The tightly-bound threads are loosening, unravelling. I’m unravelling. Little by little I’m making less sense of this disease and more sense of the scale of its destruction. I’m angry, sad and hurt. It hurts to look back and think of just how much it’s robbed from me, to watch my ghost lace up her runners and race out into the crisp autumn morning. Every fibre of my body aches to be her.
I feel like this is a nightmare I’m going to wake up from. That the walking stick, the wheelchair and, most of all, the pain, that they can’t be permanent … can they? Yet they’ve become a part of who I am now. I spend so much time behind closed doors, my day stripped back to a level I can cope with. On the better days, the days the disease is invisible to the outside world – never to me – I put on my make-up and I venture outside to the shop or into the office. But on more of those days, I’m behind closed doors nursing my broken body, bargaining with it for time.
This is the first time I’ve shared a picture of myself using a wheelchair. Up until now, I’d have stood out of the chair or I just wouldn’t have bothered with a picture. I wasn’t going to post this at first, but then it dawned on me that the reason for not sharing my holiday snap was not because I disliked the way my hair sat or because I was stood at a funny angle, it was because I was in a wheelchair and that wasn’t something I was used to seeing. I was used to going on holiday and walking until my feet burned and ached and this new image of me was something I had to work towards accepting.
However, having used the chair in wonderfully accessible places like Copenhagen and then places like Dublin and Boston, which aren’t very accessible, I’ve learnt that my biggest issue with using a wheelchair is not that I see myself as disabled, it’s that the outside world is designed in such an inaccessible way that it highlights my disability and sets up barriers for inclusion at every turn. Simply put, by using a wheelchair, you are not considered or treated as equal by society.
TV Presenter Lisa Cannon along with Rosie Farrell and Sara-Jane Tracy, who are both living with MS, launched Kiss Goodbye to MS, the campaign for MS Research and vital services, from the station platform at Heuston Station, Dublin. Picture: Marc O’Sullivan
The music blares through the speakers of my computer for the first time in a year. The tears flow thick and fast, an angry river held back for too long.
I preferred the silence that echoed around my lonely existence. The music is a reminder. Every song a memory. A memory from before. From before those words echoed around my head. From before I had a clue what those words were about to bring with them.
As you’ll know, I got married last July. We had an absolutely amazing day but during the months leading up to the wedding I really struggled. There was nothing out there for brides or grooms with disabilities, nowhere to turn to – and at times it became a very lonely road (see article I wrote for thejournal.ie). I don’t want anyone else getting married to have to feel that way. We may have a disability but we are still totally deserving of the same wedding experience as everyone else, we deserve a platform where our thoughts, concerns, advice and pictures are shared.
I’ve drawn up a quick list of some tips I gathered during my time. I know most of these are from a personal (MS) angle but I hope that they translate across the board to anyone living with chronic pain or reduced mobility. I can easily add to these so please feel free to message me if there’s anything you would like included. I’ll be sharing these tips on Facebook via the new wedding group I’ve set up for people with disabilities. Please share the link with anyone you feel may benefit from it. Hopefully via the group we can provide a platform for advice and tips that will make planning a disability-friendly wedding that bit easier for everyone 😊😘
Did it go off without any glitches? No. But it was amazing in spite of everything MS tried throwing my way. As I walked down that aisle, I felt like the luckiest person alive and MS wasn’t even in the picture. Thanks to all my amazing friends and family and the great staff at Markree Castle who constantly warmed up my heat pack and provided a comfy chair for me to rest on in between pictures, I didn’t once feel disabled or like MS stopped me. It was our wedding day and that was all that mattered.
I’ll leave you with a reading from our ceremony and some pictures too. Looking back, I’m now able to say that I’m very proud of our wedding invites. I hand painted the whole original design during a relapse last year, so it’s nice to see something good came out of that. I’m getting back to my painting more now as well as it’s the one thing that totally calms me and makes me feel totally myself.
I’ll also start updating this blog a more in the next while and I’ve a couple of posts to put up that I wrote in the last few weeks but never got around to uploading.
And then there’s me. Locked out of the wedding world. With a month to go I found myself on the floor, crying with pain that had constantly intensified over two weeks. Taking me to my lowest and darkest point since diagnosis.
The words stick in my throat. I can’t find them. I don’t know how to let them escape. And yet if I don’t, they’ll drown me.
Just because we don’t speak something, just because we lock it away and keep hoping, it doesn’t make the fear any less real, particularly when that fear is so locked up in your reality. We have to confront it, as impossible as opening up those flood gates may seem, as difficult as it may be – if we don’t, how can we move forward?
Lights twinkling, Christmas songs echoing in the background, people running past in a flurry – rushing, racing. Life goes on and on.
Our tree stands proud in the corner. Its lights silently twinkling, casting a warming glow over an otherwise dull December.
It’s such a welcome sight. It means I can finally spend time with family I’ve missed all year and it means we can finally wish 2016 good riddance. I will never be as happy to welcome in a new year as I will be this year.
I kept my head above water for most of it. Despite constant illness after illness since February, despite watching other family members battle ill health too and watching them lose loved ones, we kept going through it all.
But there’s only so much paddling you can do beneath the surface before something has to give.
The silence wraps itself around me a hundred times over. It’s suffocating. I lie still. So so still – not wanting to awaken the monster. My patience is wearing thin. I’m so tired of this. Tired of fighting it. Tired of living with it. Tired of always having to think about it.