Today I have the honor of being featured on one of my favorite blogs. This is the very first blog I “followed” on WordPress and it’s always a must-read for me. Endearing, funny, real, human. If those are qualities you appreciate, you’ll enjoy Must Be This Tall To Ride as much as I do. My post, “I Got Your Back”, delves into the trials of a 12 year old girl (me, circa 1985) who goes through some physical challenges that include a large turtle shell, a spinning bed, and a quietly courageous man. Read my post (of course!) but then poke around a little and explore and see why people connect with Matt, the man behind the keyboard, of Must Be This Tall To Ride….
“Yesterday, lost in a crowd, yesterday lost in a crowd, I was lost…. now I’m found. Yesterday I was lost, and you kicked me some food. Boy it was nice, to be here with you.”
-Rusted Root, Lost In A Crowd
My childhood was one long awkward period. Most people have a few awkward years, I had about a decade. I was a total tomboy who didn’t care about clothes or looks. By the time I entered Middle School in 7th grade, I started to notice boys and decided I should get with the program. This also happened to be when I found out that I had severe scoliosis and would have to wear a not so cute back brace. This lovely accessory consisted of a hard plastic shell that wrapped around my torso, covering everything from my shoulder blades to my hip bones. It was not subtle or discreet. Big shirts and sweaters did little to camouflage what could best be described as a large plastic turtle shell.
I was a good patient, I wore the brace for the prescribed amount of time, 23 hours a day. I could only take it off to shower and do my back exercises. I tried to make the best of it. Luckily, the kids at school were pretty cool about it. For some reason they spared me of any kind of harassment. They actually were pretty supportive.
Still, I had a decent amount of self pity. I rarely ever voiced it, but I definitely thought it and felt it. I was pissed that I had to wear this thing, I hated that it cut into the top of my thighs every time I sat in a chair, causing my legs to go numb. I hated that it made me look like a hunchback. I hated that I had sweat trickling down my back even in the dead of winter. I hated that when lying down I could barely get up without someone’s help. I hated the two giant velcro strips that held it in place across my stomach. In all, I really just hated everything about it.
Every few months we had the pleasure of meeting with the doctors to hear how everything we were doing was not working. The S shaped curve of my spine was getting worse. Surgery started to come up more each visit. I wouldn’t say I sulked when we went to these appointments, but I was not my usual chatty self. I basically buried my nose in a book and tried to ignore my surroundings. One day I looked up from my book long enough to notice a little girl bouncing around the waiting room, talking animatedly to anyone who would listen. She was about 5 years old and all the nurses loved her. She seemed to know everyone in the office. A nurse confided in us that the little girl’s spine was so severely curved that it was in danger of crushing her lungs and heart if it wasn’t corrected. A case like hers at such a young age was extremely rare. Surgery basically stunts the growth of the torso, and the doctor’s weren’t sure how to proceed.
It wasn’t long after we learned about this little girl that the doctors informed us that I would have to have the surgery. Even though it wasn’t unexpected, this was not what we wanted to hear. The doctors started detailing the ins and outs of surgery, risk of paralysis, two weeks in the hospital, a cast for six months. At some point I stopped listening. All I could think was that I wore that *$#@-ing brace for over a year for nothing…” Mom and I had a tearful moment in the car after that appointment. After we hugged each other and cried, I remember thinking about the little 5 year old in the waiting room. The adorable little girl who walked around like she owned the place and knew all the nurses and staff by name. She was this little spunky ray of light in a dreary institutional office. She was also going to have the surgery. Except her growth was going to be stunted at the age of five. They didn’t know what would happen after that. Even though I was scared and I knew my Mom was scared, I also knew that I would be ok. That little girl had a much rougher road ahead of her and no one could tell those parents that their daughter would be ok.
The surgery took 8 hours. They placed a steel rod from the top of my spine to my tail bone, tightened it with screws at each end to instantly lengthen and un-curl the S shaped curve of my spine. Everything went well. But the pain was beyond description. Every nerve in your body is attached to your spine. My entire spine had been tampered with in a somewhat brutal way. There was no part of my body that wasn’t screaming in pain.
Probably the worst part of the whole experience was when the nurses would come in to my room to turn me. I had to be turned over every two hours to prevent bed sores. The bed I was in was a special bed designed specifically for these kinds of surgeries. It was a narrow bed, and when it was time to be turned over, the nurses would lay an identical bed on top of me, clamp a large wheel down and lock the two beds together, with me in the middle, unable to breath. They would then spin the wheel until I was rotated to the opposite position. Not only was this ridiculously painful, but it had to happen 12 times a day. Once I became lucid enough to know what was going to happen, I would start to panic whenever I saw two nurses enter the room. Two nurses meant I was being turned.
One time in particular I decided I’d had enough. I didn’t want to do it anymore. I would not be turned again, bed sores be damned. I kind of freaked out. I had no control over what they did, but I freaked out as much as someone who can only move their mouth and eyeballs can. One of the nurses calmly knelt down next to my bed so that I could look her in the eyes. In a gentle, yet firm voice told me about another patient who was down the hall who’d just had the same surgery as me. He had been in a horrible car accident and experienced a devastating impact on his spine. He was lying down the hall experiencing everything I was experiencing. Except he was deaf and blind. He was in the same situation as me. Except he couldn’t hear or see. I was stunned. This shut me up pretty fast. What she was telling me sounded like hell. To be in this kind of pain. To be in the dark, in every way, while lying immobile in a hospital. To be in this, the most vulnerable of positions, and to not know what was going on at all times, to have to rely on someone else being there with you to communicate everything that was going on…. the thought of this man and his experience haunted me the whole time I was in the hospital. As bad as this all was for me, I still could see who entered my room. I could communicate with each person that entered my room. I could refuse medications that I knew would make me sick when a new nurse came on duty. I still had some control. This man they told me about was vulnerable in every sense of the word. This man’s story didn’t make my pain or my fear go away, but it sure put it in perspective.
As a parting gift before I could leave the hospital, they put me in a “body cast”. It could be more accurately described as a “torso cast”. It was a hard shell, this time of woven plaster. But this shell didn’t stop at my shoulder blades, it came up over my shoulders, covering every part of my torso. And this was permanent, for six months, at least. This one wasn’t coming off until it was sawed off. As much as I hated those loud obnoxious velcro strips on my brace, I really missed them now that I had to live in this contraption. I cried for a while back in my hospital room after they put it on. No one really had explained what it would look like. And it was so bad. And I would have to wear it for six months.
I had to be on bed rest for a few weeks after returning home from the hospital. Finally the day came when I was declared liberated and could leave the house. I should have been excited, but I was dreading going out in the real world. I had always been on the go, spending all my time outside. I got stir crazy really quick, so it wasn’t like me to want to prolong my confinement. But I was terrified of people laughing at me, of looking ridiculous. I knew that my cast was going to attract a lot of stares. I tried to give myself a pep talk. I knew my parents were excited for us all to go out to eat. I’m sure they felt liberated themselves. I tried to will myself to not care what people thought. The old me, the tomboy who didn’t care about looks, she would have come in handy at that time.
When it was time to leave I broke down. I confessed my vanity to my parents. I was so ashamed to feel the way I was feeling, but I couldn’t help it. Of course they understood. But they also knew that I couldn’t become a shut-in for 6 months. My mom tried. She told me that I was strong and after everything I’d been through, I couldn’t let what other people thought stop me from enjoying my life. Everything she said made sense, but it didn’t cut through the stubbornness that had taken a hold of me.
A few minutes after she left my room, my Stepdad came in to my room. I was braced for him to order me to get up and get in the car. Instead he sat down on my sister’s bed and put his hands on his knees like he was getting ready to talk and it wouldn’t be easy for him. This was unusual. Emotional matters were always handled by my mom. He started explaining that he knew exactly how I felt, that he had actually felt the same way many times. I had no idea what he was talking about. He held up a hand and kind of waved it, trying to clue me in as to what he was referring to. Ohhhh. That. He had been born without fingers on his right hand. Of course I always knew this, but I never really thought about it. I never thought of it as something that would bother him. It was just part of him, it seemed normal to us.
He explained the looks he gets from some people when they see his hand. The reactions he gets when someone reaches out to shake his hand and pulls their hand back startled. He had been teased when he was younger. And his hand was there forever. It’s not something he just had to deal with for six months. He pointed out that it never stopped him from doing anything. And it didn’t. He played football in high school. He built a deck on the back of our house, he could fix just about anything. I guess that’s why I never thought too much about it, he never let it stop him. He goes on to tell me that he had to learn at a young age to shrug off people’s reactions.
As he’s telling me this, I feel like he’s sharing something really important with me. He is a quiet man. He doesn’t share his feelings or emotions easily. But he was talking to me about something I’m sure he didn’t really like to discuss. I felt honored. He approached me with understanding and love and patience and he shared a piece of him that I had never understood or even really thought about. And he got through my insecurity, my nerves, my anxiety. If he could go out in the world and deal with people’s reactions and not let it affect him, then I could too.
I got through surgery. I got through the ordeal of wearing a cast for six months. I survived the humiliation. I was incredibly lucky that once again all the kids at school were totally cool about it. My friends weren’t embarrassed to hang out with me. I was so lucky that I came out unscathed. And I’m grateful. I’m grateful for the brave little girl in the waiting room. I am grateful that the nurse told me about the patient who couldn’t see or hear. But what I’m most grateful for, the part that has stuck with me all of these years later, is that my Stepdad shared his experience with me. I since then have paid a little more attention and I am amazed at all the things he’s accomplished. So many of them are things that are especially difficult to do with a disabled hand. I kind of wonder if he subconsciously chooses hobbies like golf, rebuilding a car engine, making specialty bullets for his collectible guns, precisely because they are difficult for him to do. It’s like he is continuously showing himself and the rest of us that nothing’s going to stop him. In addition to helping me leave the house that night, he also gave me an even better gift. He showed me that he loved me, that I was his daughter, that I was worthy of sharing a very private part of himself with. At the end of it all, this scoliosis…. this surgery…. it showed me just how lucky I really am.