The Mobility Chronicles: CP Edition [Part 2]

Back in January, I wrote a blog post and opened the door of my current mobility struggles, while simultaneously opening the floodgates of all the emotions associated with my declining mobility. In some ways, it feels like the level of those emotions has increased, but honestly, I think they are fears and concerns I’ve had my whole life, so now that they’ve come to light, it feels like I can’t even breathe some days because of my level of panic, anxiety, and unrelenting anger.

In between the time I wrote the initial post on this subject, I’ve gone back to physical therapy, which was a huge step for me. Past physical therapy experiences have resulted in a form of PTSD, so the fact that I was even able to walk in the building when I had my first appointment was a really big deal. I’ve only had two appointments with my new physical therapist, but so far, so good. During my initial appointment when I was evaluated, I spent 90% of the appointment discussing my past PT experiences, the panic and anxiety I now feel as a result of my past and the pain I experienced, as well as the experience I had when I returned to physical therapy 3 or 4 years ago for the first time since I was 16. To put it bluntly, returning to PT that time around didn’t go well. I had no idea I was going to have panic attacks, but I did, and they scared the crap out of me. Therefore, when I returned to physical therapy this time around, I knew what to expect in a sense. I was utterly terrified and it took a lot for me to even think about going, but I had a better idea of what my response would be.

Therefore, about a month before my initial evaluation appointment, I talked with my psychiatrist about my concerns, in the hopes that she could prescribe me with something that could at least take the edge off so I could walk in the door of the physical therapy clinic without having a panic attack. The fact that I even had to ask for a medication to help me made me feel weak. However, I have battled my depression and anxiety and been in mental health therapy long enough to know that sometimes talk therapy itself can’t 100% fix a problem, especially when it’s literally a chemical imbalance in your brain. Don’t get me wrong though. I’m not one of those people who thinks the entire country should be medicated. However, all I know is that for me, the combination of talk therapy and medication has allowed me to be a functioning member of society without feeling completely debilitated by my anxiety and depression.

Anyway, upon returning to physical therapy, knowing I had something that could help me from totally going into a panic attack and not being able to get through the appointment was a relief. It was like knowing I had a safety net if I needed it. I will say, though, another huge part of returning was getting myself mentally prepared that physical therapy this time around would not be the same as physical therapy when I was 11 or 12 that required intense physical therapy post-surgery. For me, that meant creating mantras in my head, like “You are in control,” “If it hurts, you can’t tell them to stop,” and “If you have to get up and walk out, that’s okay.” In short, the mantras help, but so far it has meant repeating them in my head over and over for the entire hour of my appointment.

In short, each PT appointment forces me to face internal demons that I’ve been battling since childhood, and that shit is hard. I remember the day a few weeks ago when I went to my first appointment. I got through it, but for the rest of the day, I was in a very thick mental fog. I had built the appointment up in my head, expecting a continuous panic attack. Since that didn’t happen, my mind had to adjust to the fact that what I was preparing myself for for over a month wasn’t as intense as I was expecting. Despite that, facing these fears head on on a daily basis is exhausting. I’m sure that over time it’ll get easier, but for now, it just sucks. It doesn’t feel fair. I shouldn’t have to have such an intense internal battle with myself on a daily basis, and yet, here we are.

Recently, I discussed my anger surrounding my declining mobility and having to use a walker with my mental therapist. In short, I’m infuriated with myself and my body constantly. I hate that my mobility has reached this point. I’m pissed that I didn’t do more to hold off this moment for as long as I could. It literally makes me want to scream and cry, simultaneously, on a daily basis. It’s not fair. I shouldn’t have to deal with this now. I thought I had 10 more good years of independent mobility without having to depend on the assistance of a mobility aid. But the universe had other plans.

To be honest, facing my declining mobility as a result of my disability feels like the hardest thing I have ever had to do. The simple fact of feeling like I am being continuously “mentally tested” on a daily basis is enough for even the most mentally strong individuals to take pause. So, today, I’m taking pause. I’ll pick up the fight again tomorrow.

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.