The last few days I have been trying to focus on posts where I don’t always look passed out, or in pain, or feeble, because while that is part of my world, perhaps a majority, it isn’t all I see and do. And Luminara, as well as going to the Moss Street market and talking in Japanese to Yoko (she is from the prefecture just above Tokyo – here we are talking Punikura poses!) are other aspects to my life. Admittedly I only have these public parts because I have a partner and lover, and a very good friend (not yet lover!), who support me medically and physically to make it possible for me to have those experiences.
I even still have enough humor, on some days to make a “Oh sir, pity a poor, poor crip like me!” face; or is that my winsome face? Or the puppy dog one? I sometimes get them mixed up?
At the moss street market Linda was trying to convince me that the pink fu-fu headband with fluffy pink fuzzy was actually “ME” and would make a great addition to my skull headbands. For some reason, probably because Linda is such a bad liar, I was not convinced. What do you think, is the pink fuzzy that screams, “I want to be a ballerina!” really ME?
We dropped by the bank Saturday and I asked Linda to take a picture of us posed by this old Dodge (1930’s?) as a typical “Victoria experience”. Victoria is a haven for old cars and collectors as you get a $25 “collectors” driving plate and with the seniors, there are lots of 40’s and 50’s cars tucked away in garages until the next generation finds them (same with those silver Gulfstream trailers).
The reason I have been doing posts like that is because the last few days/weeks have been full of conflict with Beacon, and doctor’s orders. To leave a weekend of going out and then go back into micromanaging new caregivers, and spending most of your day's energy getting more tests, and again, more tests is emotionally hard.
Now that I have had a seizure in front of the doctor, he cancelled the anti-seizure med he was prescribing THAT DAY, because now with these additional tests he may find a better medication. But until then, he would be delighted if I could have seizures in front of everyone, and record how many I have this week, be put in an observation unit. While now, after 17 straight days of tests, meeting and activities, and going into another two appointments tomorrow, I AM having a seizure or more a day.
But the pain of always more, the finality of where it is giong, the overwhelming stack severe “ideopathic” things like auto-immune diseases and so much that pulls emotionally and literally at me is too much. Having to explain in detail, how each system is failing, three times a day as Beacon has pulled all my regulars and now I have to explain to each new worker, explain how they could fail while they are there is a hammer of my mortality, my own fragility. To then have to listen to then give yet more advice like going to a herbalist who did wonders. Or "Have you seen a neurologist?" (One of Yesterdays' workers) Or explain that no, this isn’t a condition they just found, it was observed in 1900, it is just nothing so far works. But two treatments HAVE been tried with limited success (in the US). But that I, like the disease Alzheimer’s (in Canada ) can’t be officially diagnosed until after death.
If you want to die, stop reading now. Because I don't. I may have thought I did, until I faced having mini stroke after stroke until my mind was swiss cheese and though function after function is lost (today, I tried to eat and choked instead), the body drags on, like a beast toward Bethlehem. T.S. Eliot was actually a bit of an optimist; because death and the end do not always come quickly, and so it is not a whimper, but a prolonged moan, with sobs and whimpers.
I do not want to die and inside of me there is a child screaming, “unfair, unfair, unfair!” No matter how horrid a person is, do they deserve this? Linda or Cheryl or both have used the ambi-bag this week. It is a bit waking up to being hit in the stomach. Turns out the ambi-bag, which breaths for you does not care if your gut or lungs get the air. So you tend to tense and resist as a first sign of coming to awareness, of self breathing.
Today was a seating clinic for an electric wheelchair; an indoor chair (which I can take outside) with head rest and tilt for seizures. They built it so that I cannot flip out while in a seizure, as I did in the doctor’s office (and still have nightmares about). When I protested, Janet, the blunt speaking but probably more effectively caring person over this last year, said, “Does that mean you will want to be wearing a helmet then?” She is the first person who does not want to observe, she wants to solve.
Janet is the eternal optimist, except on Friday when she saw me again for the first time in several months. I had lost more weight, and we explained the medical situation. She had to turn away while she said, “And you were the person who came to me a little over a year ago because you were falling down.” But then, between then and today, she sucked it in and came back with getting a chair for me that would enable me to keep writing, to use the computer, to get to the bed and bathroom AND to go outside and use it with my limited hand function, and when that fails, she is ready for that too.
I did not know until today how little feeling or control I have in my hands. I ended up having to roll my left thumb (strong hand) sideways over the on switch to stop double to triple pressing or over-pressing and turning the chair on then immediately off. I could use the thumb and join of the index to drive forward but had to learn how to use my shoulder to back up.
The chair will be rigged so that it has an indoor headrest and an outdoor one. It will be rigged so that I will have not only head support but as things progress, I will be able to maneuver the chair without a sip and puff or a cheek joystick but with micro head movements. That however could provide an interesting demolition wheelchair if I have that feature turned on AND then have a seizure.
I’ve learned a lot in my 17 months as a manual chair user. I’ve done a lot and I hope I still can do more. Janet is moving my Wheelchair report to the top of her list, and will be hounding Blue Cross for me. She says she WILL get approval from Blue Cross in three weeks from today, maybe two; and for me, a person who has had a chair less than two years ago (they don't approve chairs except every five years). I don’t know what she sees, but she seems sure of it and if she can get that approval in 1/3 of the time, that means only extra six weeks until the custom order is delivered (two months optimally). The way she talks, it will be a bit of a race between my ability to transfer being lost and if the electric arrives in time.
That seating clinic took three hours and I had a seizure. In typical fashion she and Randy (wheelchair guy) conspired to convince me that I had somehow agreed to order the chair in Barbie Pink while I was unconscious. As I couldn’t talk my hoots of displeasure amused them. I indicated that I wanted purple, and pointed my good finger (post seizure) to the skulls on my shirt – Dark Purple with skulls!
I lay this afternoon for more than an hour trying to sleep, on valium and pain pills but could not. The voices talked while I lay thre. So when Linda came home she sat on the bed and listened, helped me while I unburdened and cried. In some ways, I can and am already ready for death, in the way one makes a list and does the chores: Given Medical Power of Attorney over – check; Arranged a will – check, Arranged a living will – check; started making special bequests known – check, talked to Linda about going on a trip, back home, leaving this behind, after I am cremated, at least for a week or two, so she is not alone – check.
But then, some days, in the quiet, I realize, that while it feels the same like when I am about to walk out the door on a long trip, like I looked around at my stuff before the trip to Japan. That feeling I get, making sure that most things were taken care of, realizing that I wouldn’t see my books or DVD’s and never got this project or that finished in time; that whatever is, is and it is time to go.
But then it sinks in. This isn't just a checklist, or a trip. Because I won’t be back. And the weight of that rushes in.
I have fought, and fought, and fought, and fought and right now, going into day 18, I cannot fight anymore. With my care agency, with the doctors, with the specialists, with anyone who wants me to suck it up. You come here and suck it up; you go between appointments up to the Y to force yourself to exercise to keep that circulation going, and then overheat that night, and yet after 6 hours of sleep get up for 5 more hours of medical appointments. No pain specialist yet, three pain pills left. I have fought and fought, and fought and what did it get me? What treatment am I on? What more is asked that I 'should' have done?
Oh yes, due to all those test, now we know how many different parts of me are non-functioning or failing. The times I am not testing I am instructing or explaining to new caregivers what doesn’t work, and what that means. I cannot escape it, it surrounds me. And yet, I want to escape it.
I have lost a year with Linda due to those tests and fighting. This week, last week, I have lost 10 days I could have send postcards to people I care about, to people who are alone, who are housebound, who are lonely; I could have MADE A DIFFERENCE but instead I was on the medico treadmill.
My GP won’t use the D. word but he doesn’t talk beyond five months; indeed in a town where EVERYTHING takes nine months, I am getting my tests done from the ordering of them in 2 days, getting seeing my new specialists in six weeks instead of six months after he talks to them. What do you think he says that makes only one of two specialist in town put me at the top of the list? That convinces them I can’t wait 5 months?
I was and am tired, exhuasted, in pain and I cannot escape. There are no tricks, there are no moves. I will not fight anymore today. Or tomorrow. I will send postcards. Becuase that is what I want to do. Though as my careworker last night said looking at my little desk and the box of postcards, “Not much of a life is it?”
It is LIFE, though, isn’t it? And that is enough. And that maybe someone smiles out there because of how I choose to live, while I can continue to find and send postcards, it may not be enough, but it is something. I have been working on another project. Maybe it will have some use, maybe it won’t. For me, Xmas and Birthdays, this year, are when I have the energy to celebrate. That is now. This is my Xmas.
I know that every day, or night or activity in which I stress myself could be my last. I also know that I have a body built of exercise done almost every day (or four times a week after disability), of never smoking or drinking. And I believe that I still have a long way to drop. Yeah, I’m below a lot of disabilities now; a partial quad without traumatic injury among others. But the heart beats on, and I can get a pacemaker when it doesn't, and the lungs breathe, and I can, it seems get a diaphragm pacemaker, if I find anyone who knows how to install it.
I want to see the cherry trees blossom again.
Right now, I get heat stroke at 22 degrees centigrade and Frostbite at 13 degrees centigrade, yes that is far above freezing (as Cheryl or Maggie will verifty if you don’t believe me). I cannot survive traumatic amputation, or surgical, not without a lot of transfusions and some luck. So, as Janet, the diabetic said, “Be glad of the bits you have while you have them.”
I asked Linda on Saturday to get pictures that day, that weekend which showed me living. Living in that day. Because I am moving toward death, and I can either, in pain and exhaustion, be dying. Or I can live, in pain, and suffering, yes, but live, the hours and minutes of smiles and getting to know people, using my gift to talk to people. To joke, to see the grass and trees, the cat crossing the street, children throwing tantrums, people angry on cellphones; and on the other days, to live, even in a room, closed off, writing postcards, writing blog posts.
I love living.
O that there were more to go around.
9 hours ago