memories, Moebius Syndrome

Moebius Memories

Sometimes I’m disheartened that my first prolonged memory is of doctors and hospitals and surgeries. I clearly remember getting my eye patches taken off after my second eye surgery at three and a half years old. That surgery, while not particularly invasive, was very traumatic for me. I would go so far as to say I had a bit of childhood PTSD following it – I played hospital almost obsessively for a few years and apparently frightened my mom by bringing up memories of after the surgery and random times. It’s hard for me to say if I wish I had another first memory, since after all getting the patches off was probably the easiest part of the surgery, but it speaks to me of how Moebius permeates everything. It’s not constant and sometimes not the most important element of my self-concept, but it’s definitely a defining force for me. Oddly enough, though, I remember asking my mom to explain the details of Moebius over and over to me when I was about seven, I guess I needed to hear it repeatedly in order for me to understand it. Not like a seven-year-old can really understand what a syndrome is, but I tried!

I’ve been able to cultivate so many positive memories from the many wonderful people I have been able to meet with Moebius over the years, but ironically I don’t really remember the first time I met others with Moebius. Honestly, I feel like it should be a watershed experience, but it just… was what we did. I was 9 when I first went to the get-together in LA with my family. I actually talked to my therapist about it last week (just wanted to make sure I wasn’t suppressing something traumatic!) and she confirmed my memories. I mean, I think I liked meeting people with Moebius but it wasn’t an immediate change. I remember a little of the LA Conference (although I had absolutely no memory of the fact that David Roche was the speaker. none at all!) and the continued involvement I’ve had in the Moebius community has almost been a given. I’m really glad that I was privileged enough to be involved with the Moebius community from the beginning, even if I don’t quite remember my own beginning with Moebius.

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