…Getting back up is living” (Unknown)
My husband Alan was diagnosed with MS in 1997. He doesn’t have any remission – it’s there, full-on, 365 days a year. As it’s MS Awareness week, I’d like to share some experiences with you about what it’s like having MS in our lives.
We found out just a few days before we got married. It was a relief at first. We had convinced ourselves it was a brain tumour, and with some of the symptoms he had, it would have been really serious.
But no, MS came into our lives with the impact of a sledgehammer, at the worst possible time. Alan was told not to travel on our honeymoon to Antigua, that he could wake up blind or unable to walk with the effects of the heat. No dithering over that decision then.
At the time I remember telling people “he’ll probably end up in a wheelchair” and we all felt a bit stunned at the prospect. He is now using a wheelchair and mobility scooter regularly – cheerfully and mischievously I might add! He’s developed a sneaky move we call a ‘drive-by’ where he wheels into shot just as I’m taking a photo, which I do often as I love to capture the moments on holiday and with family and friends we’re so grateful for.
Sadly he now experiences many more distressing and painful symptoms than that every day (and night). If you look at any list of MS symptoms – yip, he’s probably got most of them. He deals with it all with an enormous amount of courage, good humour and grace, and really doesn’t see what all the fuss is about when people praise him for it.
Don’t get me wrong – it’s not all smiles and joking. We’ve shed many tears together and sometimes it’s felt like sitting in the dark like a couple of frightened children. But we’re always in it together.
Back to April 1997…I braced myself and cancelled the honeymoon. We were insured for 75% of the cost, but they must have heard from my voice how devastated I was and gave a full refund.
I then thought about how to make the best of the situation and booked a few days away in York. What I thought would be a fairly poor alternative to our original plans turned out to be one of the best times away that we’ve ever had. Granted, we had our first experience of Alan not being able to walk very well, and the rude stares of people as he tried to make his way through the crowds as a new user of a walking stick. As we had done with the wedding, we made spoken and unspoken commitments to each other to have a great time, to live in the moment and not be crippled (!) by the potentially very scary future ahead.
The strange thing is, I never considered asking someone else to take over and sort things out. I think it was part of my processing what had happened and starting to accept how our lives had changed dramatically in the space of one phone call from the consultant.
I never considered delaying the wedding either. As I said to Alan’s Mum, if I had to wheel him down the aisle in a hospital bed I would have done it. There was never any doubt. The only day I can say I really felt sorry for myself was my first day back at work. Knowing I should have been on a beach in the sun, having endless hazy days and balmy nights sauntering along hand-in-hand, was just too much to bear that day.
Last year I had a stark reminder of my own, to be in the moment and not worry about the small stuff. I had severe abdominal swelling and later the same day was sitting with a consultant, who had a piece of paper marked ‘SUSPECTED CANCER’ on it. In bold capitals – as if it needed to be emphasised. Talk about a wake-up call. He was able to tell me fairly quickly that it was probably a benign growth, but ‘probably’ isn’t quite reassuring enough for me. I was immediately drawn into the present, appreciating all the fantastic people, experiences and opportunities in my life. The next few weeks were blissfully relaxing and, even though I didn’t feel very well and had painful surgery, I appreciated the time out to really think about what – and who – is important. I’m hugely grateful that it wasn’t anything more serious.
There’s not a thing I would change. I believe there’s always a silver lining, and I’ve become really good at finding it. These experiences have enriched my life beyond my imagination and I’ve always trusted that we’ll be ok. The love and unwavering support from family and friends has been such a comfort and inspiration, and I think we have a great perspective on life. What makes me most proud is our 2 fantastic kids, and the way we’ve brought them up. Not hiding the ‘tough stuff’, not over-protecting them, and helping them to face the reality that Dad being (relatively) ok is a limited-time offer. They cope with it all amazingly well.
So that’s a glimpse of our life with MS, and the way we choose to live it. Sometimes it’s hard to talk about the difficult times, but I think it’s important to share. The more we can accept that it’s ok to be vulnerable….the more we recognise what we have in common, and how much support makes a difference, the easier it is to pick ourselves up again. And although I would never have wanted this to happen – or Alan to suffer the way he does – I’m grateful I learned these lessons early enough to choose my path in life. All the personal growth, hurting and healing is in many ways a gift. If sharing what I’ve learned with others can reassure and inspire them even just a little bit, it’s worth it. And I feel it enables me more than any qualifications I’ve achieved, to walk a challenging path with others through my coaching.
If you would like to read more stories like this one, and discover insights and inspiration, take a look at my book ‘Roots for Growth’. It’s about finding what we need within ourselves, and living a life of happiness and fulfilment.