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The Days When It Feels Like My Treatment Isn't Working

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Clench your fingers into a claw-like shape. Feel that tension? That’s how cerebral palsy makes my leg muscles feel. On the hardest days, no amount of stretching seems to relieve the amount of tension in my body. Quite honestly, these are the days when stretching causes more discomfort than help. I often imagine my leg muscles like pieces of taffy. No matter how much I pull, they are still getting stuck.

Throughout the CP community, Botox injections are one of the most well known treatments for muscle spasticity. Yup, the same Botox that the rich and famous use to combat wrinkles can be therapeutic in patients with CP. Basically, the toxin is injected directly into affected muscles and acts an “Off” switch. When it binds to the neural receptors, my muscles don’t receive the signal from my brain to contract, thus relieving the tightness. While on Botox, I can achieve a more natural walking pattern. It is also frequently used in kids with CP, especially so they can get the most out of physical therapy sessions.

As a little girl, I had no clue what Botox did for me, but I knew that it meant I’d have to get a bunch of needles stuck in my legs. My stomach always used to hurt the night before, and my heart would race as we pulled into the parking lot. It felt like adults around me were trying to downplay the whole thing, but I always knew. Kids, especially those with medical needs are much more aware than the rest of the world often gives them credit for. After crying and screaming my lungs out through the procedure, there was always a consolation milkshake — which, years later, still remains a “Post Botox” tradition of mine!

Now at 22, I’ve adopted a mindset of, “If it works, I’ll do it.” Getting shots in your legs are as pleasant as it sounds, but I guess it could be worse. I’m just thankful there’s something I can do. Box breathing really keeps me calm and helps my mood on treatment day!

Even while Botox is in my system, there are still days when I can feel my leg muscles tightening. On these days, I’m sore, my frustrations are at a high, and my patience is beginning to wear thin. I’m usually in my room stretching as much as I can while trying to regain a healthy perspective on things. Being this mentally and physically exhausted reminds me of the importance of looking at the big picture. I’ve accepted that I’m allowed to have a rough day. Actually, the rough days bring me the best doses of insight. They are biggest reminders of where I’ve been with CP and what I’ve accomplished not despite it, but rather, because of it. I often think back to the little Lucy I once was…

Who screamed while getting shots in her legs

Scraped her knees too many times

Cried through hamstring stretches

And often needed someone’s hand to hold…

But at the end of the day? It’s not like I loved my life any less.

It’s what I’ve learned from these experiences which help me love my life even more now. A reminder that maybe the tough days aren’t so tough after all.

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Originally published: January 16, 2017
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