view of the worth of each other. So if person A is homeless then there is a chain of events which led to it: decisions which could have been rethought, actions averted because we can’t accept that you wake up homeless (unless you just told your parents you are gay – but still, you said G so now you are H).

I was in a level of pain that, though I had taken the maximum number of pain pills, I just wanted to scream and keep screaming. Only I was more terrified that such concentrated stretching of muscles might tear and make the pain even more intense. And I couldn’t accept that I couldn’t find SOME reason, some THING I had done, or not done to trigger this, to cause it. That I didn’t come to bed soon enough, or I didn’t take enough oxygen earlier in the day. “What did I do?” and “Why?” I don’t know how many times I actually spoke them but I asked that a lot last night. Lot of pain. At one point I remember thinking, “They say third degree burn victims have the worst pain; Let’s set my arm on fire and see if that’s right.”

See, I am finally starting to get what having an autonomic dysfunction means. It means that things just happen. Indeed, no one really knows for sure WHAT happens or why. Maybe last night I had many hours of erratic heart beats, maybe I didn’t have proper lung/oxygen conversion and all my muscles thought THEY were dying from oxygen starvation and really wanted to let me know (like I could do anything!). I don’t know and the realization that there was absolutely nothing I did, nothing I could have done and that is what this disease, this “disorder” does is starting to come home to roost. The idea that there are times I can do NOTHING and I will continue to suffer because that moment an autonomic function decided to break down all the muscles on the left side of my body is pretty damn terrifying. I mean I know what a cancer cell is; as bad as it is, it is a survivor, a fucked up cell that lives when it should die and replicates and replicates. I can understand that. I understand Lymes, and MS and Parkinson’s. But this, I don’t get it. My autonomic system changed from Albert Einstein to 99 monkeys banging on typewriters. No, no, no….that’s just not right. What am I supposed to do? Do I send jolts of electricity through me and hope for a short out? Or just writhe and moan and scream “Why?”

I wrote to a friend that I sometimes/often wish that I could put my hand on someone and have them feel what I feel. They said that is normal, that I want people to understand exactly how I feel. I’m afraid they think too well of me. I want to put my hand on someone, someone who is dismissing me and have them feel exactly what I feel because I want to see if their heart stops from the pain. I want to see the terror in their eyes as all the different pains I feel constantly starts to wash over them. I want them to know how turning over in bed can have all the focus, concentration, extreme effort and pain of a speed ascent of a rock climb. Taste that you fucker!

I guess I am hitting one of the stages of grief/acceptance, whatever. Or I am cranky. I don’t trust able bodied people anymore. I hate the memories of myself. At least I pushed myself to the limit, or at least what I thought was the limit; I can accept that. I can’t accept how I walked around blind to what other people, people with disabilities were going through everyday. I had friends with disabilities, I still do, but I never knew. I mean, I kind of thought about it while going for a jog maybe, but I never KNEW. And I guess now that I do, I’m a little angry; at myself and at all those others who cannot see, who cannot hear, who do not know. So I want to “share” with them. Condescend to me? Look down on me? Then come, take my hand; BURN WITH ME.

Do you want to see the Dance Macabre? My address is…… Did you know that term came from the Black Plague, that the pustules were so unbearably painful that as agonizing as it was to move, it was impossible to lie still unless tied down. So in the final stage, they twitched, and moaned (often the tongue was too swollen for much more) and “danced” in the streets till they died. Okay, I am starting to get it. I do everything perfect, eat my required servings of vegetables and fruits and drink my 8 glasses of water a day and anything can happen anyway. I am Chaos Theory as it applies to our understanding of body function. I won’t let that define me. I can’t incorporate it into me and I can’t ignore it. I won’t be silent about it though; I won’t hide it. I had to confront my parents today; they wouldn’t use the term autonomic dysfunction or Shy-Dragers. “That’s what it is, EVERYONE agrees now.” They said they were holding out, hoping for something else. “Well,” I said, “Many think I have several OTHER chronic or autoimmune diseases?” No, that wasn’t what they wanted to hear. They were hoping for the best. The best right now is finding some sort of medications to slow things down or contain them or make the pain less. Do they think I don’t have those times when I say, “Okay, it is time to wake up now!” Dad, this isn’t like dressing goth or moving to the UK. This isn’t me being rebellious or difficult: I didn’t choose it; I didn’t court it; it came to me.

It was sometime after 2:00 am and I was gasping to try and breathe. “” Linda was holding my hand. “”

“You aren’t dying on me tonight.” She said, “You aren’t dying tonight.”

“Fuck,” I thought. I could only see out of one eye, I didn’t know if my arms were in rigor or my hands were claws, another wave hit and a piece of stucco on the wall was all I could see, “” I said.

“God, please, let me die.” I thought, “Please.”

Linda said when she saw me this morning she didn’t think I would be able to do anything today. “Air Hockey!” I whispered in her ear. She helped me dress. It took an hour. She pushed me there. If my health improved dramatically I could say “I felt crap.” After the first point I passed some time with my head on the Air Hockey table. I think Linda put me on oxygen. She thought we should go. No. It was Air Hockey day. The oxygen helped. She got ahead. I started getting angle shots and I tied up at 5-5. The table shut off just as my last shot clinked home. Linda denies I won: “The time was up!”

Night approaches now and it is going to be another rough one. But I played Air Hockey today. Will it be enough to hold onto? I don’t think so....but it’s something.


Tui said...

Your post makes me mad! I'm sorry you suffer. I don't understand why bad things happen when people are doing all the right things, either.

My best friend's car was struck head on when an elderly lady fell asleep at the wheel. The lady merely broke her wrist, my pal broke EVERYTHING.

My friend lives in constant pain, and deals with a brain injury, and it makes me so pissed off because she was doing everything right when the accident happened: eating well, exercising, had a great job, left her abusive boyfriend, etc... then wham!

I could go on, but I'll get off my soap box, and just say that I'm thinking of you and if I could bitch-slap fate on your behalf I would.

Elizabeth McClung said...

Thanks Tui: I guess, I am still wrestling with that particular angel. I wanted to give a snapshot of what light looks like when it reaches here, now. I won't be like this tomorrow, or forever, but it is part of how I feel and who I am. For better or worse I guess.

I guess it wouldn't be much of a fight if life didn't have me up against the ropes a few times.

Marla Fauchier Baltes said...

I teared up reading your post today. I am so sorry your pain is reaching such an unbearable level so fast. Of course you did everything you could to avoid this. It is certainly not your fault. It is the nature of the illness. I wish there was a better pain medication for that amount of pain. I hope that tonight is not so painful and you get some sleep.

I understand you wanting to have someone else know the pain. I know that is how I felt when I was so sick from my endo and stuff. I think I felt like people did not believe how much pain I was in. It is so much work to struggle through it and when you make it through you want others to know what an accomplishment it was! I so understand that.

I am praying for you.

alphabitch said...

You know, if this made any sense at all, which it doesn't, I would volunteer to hold your hand and hurt with you, even though I am fully aware that this is totally nutty on my part. Because in a world that made any sense at all, I would be acting on the belief that doing this would somehow lessen your pain.

Like somehow there is a finite quantity of pain in you, and while it's too much to expect one body to take it, maybe if it had two bodies to fill up -- or seven, or a hundred, all holding hands -- the part that each of us had to bear would be smaller.

Or something.

But the world we live in is not even remotely fair, and doesn't make any sense at all. This proves it, in case I needed any proof. It pains me to know this about the world, and it hurts me to know that you personally suffer, but this kind of hurt is not the same as what's going on in your body.

When I have had chronic and mysterious pain in the past, and tried to explain it to people ("Imagine that there is a very large syringe, with a very large needle, and every few hours someone is injecting hot, green, glowing, radioactive sand and slime into every single one of your joints. And they won't tell you why."), they've often said that they could not and would not live with that. But I know that they could, and probably would. Because after it's gone on for a while, you know what to expect, sort of.

Which, this isn't like that.

I'd still hold your hand, though, if you asked. Even though I am not sure that I could live with what you describe. I'm guessing I would choose to try, though.

belledame222 said...

But the world we live in is not even remotely fair, and doesn't make any sense at all. This proves it, in case I needed any proof. It pains me to know this about the world, and it hurts me to know that you personally suffer, but this kind of hurt is not the same as what's going on in your body.


I teared up reading your post today. I am so sorry your pain is reaching such an unbearable level so fast. Of course you did everything you could to avoid this. It is certainly not your fault. It is the nature of the illness. I wish there was a better pain medication for that amount of pain. I hope that tonight is not so painful and you get some sleep.

that, too.

Lisa Harney said...

I meant to respond last night, but I couldn't find the words.

I mean, it is so arbitrary and unfair, and it makes me angry to read this kind of thing and I don't really know you - just what you've written here and comments on a couple of other blogs.

Tui says it well, and Marla, and Alphabitch. I did tear up reading, this is not your fault. I would share your pain if I could, and I feel kinda superficial just echoing those sentiments - all of which I nearly did write down, but I was too tired or just didn't have the words.

I hope you had a better night's sleep. Plus, a good night's sleep tonight.

Zephyr said...

Oh wow, so I'm not the only one who wants to make people KNOW what my pain is like, to force them to feel it? Good to know.

Elizabeth McClung said...

Marla: Thanks for the kind thoughts and prayers, though I guess I have to hope it is to a different God since mine seems to have call waiting and a big message backlog.

And this isn't all it is ever going to be (I have to believe that), MSA is like a teeter totter - things go up, things go down. So I assume whatever is causing this round of pain will get bored and go back to giving me nausea or something.

Alphabitch: Just the fact that you would ask or volunteer means I wouldn't use my evil pain powers on you - you are disqualified. I guess I have to say that I am not impressed with the human body, there should be an "override switch" regarding pain - yes, yes, I get it already, something is wrong.

Linda says that as good as I am with words, I will never be able to make people feel or really know what the pain is like. Oh well, I just need to narrate what my life is like day to day and that is sort of the experience of that day. With the "blog every day" thing you can't just go off and hide until you stop being in pain. Pain like this is I guess a part of my condition and I would rather be honest about that than be alone.

I don't know if I can stand the pain, I guess humans can stand anything, but I can't stand being ALONE with the pain. Which is I guess why I try to give people a view of what goes on. I'm not mad at people per se, it is just pain mades you a "little" insane (or when you decide to set your arm on fire, more than a little)

Elizabeth McClung said...

Belledame: well, actually not so great last night but not as bad either but this morning all the tremors were back and the pain so that is an interesting development. Actually I had a sort of breakdown when Linda told me she had booked me an appointment NEXT WEEK - the thought of the effort and pain of leaving and going to an appointment was overwhelming so I think I have hit some sort of "burn out" - Linda, ever practical suggested I use some blankets on my bed and make a "fort" and read in there with a flashlight.

Lisa: Well, I think you probably do know me as much as any do, I'm pretty transparent - I mean you can have a big brain and still be the kind of person that goes "Ooooh! Animal Crackers!" - And this post is part of me trying to be transparent. Or maybe just saying, hey, shit like this happens and I can't quite deal with how I didn't really do anything, I mean, yeah I swear a lot but hey, does that mark me for "smitting?" Probably not, and I got through that night and even if it is a week or a month, I'll keep plugging away (and having moment where I pray to die, that shit just happens), and keep blogging. I mean yesterday I lost both eyes. I was feeling so crap and then my "good" eye wouldn't focus so I couldn't read for several hours and I lay there and planned out evil Christmas gifts for all the people who have been mean to Linda at work (like a giant paddle with "For the requirements of the ministry" engraved on it - which is what he says to her when he gives her some horrid job) and then slept. But sometimes I've had to dictate parts of blogs and comments, when I can't see or type, but, hey I made a promise and if you keep coming, I will keep posting and replying. And things WILL get better (and things WILL get worse - that's the way it works).

Zephyr: Yeah, I try to imagine your experience, and I am amazed at your trust of new AB people in your life. I mean, with your pain for so long there must be some kickback attitude of not taking you as seriously when really, serious pain never gets boring, no matter how often it occurs; or rather it is boring but very intense and hard to ignore and here; yeah you over there, tired of me talking about pain, have a bowl yourself! Oops, I think I stopped channeling you and started channeling my inner voice again. Hehe.

elizabeth said...

Christ Beth. I don't know what to say. I was feeling sorry for myself today. Now I am mad at myself for daring to.

If I was living out there I would soooo bake you some magic brownies or something. Not that it would help but it would feel like a feeble attempt at doing something.

It sucks. But fuck it. At least you have a lot of people who really truly give a shit. That's something. Cuzzz not a lot of people have that.

Lisa Harney said...

BTW, if it sounds like I'm bored, or I don't want you posting these things, I'm not trying to say that at all. What makes me angry is the idea of people not taking you seriously, dismissing your pain, and so on. I can sympathize with that dismissal all too well and it drives me up the wall.

The questioning is normal, although frustrating for lack of an answer.

Sara said...

"I can’t accept how I walked around blind to what other people, people with disabilities were going through everyday."

Right there with ya, sister. Been there, thought that -- still think that.

It's such a cliché, but I never knew how hard it was just to be in a wheelchair until I had to be in one the first time only temporarily after my first surgery nearly twenty years ago. I was shocked at how piss-poor were -- and still are -- the amenities for the disabled, where they existed. Like those little slopey rampy things at crosswalks? You could fucking kill yourself availing yourself of one of those if you didn't hit it at just the right angle. Lots of them aren't even something a person alone in a wheelchair can negotiate, you know, someone in great pain and/or experiencing neuromuscular dysfunction. It's like the people who even bother to put these things in are phoning 'em in half the time. It's like no one even bothers to test these things out in a wheelchair. It seems as though even that little bit of extra effort is too much. It's because people really don't know.

We take a lot for granted. A lot. Even those of us who are already losing ground take for granted much of what we still have. I wish I could say something that would make losing the things we take for granted make sense, but I've got nothing. The one great thing, the only thing, is love. I know, you were grateful for that before. I understand. But these horrible things, they throw the love into relief. It's the love that makes us bother to live through them. It's not the air hockey; it's the loving engagement, the gift of not-dreadful-right-this minute time with someone who clearly feels something for you which goes far deeper than anything many people ever experience.

Maybe I'm projecting. But I have come to believe that love is the point of sentience. I've been wracking my brain my whole life trying to figure out why else any creature should have to go through the suffering that is sentience -- and it is a veritable buffet of suffering -- and this is all I've come up with.

There are people who suffer and also don't have love. That's the most tragic thing I think I know.

belledame222 said...

I guess humans can stand anything, but I can't stand being ALONE with the pain. Which is I guess why I try to give people a view of what goes on.

yes, I think i get that. That impulse, even if not this pain itself.

-offers a virtual hand squeeze-

YummY! said...

I can't give over the fact that you got up and went to play air hockey. I can't imagine how much STRENGTH that took.

"This is how we go on: one day a time, one meal at a time, one pain at a time, one breath at a time. Dentists go on one root canal at a time; boat builders go on one hull at a time. If you write books, you go on one page at a time. We turn from all we know and all we fear. We study catalogues, watch football games, choose Sprint over AT&T. We count the birds in the sky and will not turn from the window when we hear the footsteps behind as something comes up the hall; we say yes, I agree that clouds often look like other things - fish and unicorns and men on horseback - but they are really only clouds. Even when the lightning flashes inside them we say they are only clouds and turn our attention to the next meal, the next pain, the next breath, the next page. This is how we go on." From Stephen King's Bag of Bones

Elizabeth McClung said...

Sara: Yes, I did not want to play Air Hockey, I wanted to play Air Hockey with Linda, I wanted to be outside and a human and it was Sunday and she would be gone for 5 days and this was our time to have fun, or at least pretend to have fun which often can turn into fun. I believe in Linda because we have fought for each other, we continue to fight for each other - to fight to be close against the many many things including the my physical ailments which pull us apart.

So I don't know if love is enough or if it has to be stronger than that, a determination to keep going too. Linda cannot save me, she is human. But I believe in her more than I believe in any living thing. I can decide I want to review vibrators online for disabled women and Linda will take the pictures. She is THERE. I don't know if I would fight as hard if she wasn't there but I do know I have the strength to be open about being upset, being in pain, being...well....ME...that day - because of Linda. (too bad she works so much huh!)

Belledame - thanks!

Yummy: Yes well, I am known for my stupidity. Actually that didn't take strength, it was getting home care and Linda to dress me today, and to convince Linda to push me over to that boxing again even though I only had partial muscle control. Knowing exactly what is going to happen and deciding with everyone against you that it must be done anyway and that you KNOW you will pay the cost - that's hard. I think this is why people say that I am relentless. Will I go through the exact same cycle of pain - I HAVE to know, or this whole plan is worthless.

Normally I would disagree with Stephen King on principle, ah heck I am going to disagree with him anyway; if you don't believe that clouds are more than clouds and pages are more than pages then for me, you do not get past your next breathe, or through the next pain.

Anonymous said...

I wish I could take the pain for you. Dear God, I wish I could. Im so sorry.


Elizabeth McClung said...

Elizabeth: I don't believe in comparing, if you were having a shit day - I'm sorry.

And you're right, I do have a lot of people to be thankful for, I wish I could meet some of them.

Justsid: If you can extract it and sell it on ebay - I am ALL for that plan! Or Craigslist, I'm not picky.

Zephyr said...

I think your pain is a lot worse than mine, and...that frightens the shit out of me. Of course, no offense, but I am better at taking it easy than you are. However, I was taking morphine this weekend after my bout with tequila and dancing for four hours, so I'm not always good at taking it easy on my body. Sometimes we just have to have some fun and suffer later.

Elizabeth McClung said...

Zephyr: Amen! New plan - going to nightclubs and dancing with lesbians! I'm sure it is a curative! Are you on Fentenal? The Patch?

Yummy: Okay, sometimes you do get through things one breathe at a time, one moment at a time - but I am agree with you, not Stephen King, who kicked my cat.