Dreams, Fears, Hopes, SDR

Three Letters to Begin My New Life

I knew there were several different ways I could start this post: that yes, I was having another surgery; that surgery was the reason I was putting other life stuff on hold, like applying for jobs or masters programs. I knew I had to put my health and quality of life first, and that jobs and programs would always be there. I had to dismiss thoughts of feeling “behind,” because health really does come before anything else. It worked out that I could have the operation now. I had nobody to answer to just yet, nothing hanging over my head that couldn’t be pushed to later.

Although this may come as news to some or even many, my decision to truly explore having another surgery did not come lightly. It’s not something I chose to do after waking up one random morning. I actually tossed around the possibility in my head for months, years actually. At one point, I pushed the surgery to the back of my mind and pursued career opportunities. Still the possibility remained in my head, like a nagging thought or bothersome comment. Eventually I was honest with myself and decided I needed an answer as to whether or not the surgery could actually happen. If I didn’t find out, I would then forever wonder.

I wasn’t going to finally get an answer overnight, though. I had to apply, and my candidacy had to be approved. Applying meant several things, like sending in a detailed physical therapy evaluation on video, and filling out a lot of paperwork. Once everything was submitted, the waiting came, which was the worst part of the experience up to that point. My anxiety conjured up many different scenarios, most of which were application rejections. Weirdly though, I also got anxiety about getting an acceptance. Why? Because an acceptance meant my whole life was indubitably going to change….hopefully for the better. Yet there was still this deep sense of the unknown. What was walking going to feel like? What were my legs going to feel like? How much was it gonna hurt? Could I tolerate it? With the unknown came a sense of dread, which made me feel terribly uneasy and uncomfortable.

When I actually got the call from St. Louis Children’s Hospital with a “yes” back in August, it was absolutely overwhelming…but in a good way! It was like my whole world blew wide open and then apart. For years, I thought I’d reached my physical peak….that where I found myself and my body, specifically how it moved and functioned and got me from point A to point B in that particular point of time and space, was the best it was ever going to get. I was slowly making my peace with this reality. Let me just say that making peace with reaching my supposed plateau was really hard. More often than not, it was insanely depressing. I don’t think I ever truly made peace with it, even now as I’m within arms reach of this new and exciting opportunity. I try to remind myself daily that despite all the challenges I face, I still live a beautiful life.

Although, there were aspects and signs of decline in my overall mobility that I cannot deny. Excessive fatigue, poor balance, increased tone…the list goes on and on. In part, I’m having the surgery because I’m tired. Yes, nowadays I get exhausted walking a few blocks, but I don’t necessarily mean that I’m tired in solely the physical sense. I’m tired emotionally, too. I’ve been told that I’m ever so patient and carry my situation with grace. Indeed I am grateful and thankful for such compliments, but to say that I’m always patient and graceful is a complete lie. Sometimes it’s really, really tough and I lament that. I get frustrated not because I seek pity or because I’m ungrateful…it’s because I’m human.

So, if the surgery could improve my mobility and quality of life, and I was a candidate, why wouldn’t I go for it? If up ahead there was the possibility of something better, why would I refuse it? This surgery is undeniably a big deal. Of course it is an enormous undertaking, but despite all of that, pursuing this path seemed like the obvious choice. Even now as I am writing this, it still does and is.

I suspect what you all might be wondering, and I say this because I’m wondering it, too: will the surgery allow me to stop using crutches? Well, to say that the surgery will get me off crutches is certainly an ambitious claim and ambitious goal. I will say that there is no definitive answer to that question. However, I will without a doubt have to put in the work in order to see improvement.

With that said, it’s really important that I keep that mentality going into the surgery, since the rehab process is extremely arduous and long, and is the key to the operation’s success. After I’m discharged from the hospital and am home in New York, the intensive physical therapy continues. Rehab will basically become my new life. Thinking about it all at once is a lot. That’s why I’ve decided to take everything one day at a time. It can’t be so bad if I do that, right? .

Commitment and dedication to post-op physical therapy is essential in order to reach my full potential. I’m excited to share this new journey and my progress with you all. At this moment, I’m going to need all the support I can possibly get.

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