“MARRY ME,” HE whispered nervously despite the seven years of being together.
“Yes,” I gleefully declared – okay, well, truthfully I blubbed it between tears of joy. As we looked forward with excitement and hope, little did we know just how rocky the road to marriage would become.
Niall, my now-husband, helped me run my first half marathon four months after my MS diagnosis at the age of 25. Exactly a year to the day, where in 2015 I’d been laying out my running gear, in 2016 Niall was instead carrying me up the stairs as my leg had stopped working.
I was buying walking sticks and my first wheelchair and, amongst the relapses that have left me with permanent damage and chronic pain, I was planning a wedding. I had become a disabled bride. But I didn’t expect what came next: that the doors to the ‘wedding world’ would be slammed shut in my face.
Where were the couples with disabilities?
I went through magazine after magazine. Where were the couples with disabilities? I lost hours to desperate online searches for words like “disability” and “disabled” on wedding websites.
So there I was: I’d stepped across society’s great divide and not only was I now disabled, I was a disabled bride. I was invisible.
Hotels assumed that because I had poor mobility, I’d want their afternoon tea option for my hen party (because, of course, people with disabilities can’t get glammed-up for a night out). I spent months searching for a ‘wedding walking stick’ and a bra that wouldn’t trigger the dreaded MS hug (a band of pain that causes shortness of breath as the muscles go into spasm).
A heavy wedding dress would have caused me to overheat – a condition called Uhthoff’s phenomenon (the worsening of MS symptoms due to a rise in body temperature).
I got lucky and had my ‘Say Yes to the Dress’ moment in the first shop. And in that moment, MS didn’t exist. And it didn’t exist when I went back for my first dress fitting (having just left hospital).
Every person will face different issues
Disability varies from person to person. Each person will face different issues. You have people getting married who have a visible illness, who might use a wheelchair or a stick, and then those with often invisible conditions such as MS, chronic pain and fibromyalgia.
I have relapsing-remitting MS, which means periods of attacks followed by ‘remission’. But remission doesn’t mean you go back to your old self. Damage sustained during a relapse can stay with you.
I wasn’t fully aware of this when we started planning. I couldn’t understand why the wonderful travel agent suggested a disabled room on our honeymoon. I had no idea that booking that disabled room would mean we wouldn’t have to cancel another holiday.
At times during those two years, I felt more alone than I’ve ever felt. But I clung to one image: me as a bride on my dad’s arm, walking down the aisle to Niall.
I’m happier than I’ve ever been
Niall survived two brain tumours and I have MS. It’s easy to get angry and feel that, at 27, we shouldn’t have experienced the things we have. But at some point in life, most people will. And we know that we’ll face whatever the future holds together. The one thing MS couldn’t touch was our relationship.
Despite how difficult and challenging the last two years have been, despite the uncertainty of MS, I’m honestly happier than I’ve ever been.
That’s the thing with life. The best bits are thrown in with the tears and the hard times – so you need to seize them. If the last two years have taught me anything, it’s that the best bits are always yet to come.
Rosie McCormack is a 27-year-old sub-editor and designer with Irish Country Living in the Irish Farmers Journal. She blogs about her MS journey at sherunswithms.wordpress.com. MS Ireland and Novartis Ireland Ltd recently hosted MS Research Explored a public meeting for people living with MS, their family and friends and the general public. Watch the video recording here.
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