I’ve probably written something similar to this before…but I’m thinking about it again. We all go through our lives differently, influenced by internal and external factors. The treatments and solutions for one are not the solutions for another. I can’t tell someone who doesn’t like school that doing well and finding my academic niche was the key to success for me.
But what about when they ask? How much information do I provide? How do I articulate just how much childhood surgeries affected me and how I dealt with childhood PTSD post-surgery without revealing too much about my inner psyche (because really, how much detail do they want?).
So I stick to the basics: that reconstructive surgery wouldn’t have worked in my individual situation due to the slight movement I have. I don’t share that I sat in on a conference presentation by the pioneering surgeon at 11 (yes, I was precocious – I also have notes about genetics from that conference) and was scared. I was worried the professionals were telling me I wasn’t good enough as is. That I needed to be fixed.
Luckily I had family and professionals to guide me through that angst, but how do I even describe that beyond the rumination a of a once overly-sensitive, angsty pre-teen?
It wasn’t right for me.
This seems to be the only way I can condense years of thinking about it, but it doesn’t seem sufficient. I want to emphasize that I couldn’t have handled it emotionally but without being like “yeah, I had LOTS of issues!”
I think new surgical methods are awesome and definitely less scary-looking in process (just wish everyone could get insurance to cover them!) and I love that people are getting good results with them and are happy. Would that have changed my decision process? Who knows.
All I know is that I wasn’t ready for surgery and am thankful I had the support I did. But that I am so happy for people who had surgery and are happy. And sad for those who didn’t have it and are unhappy, or had it and are unhappy.
Today I woke up, and my feet hurt. They pretty much always ache, to some degree. I had an ever-so-helpful (not) orthopedist tell me about 10 years ago that the surgery used to correct my clubfoot was “outdated”… yeah, not much we can do about that now! Basically, instead of using casts to nudge my foot in the right direction they did something with my tendons… which left my foot and leg a bit screwed up.
For me, the constant ache and fatigue of my legs is one of the most debilitating parts of how Moebius syndrome affects me now and has the most impact on how I feel. It’s hard to be positive and enthusiastic about life when you’re in pain. It’s hard to work when it hurts to stand up, much less walk.
I pop a few Tylenol Alleve and suck it up, that’s the only thing I know how to do.
My parents are cleaning out the attic of their house, and I got an e-mail with this blast-from-the past: Mister Rogers medical books!
I still remember these books well. And that’s kind of sad. I think I took “working through past medical procedures” a bit too intently… we also found my favorite doctor’s kit. I donated a bunch of toys and dolls and books, but these I’m keeping.
I’m keeping them as much for what they represent than for anything else. These books represent my experiences growing up with doctors and hospitals and operations and casts and appointments followed by yet more appointments. They represent me trying to make sense of that reality, and the resources that were available to me do that. They represent the efforts of those around me to prepare and educate me about these experiences (apparently not only did I go on a “surgery tour” at the age of three, I actually asked questions of whoever was leading it. Precocious much?)
Certainly education about the impact of early childhood medical intervention has improved, and I’m sure there are more sophisticated preparation materials available to children and their parents now – but finding these books makes me grateful that at least something was available during my childhood.
This series was certainly well-read and well-loved.