Physical Therapy: Past and Present

I received physical therapy every week of my life until I was 16 years old. So, me and PT have quite a history. And to be honest, it isn’t all that pretty. For me, PT was focused on getting me as independent as possible and as mobile as I could possibly be. That meant learning to walk with a walker, then crutches, and eventually independently. With a physical disability, that’s no easy feat. I didn’t walk in any sense until I was 5 or 6, I think…so I was way behind my peers in that respect. However, that’s where PT came in…to provide me with the tools I needed to reach the same level of functioning as my able-bodied peers. As you can imagine, it was hard work, it was painful, and I left every therapy session having cried at least once (or at least that’s how it felt).

The trauma of physical therapy didn’t surface until I had my first surgery at the age of 11. Following my first surgery, after being in long-leg casts for 8 weeks, physical therapists were ready to get my legs moving. Try keeping your legs board-straight for 8 weeks and then being asked to bend your knees. It’s a level of pain I wouldn’t wish on my worst enemy. One of the three most vivid memories I have is one particular day in physical therapy at Shriner’s Hospital for Children in Greenville, SC, following my first surgery. The physical therapist was determined to get my knees to bend. However, up until this point I had fought her every step of the way. She ended up placing a blue-padded bench right behind my knees in the hopes that gravity would do it’s job over the course of an hour and by the end of therapy, my knees would be bent over the bench. Suffice it to say, gravity didn’t win. I held my legs in the air for 90% of my PT session that day. Eventually, the physical therapist put her hands on my knees and pushed down. Because I had held my legs up for almost an hour, down they went and out came my screams. One minute my legs were in the air, pain-free, and the next…my body went into overdrive trying to process the pain that was splitting me open from inside. I cried and screamed so loud and for so long that I remember a nurse coming in asking if everything was okay. Until that moment, I didn’t understand the concept of a blood-curdling scream…and I also didn’t understand what it meant to feel such an intense pain that when you open your mouth no sound comes out at all. Now I know better.

That PT moment occurred at the age of 11. I am now 25, and I can still go back to that moment in my mind in a matter of seconds….and when I do, the tears come, and I can’t stop. I cry for the pain I felt, the level of fear and anxiety that was coursing through me, and the fact that at the age of 25, I can so easily place myself back in that moment without even blinking. To put it bluntly, physical therapy has essentially traumatized me. It still holds a lot of power over me, I still have nightmares, and I still have really intense reactions towards PT.

A few years ago, my doctor suggested I go back to PT again. “It won’t be like last time. This time, when you say stop, they will.” See, as a child in PT, my voice didn’t matter that much. If I said stop, the pain continued. The physical therapists kept pushing. They had to in order to help me get to the point I needed to be. Therefore, a few years ago, when my doctor said it would be different, I didn’t believe him. Even when the physical therapist said, “You’re an adult. You’re in control now,” I had a very hard time believing her. After only one PT session as an adult, I started having panic attacks. Even though I was in a different place, in my mind I was an 11-year-old girl in the PT room of Shriner’s Hospital. I panicked. I couldn’t breathe, and I felt like I was dying. In short, I had a panic attack.

I have not been back to physical therapy since my previous experience as an adult caused panic attacks. However, I’ve reached a point in my life where I feel like I at least need to try going back. I am utterly terrified and just the thought of it makes my heart race and my breath become rapid. How I’m going to go through with it, I seriously don’t know. But I have to try. I owe myself that much. And I just hope the physical therapist doesn’t negatively respond to my panic attack. I can’t have that happening again.

Send good thoughts over the next few weeks. I need them.

Why My Disability is Not Your Feel Good Story

Throughout my life, I have been called inspirational, brave, and courageous because I live life with a disability. Many people have expressed how much they admire me. I used to just accept it. However, over the last few years, those kind of comments have really started to frustrate me, and here’s why.

Admiring me because I live with a disability and have scars and wake up each morning with chronic pain to simply live my life…it’s pity in disguise. This kind of admiration says to me: “Wow. If I had experiences like yours or lived with some kind of impairment, I don’t know if I could face that.” And what, I’m some kind of construct to measure against so you can say to yourself, “Thank goodness I don’t live like that.” Within the disability community, this concept is known as inspiration porn. As was stated in the hit-show Speechless, “It’s a portrayal of people with disabilities as one-dimensional saints who only exist to warm the hearts and open the minds of able-bodied people.”

Other examples of inspiration porn include stories such as the star athlete at a local school taking a girl with Down Syndrome to prom or images of athletes competing in the Paralympics with the caption, “The only disability in life is a bad attitude.” Seriously? Give me a freaking break.

I’ve had my fair share of these kind of experiences as well. When I was in middle school, every year there was a beauty pageant, and each grade was allowed 3 or 4 contestants. The contestants were chosen based on nominations and votes made by each grade, and when I was in 4th grade, I nominated myself but then changed my mind and stated, “Nevermind, no one is going to vote for me anyway.” Even now, I don’t know why I said it. Maybe it was rooted in my strong desire to be liked and have friends, but as you might imagine, my entire class heard the statement. And lo and behold, I was chosen to take part in the beauty pageant that year. While at the time I enjoyed the experience, now it simply fills me with disgust, and I wonder, “Did my classmates or school ever realize that by providing me with this experience, they were simply using it so they could feel good about themselves for doing a ‘good deed’?”

Years later, when I was in college, my dad and I were walking around downtown Asheville and trying to kill time before going to a concert at The Orange Peel, and an older gentleman came up beside me and started clapping and stated, “God bless you, sweetheart. Way to go.” I was floored. I stared at the man in disbelief and didn’t even respond. Looking back on it now, I wish I had said, “Honestly, saying something like that is incredibly demeaning. I don’t exist to provide you with warm and fuzzy feelings, and I am not here for your pity.”

Don’t admire me for simply living, for doing every day things you can accomplish without even batting an eye. Because to be honest, I haven’t done anything extraordinary. I have a college degree, I recently got my master’s degree, I have a full-time job, I drive a car, and I pay all my bills. But so have thousands of other people in the world. But are you going to walk up to them with a huge smile on your face a say, “Wow, you inspire me so much. I really admire you?” I highly doubt it. Just because I have accomplished those things while also having a disability does not make me admirable or courageous or brave. I am not your charity case or your feel good story. I don’t exist so you can put your life and obstacles into perspective. I am not here so you can pat yourself on the back and check off “do a good deed” on your list of life goals. I am simply doing the exact same thing every single other person in this world is doing: existing.

The beauty of my worst fear.

I’m afraid of the day when I’ll no longer be able to walk.

I spent my entire childhood learning to walk so I could be as independent as possible, despite my Cerebral Palsy. Before my intense operations, I learned to walk in my own way, my knees knocking together as I put one foot in front of the other. During the years I spent on a t-ball team, I loved the feeling of running to first base. Even though I typically got out before making it to first base, I ran with all my heart just like everyone else on my team. I ran in my own way, but it never stopped me from trying.

After my first operation at the age of 10, I had to completely relearn to walk after having my femurs straightened out and kept in place with rods. One year later, when I got the hardware removed that was placed during my first operation, I had to relearn to walk yet again. See, not walking was never even an option for me. I wanted to be like the other kids my age, and to do that, I had to be able to walk. I had to be as normal as I possibly could. Even when I was faced with physical pain that made me want to curl into myself and give up all together, I kept going. Every day, I literally walked towards my own independence, one step at a time.

Because I spent so much of my life struggling, and ultimately succeeding, to walk, the thought of reaching the day when I’ll no longer be able to walk is completely terrifying. In so many ways, when I reach that day, it will feel like a kind of giving up. Though I plan to walk for as many more years as I can, I am scared of the day when the pain will just be too much, when walking will be putting too much strain on my body. It’s especially frightening because I know how much physical pain I’m in on a daily basis currently. The realization that I am in so much physical pain and I’m only 22 is terrifying. Trying to imagine my level of pain when I reach age 30 is nearly impossible.

That is one great thing about fear though. It has the ability to help us find the determination and strength we didn’t know we had. Yes, my worst fear is seeing the day when I will no longer be able to walk. However, I’m not there yet. I am a long way off from that day. Today, I am able to walk and do the things I love, despite being in pain. Today, I am able to push through the pain, because the result…the view at the top of the mountain…is worth it. The happiness, joy, and pure bliss of the destination weighs so much more than the pain of the journey.

The fear lingers in the back of my mind, the fear of knowing one day I won’t be able to get to the top of Max Patch, my absolute favorite place in the world. However, the fear also gives me the strength and determination I need to continue doing what I love. Yes, one day I may not be able to walk because of the amount of pain I am in. But I’m not there yet. I’ve still got plenty of fight within me.