Trigger warning – this is an intensely personal and frank account of how MS has affected my life.
Sometimes, it hits me like a freight train in the night. I started writing these words whilst I sat watching dance groups from across the UK in Edinburgh. As they were performing some phenomenal dances the thought crept up on me that my Mum will never dance again. This thought bounded around my head, growing and growing until I could think of nothing else. In silence, I cried. Whilst I sat in one of the most beautiful cities in the world surrounded by dancers in the prime of their youth, my Mum would be sat alone in her care home, surrounded only by her aging cat.
About 10 years ago, my Mum was diagnosed with MS.
I’ve never been shy about my Mum’s illness, but it’s always been somewhat harder to discuss what it actually means to me than what it is. I’d like to use this blog to get some things off my chest, to be frank in talking about how MS has affected (and continues to affect) me & my mental health, and to talk about what I’m doing to try and improve things.
What is MS?
MS is shit. It is a horrible, debilitating disease that slowly destroys everything a human is. I’m not a specialist, but over the years I’ve been forced to understand what MS is, and what it can do to a person. There are about 100,000 people in the UK with MS, which is a condition of the central nervous system. Messages between the brain and the body are carried by nerve fibres, which are coated in a protective layer called myelin. In MS, the immune system mistakes this myelin for a foreign body, and attacks it. This damages the myelin, stripping it partially or completely, and in some cases damaging the nerve fibres. There is currently no known cure.
What does this mean?
It depends. There are four main variations of the illness in adults, each of which presents a range of symptoms. These variations often follow on each other, increasing in seriousness, but not all cases are the same.
The first type is benign MS – some people may suffer initial relapses followed by a period of 10-15 years of remission.
Other people have a cycle of relapses and remissions, whereby for a brief period symptoms will present themselves, and then they will go away again.
Some people have secondary progressive MS (typically after suffering relapsing-remitting MS) which is defined as “a sustained build up of a disability, independent of any relapses”. In this variation, symptoms present themselves and continue to grow in severity, with the potential for relapse. This is the variation my Mum has.
The final variation is primary progressive MS – where symptoms gradually get worse over time from the start, rather than appear as relapses. This is the version that killed my Aunt. (Technically, MS is not fatal, but eventually the muscles weaken to the extent where it is impossible to eat unaided, and eventually even to breathe, leading to death. It is this asphyxiation which causes death, not MS, although as one leads to the other I have had no qualms in blaming MS.)
But what does this actually mean?
I remember the first time I found out my Mum had MS. I came home from school when I was in about year 9, and found my Mum sat at the kitchen table in an awkward, silent pose. It was just the two of us – my parents divorced before I went to secondary school. At first I didn’t notice anything, and babbled about my day, but as the lack of response or interruption continued I stopped. Mum talked about her visit to the hospital to visit the neurologist, and about how they had discussed the symptoms she was displaying. Until this point we had thought Mum had acute-dicemilated-myelo-cafelo-myelitis, which I knew only as a fatigue inducing illness that allowed me to skip the line at theme parks. She explained how everything now indicated this was no longer an accurate diagnosis and how, after 15 years, it was confirmed she had MS.
I broke down.
I cried in her arms, in the bathroom, and alone in my bed. The next day at school I managed less than 30 minutes before bursting into tears as I came to terms with the fact that this wasn’t a long named, incomprehensible disease but a real, terminal illness that I could actually understand. Knowledge is power, but in this case, power was pain. I will never know how much I cried that day, but I have memories that will stay with me forever, that still bring a lump to my throat as I write this. I remember sitting in the library, tears pouring down my cheeks, with librarians powerless to do anything but observe. I remember breaking after being teased for missing class, and the shock of my raw emotion silencing those who usually had nothing but harsh words. I remember sitting next to my Head of Year, trying to put some words to my pain, but managing only to notice tears dripping off my nose. Even I don’t know how that day ended, or how I got home. I only know that I hope you never have to go through what I did that day. I got home and shut myself in my room. This was one of the darkest days of my life.
Perhaps the hardest part of writing this blog is realising that for every tear I shed then and now, it must have been so much worse for my Mum. I can barely see to write these words through squinted, blurry eyes – yet to this day I cannot imagine the pain my Mum feels, physically, mentally, emotionally.
This all came back to me in December 2012 when Mum announced she would be moving into a care home. Each stage of the illness strikes new pain into my soul, wakes me in the night, squeezes a physical reaction from the positive face I put on every day. I wept in my office like I wept in school all those years ago. I put on a mask of support as I visited the home with Mum, as I packed a lifetime of possessions into cruel, unforgiving cardboard boxes. I focused on what I could do, letting emotion surface only when out of sight of the world. I drove my Mum away from a home town to which she would never return in silence. My only public moment of weakness had been in a vets, when staff repeated a tale I heard over and over again – they had known my Mum from her arrival in Tavistock 20 years earlier, they had watched her bring nothing but selfless love to those around her, and they had watched her as her health declined, week by week, month by month, year by year. They had arranged a card and a present, signs of how deeply she was respected for who she had been. My emotion leaked out uncontrollably.
Now, in many ways, things are OK for my Mum. She is in a Leonard Cheshire care home where they really care for residents. She is, ironically, more independent than she has been for many years, as the home is only 2 minutes from the centre of Wetherby. The home is set up to provide whatever level of support may be needed. But no matter how much support my Mum has, MS remains like thief in night, slowly stealing every aspect of who my Mum is, until nothing remains.
I know that there is nothing I can do to make my Mum better. All I can do is show my love, help her with day to day tasks whenever I visit, and support the charity that supports research and victims. This is why I am cycling 1000 miles for charity, and this is why I need each and every one of you to donate money to try and combat this horrible disease. Your money supports MS nurses, supports those like me who have a loved one with MS, and supports the research which may one day lead to a cure so that no-one needs go through the same pain I have.
You can donate online at www.justgiving.com/antonybutcher
I’d like to finish this post with a poem by my Aunt Frances, who passed away in 2008. When times get tough I often retreat into her poems.
i) The Answer
The answer to the impossible question
“How are you?”
Is “Not so bad, thanks.”
Thus you avoid negativity, duplicity,
And above all the truth . . .
ii) Life is a Gift
Life is a gift
(there’s always a but)
Sometimes it feels like
Falling into a combine harvester
I want to give it back.