Through my life, the way I deal with problems is enduring (running marathons, training for ultra-marathons). Because I know I can endure, I overcome the problems by trying to figure out what it is and what must be done. Whether that is going to 25 places a day to find a job (and putting each application place in a book to return to visit three days later, a week later, then two week follow up – what? I’m not obsessive, well I am but I got three jobs out of it!), doing a degree, or finding an apartment or moving countries or continents. Do I need to squat/sleep in an unheated building carrying all possessions with me? No problem (okay, technically a bag lady but I prefer um…upwardly mobile).
But this problem is that my nerves are dead and keep dying, I have one disease that no one has ever survived in 108 years and at least two other diseases (or one new one encompassing all of them). If I squat on the beach, I die. My hands go blue as do my lips when I TALK, so I cannot apply the, “Anything you can do, I can do better” to it. Regular and alternative medicine have given up, I keep creating with Linda and Cheryl’s help ways and things to do which keep me alive, and functioning. But mostly I seem to be waiting. Waiting to die. And I am so past my expiration date I feel social pressure/expectations for me to die. Why aren’t I getting on with it? I keep expecting the hook from vaudeville to come out and do a neck-yank, a gong from the gong show: get off the stage!
As time units pass, it feels and it is that the things I do and the people I know or knew in life or online do diverge to extremes. I want to do things where I can show people I am still fighting, where people can root for me, or relate to me to succeed. Yet it seems the ways I can show so people understand I still fight, and I do, is close to zero.
I want to race, oh how I want to do a wheelchair race. Today I decided: the Terry Fox in just over three weeks is my next race. And another race after that. I have to train. I have to hope for no heat waves. While others are out on weekends, or for coffee or dinner, I don’t, I can’t. I am working on getting up to the Y but that will take finding three forms, filling out another and at least two days of planning. A week of work to do what someone would do in an hour or two. I try to find ways to keep myself feeling I am in the social grouping of the human race, but how? I suffer, and I fight fatigue. I do this in order to write. I spend 33% of my time doing the many checks to make sure I continue to survive. That’s it. Who has that life? A commando?
Though I rapidly declined and expressed my fears, I feel that I have, in some way disappointed those who expected the rapid end. In some ways I feel disappointed myself. This is not how dying is shown on TV and Movies, and not how it played out in my mental theatre either; to schedule going to pee, to make sure I eat, to make sure my body tempature is within certain limits, to deal with the several emergencies of the day (like 9 fingers going into frostbite; or depressed respiration, or erratic heartbeats, sky high blood pressure). So when I see the hands swell, take a pill and turn the air conditioner on; when I see my entire body suddenly have goosebumps know I am exhausted and in shock, try to get to the bed without passing out. Is the fever I have from being ill or from being exhausted, or is there another system in my body I can’t feel that isn’t working? Press on my liver and kidneys for rigidity, feel for rigidity in my stomach for internal bleeding. This is just a day. I see my nerves dying, all I can do is mark the progress. I have to overcome daily, weekly life threatening issues, but I do…and live on. Why? I can’t get a degree, I can’t get a job (tried!). I want to write. I want to change and challenge priorities. But beyond the survival it is waiting. My life is the pain, the fatigue, the waiting to die, and the waiting to see what part of me fails next. These are not things people understand. One woman said after I described part of my life, “Oh you are like the lepers in the bible.” Yeah, pretty much, except there isn’t a village of outcasts, just me.
I have anger. I have a lot of anger about time and life, and how people forget that some of us have only a handful. So many people bemoan that life is not as they would want it to be. That I get. But the attitude that this is all they can expect, that 'oh well this is my life' gets me enraged. “You HAVE life!” I scream, “You HAVE a future!” These people who can afford to spend five years not the way they planned and still have 20 years of satisfaction ahead of them. Rage is what I do to stop myself from crying.
My anger at them is the anger of myself, and being helpless. I want to tell them the way to play in an orchestra; to have a new career; to do anything takes only 1 day: the day you pick up the phone to get a lesson, join a class, what it takes. The rest is just how badly you want it and the time it takes to get there. So you started late in life, so what? You have life, a life with several stages. And who is to say you aren’t going to be a great artist at 55 if you don’t decide to try at 50. You will be saying it. And I will be dead. You could travel, you could start a new project, you could decide to make a film you can do what you want, if you decide and work toward it. I work toward staying alive. So you decided what you love later. So what? But decide. Because this is my life: growing up, going to university to prepare me for the rest of life, and my body dying until I will be dead. I know that getting angry at others, that screaming is not nice. What is happening to me is not nice. I could deal with ‘Well, this is where I start from’. Except I never get that, I never will.
Pain makes it difficult to rise above the self absorption of survival. I try. I don’t know what I have done before because there is no memory but not I am trying to post more often and bring back the humor and style when it was more of a joke. When I refused to be accepted as less than equal to any human simply because I was disabled. It is a joke. But more toward the Edward Gorey ones where I get mauled by a bear or choke on pits. I have the pop-up book of Edward Gorey called The Dwindling Party where they go in a garden maze. By the end of the book, the maze is empty and none have left; they are lost in the ivy or fallen from the gazebo, or strangled by the statuary. That is me, the Dwindling Party, so get the cheese flavored chips while they last! I want to wear naughty clothes, and I want to stop wearing them just to lie in bed...alone.
What I hate about pain is the way it brings out the things I spent years ‘curing’ myself of, the very things I despise about myself. I have OCD again: the more pain and lack of sleep the worse it gets. I have a very bad case of anorexia (I try to exercise in secret, or skip meals or days of meals). This isn’t very good for someone whose is malnourished from mal-absorption. Pain doesn’t seem to bring logic. Nor does dying make a person good, or saint-like, or even define them. It is like we both have watches on our wrist but mine is running wild, the hands sweeping so fast you can hardly see it.
I pout. I pout because I am in pain, because I don’t get choices or have strength to leave the house, or an independent job. I will be immature and I pout over when I should come to bed. I worry, or feel like the stories you hear of CEO’s who retired, spending all day in the garage on a ‘project’ until it is revealed the 50 birdhouses are done. I don’t make birdhouses. I write. Plus I am passively suicidal at all times and actively other time, even the times I do the routines and checks to keep my alive another day. Then I work on the noose or see if the hospital bed will crush my skull when I lie underneath it. I get scared sometimes and go under the bed. It seems frightened, regressed children stuck in over six foot bodies CAN still hide under the bed.
Worries and Impulse
I worry about Linda, of course but also people who send me letters….will I get to reply to all of them in time? Will Linda? Will these people think me rude simply because I died and did not reply? I worry that when I am gone Linda won’t be able to find things, or worse will put things out of order. Yes, I am actually scared that the study won’t be as comforting as I find it now if I die. And I don’t want to die because it will means losing control of where the air conditioning remote goes. And I’ll never see the TV series I waited to order on DVD. Or get to finish the manga series Loveless. Mundane things, like Xmas ice cream with peppermint in the ice cream. I can’t die before that come out, I can’t miss out. It is like the prospect of being left behind on a class trip. I want to listen to music LOUD, you know, the loud that can give you hearing loss if you do it for YEARS. hee hee.
I have, a little late, realized that there is nothing to stop me from whims. So I want to have a tattoo. I like temp tattoos and I never had one because I was worried they might not be nice or cool in 10 or 20 years. It seems I did everything so that it would be ‘smart in the long run.’ Yeah. That was great. I want to be in a rock and roll band. I want to wear cool costumes. Play lead guitar with a highly inappropriate top or lie in bed ill. Would anyone choose #2?
I want sex. More sex, more people. And yet be faithful with Linda. I want to know what phone sex IS? What cyber sex is? Am I going through a post teenage rebellion? I want to know what it is like to have a man naked and interested in me when I am not saying no or screaming, but interested sort of back. Would I laugh? Would I keep grabbing chest hair and going “Chest hair! Chest hair!” and laughing and would be he be saying “Stop that?” Would I be mean and then nice to him to see the thing rise and fall? Does it even happen that quickly? I want to know what that would be like? I am not attracted to men, but if there was someone really kind it could be like ‘thank you’ sex. I asked Linda and she laughed and was silent a long time before she said, “I don’t think I quite like that idea.” But wouldn’t say more and just laughed and left.
I get tired literally from building a bridge from my life, up in the tornado to the many lives people have and live, only to have them think it is something it isn’t. A tornado is a tornado and when you live in one, and you know it. No, it isn’t the same pain as after doing too much exercise, or the frustration of getting the wrong bread-maker. And yet, there has to be some point of contact, some way to connect my life to others, in an understandable way.
I say lives because I have one life, a thin life which I live in the cracks, between waking and sleeping, monitoring, eating food I might absorb, helped by careworkers, Cheryl and Linda. The rest of society have many lives: one in which they work, one in which they play, one in which they have exercise, one in which they have hobbies (hobbies! Can I imagine it, hobbies?), one in which they choose which friends to have over, one in which they plan events and one in which they have extra time to use having sex or being at the club or being bored. I can't imagine being bored. So how do I connect planning three days to go up to the Y, or spending a day helping match postcards or doing a race and spending a week in bed to lives where, “Well, no matter how I spend the weekend, or stiff I am, I got to roll into work on Monday.”?
My careworkers are either burning out or pulling back, as they talk so much less, but admittedly I am in bed more and more. How do they deal with thinking this is the end? I don’t, as I have a race, and Hawaii and TV shows to watch and then sell. Linda found out that there was a warning for star watching on that mountain in Hawaii for anyone with a lung or heart condition. Dying with the stars surrounding me sounded pretty good. It was a risk worth taking. True, it is hard to convince someone you don’t have any conditions when you bring your own oxygen concentrator.
I don’t want to die. I don’t want to be angry because others live and I don’t. I don’t want to regress or have OCD all over again, or PTSD show up. I want average, I want a bowling league, I want a sleazy guy to hit on me so I can tell people at work. I never really had any of that, I was always go, go, go into the future. Should I have enjoyed the ‘now’ because of the chance of a rapid decline of a 1 in multiple million disease? How should I know? I just want a bikini swimsuit like the anime girls, a ‘No future’ tattoo that I can flash, and the energy to be naughty and flirty and make Linda threaten to leave me in the car. Sigh, little pleasures.
...why did I even write this?
I'm lonely behind these walls. Isn't it natural to try to break down the walls and beat on the sides yelling 'Save me! Save me!' I know no one is going to save me. I didn't want to hurt anyone in writing this, I just wanted to stop feeling so alone.
"Walking with a friend in the dark is better than walking alone in the light."