So everyone everywhere happens to be posting about health, body image, reconstructive surgery… and because I am trying to take my mind off post-interview/waiting to hear stresses, I’m going to try to put some of my current thoughts into semi-coherent words right now.
I don’t remember ever not having a vexed relationship with food. I am actually rather amazed I never developed a full-blown eating disorder. I have all the hallmarks for one (over-achiever control freak, trauma, etc.) Somehow, thankfully, I always have managed to avoid one.
A therapist once pointed something out, and gave me a bit of insight into my food issues: when I was born, they couldn’t figure out how to feed me. So my first, unconscious memories of food are challenging. When I was a child, I was self-conscious about how I ate. So, another strike against me having a semi-normal relationship with food!
Given that, I try my hardest to not be too neurotic about food and eating. Luckily for me, I pretty much only can eat healthy foods (basically, fruit and veggies are the only things I can eat and guarantee not feeling bad after, depending on the day). And coffee. When in doubt, I get a latte and call it lunch. Is this healthy? Is this physical, or psychosomatic? Who knows! I figure since it’s working for me now, I will just deal with it. (I wonder if it has something to do with low muscle tone? I have never seen a GI well-versed in neuromuscular disorders, so I don’t know.
On to exercise. I have a love-hate relationship with walking – I love to do it, my legs… not so much! For me, the most challenging everyday parts of Moebius syndrome is not at all the facial pareisis – it’s my vision issues and chronic pain. I got a dog in February, and if that isn’t good enough motivation to walk, I don’t know what is! It’s hard not to enjoy a leisurely stroll when you have a happy dog beside you. He also helps take the strain and pain out of everyday life, since he’s trained to pick stuff up for me and otherwise help me. I’m also all about finding ways that I can exercise within my physical limitations. I love mat pilates and yoga, they’re great for core strength and you do at least half of it sitting down! And riding horses is of course perfect for someone who can’t walk a lot, it’s an ideal sport for me! When I have the chance, I love to swim… just need to find a pool around here without absurd dues!
But I think, like everything, living healthy with a chronic condition is all about finding your own way in the world. Nobody’s journey looks the same, whether it is navigating surgical options or learning to take care of your body.
So what does this have to do with my third (very rough) point here, reconstructive surgery? Just that we need not point fingers either direction. Every individual, family, parent is on their own journey here, and the outcomes may look very different. It’s so easy to be judgmental and critical and confrontational, but I always try to remember that their experience is very different from my own because we are all individuals. I remind myself of that constantly. I hope I succeed.
And just to end, an image that always reminds me that there are no excuses: