Laughing at My Nightmare (18 page)

Jill and I were very happy together for a few months. We hung out as often as our schedules allowed, went on dates, had “sexy time” whenever possible, and learned a lot about each other. But somewhere along the way, my feelings started to change. I noticed myself feeling like I wasn’t as emotionally invested as I should have been. During some soul searching, it occurred to me that I had gotten so wrapped up in finding a girl who was interested in being sexual with me that I had forgotten the values that truly matter in a relationship. I had ignored vital aspects of growing closer to Jill while focusing on the intimacy. I suddenly felt like I was only interested because of the amazing orgasms I was getting. Those feelings, coupled with increasing responsibilities in other areas of my life, led me to decide that it wasn’t fair of me to stay with Jill. I could have easily lied and pretended I felt more than physical attraction, but it never would have worked out and deep down I knew I couldn’t do that to her.

We stopped speaking after I ended it. Maybe it’s fucked up that I’m saying all this in my book, but Jill really did change my life. She helped me defeat the false idea—having a girlfriend was impossible—I had held on to so tightly.. She taught me that there are people out there who really will see past the wheelchair and want to be with me despite the difficulties of dating someone with SMA. I can never thank her enough for our time together and everything I took away from it.

chapter 31

physical therapy (read: torture)

Since 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. 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. 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.

A long time ago, when I was in early elementary school, my wrists looked completely normal. They were straight and I could bend them in all the normal directions. Now, I can’t straighten them much past the ninety-degree angle that they’re fixed at in the picture above, and if someone helps me extend them, they still only straighten to about a hundred and ten degrees.

Observe.

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, they 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 the demands of daily life my muscles get more atrophied over time. This means that, today, my physical therapist can push my wrist to a hundred and ten degrees, but my muscles stop straightening at a certain point and go no further unless they tear, strain, or sprain. 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.

From my toddler years until about a third or fourth grade, I received physical therapy from a woman who 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. Around that time I also used a device we called The Stander that simulated standing. It was hell.

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.

Take the fucking picture so I can lie down.

However, I was also kind of a baby 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 put me in danger of getting hurt, so I didn’t learn how to tolerate pain as fast as normal kids do. 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.

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, was in my opinion the absolute worst kind of physical therapist, which is kind of ironic because the stories he told indicated that he was a big shot in the world of physical therapy; although, I later found out that many people believed that Brett was a compulsive 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. He may have been 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 fourteen or fifteen years old and 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 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 fourteen, 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 my constant underlying distrust of 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 lay 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 p.m. It was 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! Okay, no further, no further. It hurts!” I said in a hurried voice to get him to stop.

“Just a little longer, we’re 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 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 Brett had probably either partially or completely torn 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.