The fact that I am disabled is deeply ingrained in my mind. Everything I do, every funny, awkward, unusual, and annoying event in my life—even boring daily routines like brushing my teeth—is affected by my disability. Living this way for 20 years has made me almost numb to it. When I’m lying on my bed, peeing into a jar, staring at the ceiling while I relieve myself, I’m not thinking, “This is an odd way to go to the bathroom compared to able-bodied people, what a peculiar result of my disability.”
I’m just going to the bathroom, probably not thinking about anything.
Obviously, I’m aware of all the ways my disability makes my life abnormal. If I weren’t, this blog would just be pictures of kittens, and Justin Bieber, and GIFs of Tyler the Creator laughing, and more pictures of Justin Bieber. But I’ve never truly taken the time to consider how my disability has helped shape my identity.
I’ve been working on a project lately that has unintentionally forced me to think about my own disability identity. In this post, I’m going to attempt to make sense of what I’ve been learning about disability identities, and subsequently, what I have learned about myself along the way.
As I mentioned a few months ago, one of the psychology professors at Moravian College, Dr. Dunn, asked me to work with him over the summer to compose an article on disability identity. I agreed immediately even though I admittedly know very little about psychology. Dr. Dunn has written an immense amount of work and done numerous studies in the psychological field of disability, so I figured it would be a learning experience for me. It was.
At its most basic level, for someone with a disability, disability identity involves feeling positively about oneself as an individual and identifying with the disability community as a whole. For our project, we wanted to look a little deeper and develop a model that identifies the most prevalent themes in all disability identities. To do this, we surveyed (or, are surveying, since we are still working on it) a variety of narratives published by people with disabilities of all types. This style of research allowed us to pinpoint recurring themes that are experienced by many or all people with disabilities.
We’ve identified six major themes that are encompassed in the identities of most people with disabilities: affirmation of disability, communal attachment, self-worth, pride, discrimination, and personal meaning (Dunn & Burcaw, 2012, in progress).
As I read these stories by other people with disabilities, I couldn’t help but to consider how each of these themes plays a part in my identity. Here is my reflection on a few of those themes.
Affirmation of disability
What it means: The belief that living with one’s own disability is a valuable experience that contributes to a positive personal identity.
On the surface, I believe that I possess this characteristic. Living with SMA has opened a world of opportunities for me, and you only have to read a few of my stories to know that I genuinely enjoy the fuck out of life. The list of amazing occurrences that were byproducts of my disability is incredibly long. Until a few years ago, one of the movie theaters in Bethlehem allowed people in wheelchairs to watch movies for free. I guess their logic was that it would take a miracle for us to make it out of our houses more than a few times a year, so if we happened to overcome all the odds and make it to the theater alive, we should be rewarded with a free movie. Obviously, I abused the free movie privilege so much that I wouldn’t be surprised if their reason for eventually revoking the policy was, “that asshole kid in the wheelchair who saw a movie every other day for three years.”
However, as I read more about affirmation of disability, I found a small caveat that I could not agree with. In a study of people with disabilities, it was found that many of them were strongly opposed to receiving any type of treatment that might cure them of their disability. Granted, this is not to say that one must choose to not be cured in order to have a positive affirmation of their disability, but I was baffled by the results of this study.
Sure, growing up with my disease has substantially influenced the person I turned out to be, but given the hypothetical opportunity, there is no question in my mind that I would choose to be cured. My identity and personality would not suddenly vanish just because I’d be able to walk and run and kick people in the face. Yes, I love my life, but I would be lying if I said that I’d choose to stick out the fight with SMA if I didn’t have to. That’s not like… cowardly, is it?
What it means: A desire to affiliate oneself with the disability community as a whole, a preference to associate with other people with disabilities.
If you read my story about muscular dystrophy summer camp, you’ll remember that I generally don’t enjoy hanging out with other people in wheelchairs. It may be because I developed an aversion at a young age and never gave myself a chance to get to know anyone that uses a wheelchair. It may also be that I’m not around people in wheelchairs very often in everyday life. It may be that I see everything I dislike about myself in other wheelchair people, so I avoid them to protect my self-esteem. It may be that I’m just a terrible person. In that regard, I do not possess particularly strong feelings of communal attachment.
I do, however, realize that I am a part of the disability community, and that we have a lot in common. We all face the difficulties of living in a world that is still far from being handicapped accessible. When I see a restaurant that has one fucking step to get into the front door, I don’t get angry because I personally can’t eat there, but rather, at the fact that the owners could be so ignorant. They might as well hang a sign on the front door that says No Wheelchairs Allowed. I’m looking at you, Subway.
What it means: The idea that one values oneself, in regard to one’s ability to perform tasks that are deemed important by the individual, others, or society (Dunn & Burcaw, 2012, in progress).
Let’s be honest, there are just some things that I will not accomplish in my lifetime. I’ll probably never win the MLB home run derby, and chances are I’m not going to break any Olympic records. I will never tie my own shoes or wipe my own butt. I will never be able to drive a car, or a boat, or a plane. I’m pretty sure I will never become the President of the United States.
Society values all of those things.
But I will make you laugh, and I will go to school and get a degree, and I will do awesome things with my friends, and I will do stupid things with my friends, and I will try my hardest to make my nonprofit succeed, and I will get my book published someday, and I will kick your ass in FIFA, and I will get a real job, and I will live life with intense passion, and I will make you laugh, and laugh, and laugh.
And that’s what I value.
This is a new blog written by a 20-year-old with the same disease as me. He’s a cool dude and I have read some of his stories and they’re really great. He’s going to post his first story soon, but he asked me to give him a shout out so that he would have an audience when he posts. It’s definitely well worth your time to add him to the blogs that you follow.
Since my disease is progressive and medical researchers are taking their good old time in searching for a cure, the best I, or anyone with SMA, can do is attempt to slow the progression of the disease. I’m not talking about steroids or weightlifting; my muscles are going to continue to deteriorate no matter what I do because my body didn’t feel like developing the necessary proteins for muscle creation and maintenance while I was in the womb. I was the laziest fetus you’ll ever meet.
That being said, physical therapy can help slow the effects of muscle atrophy. I’ve been getting physical therapy on a regular basis since I was a baby, and the concept of how it helps me isn’t something I’ve ever really thought about or tried to explain to someone; it’s just a part of my life, but I realize that it might be slightly confusing to understand, so before I start with the funny stories, I’ll try to explain how physical therapy works for me; this is the longest sentence I’ve ever written; it’s never going to end; yes it will.
I will use my wrists as an example. So first of all, take a look at them:
Yuck is right! That’s one big mess of atrophy at its finest. A long time ago, when I was in early elementary school, my wrists look completely normal. They were straight and I could bend them in all the normal directions. Now, I can’t straighten them much past the 90° angle that they’re fixed at in the picture above, and if someone helps me straighten them, they still only straighten to about 110°.
In physical therapy, my therapist stretches out all of my muscles so that the atrophying process progresses at a slower rate than if I didn’t receive physical therapy. Think about it, when you sit in one position for a long period of time and then stand up, your leg muscles feel a little sore, right? The muscles in my body remain in relatively the same position all day every day, which is why they atrophy. My disease causes my muscles to deteriorate and weaken, and since I never move, that get stuck in the position that they’re in all day. Physical therapy serves the same purpose as standing up after you’ve been sitting for a long time; it stretches my muscles out.
For people with SMA, physical therapy consists of prolonged stretches of all the limbs. My therapist will push my wrists, or my knees, or my ankles, as far in the correct position as possible and hold it there for several minutes. The simple truth is that I’m sitting in my wheelchair a hell of a lot more of the time than I spend at physical therapy, so by a matter of reality and the demands of daily life my muscles get more atrophied over time. This means that, today, my physical therapist can push my wrist to 110°, but my muscles stop straightening at a certain point and go no further unless they tear, strain, or sprain (which has happened more than once and I will tell you about later). It’s kind of a losing battle when you think about it, but after I spend an hour in physical therapy I feel substantially looser, which is a great feeling. Also, imagine how fast my muscles would atrophy if I didn’t receive physical therapy on a regular basis, so there are definitely some benefits as well.
Over the years I have had some pretty unique experiences with physical therapy. I guess we’ll do this in chronological order.
From my toddler years until about a third or fourth grade, I received physical therapy from a woman that my family knew who had a private physical therapy practice out of her home. She basically only treated kids with some type of disability, so she really knew what she was doing despite the fact that therapy took place on her living room floor.
I absolutely hated physical therapy in the worst way during these years of my life. The shitty part about stretching out an atrophied muscle is that it hurts, and like I said before, if you stretch it too far, there can be serious physical injuries that result.
However, I was also kind of a bitch when it came to pain back in those days. Growing up, I was shielded from pain by my wheelchair and the fact that I didn’t do much physical stuff that could result in me getting hurt, so I didn’t learn how to tolerate pain as fast as normal kids do. This is why I hated therapy so much. Although my naïve brain exaggerated the pain, it still hurt, and I wasn’t old enough to appreciate that my physical therapist was actually doing a world of good for my body by stretching it out. I only received therapy once a week back then, but whenever that day rolled around, I would get all panicky and try to find ways to get out of having to go. Sometimes I would wait until my mom said it was time to go, and then I would pretend like I really needed to use the bathroom all of a sudden to waste a few minutes.
During those early therapy days, I developed a hypersensitivity to pain. I would anticipate a stretch hurting before my therapist had even started the stretch, and I would inevitably start yelling, “OW OW OW OW!” The problem then became that my therapist didn’t know when I was anticipating pain or actually feeling pain, and because of this I experienced some of my first muscle sprains during this time.
I want to try for one second to convey how terrifying it is to have absolutely no power over the muscles in my body while they’re being stretched. If you were at physical therapy, and you felt like a stretch was going too far, you could easily tighten your muscle, stopping the stretch and avoiding the pain. I can’t do that. I have to rely on verbal communication and trust that my physical therapist will listen to me when I say that a stretch is going too far and that I’m about to get hurt, but sometimes verbal communication just isn’t enough. Many times throughout my life, for a multitude of reasons, this was the case.
Forget chronological order. This is a good place to tell you a story because it will illustrate the horrifying experience of being stretched until my muscle sprains and not being able to do anything about it.
When I was in middle school I started receiving physical therapy at a rehab facility that is associated with the main hospital in my town. They have a whole pediatric division of the facility, where they mostly treat kids with disabilities. For my first few years at this facility, the same guy treated me each week, and to this day he is my least favorite physical therapist of all time.
This guy, we’ll call him Brett, is in my opinion the absolute worst kind of physical therapist, which is kind of ironic because the stories he told indicated that he was kind of a big deal in the world of physical therapy; although, I later found out that many people believed that Brett was an impulsive liar. He was the kind of guy who would complain about having to fly down to his beach house for a weekend to meet the maintenance man. Anyway, Brett gave less than half a shit about the opinions of his patients. He was a middle-aged man who acted like he’d been sent to Earth by God himself to perform physical therapy on the less fortunate. Granted, he was probably a great physical therapist for most other people, but he just refused to understand that my muscles could not withstand the same amount of pressure as everybody else’s. I think it was his secret goal to completely straighten all of my muscles, even though that was physically impossible by the time I started seeing him.
There is one incident that took place as a result of Brett’s power-complex that sticks out in my mind as the worst physical therapy experience I’ve ever had. I was probably 14 or 15 years old when this terrible incident took place. It was an evaluation night, which was something the physical therapists did four times a year for each patient to measure if any progress was being made. First of all, this system makes no fucking sense for someone with a disease that gets progressively worse; I’m obviously never going to make progress, but that’s beside the point. During an evaluation, Brett had to use a protractor-type device to measure the maximum angle that all my muscles could be stretched to. Brett fucking loved evaluations; I lost sleep worrying about them whenever one was approaching.
My knees have always been the most severely affected part of my body, since they move the least on a day-to-day basis. So in the typical “do exactly opposite of what Shane wants” Brett fashion, he stretched my knees the most aggressively of all my other muscles. I will give him this much credit, MOST of the time when Brett was stretching my knees and I began to wince, he would back off so I didn’t get hurt. By the age of 14 I had developed a much higher pain tolerance and didn’t cry wolf every time I thought a stretch was going to hurt. However, I always felt like Brett kind of doubted if I was ever in real pain when I yelped during a stretch, and I only yelped when I felt legitimate pain, so you can understand the constant underlying distrust I had towards him.
On this particular evaluation night, Brett boasted that we were going to set a record for my knees by performing a prolonged, gentle stretch, as opposed to a short, aggressive one. I felt sick at the thought of straightening my knee more than it has ever been straightened, but slow, long stretches were usually less painful, so I didn’t argue with him. My hands started to sweat buckets as he began to stretch my left knee. As the minutes ticked by, I laid on the therapy table and concentrated on trying to relax my muscles, which is pretty much physically impossible, but something I like to mentally tell myself I’m doing to stop a stretch from hurting. I remember looking out the tiny window in the corner of the small room we were in and noticing that it was considerably dark for 5 PM. This took place during the winter, and I remember having a brief thought that it might snow and that school would be canceled. I forgot what was going on for a split second at the thought of a snow day. Then he started to stretch my knee too far.
I could feel my muscle reaching its maximum stretching point, the point where I know if the therapist continues to stretch it any further, something is going to give and I’m going to get hurt.
“Oh God, ok no further, no further. It hurts!” I said in a hurried voice to try to get him to stop.
“Just a little longer, we are almost there,” replied Brett nonchalantly as he continued to push down on my knee.
These were the exact words I didn’t want to hear him say because I knew no matter what I said there was no stopping him from going further. He pushed even harder on my knee and I began to quietly whimper, “oh god, oh god, oh god!” I hated him so much.
“NO SERIOUSLY IT REALLY HURTS! PLEASE STOP!” I yelled.
Then it happened. A bolt of lightning exploded in my hamstring and shot all the way up my leg and throughout the rest of my body. Almost as if in slow motion, I could feel the fibers in my hamstring pulling apart from each other. They made a sound like sandpaper on wood that I could hear and feel on the inside of my body. The most intense burning pain I’ve ever felt flooded my entire knee and I screamed at the same time that my knee muscles gave way and straightened further than they had ever straightened in my life. Brett obviously was terrified by this and let go of my leg immediately; he had not intended for my leg to straighten this far. He frantically started apologizing, but by that point the pain was so unbearable that my uncontrollable sobbing and my dad’s hurried efforts to put my leg back to its natural position forced Brett into the background. I was a complete mess.
Probably a half-hour later, with two people stabilizing my leg, my dad was able to lift me back into my chair so we could go home. It is a good thing that Brett didn’t try to talk to me before I left, because I would have ruined the rest of his life in a matter of a few sentences, my anger towards him was worse than the pain.
My knee didn’t heal for several months, probably because I refused to go to the hospital, arguing that it was only sprained, when in reality I probably either partially or completely tore my hamstring. It was close to a year before I could stretch that leg without any pain. Brett found a new job in a different state several weeks after the incident, which was most likely just a coincidence, but I like to think he quit because of me.
Now that I think about it, most of the stories I have are about me getting hurt in physical therapy. Maybe someone needs to reevaluate the effectiveness and dangers of stretching kids with SMA.
There is one other time I was severely injured in physical therapy that’s pretty funny. I was receiving physical therapy in high school, through our school district’s physical therapy program. It was 7:30 in the morning and I was being stretched before school started on a table in the back of the nurse’s office at my high school. When therapy was over my therapist had to lift me off the table and put me back in my chair, however, in a way that I still don’t understand, my left arm got caught on my therapist’s shirt and twisted in an odd direction while he was spinning me into the correct position to get in my wheelchair. All of a sudden, incredible pain filled my upper left arm, absolutely incredible. It kind of caught me off guard and I yelled a bunch of non-intelligible words along the lines of, “holyshitthathurtstophelpohmygodowowowow.”
My therapist put me back in my wheelchair and although I was almost hyperventilating from the pain, the severity of the situation didn’t set in until I tried and failed to move my left arm. Nothing. Here’s the funny part: I once again convinced everyone that it was only sprained, out of my pure desire to stay as far away from hospitals as possible, and I suffered through close to two months of torturous pain every time I had to allow my parents to move my arm to change my shirt each day.
A few months later, once my arm was feeling better, I went down to Dupont Hospital in Delaware for a checkup with my doctors. One of them wanted me to have an x-ray on my ribs to check out my lungs, and while he was examining my x-ray he noticed that I had fractured my left arm and that it had healed on its own. Whoops!
I’ve never actually enjoyed physical therapy until about a year ago when Angie, who I’ve mentioned before, took over as my physical therapist. She was the only physical therapist I’ve ever had who shared my sense of humor, and who listened to me when I said something hurt. My dad and I had many great Monday nights hanging out with Angie while she stretched me. Unfortunately, like I said before, she recently accepted a new job in Delaware, so I will be starting with a new therapist this coming Monday night.
Maybe Brett will be back!
To all of my new followers, if you are unaware of my upcoming feeding tube surgery that is scheduled to take place this coming Tuesday the 13th, read this, this, and this.
For everyone else, as you know I was supposed to get a feeding tube last summer, because I weigh less than most 8-year-olds, but a week before the surgery, my surgeon decided the procedure was too risky. There is a chance my weak lungs could collapse when they take me off the breathing tube that is inserted to keep me alive during the surgery. Awesome.
So, for the past year, while my doctors have been debating what the best course of action is, I have been drinking these super-high-caloric milkshakes like it is my fucking job, in hopes of gaining some weight so I can put off this independence-crushing, not to mention dangerous surgery.
Well, I failed miserably. In fact, when I went to see my main doctor last month, I had lost 6 pounds since last year, bringing my weight to a whopping 46 pounds. My doctors, my family, and I all reluctantly accepted that I needing to have the feeding tube surgery, despite the obnoxious risk that it might kill me.
I was assured that my doctors and surgeon were all on the same page, and my new pulmonologist wrote me a very convincing email explaining that he firmly believed, based on my life history and uncommonly high lung-function test scores, that I would have no problem coming off the breathing tube. I slowly accepted that a feeding tube was going to be a part of my future, and convinced myself that I would get through the surgery just fine.
Tomorrow, my dad and I will be driving to Delaware to meet with my surgeon, since the surgery is only a week away. This is the same surgeon who told me not to get this procedure last year, so it will be interesting to discuss why he changed his mind.
This trip tomorrow is weighing pretty heavy on my mind right now; I don’t expect to get much sleep tonight, because the outcome of the meeting is going to greatly determine my attitude towards the surgery. If I get a sense that he is still even a little hesitant about doing the procedure, I’m going to be a mental basketcase for the following week. It’s terrible, but I strongly believe that’s what will end up happening tomorrow.
Either way, I am at peace with having to get a feeding tube. It’s going to be different, and gross, and unsightly, but who gives a fuck? Nobody sees my stomach for the most part, unless I’m wearing one of my sexy belly shirts, so it won’t be a big deal.
I will update you guys tomorrow about how it goes!
Afterthought: If something crazy happens during the surgery, like I slip into a year-long coma for instance, it will definitely help me sell more books down the road. Maybe I should be aiming for coma, or perhaps I’ll get lucky and they’ll cut my leg off or something. Sometimes you have to make sacrifices to be successful hahahaha.