Living loudly queer and stumbly
Hey! I'm Maria, a Greek Cypriot, Gemini brummy diagnosed with relapsing remitting MS in March 2021. And queer since I fell in love with both the Doctor and Rose watching Dr Who as a 7 year old!
During LGBTQ+ history month, I’m reminded of how much LGBTQ+ and disability liberation come hand in hand. We’ve both furiously fought to be recognised, appreciated and respected as members of society just like everyone else.
My MS experience
It began in November 2020 (as if a pandemic wasn't enough), when I woke up with double vision. I panicked I’d ruined my eyesight from not wearing my glasses while working with a mask. Hilarious to think with hindsight that varifocals were my biggest worry at that moment (even though grandpa-chic is very in).
No matter how much I rubbed and squinted my eyes, the double vision persisted. I went to A&E, and they carried out many (unbeknown to me) neurological exams. I was kept there and after an MRI scan and lumbar puncture, a neurologist changed my life. There was a chance I could have MS.
A barrel of MS symptoms
After 2 weeks of steroids and sleep I was back at work. I nodded in pessimism as everyone told me 'they have to tell you the worse-case scenario, you'll be fine’. One month later, it was as if I'd fallen in a barrel of MS symptoms while covered in honey. Double vision, aphasia (I had some difficulties with speech), incontinence, soul-crushingly intense fatigue, brain fog, electricity running up and down my spine, spasms…
My right side became invisible to all my senses, except sight. I could see it, but moving it was out of the question unless I wanted to end up on the floor. Which I did many times.
The next few months consisted of physiotherapy, trying not to fall in the shower, too many TV shows and takeaways. And a vicious depressive spiral that was the hardest symptom to survive. Come March, I was conflicted with how desperately I was hoping to be diagnosed as I was heading to hospital.
Adjusting to a new me
That day of my diagnosis started months of starting and stopping disease modifying therapies. I was on Tysabri (natalizumab) for only 6 months because I tested positive for the JC virus. I was then off treatment for 2 months, and I’ve been on Ocrevus (ocrelizumab) since then.
For months it was hard to ignore the hypothetical bomb I felt in my body every time I woke up. Would I have double vision and see two lightbulbs above me? I’d then be surprised to find only one.
Eventually, I became more adjusted to my new life. My new worries and achievements, my new community and the friends within it. My new catchphrase (#MSWHO?!) and my new me. After a while, I found pride in the new me. Pride in sharing the new me, and using that pride as fuel. Unless I'm tired, and then I try the next day.
Finding my disabled family felt reminiscent of finding my LGBTQ+ family. There’s a shared feeling of unadulterated support, understanding and love. Throughout the entire history of disability and LGBTQ+, we find each other, and are the reason we survive. I am so proud of this history. It’s the reason I am able to live loudly queer and stumbly!
