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.
And here I sit, surrounded by my four walls day after day because of the prison those words brought with them. People only see me at my best, when I look ‘normal’. They don’t see how I hide behind a face full of makeup on the days I make it out that front door. They don’t see me lying in pain, crying because it’s unrelenting. They see me moving, smiling, laughing, happy and they think I look ‘healthy’ and that I must be doing really well. How do you explain that really well means the damage accumulated before the right drugs pumped through my veins is damage that’s here to stay. A messed-up nervous system. A body that’s experienced more physical pain in a year than many people will experience in a lifetime. A body that can one day take the dog on a walk around the block and the next can’t make it up the stairs.
When you ask me how I’m doing (if you even bother anymore – many people don’t) do you want the real answer or the sugar-coated version that makes you feel better?
When you see me, who do you see? Do you see me for who I am now, do you accept the new me? Or do you see a shell of a person who once was and you pity me? I am still Rosie. My body may limit my capabilities but my mind does not limit my dreams. I am so much more than the woman with MS.
MY BODY MAY LIMIT MY CAPABILITIES BUT MY MIND DOES NOT LIMIT MY DREAMS
Some of you might wonder why I never stop talking about it if I want to be known by more than my MS label. Why have I appeared on TV, radio and in national newspapers to talk about it? Why am I one of the ambassadors for this year’s Kiss Goodbye to MS campaign if I don’t want to be known as Rosie, the girl with MS?
Because, whether I like it or not, MS dominates my every waking moment and if me talking about my MS makes even one other person with this cruel disease feel less alone then it’s been worth it. I look back on myself at my lowest point with this disease, gripped with pain, reduced to a heaving mess on the floor and begging for the end because the pain had reached unbearable levels. I needed somebody to reach out to me then. To tell me that it won’t always be this hard and that I’m stronger and more amazing than I realise and that things will be okay again. I will be okay again. Those weeks were some of the loneliest of my life. I felt like the only person going through what I was. The only young person with MS to be in chronic pain and to have had their mobility affected at such an early stage in the disease. And that sort of loneliness runs to your core.
You are not alone
To the people with MS who are reading this, I want you to know you are not alone. Together, side by side, we stand united in our battle against this cruel disease. I want you to know I have your back and I know you have mine too. I know that now! Together we will fight to make society and those in power understand what it is we live with, so that we won’t have to engage in tiring battles for the best drugs, so that vital pain medications won’t be taken from us when we’re at our most vulnerable, so that we might finally receive the neuro-rehabilitation that could be the difference between walking again or not (something I never received), so that we can continue to live active and engaging lives.
These last few weeks I’m learning what it means to grieve. And so the music I’d once muted finally plays again. It’s okay that it hurts, that with the tears come the memories. I can’t move on if I don’t say goodbye to my past. If I don’t allow myself to feel the hurt I just bury it – and in burying it I deny it. This month, for the first time ever, I cried when I saw my wheelchair. I cried because it was like I was seeing it for the first time. When it arrived over 18 months ago, I looked upon it as a positive – and I’m not saying that it’s not, without its help there’s an awful lot of the world and of life I wouldn’t have had the privilege of engaging in and enjoying – but this month it was like I was seeing it for the first time ever. I was looking at it and not allowing myself to default to only seeing the positives, I was allowing myself to see what it was that wheelchair symbolises; the loss of mobility, the loss of the Rosie who lived and thrived off fitness and being in the great outdoors, the Rosie who ran and dreamt of completing a marathon and hiking the beautiful mountains of Ireland and beyond, the Rosie who’s MS was not going to stop her from doing the many, many things she loved. But my MS did stop me doing those things and more besides. And it’s okay that I’m sad about that.
I’m in the process of meeting the new me and to embrace what’s on offer, I have to stop feeling the pull of the past. I don’t know what my future holds, when I’ll relapse again and what that’ll mean for me. But I do know this – I’m not alone.
My story is only one of 9,000
More than 9,000 people and their families live with MS in Ireland. My story is just one of those. MS is the most common disabling neurological condition among young people. This May, we can start to do something about that. So I’m asking each and everyone of you, whether you have MS or not, to stand side by side with us in this latest campaign. To tell your family, friends and colleagues that for the month of May and beyond, we stand united as we Kiss Goodbye to MS.
How can you help?
Please text KISS to 50300 to donate €4 to MS Ireland and visit https://kissgoodbyetoms.ie/ to find out about other ways you can help.