A disability film triggers my rage at social lies, how they silence me and pain

I have been angry, full of a rage I have not felt my entire life. Rage at what is being taken away from me; the body and mental limitations which every day creep further in and yet there seems no one to blame, no organization to attack and no way to get it all back.

I just argued with the owner of the video store I go to. Because the film of the book The Diving Bell and the Butterfly, has been turned into a film of what everyone WANTS to see, and removes what was. It is a book written by a man who had a stroke which separated his spinal connection and left his brain functions fully intact but he has only movement of one eye. He was the editor of Elle magazine. He writes evocatively (dictating with his eyelid) about the REALITY of being severely disabled, of the feelings you have, the stares you get. This film is supposed to be about the book. This film is winning MANY awards. I complain that the word people use to describe it is "an inspiration", and the video store owner says, "It IS an inspiration." and tried to tell me the story. I tell him that I have read the book many times, and taught it at university many times. In fact, it is one of the few books that I keep always near me by the computer.

The owner tells me about the layout of the film and how great it is because the author is always talking to the people, making jokes they can't hear that are so funny. I ask if the film shows him lying in his own shit? Or in his own piss? He says no. I said one of the funniest parts of the book is the essay 'My Lucky Day' where his alarm on his feeding tube has been beeping for a half hour, his cathater has come loose and he is drenched in his own urine, the tape on his eye is free and the lashes are tickling his eye and a nurse comes in, ignoring this all, and turns on the TV instead, where a computer commercial spells out, "Were you born lucky?"

No, it turns out this is not in the film. Is his fear in the film, his degradation, the attendant who gets lost and thus allows his eye to see new things because the attendant is a bit hopeless at directions gets lost frequently. No. This is not in the film. The owner is angry, he explains that the film moves out from the character and we see his wife and children, his father and the mistress' point of view.

I ask if it shows how Bauby's (the author's) son afraid of him, he says no, but "maybe his son wasn’t." I say in the book he was, and he says that maybe the AUTHOR (the person who dictated it one letter at a time with his eyelid) didn’t UNDERSTAND, and that the son didn’t feel that way. And that they have a NEW PERSPECTIVE.

Well, since it is 10 years after his death, which occured several months after finishing the book, I suppose it is easier to show a film about how people WANT to see the severely disabled and the dying, as people full of fun laughter and not piss and shit and other people edging away from them. So I say in anger, "Well, a NEW PERSEPCTIVE, huh, then I will await the film Helen Keller: happy, skipping sighted girl!" And I am dismissed from the shop with a "You haven’t even SEEN the film!" from the exceedingly angry owner.

I think he is angry because I just ravaged what for him was a precious memory, a delightful experience and that fact that someone who actually IS dying and IS disabled is saying that is crap, may not be something he is happy to hear.

I have not seen all of the film, but I have seen some of it. Enough of it to convince me that the pain of seeing it would be overwhelming.

Why? Asks my caregiver who has to pick up my angry and tearful body after I return from the shop, the book in my hands again, "Why does it matter so much to you?" Because there are so few voices that tell what life is really like, particularly life from HERE and when you take that real voice away, and install a lie that everyone wants to hear instead and give it awards, then you take away MY voice too.

As an example, in the book he is taken by his family on Father’s day to the beach. There are many onlookers, and in his essay of it called "Through a Glass Darkly" he says, "I have become something of a zombie father." (you can see this section HERE of the film where that is changed to "even part of a father is still a father.") Talking of his children, "I will never tire of seeing them walk alongside me, just walking, their confident expressions masking the unease weighing on their small shoulders." Of his son, "Theophile dabs with a Kleenex at the thread of saliva escaping my closed lips. (this is word for word in the film, at which point the film stops Bauby’s words while the real person and author Bauby continues..) His movements are tentative, at once tender and fearful, as if he were dealing with an unpredictable animal." We are given the son dab with kleenex then cut to hugs and dancing, the family ALONE on the beach. Gone is the fear, the uncertainly that people have with severely disabled, with members of humanity or family they can’t understand. Gone is Bauby’s feeling "Grief surges over me. His face not two feet from mine, my son Theophile sits patiently waiting, and I, his father have lost the simple right to ruffle his bristly hair, clasp his downy neck, hug his small lithe warm body tight against me. There are no words to express it. My condition is montrous, iniquitous, revolting, horrible. Suddenly I can take no more. Tears well and my throat emits a hoarse rattle that startles Theophile. Don’t be scared, little man, I love you."

But this, all this is gone, to a scene that we (society) WANT to see, of a happy family dancing on an empty beach: no stares, no avoided looks, no overwhelming grief or loss, no fear or being startled because the very people you love cannot understand the expression of that loss.
In the clip of the beach (again here), it ends with his wife, saying "You are the most amazing man I have ever met." In the essay, Bauby writes, "The children run to stretch their legs on the beach once more before leaving, and Sylvie and I remain alone and silent, her hand squeezing my inert fingers. Behind dark glasses that reflect a flawless sky, she softly weeps over our shattered lives." Well I guess one is what we want to believe and the other is what really happens.

And I suppose the reason I AM so angry about the film and people gushing over how "inspirational" it was is because for me this IS really happening. When I left that heart specialist’s office, the ‘final’ specialists office with his leaving after saying that "once I need a pacemaker, he COULD do that." I realized that this was it. There was no Dai Boken or big adventure left in front of me. Death and suffering are not an adventure. There was only more and more weekly complications, near misses and hospital trips.

I had another TIA last night. The effects only lasted three or four hours for the most part, and I could move my right arm and most of my face again. Right now there are no specialists out there trying to save, or help or improve my life quality, for all the talk of "an auto-immune peripheral neuropathy" there is still no tests and/or follow up tests and ideas of this treatment for a month followed by that treatment: none of that. But rather a mention, of perhaps, a follow-up visit in six months or so. Likely to see the progression of nerve destruction.

And I realized that the time had passed, that whatever control I thought I had, I did not. That though I was a person whose memories were of doing amazing physical and mental feats, of wowing and impressing Linda, of leading the way while encouraging her, that part of my life was gone. Except in my ability to do things and withstand the pain they give, there is little to nothing that I can do which produces genuine awe. I cannot develop the level of skill to even call myself an athlete, though I still try to keep those body parts active, which can be active. And the simple reason for not being able to call myself an athlete is because I cannot touch my nose with my finger. I cannot open and close my hand three times in two seconds. I cannot feel many of my fingers, wrists or other parts of me. I cannot build endurance muscles, only shred them. Last night, my night worker found an open and deep sore on my wrist I had not noticed. I suppose I will need a bandage for that as with the one on my third finger where during training in the racing wheelchair I pounded the skin off almost down to the bone. It didn’t bleed very much. But then the extremities don’t.

Last night, I woke, and while I could still feel that all suffocating fear of being in a nightmare and I could hear the voices, I was awake, my head tilted toward the door, seeing the shadows in darkness. I tried and tried to move my head, toward this raspy horrid voice that was coming from my left. I knew that if I could turn my head, the dream would end; I also knew that my worst fear was there. Would I see there, a dead body, would I see a rotting corpse, or one of my sexual abusers? I tried and tried to turn my head. I needed to make that nightmare end, to stop that feeling of overwhelming horror and dread. And with a moan, I did, a few inches, enough to wake me up, my right arm was locked and the muscles in full spasm, my shoulder locked as well. My hand crushed into a collapsed ball. I looked out of the corner of my eye to see what was over there, that voice in my head, opposite my bed. It was my wheelchair.

I have been watching the Porco Rosso "It’s my life" video over and over again. I tried to explain what the video meant to me to Linda. I explained it over two days because she couldn’t understand. The plane is my body, and Marko, or Porco, is my will. There are two halves to the video. The first half is the destruction, the will is strong, the will is still talking but nothing stops that oncoming relentless destruction as the plane, my body, it is pounded, pieces breaking off, the engine destroyed, sections riddled and useless while the pilot tries to survive, using what is LEFT, what remains as best as possible. Now in the film the plane is rebuilt, better than new and Porco and the plane lead the life that I sit here, head held supported and dream about, the one where I can face an opponent on the battlefield, using my skills and talents to tell in that split second of judgement whether I live or die. But I am denied that fantasy becuase, see, this isn’t MY life, and yes I’m not going to last forever, far from it, but no, I don't get to choose how to go, how to spend my last months/years. That is part of a DREAM. A dream I have where I have control of what happens to me.


Linda first response was, "I really think she should stop watching that video." She thought this because it was upsetting me, it was making me emotional, and intense and so if I didn’t watch it then it won’t upset me any more. I think many people would feel the same way.

I showed her again the next day, explaining about the helpless frustration I feel, crying while we watched the plane: parts being shot off it. "THIS IS MY BODY!" I told her. It does not matter what WILL power I might have, or determination. It does NOT STOP what is happening to me. She understood then that I watch it because it is one of the only ways I can articulate what I am feeling inside.

The reality is this, that I as yet do not want Linda to find me with a plastic bag over my head secured with two rubber bands. What the Hemlock Society considers the "sure way" to die so that if I vomit up the pills in a semiconscious or coma state, I will choke to death anyway. And then, after dying I will probably void myself; shit myself. So is that what I want Linda to find, the smell of shit and a bag over my head with vomit? Because THAT is the choice I have, not some romantic duel, or an easy way out. No, as much as I am terrified of the time ahead, when I spend more and more time in bed, when my arms become translucent in parts where they are not oddly colored, and where even my 5’6" caregivers can lift me and move me. Terrified of how long it might take before I do die. I am not quite ready for the "sure way." So I am angry, raged. Because I am not going to spend thousands of Linda’s money chasing after the dream of…a diagnosis? I would like some pain medication that was actually sufficient so that I did not wake from pain every morning or go to sleep with it every night. I would like to stop being restrained from trying to cut to where the pain is (my bones, my heart), I would like to stop hallucinating because of the pain. I would like some treatment and the hope of a word which no one talks about: "Remission." How can there be remission when no one has ever seen it before? What is it? When specialist hedge saying I will last/live 45 years then 10, to 5, to 3 – what is it and what am I supposed to do?

And yes, a percentage of the things I do are knowingly dangerous. I do things sometimes HOPING for a stroke, or a heart attack. But many of the activities I do are needed if I am to remain out of that bed a little longer. I know how bad a heart can hurt, so no, a heart attack doesn't scare me as much as living does.

So it seems the medicals have given up on me. And society has as well. And the only person left to care if I force myself up the hill again to badminton or boxing is I. And a large part of me wonders why? Wonders what it is all about? This struggle and pain. And why, right now, it seems to mean nothing after all.