Last week I started going out in my Ti-lite wheelchair daily, going out to ‘make memories’, and I rejoined the Y because if it were not for sheer will power every single day I would already be unable to leave my bed. It seems I have a small time before that choice/chance is no longer a choice, and I will not go out without fighting.
My scalp is no longer getting blood and hair and scalp are falling out. I do what I can to hide that, at least in pictures. The same is true for my arms and legs. But unless I can get my blood to flow the way it did over a year ago….this is going to be it. My neuropathy has progressed and now with a majority of pain nerves gone and sensation nerves gone, the larger nerves are being destroyed. The right side is progressing faster so on that side my hand, arm is slower. Both sides are slow, and fatigued.
I was to go to badminton tonight but I simply could not. Just going up to the Y and rolling back interrupts my nerves so much that I cannot with both arms hit the button to bring the elevator. I went twice to the Y, then to the arcade the next day, to two farmers’ markets and the next day the RSPCA and did 48 postcards and a few gifts. Those actions almost immediately started depressing my respiration to the point that any relaxation of my general muscles would either result in passing out, or a ceasing of breathing, sometimes for a dangerously extended time.
I would love to know how I can have broken toes or have my hand crushed by a door and not feel it and yetstill be yanked awake daily by the pain. My doctor (steady walk-in clinic) saw me and doubled my medication. Um…that’s lethal levels I think, but I get the point doc. Believe me, every minute I am not focused on trying to write, or watching something the pain is not just there, it is pervasive. It hurts to breathe, it hurts to move, it hurts to sit still,
and to sit or lay and do nothing, nothing to distract, well that is just a bit too unpleasant. By unpleasant I mean remember that time you had your hand slammed in the car door, or when you fell or thought your ribs were broken or cracked? Remember that and how you were kind of amazed that it is possible to think semi-sane thoughts with that level of pain. Or think and speak at all? Unpleasant.Okay, in pain, fatigued, yes, but so what?
Well, I want to live. I do. And if smashing against the wall of my body to find a way into extending the time before I can’t leave the bed, then so be it. I have been working and monitoring almost everything I do at 15 minutes intervals for months to stave this off. Talk about burnt-out! I need to get to Hawaii and I need to do that in my Titanium Chair. To go to the Big Island and Cremate myself if that is what it takes. I have Cheryl and Linda to restrain me from acting on those types of thoughts. I still plan on going to see the lava and the stars.
I would do so much, would have done so much more, if I had known how much energy it takes to simply be held upright and breath in a $24,500 wheelchair just made to support me...could I have gone on? The fatigue is a cruelty. So to do that for 10 or 12 hours a day takes a lot of energy, makes me so, so tired.
And to do that, shower, dress, go wheeling uphill, go out if not every day then several times a week, to prepare to externally retake my life of last year. Why? So I can get back into boxing. Because that is where I sweat before and if I don’t sweat soon I never will. I will risk the daily seizures, the daily mini-strokes, the stopping of breathing, the pain, God why did you make the body have this many ways to hurt, to achieve that. And I am only a couple steps away.
Yes, the last few months have been me faking it, pretending that I was in better condition than I was. Sorry. I didn’t want to disappoint you. I didn't want the disability community to move on because I wasn't any type of disabled they could identify with anymore. Plus I didn’t want to be stopped (the PLAN!). Do I pretend so I can continue to make a difference or because I am selfish in the extreme: both.
In the west, I am trying to track down a saying that ‘We don’t do suicide missions’ but all other countries built suicide subs or human guided torpedoes, even the UK and Italy. There is a culture which does not lay it all on the line – isn’t that the service to the British Empire, Gordon holding off the hordes, to lay one’s life to the better land? So what will I sacrifice to stay disabled instead of dying?
Sanity.
Fuction of limbs. The limbs themselves.
I never ask people to do what I ask of myself. Why not? We are all human. If they feel agony, then can I. If they can feel pain and loss then so must I. If they grieve over what is lost, then so do I, so do I. Except I can’t grieve for the losses which occur in a week, a month much less a year so I don’t talk about them, don’t write about those losses much.
Who would understand anyway?
Why not rest? Because I have a progressive disease that never rests. And because I am only holding on that will power to get me out of bed and into my wheelchair by a thread, the one that lets me push that bit further. That 'thread' and routine get me out of bed, that and planning get me out the door. That and vanity to appear ‘okay’ to anyone passing by or that I met makes me expend a half days’ energy in a half hour. The fact that I can spend the energy that helps me breathe doesn’t make me bright when I do it, but I do.
Whenever there is a disaster, or when people start running, there is one person, me, who starts running toward the problem, and that’s the way it has always been. Even now, I still want what I recognize is the easy way: to die for another. A bullet to the head for me, to save someone, to save me...that is the easy way.
That’s why I like Terry Fox, because for him it was always hard. The training was hard. The days of cold were hard: minute by minute. The blisters on his stump end were hard. The pain, yes, the pain was hard and maybe if he had been offered regular check-ups they would have caught it early enough for him to live. But that would have meant someone, somewhere taking responsibility so while he shook the hand of the Prime Minister, he didn’t receive medical care while running 3,339 miles, more than the breadth of the USA in 143 days but only when he could not go on another day was he finally tested and the cancer found.
Tonight for the first time I read the letter, the first one he sent for fundraising, to the Canadian Cancer Society of those in the ward he left:
“There were the faces with the brave smiles, and the ones who had given up smiling. There were the feelings of hopeful denial, and the feelings of despair. My quest would not be a selfish one. I could not leave knowing these faces and feelings would still exist, even though I would be set free from mine. Somewhere the hurting must stop...and I was determined to take myself to the limit for this cause.”I can think of no better summation. To continue to live, to keep going, to take the pain as I can't get out of bed. To go on even after speech and other functions have failed, as long as words can be recorded is my future. I will take risks to extend it, even though it is going to be hard.
I don’t know what else I have to offer but my story, my day to day life, the truth of that, and the reasons why I put on the face, why we all do sometimes. And to explain why I keep going, and will keep going. I depend not on a miracle cure, or even the treatment I have been promised by the neurologists of British Columbia (still yet to appear – hello, IVIG? I’m over here!). I have had my home care reduced because my medical conditions are ‘too complicated’ and ‘there is no GP oversight.’ No one wants to take responsibility, not even those who would help me to pee, to shit, to eat, to sleep.I take responsibility. Because someone has to start. Someone has to care. It isn't about just me but dozens to hundreds of people in this town alone dying THIS YEAR because of the poor care, the lack of equipment and tests which would be available in a first world country. I am just articulate and have access to a computer.
Medicine isn’t about ego’s, or a failure to take personal or larger responsibility but the opposite, with the opportunity to help or hurt others lives come the responsibility to do so proactively. When the staff has ‘birthdays’ for annual stays of seniors citizens (people, real people who are only a decade or two or three older than you) who are filling hospital beds because there is no place ‘to shift them’. Something is wrong.
Yes, your province may be great...today. Yes, your GP in British Columbia may be super...today. Because if you plan to live longer than a few years, you need to worry about it too. When 50% of the people GIVING me care who come in, including the temps (HALF!) have no GP of their own, then it is a story that needs to be told. And to tell that story I have to live it.
That story is written on and in my body and within the DOCTOR’S charts and documents my last GP had the receptionist box up. That administrator then called Linda to tell her if she did not pick it up that day, over two years of extensive tests would be destroyed. That is how I found out I didn’t have a GP (again). Last time I went into see the walk-in clinic doctor there (for the third or fourth time) I heard her ask the front desk for my chart.“She doesn’t get a chart here.”
Doctor, “Well, this IS a walk in clinic and she DOES keep coming here so why don’t you start one (so I don’t have to take her history every time she comes in…).”
Yeah, I could sue the owner, a doctor, for discrimination at the BC human rights court. The last trial lasted about five years. Do you think I have five years?
I am not ‘inspirational’, nor am I ‘courageous’, 'heroic' or ‘defiant against the odds.’ I know the odds, I know I will die; I am just willing to risk further impairment to extend the time before that death.
I didn’t know what desperate was until now. And I will probably say that again a few months from now....if I have a few months.No one has ever beaten death.
That isn’t going to stop me from trying.
If any doctors in BC want to get off your ass and try some of that ‘do no harm’ stuff, please join in ANY TIME.
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