Change happens. I know this, we all know this. And yet it bothers us all the same. When we are young it is sort of exciting, while as we age, every little spot or ache is a new limitation. These are the small changes. But across a life there will be dramatic changes, ones which change not just the outside, but the way who we are. Whether we want them to happen or not, they do.
A person is hit by a car, a girl walking home is raped, a man is attacked and beaten with a baseball bat, a person falls down a flight a stairs. Change. Maybe everything eventually looks the same, but it isn’t, is it?
Being disabled and being ill, or impaired is like that. One day, a doctor says something and then it echoes inside you, bouncing back and forth and you have to make a choice: chemo, radiation, amputation. And then, if you are lucky, after a period of horrid days which consist of a hell that cannot be described, the night before chemo, the vomiting just seeing them bring in the bag of it in special anti-toxin gloves. But one day it seems as if life goes on, and while you are not the same, you have a new normal, just a check up every three months, then a year. A week of worry, before the test, before the results and then you are given back a life you realize had been temporarily held by another.
The whole diagnosis process for disease: sometimes it is quick and sometimes it isn’t. Meanwhile, it is a mix of excitement, dread and the horrific. When they come back and tell you that they need to inject you with more radioactive material without sedation because your blood doesn’t seem to circulate correctly, that’s pretty horrific. When they tell you that you are going to give 21 vials of blood, then you need to pee in a jug before coming back in two hours to give a few more vials of blood, that is pretty horrific. But then there is the new people you meet and finding out that you aren’t the only one who had Raynauds, or the only one who lives with the love/hate/burn down their house relationship with specialists. And there are new sports to try, new things to do, and for someone like me, lots of challenges. And while I know that some people need to stay in bed for most of the day I don’t get it, don't understand how. It is just pain right? (well no!) I wheel myself out every day, wheeling up myself hill crying. I visited places, I traveled. And then things changed.
I lost a year, maybe 16 months in tests, and somewhere I fell off the grid and now I am sort of in a constant status of bouncing in and out of dissociation or insanity. Because I am dying, and not in a plucky, still have strength and go do races dying way anymore but in a being at home and wanting to vomit. Falling unconscious several times a day, bleeding out of my nose, my anus, checking my eyes for blood, for the starbust of the brain deprived of oxygen. Having to be checked 20 to 30 minutes of my day, every day, because I stop breathing several times a day.
Since last week was a total bust, THIS was going to be the week where I did not work, where I sat still, very still, and where I rested. This week was when I gave my body a chance at living into the future. I was to REST.
I went to badminton tonight after many, many attempts to go to badminton. My first time in I don’t know how many week, and neither does Linda. It wasn’t particularly pretty to start with, the birdie would fly towards me, the birdie would fly past me, my arm would shoot up and swing at empty air a quarter second later. Not quite getting those connections. But I improved. It wasn’t like it was before but it was enough. I could serve and I could hit the slower ones. And I could hold my arm ready for the rest. I won the first game and it seems that for a second or so, I smiled, and this one, while it isn’t real, it looks real.
My final game was with Linda who had come with me, in case my volunteer didn’t show (she didn’t). Linda was moving, she was hanging tough and going for the birdies. She came to me to see if I had an extra hairband. I didn’t. Then I suggested she use her “Girl’s gotta fly” blue wrist band – which not only helps my health fund but can be used to hold your hair back in a pinch!
The game was tied until my partner and I tried this thing called “strategy”; I try to get the birdie over the net and cover the mid range and he cover the back and we soon had Linda and her partner running. Not that they didn’t fight back, but in the end we were triumphant.
I took the victory with the good grace and the elegant nature for which I am known for in the sporting community. Well, I am known for a PARTICULAR attitude. Hey, I didn’t lose this one so you don’t have to see my pouting face.
Everyone will want to think that yes, I am back. I am sick but I am fighting back. Well maybe I am going out and I am going to badminton but life has changed since I last showed badminton pictures. I am writing this in a race against the oxygen in case I need to go to the hospital. I have been using a EMT mask to keep the high flow oxygen contained longer and yet my hands are turning purple, and I am on two painkillers and have a blood pressure which explains why I fell unconscious twice since coming home. Is it my damaged heart, my wonky vascodilation, my lungs not converting or all three? So much for ‘light exercise’, eh?
On Monday evening, after my nap, I was too fatigued to keep my body upright and was leaned against the wall. Still there 30 minutes later when Linda checked on me. Fatigued to the point that I felt, I knew that this was it, so with my arm supports I wrote some goodbye’s and for the rest of it I just sat there listening to my breathing, stop and start. I did not exactly have peace, but I felt, that everything that I could want and accomplish within the limits of this illness was done. The postcards sent, the packages sent, the blogs posted. It wasn’t everything I wanted but when I couldn’t move my head, and sat on the edge of consciousness, this was it then. I would be dead next time Linda checked.
I wasn’t, but I still don’t know why.
We all come into life different. The way we experience life, the personality, the sensitivity, even how we are physically is different, to the point of being disabled from an early age. But people adjust and get on with it. I had my own interaction with that, a friend with two heart transplants by age 16. But sitting by and living that life is different; I have learned.
Then there are those for whom they bring their own particularly innocence or flair to this society; and while I’m no Qwen, (where DOES he get those clothes...and matching arm warmers?) I like to think I’m fairly memorable. Maybe because I am often threatening high governments bullies, or talking to the police one day to give me a job wheeling down bad guys, the next day trying to talk them into giving me a police record (and to hand me a big rock I want to throw through the Ministry of Health building). Then when they come to check if I am murderer, I volunteer to be a human shield on their next armed assault since I can’t feel anything!
The thing is that I knew who I was and the one thing I knew was that I might slip, I might fall for a time but I don’t fall down; I don’t fall where I can’t get back up. That just isn’t who I am. I am Elizabeth McClung and be it a bully or an army, I stand opposed; whether joined or alone. But see, the little micro-organisms which are eating me as food, which are literally destroying my brain, eating it. Destroying my nerves, they don’t care that I am “Elizabeth McClung” – and so I fall. I fall and I don’t get up. Welcome to disability world, the theme park which has a slide for an entrance and no exit.
They don’t give you a book when you start noticing bits not quite working right. You sit there, and soon you know you are unwell. You are sent for tests and you are terrified. And then they come back negative, and you are relieved, and then they keep coming back negative, and after several hundred negative tests you are terrified again. If people look close they can see that you aren’t well, but hey, that could be anything. And strangely, at least for me, and for others, what other people think makes a difference. I spent a long time lying. Tonight when people asked where I had been, I told them I had a bleeding problem, but “internal mostly, I like to keep my problems to myself” (no one laughs at my jokes). They asked and I told them the name of my disease, they wanted to know what it did and I told them. “My God, my God!” one guy kept saying as I wheeled onto court, my turn having come up, I called backed and apologized if I had bummed him out.
I want to be the person who is able to break the rules but diseases don’t have rules, at least mine doesn’t. It simply does, and I live or I don’t. Change happens, and this time it is going to be ugly, it is already ugly. Am I the person who is drawing the curtains on the 'fight anything' aspect of my life? No. It is my disease. I often can’t breathe, then there are times I stop breathing, times where my heart stops beating, times, where I cough of phlem, and blood, times when I try to take a dump and blood comes out because I stopped digesting certain food, and they are ripping me up.
On Monday, my government manager of care acknowledged my impending death, and in doing so, withdrew care except the offer of “respites” where I would be kept in bed all day, in a hospital setting. I already have that. I have the same equipment and medicine they give me at the hospital here at “Station 2” – my desk, with recline chair, for passing out. I have my blood pressure charts, I have my medicine from vaco-dilators, to blood thinners, to seizure cycles medication, to heart rhythm medication. I have three levels of oxygen, of which I am now on the highest, the mask. And when it gets worst, I go to “Station 1” which is the hospital bed, which has the same things, but the advantage of raising my feet up to put more blood in my heart, and waterproof mattress so I can bleed, shit and pee over it.
The manager was going to be withdrawing certain services. I was to allowed to not be moved from bed if too weak to raise my head. There was some concern that workers might have vacuumed for me! But other than that, nothing was to be done, at least not until a doctor promised the government manager that I would die within six months. A few months ago it was 1 year, they required. That I have a note saying I would die in one year and I could get hospice and palliative care and pain medications and nurses. But I guess there are budget cuts and when I called the palliative care aspect of VIHA (the government) they told me that if I could not call upon them until I KNEW there was only a month left, that was best. The manager knew I was dying but until someone promised I would die SOON, and put it in writing, no help.
So we are going to Seattle to get, beyond a diagnosis and maybe something to prolong my life, also a note to promise that I AM terminal and that I will die. Because the medical evidence shows I should die, that maybe I should be dead already. That I do have a very rapid form of MSA. But it looks like it will cost us $1,000 for a visit, a consult, and the moving of me, very slowly and carefully from place to place down to Seattle and back to have a note saying, “Yes, she will die in six months.” I know several people who died without the note; and they got no help. I can get pain medication if I am terminal, no one will worry about addiction then (woo hoo Morphine here I come!). Maybe I can get that ‘last wish’ program to give me my last wish; the VIHA building in flames with the notice, “If you can get a fire marshal to verify that this fire will be put out in an hour or less; then fire fighting techniques will be applied.” Or should I just ask for the trip to Disneyland like everyone else?
Change has happened. I can’t reply to every email (1/10th would be nice, since I tried to reply to all emails from one morning and did 32 emails – then I couldn’t sit up anymore). I simply can’t blog every day. I would like to blog four times a week. I notice that my numbers are dropping but I can’t do anything about that. I would rather live than have another 400 people a day reading. Last week I rested and watched TV for 5 hours (yeah, that was the whole week, not a day). This week, I have just sat and rested 2 hours. Change in habits, in who I am takes time, and I AM trying. I am checking out this new future, and trying to see how and where I fit in it.
I can’t remember things, I can’t remember more than 48 hours ago, I mix up words, I have a hard time answering questions, I forget the morning if I have a stressful day, I have forgotten most of my last several years. Linda talks about trips and sometimes I remember and sometimes I don’t. I used to have as close to a photographic memory as a person could get. I knew hundreds of thousands of books and thousands of movies and now, maybe I might remember the title of my favorite book, and I might not. My world is very small, it is the computer, it is this desk (I can’t reach most of the room), a bed, and that’s about it. It is a row of DVD’s, a row of manga, a gargole, an anime girl in a wheelchair, and origami of squirrel along with a row of pills. That is the life I have choice over, that is the part of my life I control.
No, I haven’t given up, no, though I know the feeling of being on the edge, I am not ready to die. Never the less, between the disease and the society they have literally put me in a little room. That is where I sit, looking out at the stars and the tree, across from me. And the little things, like the food I have within reach, like the books or entertainment within reach become very important. This is what disease looks like. People send flowers. The flowers wilt. They get thrown away. I get tired, so tired. And it seems at times that people keep waiting for the old “you” to come back. When I want to scream that ‘me’ is right in front of them. They are the ones who can’t accept this final 'me' and so they, the last of those who held on through hope drift away, like family members, to ‘process’. And the pain, the hurting all over and the way it rains against the window makes it easy to get upset over nothing. And I cry at odd times, while most of the time I don’t cry at all. I talk about what your life is, plainly, and other people cry. And other people sit in horror. Someone else leaving. Because when it comes to life, I don’t know if I am entertaining anymore, but I am fighting to stay conscious to tell you what living at the edge of life is like. And quite honestly, if you want to be entertained, please go masturbate. This is life, much like babies, who are very cute but also shit with unbelievable frequency, and vomit, and drool, and vomit again, and get sick…..a lot!
If you have a certain type of disability or disease, you already know what I am talking about, and maybe you can add or adjust me. Or just put "you" intead of "I". I still live, I still have emotions, I still care, I still guard the few things that are within reach, I still look out the window and wonder what people are doing. I wonder what job I would have? Would I be in a restaurant with Linda now, and would we be talking equity instead of seizure padding, or how January and having to pay the annual insurance deductible again is hitting us? And would I always know my name and Linda’s?
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