Tomorrow I am going to write about the missing part of our day in Tokyo, the fourth day of the trip; going to Ghibli Museum and how my novel, Zed, owes itself to Hayao Miyazaki.
Today I need to write about the ‘other’ trip to Japan. Donimo said that often she and her partner while often in the same spaces took “different” trips. Because as you may know I am often accused of ‘thinking too much’, there was more than a bittersweet aspect to knowing that you are going on a trip which will not, indeed can not be repeated. Because I go down a corridor, dimly lit, of uncertain length, but which only progresses onward.
For example, my loss of weight which has steadily and consistently declined over the months came to slap my face when returning from the Japan trip. We went to Seattle Tall Girl to get some jeans. Now, I take a size 15, 14 or 13 depending. Even anorexic, though I am not very big in the hips and once you get to the bone bowl you don’t really drop a lot of sizes. So, I saw a pair of jeans that looked good and I had been having problems even with my jeans belted up twelve or more inches, which kept sliding down in the chair. We tried size 13 of the jean, and they hung from me wide enough to invite a friend. Then a size 12. Then a size 10. I haven’t worn a size 10 since maybe 8th grade. They were still too big. So we went to size 8 and even though there was an inch or two of gap it was close enough to a good fit.
Then getting new exercise bottoms, because mine are all hanging and sliding around. I had dropped from a large to a small. That’s what I wear now, small, and jeans size 7-9. And that is just since I last bought jeans, I guess a year ago, maybe less; no special diet, in fact lots of Mcdonalds recently. I couldn’t believe it because I have NEVER, even anorexic been that thin, I mean my BONES aren’t that thin.
Well, that USED to be true as it turns out I am almost certainly losing bone mass and density too. If it wasn’t for all my shoulders from all the wheeling I would more than a size lower in Junior size, I wear a large (a large in JUNIOR at Hot Topic – I wear the tank top what your 16-17 year old wears.) If it wasn’t for my shoulders I would probably be medium, or will be soon anyways.
I did not know until Seattle how far it had gone but I did know, I just didn’t want to know precisely. I mean, my skin is falling off. This it turns out is as my capillaries withdraw. That has happened and keeps happening. My hair keeps falling out and I realized that right now I am both in the best/worst condition I have been in since I got into the wheelchair. I went for a wheelchair roll, about 9K, which took 1 hour and 28 minutes, up and down hills. It was the farthest I had EVER wheeled the chair, even last year, when I was strong I was looking for 5K or maybe a 7K. Now I am planning to do a 10K. My arms, while I wheeled had Reynaud’s clear up to my collarbone on each arm. The arms were stone cold, the same arms pushing for 90 minutes. And I am doing a 10K race in my chair on Sunday. Well, except I have to go in tomorrow because it seems the last 24 hours I have all the signs of congestive heart failure, but if that doesn’t pan out, I will be doing that race.
Oh, this really isn’t going where I wanted to go. There are a few things you aren’t supposed to say and one is that “I am very smart” (not if you don’t like being picked on in school) and another is “I’m dying.” So the actual ins and outs and details of dying are glossed over. The fact is that there are types of dying, degrees of dying and I honestly believe that I will live for a few years. I am not sure what “I” will mean by then however. You see, my circulatory system is determined to save my core, my torso and head and will withdraw from anything at sign of threat. I bruise, I have arms and legs flooded with blood; blood blue because it isn’t getting oxygen. Even when I wore the oxygen on the trip there were several days I couldn’t get my fingernails to turn from purple back to blue or pink. That’s because the oxygen wasn’t getting to my fingers. And the finger I hurt a week or two before the trip seems to have permanently lost feeling in the tip. Oh here I am drifting again. It is just the slight, the mundane, the little accident turns into something permanent, something which would have had me, and would have most of the population very, very concerned and yet, for me it is just another sort of ‘thing to remember’: can’t feel that finger, try not to let it get in the spokes where it will get broken.
This is what I think is going to happen, this is MY progression. I think that some, or many types of blood pooling or trauma or just body exhaustion is going to make my body abandon a finger or fingers or toes (or elbow, as they did in Kyoto) and then they will turn black and eventually the medical intervention will fail or fade and it will require intervention, or the capillaries and veins inside will collapse and withdraw. And that is when the gangrene will start. And then the amputations. Steady, systematic amputations.
You see, they can keep my heart beating, they can even keep my lungs moving but they can’t force it to covert oxygen and they can’t turn off or change how it moves blood around. On the last two days of my trip my entire circulatory system switched, and the left hand became the red hand and the right the yellow, and then it switched again. That won’t stop the TIA’s, I’ve already had at least one of those. So my language center will go, my coordination for the left hand is very poor, and my nose is entirely safe from ever getting touched.
I think I could handle the first amputation or the second. Someone has shown me that, you can get used to a lot. It is just it won’t stop, once it starts. And once I do get bedridden, once I stop pushing myself to the danger zone, or stop sweating, then it will all go faster – no sweating at all and just a speedy withdraw as my blood keeps retreating against an enemy which doesn’t exist; sacrificing fingers and wrists, and elbows to something that comes from a mad messenger sending loopy signals from the brain. And the TIA’s, well, that’s sort of like taking a gun to my brain, a little bit at a time.
I enjoyed the trip to Japan: I engaged with anyone I could, I fought injustice as I saw it, I thanked those I saw and those who helped and I savoured it. I also almost wheeled myself down into the track in front of trains about 10 times. When you pray for a massive stroke night after night then maybe things aren’t looking up. And in many ways my illness has provided me the chance to become a better person, the opportunity to meet people I am proud to call friends (lucky really). But I am terrified, terrified. I lie in bed terrified. When people have tried to duplicate half of what will almost certainly happen to me, they have been called monsters, they have been executed.
“This,” I said to Linda in the Ghibli shop, “This is the card (it was a 3-D window card), I want at my bedside (once I am primarily in bed).” In my thoughts it was that this is the idea of the idyllic and the verdant I want to hold on to. I wrote some of my fears to a friend in an email along with talking about the pain, the pain in my bones and so bad that I believe I must have cancer. She wrote back and cheered me up by saying that I certainly almost wouldn’t be able to recover from an amputation operation, with my compromised system. I certainly wish she isn’t just offering false hope.
No, I don’t go around saying, “This might be my last….”, but I am more afraid of what I would become by living than I would by dying. Could I be a heat intolerant torso and some stumps and still be me, assuming there wasn’t a great many TIA’s? Of course, but it scares me, the on and on of it. I want to live very much, because I like being alive and the possibilities it holds. Now, it is the probability of those possibles which terrify me.
I guess that is what put me in shock about the clothes, knowing I will NEVER be a size 12 again. Because I am eating; I am eating carbs, and I am losing weight. I never knew how much it meant to have a body until it started changing without me. I have hypothyroidism, I sit in a wheelchair and I am using a smaller seat cushion than a year ago, I am significantly thinner and I sleep the majority of the day. That shouldn’t be possible.
It just seems that there are worse things than being bricked up to starve to death, there are worse things than a pit and a pendulum, there are worse things than dying. There is being kept alive.
I am sure that I will absorb this and come up with new plans and schemes, but this isn’t post “dream trip” blues talking, it is just, I didn’t want to ruin the trip for others by putting in what was increasingly on my mind. Maybe because I have to write a horror story and as much as I think about it every day for the last several weeks I can’t come up with anything really much more horrible than what I know is coming and is already here. Northing more horrible than being Linda and watching it happen to someone you love.
I did not use my blood pressure cuff on the trip, because it was not going to stop me doing something. Indeed only passing out or heat exhaustion seemed to stop me because I did not know how to come back home. I knew how to pay that price for the bamboo path, or the nights of old Kyoto, or the geisha district of Kanazawa or getting a Kimono. I don’t know how to pay that price for getting up, getting showered, getting a sandwich.
I wish I could pull this all together, to make it poetic and neat and artistic and not a vision of me, lying there a torso and a head like Johnny Got his Gun from Trumbo, only not from an instant of walking on a land mine but a year, years of losing parts of me physically and mentally.
Here is a short film called ‘On your Mark’ from Miyazaki which has never been released that I know of, it is six minutes and tells a story without words. I think you will like it in itself. Before I left for Japan I started writing Miyazaki a letter, because he is obsessed with flying and his films are about flying. I wanted to ask him to do a film about disability, because I think we know more about and we have to learn to spread our wings more than many other people. And that life in a bed can be a story of flying.
23 hours ago