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.

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The Words of My Childhood

A few weeks ago, my mom brought by two boxes of childhood memories that I knew I couldn’t part with, though initially I didn’t even remember what was in the boxes. As I took a nostalgic trip down memory lane one evening, I found diaries starting from when I was really young, stuffed animals I could never part with, and best of all, stories and poems penned by yours truly. Interestingly enough, as I poured through everything I had written (at least those of which I kept), I noticed some distinctions within the words.

Within writing, there is the concept of “finding one’s voice” as a writer. I used to believe I was still searching for mine, not knowing when it would be fully developed or when I’d know I had one worth remembering. However, the authenticity of my “voice” as a writer, especially once I was high school, brought tears to my eyes. For instance, I was looking through Academe, a literary publication my all-girls’ school published during my junior year of high school. I was mindlessly flipping through the pages, stopping at prose or poetry that caught my eye or pulled at my heart. I read a poem called “The Barn,” devouring it, literally hanging on every word, and wondering the whole time who had written the poem. It wasn’t until I reached the bottom of the page…that I realized the author was me.

“The Barn”

I am a lost soul

On the search of self discovery

Looking in every nook

Every cozy log cabin

Finally stumbling upon

An old abandoned barn

 

Its windows are shattered

Showing the whole inside

Much like a heart

Left for the world to tear apart

It is overflowing with hay bales

Resembling each happiness

Each piece of simplicity in life

But leaving gaps

Just big enough for grey skies to surface

 

There are camping lamps in each corner

Shining light upon this life

And guiding the way

But sometimes burning out

To force me to find my way

In complete darkness

Dead silence

And hazy fog.

© Trailblazing 2018. Unauthorized use and/or duplication of this material from TrailblazingWithCP is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Trailblazing with appropriate and specific link to the original content.

As you can likely deduce from this poem, I’m definitely an “old soul.” I wrote “The Barn” 9 years ago, at the age of 16. By that point, due to all the physical and metaphorical obstacles I had to traverse as a result of my disability, I felt like I had enough life experience to last decades. What I didn’t realize until I read this poem as a 25-year old adult is that I have always had a “voice” as a writer. Over the years, I have refined it, strengthened it, and molded it into the essence of who I am today. Even as a child, the foundation of my voice was there, sitting in the dark, patiently waiting on my words to bring it to life. Maybe I never had to “find” it after all. Maybe it was there all along, waiting for me to be ready to come looking for the piece of myself that would allow all the others to fall into place.

 

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.