It’s not your MS, it’s ours
Alastair Hignell is a patron of the Multiple Sclerosis Resource Centre (MSRC). For further information about him please refer to Wiki Alastair_Hignell Below is his article.
‘It’s not your MS, it’s ours’
The best thing anybody’s ever said to me, bar none. The speaker was my wife Jeannie, seconds after I had broken the news that I had in all probability contracted a disease that had no known cause, no known cure, a totally unpredictable course and a strong chance of leaving me confined to a wheelchair, and possibly bed-ridden.
We were sat at the kitchen table of our house in the Westbury Park suburb of Bristol. Jeannie had returned only moments ago from her business trip to Atlanta and, though tired from the flight, was understandably fired up from the whole experience. After a near-sleepless night in the grip of the terror induced by my research into MS, I was hovering somewhere at the opposite end of the emotional spectrum. But I’d done my limited best to make the house look tidy and I’d been out and bought a bunch of flowers for Jeannie. And then I’d hit her with the devastating news of my diagnosis.
And this amazing woman, my wife of 18 years, the mother of our teenage sons, hadn’t batted an eyelid, hadn’t stopped for a single second to feel sorry for herself and in a single sentence given me the most amazing message. As I had tossed and turned throughout the small hours of the morning, all my nightmares had been centred on myself; in my mind’s eye I’d pictured a gradual loss of control over my limbs, my balance, my bladder and my vision; I’d envisaged the disappearance of my memory, my perception and eventually my mind; I’d projected myself onto crutches, into a wheelchair and finally into a nursing home; I’d seen myself surrendering my dignity, my control and my personality to the dreadful and inexorable march of the disease. And in every nightmare I was on my own.
But Jeannie’s words pierced the bubble of despair just as it was threatening to take off into the stratosphere. In a single sentence she tamed the wildest of my wild imaginings, restored the perspective that had gone missing overnight, and gave me the strength to face up to whatever it was that the future would throw – not at me, but at us.
Of course neither of us could know what that future might hold. We had no idea how the disease would develop and how it would change us. We couldn’t possibly guess at the demands it would make on us, as individuals and as a couple, and on our families, friends and colleagues. We hadn’t the faintest idea, that Monday in January 2009, how just about every aspect of our lives would have to be re-shaped to deal with the new reality. Probably just as well. But acknowledging that fact there and then, and resolving, babes-in-the-wood style, to cling together for the duration enabled us to put things in perspective, and make a start.
I am writing this in 2018. Little did I realise that the words of Alastair Hignell could prove to be so true. Retaining the all important quality of life. For nearly the entire time that a person has MS they will not need a carer or PA but someone who will act as an anchor point. A strong and sturdy pillar who will help you to survive the relentless buffeting that a person with MS will suffer. It can be brutal but remember to look forward and try to forget about what you have lost.
Difficult eh but worth the effort.