There is a fear of disability ingrained in many of us from a young age. Being disabled or sick is seen as abnormal. Those of us with Multiple Sclerosis (MS) often deny ourselves the joy of participating for fear of being stigmatised. Disability has typically been something to hide as it makes others uncomfortable. Since some MS symptoms are invisible many people choose to conceal their disease as they worry about being treated differently or being isolated. This is further perpetuated by ‘masking’- passing as ‘non-disabled’. Invisible MS is more ‘palatable’ to the ableist world we navigate, which is perhaps why stigma is still so rife.
MS & Me
I’ve just heard a Christmas ad on the radio. I’m sitting at the work-from-home space I’ve carved out in the corner of the sitting room, inside invisible boundary between my working day and evening routine. The sound of the Christmassy jingle startles me and I mutter that it’s a bit early for it, isn’t it?
What would you say if I told you that the best therapist has four legs and a wagging tail? Or that my best friend likes belly rubs and chasing after cats? You’d probably think I was crazy, but my closest companion happens to be my 8-year-old dog Alfie (he’s also known as Alfred when he gets into trouble!). He’s a cross between a Jack Russell Terrier and a Pug. His breed is more fondly known as a Jug! He’s the resident sock thief and postman patrol in our house and from the day he arrived, he’s left paw prints on all of our hearts.
Thirty years ago, I was diagnosed with Relapsing Remitting MS. There were no treatments and the prospect for my future looked bleak. Mobility problems, the infamous MS hug and chronic fatigue were some of my early symptoms. I was 23 and looking forward to an exciting new career in London and it felt as if this bubble of optimism had been burst. Looking back, I did not have the mental tools to help me with such a life-altering diagnosis.
Whitney Houston sang about wanting ”One moment in time” and I’ve definitely wanted one moment when I’m more than I thought I could be. In fact, I believe that everyone deserves their own ‘moment in time’.
I was 64 on my last birthday and ‘celebrated’ my 33rd MSadversity shortly thereafter. I was never physical or sporty in my pre-MS life. I was never that way driven/focused and was happy just getting along. I never made the school teams, never wanted to climb a mountain or run a marathon but after the gravity of my MS diagnosis sank in, I wanted to keep going as long as I could. I wanted to be the best I could be.
Would you be interested in reading a work of fiction with a character with MS in it? Or do you read to escape the reality of living with MS and don’t want to be reminded of it? Or maybe you believe it would be good to see more representation - to normalise it as a feature of life many of us have to deal with? There are a number of memoirs by people with MS including our own Trevis Gleeson's 'Chef Interrupted' but I have not come across many novels where the main character has MS. I set out to find out if such novels exist and came across three.
“Energy creates energy”, is something my mum has always said. I never realised how true this was until I was diagnosed with MS and had none.
Now don’t get me wrong, when fatigue hits me, I’m not jumping out of bed to get some exercise done. Far from it in fact, but ‘energy creates energy’ as a rule is, in general, a good one to follow.
Nobody enjoys going back to the place where it all began, the room where you were told you had multiple sclerosis.
Your follow-up appointments don’t have to be an emotionally overwhelming time. If you go in prepared, you’ve won half the battle. Whether you’re a list-person, a cheat-note person or prefer to go in gung-ho with nothing, seeing your neurologist is the most important part of your treatment plan, so it deserves some work beforehand. Take it from someone born with a very practical minded streak who loves making plans, love schedules and lists!
It is safe to say this year has been the year of the ‘staycation’ and exploring our own back garden. This time last year we had all hoped that by now the pandemic would be a bizarre distant memory. Perhaps, you had dreamed of plane hopping to some exotic, sunny location during the summer. Finding some perfect getaway to relax and reflect on the absurdity of the last year while sipping a cocktail and looking out across a crystal-clear sea with waves breaking over ivory sand. But alas, it seems that the way we travel is not set to change anytime soon.
The innocence and compassion of childhood are qualities that I often wish we carried through to adulthood. If they had, I believe they would make us more empathetic and understanding human beings.