Summer in the City with Physical Therapy and Surgery

Many of my summers as a kid went like this, finishing the school year, having surgery, and recovering or in physical therapy afterwards. There were a lot of doctor's visits and physical therapy appointments during the first twelve or so years of my life. 

For the two craniosynostosis surgeries I had prior to the first grade, one of my surgeons for these procedures was at one point the head of plastic surgery for a major university. This man saw me every year and more in the early days for over a decade. I recall my final visit with him at age eighteen. He indicated that my skull had reached its full growth and that I was safe to discontinue our years (or at the time lifetime) of visits. He also offered to provide cosmetic surgery to fill in the indentations on the sides of my frontal bone just above my orbital sockets. I declined on the spot because the last thing I wanted was another surgery (I didn't know that I wasn't done with surgeries but thought I was). 

At eighteen, I didn't have any interest in cosmetic surgery, surgery in general, another summer of recovery, or acknowledging my life with CP. There are a number of reasons that I went through this phase (some I've shared in other posts). In the case of this specific offer for surgery. I was also terrified of doing it. Right now, as I write this I am remembering waking up in a hospital room after one of the two craniosynostosis surgeries and it's a fear that's never left me. 

To do a craniosynostosis surgery the surgeons are restructuring the developing skull. They literally moved my face. Twice. But, I am incredibly thankful for the surgeon mentioned above. He passed away a few years ago, otherwise, I'd love to ask him some questions and review my files. I vaguely recall that there was some public scrutiny around craniosynostosis cases during my childhood and I've long been curious about that. 

On a side note, a lot of trust had to be given to my doctors, surgeons, and physical therapists. I was a child for most of this, so I generally trusted their expertise and guidance but I've become a lot more proactive in my medical journey as an adult. 

Because of the trust and borderline reverence I had for my pediatric surgeons, I remember being sad as a teenager when my ophthalmologist from practically birth retired. They'd performed three different eye surgeries for me and there's something personal about that. A surgery is a big moment for anyone, but as a kid, surgeons felt like real life superheroes. I'd had at least three regular surgeons in the first twelve years of life. The plastic surgeon noted above, likely a neurosurgeon who I don't remember that worked with them, an ophthalmologist, and an orthopedic surgeon. 

My pediatric orthopedic surgeon not only did all of my orthopedic surgery to date, he was responsible for my participation in a sports program that allowed me to go skiing every winter, every other week, for five straight years. This was treated as physical therapy and part of my medical planning. The orthopedic surgeon typically joined us on ski trips and I'm fairly certain that he received career recognition for these programs. He also got me involved in karate for a bit when I was ten. 

It's a little odd to feel nostalgic about people who I'll probably never see again that were integral parts of my Cerebral Palsy medical journey. I also remember the less glamorous side of orthopedic surgery. Having my gait monitored for more walks through the doctor's office than I care to count. Having vulnerable hip X-rays to track my growth. The fear that more surgery was coming at any time. And, the constant attention to the way I walk and move. Of course, that was their job, but I'm not surprised that I wanted nothing to do with the needs of my own body as a teenager because I was tired from years of constant appointments and having my progress monitored. 

I saw so many physical therapists in the first decade of my life that I remember locations more than people. I have a newfound appreciation for PT today, but I went so much as a kid that it was exhausting. Ironically, today, I own a slant board for hamstring stretching, but I have actual flashbacks from childhood because of those things. I joke with my current physical therapist about that stuff (which is mostly to distract me from my own discomfort). I still don't like going to PT, but now I want to go because I don't want to lose quality of life and functionality. 

If there's anything in particular that I want you as the reader to take from this post it's probably the role of memories and meaning as it relates to living with Cerebral Palsy and going through the medical side of the journey. Skiing because I had CP was my most official sport growing up. Doing karate because I needed something to do after ski season and because I wanted to be able to defend myself was all because I was born with CP. All of this was because of my CP. It made me feel equal parts special, fortunate, less than, and different. That's a weird mix of things that aren't actually feelings, but I digress. 

I'm happy that I had quality and attentive health care providers growing up with CP and that I'm working to establish a new CP care team today. I'm also sad a lot because I feel the need to justify my place in life. I'm frequently annoyed that I've had to advocate for what doesn't work well for me for decades and that a lot of that has to happen with people that I hope know these stories better than you do as a reader. I'm still scared of the medical journey, but I ask more questions now. I get embarrassed, overwhelmed, nervous, and tired a lot. That's what I actually feel on a regular basis and that's largely why the memories of my lived experience carry so much meaning for me. The CP and I are inseparable. It may be the first thing you notice about me. It may be something you overlook because you don't see me like that. Either way, my external reality has done more to shape my internal perspectives than you probably realize. CP is an element in every story I have and everything I've ever done.