This year will mark five years since I was diagnosed with MS. During that time I’ve laughed, cried and been terrified. But here I am, ready to celebrate my fifth year with the illness, and despite everything I am happy.
The day I went into A&E with my parents was really scary. Over the past few days I had gradually lost sensation and strength in the left side of my body. I had to crawl up and down the stairs and almost dropped a kettle full of freshly boiled water on my dad’s head.
As I became clumsier and increasingly frustrated, it was clear that something was seriously wrong. So off we went to hospital. My parents held my hand and told me everything would be fine. They kept smiling as doctors came and went, assessing my symptoms.
Scrappy dappy doo
I’ve joked at length about my two weeks in hospital. How I had to stop myself from giggling during my lumbar puncture. How my body hair grew to unprecedented lengths over two weeks. And how I eventually managed to make my serious but caring consultant break into a small but important smile. I’m glad that I learned to laugh at MS. Something which could have worn me down has become, for the most part, normal and manageable.
These days I deal with my misbehaving left leg by naming it Scrappy, like an irritating but endearing puppy from a cartoon. Those closest to me know that they can join in the fun, and I am glad that they do.
Good and bad days
I have my good and bad days, like everyone else. The bad days are difficult. But often the hardest part of living with a disability is how others see you.
I recently read a brilliant article by David Bekhour: people who use wheelchairs don’t actually want to kill themselves, which explores perceptions of disability. The article made me cry happy and sad tears on the bus to work, because I’ve had to deal with this on many occasions over the last five years. Those around me have imagined the limitations my MS sets for me, risks to be mitigated when making life decisions, that I am less capable as a person. But David got it.
I am like any other 20-something who likes good cocktails and singing along to Beyonce’s new album. A woman who has a favourite book, regularly makes a fool of herself, tends to cackle rather than laugh, and who might wind you up sometimes. I see myself as normal, yet the perception of disability means that I have to prove this far too often.
But I and my loved ones know what I can do. MS and all, we will keep smiling and live life as normal. That’s seen us through the last five years and will see us through the rest. Devika is a gin and music enthusiast, and a keen writer.