My Failed Swallow: A Disability, Not a Mindset
I could have written this from so many different angles. The fear I faced waking up in an unfamiliar body. The frustration of struggling to find help in a medical system so geared to common ailments and diseases and learning that there is no one who can help. The disgust at how women are treated and pigeonholed as "emotional" or "depressed" - being told "Sweetheart, you've just forgotten how to swallow" is so demeaning and disrespectful. Being an outsider in your own life - not taking part in family meals or celebrations. Work functions and events that all center around food and champagne. Friends that don't know how to catch up if not over coffee, and family that can't come to visit without planning a barbecue. Or how to deal with food, food and more food being shoved in your face everywhere: magazines, billboards, TV, in the streets, friend's houses, supermarkets, restaurants, cafés, even in your own home. And how when you're starving, it's pure torture.
Frighteningly my doctors seemed equally perplexed. I felt sure I would die; either slowly by starvation or quickly from choking. My days became solely about survival. Trying to find ways to trick my body to get the food down. I would set goals for myself - a whole tub of yoghurt, a glass of water and two whole strawberries to be consumed by the end of the day. I rarely met them.
I felt embarrassed, humiliated. How do you explain to someone that you can't swallow when you don't even understand it yourself? That it takes you half an hour of constant, focused effort to drink half a glass of water? I felt weak and ridiculous. And my friends withdrew from me, too. Not knowing what to say or how to handle it.
And it felt like everyone around me was missing the seriousness of it. It's basic: People need food to live. Without it, they die. Was I the only one who realised this? I felt alienated from the people I once knew, like I existed in another realm now, and I stopped trying to reach out.
The hardest part has been the isolation, being struck down with a condition that nobody, even you, under-stands. I know there are people in my life right now who think that if I just tried harder, or was braver, I could eat. They just don't get that it doesn't work like that. My swallow fails on me. It's a disability, not a mindset.