I have always loved airports. Not the buildings themselves, but what they promise: a gateway to excitement, adventure, relaxation; the potential of reuniting with loved ones, or the thrill of escaping the mundanity of your day-to-day life. Everyone at an airport has a story to tell.
This time, though, it was different. Instead of excitement, I was filled with trepidation. I was nervous about how I would navigate my way through the terminal now that I was “officially” disabled. I hadn’t been abroad for over a year, and my mobility issues had significantly worsened in the meantime. Despite my worries, when the assistant at check-in offered me a wheelchair, I was reluctant to accept. Not for the first time that day, I cast my mind back to a school trip to Regents Street. We were only children, and my best friend and I had borrowed a disabled classmate’s wheelchair to see what it was like. The reaction from strangers was astounding – faces stared down at me with patronising, paternalistic smiles, and addressed me with condescendingly slow, loud voices.
Chateau Marmont on Sunset Strip in West Hollywood, CaliforniaGetty Images
I know my refusal was a little churlish, especially since I had read the horror stories of disabled travellers trapped on planes due to a shortage (or indeed, a complete lack) of wheelchairs at airport gates. However, I had already decided that this trip was an opportunity to re-establish my independence – to leave behind all thoughts of my prognosis and all aspects of my life that had been affected by my condition. In a country where no one knew me, I could just be me, as opposed to disabled me.
I was in my late thirties when I was diagnosed with myotonic muscular dystrophy (DM). It came completely out of the blue – I had only gone to see the doctor about a trapped nerve. Obviously, I ignored his warnings against looking things up online and rushed home to consult Doctor Google and see what I was dealing with. I learned that DM is a degenerative, multi-systemic neuromuscular disease. Symptoms include muscle wasting (inside and out), reduced mobility, gastric, cardiac, respiratory and speech deterioration, possible cognitive failure, and reduced life expectancy. Most crushingly, I learnt that there is no cure. A desperate search to find some dirt on my human doctor – maybe he wasn’t the top-class neurologist others professed him to be? Maybe he was wrong? – proved fruitless.
