My Left Foot as seen by a quadriplegic

Posted by Jessica Jewett 8 Comments »

Daniel Day-LewisIn my lead up to the Oscars next month, I’m slowly watching Oscar movies I haven’t yet seen in my spare time. A couple of nights ago, the selection was My Left Foot.

I have avoided this movie since it came out despite Daniel Day-Lewis being in my top three favorite actors, if not my number one (he’s neck-and-neck with Clark Gable in that race). Something about My Left Foot has always terrified me. I can’t quite explain it but I’m sure you can draw conclusions. I’m severely disabled. Christy Brown was severely disabled. I’m an artist and writer. Christy Brown was an artist and writer. The idea of watching a film with Daniel Day-Lewis reportedly mastering being so severely disabled seemed to fall under the category of “hitting too close to home” for the last 20-something years. The problem was I don’t like claiming people as “favorite” in anything without examining their entire body of work. So I set aside my peculiar fear of this movie, cuddled my dog for comfort, and reluctantly clicked My Left Foot on Netflix.

It took twice as long to get through the entire movie as its runtime because I kept having to stop and take breaks. By the end, my eyes were so red and glassy from the exhausting emotional experience that my family tiptoed quietly around me as if I might have another one of my panic attacks to which I am prone. As I suspected, I would not have been capable of watching something like that when I was younger. Following my instinct to not see it 24 years ago was correct. I saw so much of myself in Christy Brown that it was like having certain old wounds ripped open and exposed to the world. Something about Daniel Day-Lewis – a decidedly able-bodied and athletic man – so thoroughly and masterfully crossing over into my world, so to speak, disturbed me in a way that I haven’t yet been able to understand. I think it had something to do with being reminded of how easily he could cross over into my physical world, while I can never cross over into his physical world. I will never climb through the rugged Irish countryside for solitude, or experience the thrill of speeding on a motorcycle, both things that he reportedly does. Human experience will always be limited for me. Yet this man who immersed himself in my world for this film managed to drag out the darkest parts of this kind of life into harsh, blinding light just by the pain in his eyes and the rawness of his performance. I didn’t know whether to love or hate Day-Lewis for exposing the darkness.

Day-Lewis’ interaction with the disabled community, and dedication before, during, and after the film made it even more compelling to me. He’s famous for being “obsessive” and “so Method” in his movies. I read that he spent months at a hospital for severely disabled people in Ireland getting to know them and learning to live that way. During filming, he couldn’t jump in and out of character, so he remained in his wheelchair even when the cameras weren’t rolling. Crew members were reportedly irritated by having to haul his wheelchair around for different setups. People had to feed him and give him drinks on breaks as well. When his English agent visited the set, he reportedly refused to jump out of character and the agent left in a frustrated huff. Being contorted in hunched positions that come with cerebral palsy broke two of his ribs but he kept filming with little to no complaint. And when he won his Best Actor Oscar for playing Christy Brown, he took the award back to the hospital where the disabled patients taught him to live that life and he spent a day letting them look at his Oscar in person and spent time with them.

Truthfully, there was no other way to approach this story from where I sit. If you open yourself to the claustrophobia of existing in a body that won’t obey your alert and beautiful mind, you have to be willing to go through the mental anguish of feeling trapped, rejected, and misunderstood. You have to be willing to find a way to push yourself through the imprisonment into a world of your own creation while everyone around you seems to push you back into entrapment for the sake of simple survival. If I ever got to speak to Day-Lewis, I would ask him directly if he ever felt trapped in his own body while filming. If so, then he truly grew as a human being.

Many parts of the film could have easily been lifted from my own life. I was rather bothered when teenage Christy was with the other neighborhood kids playing spin the bottle and none of the girls wanted to acknowledge it when the bottle pointed to him. His guy friends stood up for him and the girl only kissed his cheek because they pressured her into it. Christy always seemed to be so painfully aware that his peers were moving past him and having boyfriends or girlfriends while he was not. He was a normal adolescent inside though, and craved those romantic connections. He liked the girl and painted her a sweet little picture to tell her so. At first, she swooned quite dreamily, thinking the romantic gesture was from his brother. When she realized it was from Christy, she took it back to him and told him she couldn’t accept it. She couldn’t accept the feelings of a man with such a severe disability, made obvious by the fact that she thought it was wonderfully romantic until her friends pointed out the true artist. Christy was largely left behind his peers.

The same story repeats itself over and over again no matter if it’s 1950 or 1990. I don’t have cerebral palsy like Christy did but my disability is no less “frightening” or “intimidating” to many who cross my path. I became aware of exactly how unsuitable I was as a girlfriend in middle school going into high school. Like every girl, I had my fair share of crushes. I watched my friends pair up, have first kisses, go on dates, etc., but it never happened for me. I learned to make boys laugh in an effort to make up for my physical shortcomings, and they were perfectly happy to pal around with me, but no boy ever had a crush on me. I knew exactly why. I knew as clearly as I knew the pain in Day-Lewis’ Christy when he was rejected more than once by ladies. Occasionally, I got brave early on if I liked a boy. I would tell him so. Rejection without looking me in the eye or giving me a clear reason why came too many times and I basically stopped trying when I reached my junior year in high school. I never had dates to dances, I never really went to parties, and I never had a prom date. The first boy I ever really loved came along my junior year – more than a simple crush – but by that time, I lost all nerve to try. Carl was on the football team and his girlfriend was a cheerleader. I never stood a chance and I knew it. Not only was I in a wheelchair but I lived with an abusive stepfather, so I was rather insecure, quiet, and unwilling to expose myself to more pain. He may or may not have known about my feelings – I don’t know. He was my friend regardless. To a teenage girl in love, though, friendship was just a consolation prize.

Christy Brown had a similar relationship in the film with his doctor. He fell in love with her through their friendship and she married someone else, which shattered the last hope in life that he had, and led him through the black door of considering suicide. The film depicts Day-Lewis as Christy grasping a pencil with his foot and writing a suicide note – “All is nothing, therefore nothing must end.” He then dropped the pencil and picked up a straight razor, which he attempted to use in slashing his own wrist but failed because of his own limitations. This was when the thought popped into my head: “I didn’t know whether to love or hate Day-Lewis for exposing the darkness.” Suicidal tendencies or full-fledged suicide attempts are a very dark secret among the disabled – so much so that we don’t even talk about it among ourselves in hushed tones. When the full weight of never leading an easier life and facing a life of solitude settles upon your shoulders, the weight presses you further and further into the grave if you allow it.

My method was not going to be slashing my wrists. Women very rarely mutilate their bodies in suicide, I’ve learned since then. I’ve been suicidal twice in my life to the point of formulating plans of how I was going to do it. The first time was as a senior in high school. My former stepfather was regularly sexually assaulting me for quite some time, combined with a lot of other issues related to facing 60 more years as a quadriplegic. I calculated how many sleeping pills it would take – not many because I’m small. The second time came at age 24, a few months after my miscarriage. I was in an abusive relationship and entirely blamed myself. If the only people who wanted to be in my life were parasites, then there was no reason to live. That time, it was going to be oxycodone and vodka. And as I watched Christy Brown fail at his escape attempt, I thought again what a cruel twist of the universe that people like us couldn’t even physically accomplish the escape. These severe disabilities are the only prisons from which escape is truly impossible. I have since found better spiritual footing and I abandoned those plans after the second time, but the devil does lurk in the darkness once in a while.

The only time I felt a sense of calmness or reprieve in this difficult film was when Christy was painting. There were only short glimpses of Day-Lewis acting out the process but it was calming to see it. Day-Lewis apparently could not master it with his left foot but he could with his right foot, so many of those scenes were shot through a mirror to give the illusion of being his left foot. I’m not surprised. I’m right handed and my right leg is also dominant. Day-Lewis is also right handed, so his right leg would be dominant too. In the opening sequence, Day-Lewis pulled a record from its sleeve, put it on the record player, and set the needle with his foot. He practiced doing it so much that he did it successfully on the first take. Unlike Christy Brown/Daniel Day-Lewis, I don’t have the flexibility or dexterity to paint, write, etc., with my feet. I do it with my mouth as you can learn here. Painting and writing are indeed the only times when I feel wholly at peace and rarely think of the difficulty in my life. I expect at least part of Christy Brown must have felt that same sense of peace. That may be why I was able to relax when watching those sequences, although they may still have been disturbing or pulled some other emotion from watching it. I especially related to the sequence in Christy’s gallery showing in which being a “crippled artist” vs simply an artist was briefly mentioned. People like Christy and me have probably never felt (or past tense as he is dead) secure in knowing whether people admire our art because it’s good or because we created in weird ways.

My only problem with My Left Foot was the somewhat misleading end. It appeared that Christy Brown finally got his happy ending by marrying Mary Carr, but what the movie doesn’t show is her alleged and probable abuse within that marriage. I confess, I was disappointed when I read the allegations. I had hoped Christy found some peace and contentment in life, but it has been reported that his wife was repeatedly unfaithful and bruises on his body at the time of his death suggested she was beating him. As disappointed as I was, I can’t say that I was entirely surprised. Abuse rates among the severely disabled have always been shockingly high compared to other minority groups. Among women, reports say that between 57% and 63% will be sexually or physically abused in their lifetime. People in general with disabilities are twice as likely to face abuse than the average population. I have been abused in every form by different people in different periods of my life, so these statistics are, unfortunately, a grim reality. I think the statistics were probably higher in Christy Brown’s generation. Still, I wanted to believe he got a happy ending like the film suggested but I suspect it wasn’t that happy. It is like filmmakers to tie up everything in a pretty bow though. As a storyteller in my own right, I understand why the ending happened the way it did.

Part of this passage written by Christy Brown himself was quoted at the end of the film. It struck me because I could not have found these words in my own vocabulary, yet it reflects my heart and mind as exactly as it reflected his heart and mind. Read:

“It would not be true to say that I am no longer lonely, now that I have reached out to thousands of people and communicated to them all my fears, frustrations and hopes which for so long lay bottled up inside me. I have made myself articulate and understood to people in many parts of the world, and this is something we all wish to do whether we are crippled or not. It is a common need to make ourselves understood by others, for none of us can live entirely alone or by our own devices. Yet like everyone else I am acutely conscious sometimes of my own isolation even in the midst of people, and I often give up hope of ever being able to communicate with them. It is not the sort of isolation that every writer or artist must experience in the creative mood if he is to create anything at all. It is like a black could sweeping down on me unexpectedly, cutting me off from others, a sort of deaf-muteness.”

I couldn’t have said it any better myself. The film was as dark as it was inspiring. And I still haven’t decided whether to love or hate Daniel Day-Lewis for exposing the darkness of imprisonment within these bodies in his performance. Once you open the door to hell, you cannot shut it again. You can only spend your life trying to stay on the safe side of it where inspiration, art, and love exist. Although I’ve looked through the doorway to hell more than once, just as Christy Brown did, I’m still here and I still know how to smile, paint, write, and live.

Jessica Jewett

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16th century painting of Arthrogryposis

Posted by Jessica Jewett 4 Comments »

Today, my friend sent me a painting through a text message and said, “Have you seen this before?” Indeed, I had seen it once many years ago but I was never able to find it again. I want all of you to look at it because it’s a shocking miracle that this man was even born. It was painted in the 16th century and it’s Austrian, which is why I was never able to find it. I was looking through English searches. The painting has been housed in the art collection of Ambras Castle near Innsbruck since 1977 (my German isn’t so good anymore but I think that’s what it said). It’s listed in the catalogued under the entry “Portrait of a Cripple”. Nothing is known about the man that I could decipher. They didn’t even know what his disability was until another woman with Arthrogryposis recognized the signs.

Take a good long look at the painting and then I’ll write more below.

16th century Arthrogryposis

I know, it’s a little uncomfortable to look at if you’re not used to untreated Arthrogryposis deformities. I have a hard time looking at it myself because it’s a glaring reminder of what I used to be. I’m stunned that this man even survived childbirth. My birth in 1982 was very difficult because, as you can see, the body was extremely deformed. I was not only breach but I was coming out knees first if I was going to be born the traditional way. They performed a C-section instead.

This man’s body is a replica of how my body looked when I was a baby. I have endured nearly 20 surgeries in 30 years to have my body’s deformities corrected as much as possible. In the 16th century, this man never had those opportunities. The fact that he survived into adulthood is absolutely shocking to me. The deformities can often be life-threatening in Arthrogryposis if the case is as severe as his back then and mine today. Spine curvatures can cause the ribcage to grow into the organs, for example. Doctors told my family that I would die before reaching adulthood if they didn’t do a full spinal fusion in 1989, which is why I’m so small. When a spinal fusion is done, it prevents the body from growing much more, so they generally prefer to wait until after puberty. My surgery was done before puberty and that meant spending my life as a petite little flower, as my uncle says. Ribs can be deformed and compress lungs – another manner of dying young. Heart disease and neurological problems seem to develop at higher rates with Arthrogryposis as well. And then I think of the chronic pain in my life. I have had osteoarthritis since I was 6. Tight ligaments and tendons also cause chronic pain. Fighting muscular atrophy is painful as well. I take narcotic painkillers on a regular basis. What did this man do in the 16th century for his chronic pain?

I can’t wrap my mind around living with Arthrogryposis in the 16th century. I wish I could have known this man. Let it be a lesson to all of you that surviving anything is possible.

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Write for Arthrogryposis!

Posted by Jessica Jewett No Comments »

Okay, loyal readers, I’m putting out a call for help.

As you know, I have a rare and difficult congenital condition known as Arthrogryposis Multiplex Congenita. Every year, there is a conference for parents with children who have this condition as well as adults with it. I have never attended the conference, but I was told that a doctor in attendance, Dr. Hall, called on everyone to begin a letter writing campaign to Congress and the Senate encouraging approval of federal and state funding for research and development of standard medical treatment.

You see, Arthrogryposis is a condition that has virtually no notoriety, no proper research, no celebrity patron, no nothing on a standardized level. Why, you may ask, is it important for there to be funding for research? For starters, Arthrogryposis Multiplex Congenita (AMC) means multiple joint contractures present at birth. A joint contacture is a joint that lacks normal range of motion, or in other words, is stiff and/or curved. More than 3 joints have to affected in 2 areas of the body to have a diagnosis of AMC. Approximately 30% of newborns with Arthrogryposis will die within the first few months of life because they have a lethal form of the condition that causes nervous system dysfunction. There are roughly 400 types of Arthrogryposis, and 1/3 of those cases are classified as Amyoplasia Arthrogryposis, which is non-genetic and nobody has a clue of what causes it or why.

In other words, it’s absolutely inexcusable that there hasn’t been enough proper research to at least develop a better medical treatment system than the experimentation we all went through as children. I was born about five years before any doctors remotely knew what to do, which meant that I was shipped to different hospitals in different states looking for somebody who could help. I don’t even know which type of Arthrogryposis I have. I’ve had roughly 18 surgeries beginning before my first birthday. Most were deemed as, “Well, this might work but we don’t know.” Many of my surgeries had no affect on the quality of my life whatsoever. Many were brand new in my generation and have now become standard “we’ll try it” surgeries for everyone younger than me. Doctors who were faced with treating Arthrogryposis in my generation and the generations before me are true cowboys of medicine because they had to take risks to try and help us. Their work has largely been ignored by the world because Arthrogryposis, like so many other rare congenital conditions, has no celebrity patron. We have no one fashionable to be our spokesperson, so we have to be our own spokespeople.

There is no cure for Arthrogryposis. There is only treatment to reduce the severity of the joint contractures and increase muscle strength to maximize the function level of the individual. Treatment often includes stretching the joints multiple times per day, serial casting, physical, occupational and speech therapy, splinting, bracing, tendon releases and lengthening, osteotomies (bone cuts), and external fixators. All of these things are extremely painful (speaking from personal experience). The fact that we keep putting ourselves through these treatments knowing there is no cure but only a hope to make life bearable is also quite mentally painful. I’m 30-years-old and I’m still facing major surgery. The contractures in my feet have reverted to the way they were before the first time they were reconstructed. It involves releasing tendons, breaking bones and re-positioning them. I will be facing 3-6 months of recovery once they decide to go ahead with it. This is just a glimpse at one surgery. Now picture going through it 18 times on different parts of your body.

Do you see why we need funding for better research and development of medical treatment?

I’m asking you, along with Dr. Hall, to help us bring attention to our legislative bodies. Email is not good enough. One tangible paper letter is equal to dozens of emails. You can look up your local state representatives here: http://capwiz.com/yo-demo/dbq/officials/ and when you find their addresses, send letters. Please commit to sending your letters between now and December 15, 2012, to make a concentrated impact. It helps if you talk about people you know with the condition, the way they’ve struggled to find proper medical treatment, what further funding would do to improve their quality of life, etc. If you don’t know anyone with Arthrogryposis besides me, I give you permission to reference me and use my picture. The point is to make the government understand that a 30% infant mortality rate is unacceptable, and so too is it unacceptable that there are virtually no medical studies to identify the cause of this condition, as well as long-term studies on treatment success.

Specific areas of research that we need you to mention in your letters include finding the cause of Amyoplasia (the sporadic type that nobody understands), mapping the genes in genetic types, and long-term outcome studies need to be done for common surgical procedures in this diagnosis. I also want to push for research in women’s medicine associated with Arthrogryposis. Roughly half of my doctors tell me I can have children like other women. Half laugh at me when I ask. Other women with Arthrogryposis are generally left in the dark as far as women’s health and sexual health. We’re all left to decide on the risk of pregnancy with very little information on the success or failure of it.

Please, please feel to contact me if you want help writing your letter. I will post my own letter as an example as soon as I write it.

Helpful links:

No idea where to start in writing a letter to your congressmen?! Start here: www.tiny.cc/writeforamc

Put fact sheets like these in your letters.

General Arthrogryposis fact sheet: www.tiny.cc/amcawareness
Amyoplasia Amyoplasia fact sheet: www.tiny.cc/amyoplasia

If you choose to write your state representatives on behalf of those of us with Arthrogryposis, I personally thank you from the bottom of my heart. Again, please feel free to contact me if you need help.

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