Facing the light

I wrote this post back in December but it’s taken me a while to pluck up the courage to share this. May marks a year since my MS diagnosis and the month of the Pieta House Darkness into Light Walk. I don’t have the words to thank Pieta House for the help they gave me back in 2010. They got me through some of my darkest days and it’s because of them that, even now, after being diagnosed with MS, I’m still putting those lessons and that knowledge into practice. I know there are undoubtedly so many more tough days ahead with MS, but, for me, managing that starts with my mental health. If my mental health is good then I feel able to take on anything. So thank you Pieta House – you gave me my life back.

Here’s my post:

How many times in life has something happened to make you think: “This is it. I don’t know who I am anymore. I don’t know what I’m suppose to want from life – what’s left?”

I was at an MS conference a few months ago and one of the speakers asked us how many of us felt we’d lost our identity after our diagnosis. In a room full of people, only a few of us put our hands up. I was one of them – and it got me thinking a lot about my identity and what exactly that meant.

This time last year I was sitting in hospital, about to embark on a journey I never wanted to start. I expected myself to crumble and yet I didn’t – I handled it in a way I still can’t believe. Turns out the past had really taught me something after all.

I struggled with depression throughout my teens. It was a spiral of self-destruction that was kick-started when I was only eight and I fell victim to school bullies – they took a happy little girl and they tore her apart while the teachers looked on, telling me it was my fault and that I had to try harder.

At only 10, they left me wishing I was dead. You don’t understand the meaning of suicide and depression at 10. But you do understand pain – and I just wanted that pain to stop so much. To this day I can still remember that feeling in the pit of my stomach – fear – pure and very real and warranted fear. Those bullies and teachers stole my childhood and threw me into a world of mental illness I wanted nothing to do with, it was a world that haunted me for years and years until I was finally ready to confront it. I had subconsciously pushed away everyone that loved me – on some level I thought it would be easier to just one day disappear if there was no one left to care. But they did care, even if I didn’t see it, and I did deserve to be happy, even if I didn’t think it.

Walking through the doors of Pieta House was the single most difficult thing I have ever had to do. I walked through those doors feeling trapped as my 10-year-old self – I still saw myself as that lost little girl, I clung to her and I clung to her sadness and her heartbreak. But now it was time to set her free. And in setting her free I opened up a whole new world – I remembered how to just live again. I learned what it was to do more than just survive – I could be happy. I learned that sadness doesn’t always mean a spiral of depression and destruction – it’s okay just to be sad sometimes.

I expected an MS diagnosis to send me spiralling back into that lost little girl I once was…

But it didn’t.

At the time I couldn’t understand that.

Yes, I cried until every part of me ached, but I never got close to feeling the way that little girl had felt.

“But this is MS,” my negative voice screamed, “this is your health, this illness could leave you in a wheelchair, this illness could destroy your wedding, this illness could turn your husband-to-be into your carer.”

It screamed and screamed and got louder and louder.

“Cry. Cry. You haven’t come to terms with this illness until you’ve wrapped yourself in weeks of grieve. Until you’ve worn yourself tired from crying.”

And so I listened – after all, this was the voice that had been with me all those years ago.

“Fine,” I said. “You’re right. This positivity must just be a mask – the real Rosie would crumble when faced with this. Wouldn’t she? You thought depression was bad – try MS.”

One nice IPIR (immediate post injection reaction) later and I finally gave in to Little Ms Negative. I quit running, I decided I hated it. I sat crying every evening. I sat hating myself and hating my stupid body. Hating MS and hating that happiness had come and gone again.

“I’m broken,” I screamed at Niall. “In the animal kingdom they’d leave me for dead,” I said. “My stupid brain is destroying itself – I’m a malfunctioning product of human evolution”

“Are you happy now?” I thought. “Is this coming to terms with MS?”

I felt so much anger and fear – I felt the unfairness of it all and I let it take over. I let it seep into every part of my life and for two solid weeks I set down the path of self-destruction all over again.

Then, one Saturday amongst all my crying and heartbreak, Niall suggested we go for a walk. Just a simple walk – one foot in front of the other.Thinking of nothing else except the crunch of autumn leaves beneath my feet, the sound of the birds in the sky, the crisp air filling my perfectly-working lungs, Niall’s hand in mine.

That day taught me what the last two weeks of crying and grieving had made me lose sight of – life is just a series of small little steps and the only one that actually matters is the one you’re taking. So when things gets tough, stop and focus on that single step – focus on everything you have in that moment – not the past or the future or the what ifs – none of them truly matter and you will deal with them and cope with them if or when they do happen – but don’t give them any more power than they deserve over you.

And so, with just one little step, I set about rebuilding myself all over again.

I did lose my sense of identity when I heard the words MS, but in some strange way I found myself back at the very start – back before all the pain of MS and depression and bullies. I found a person I thought was long gone. I found a far more confident and stronger version of myself that I’d never acknowledged before. A Rosie who no longer cares or worries about what people think. A Rosie who can comfortably walk into a room full of strangers and strike up conversation. A Rosie who doesn’t spend hours dwelling on what might or might not happen. A Rosie who embraces the things she loves and keeps sight of what’s really important.

I spent two weeks wrapped in grief because it was the way I thought I should react to an MS diagnosis. But, despite all that, I still didn’t come close to feeling how that 10-year-old Rosie felt and that taught me something too: it doesn’t matter what the situation is, whether you’re sat in hospital facing a diagnosis you never asked for, facing a mental illness you never asked for, or crying in the corner of a school playground, the emotions and the way you feel in those moments are as real and as painful as each other – the source is irrelevant and neither has a monopoly on the other. There’s no right or wrong way to feel or react in such a situation – you do whatever you can at that time to just survive. And surviving is the important bit. You will survive and things WILL get better.

The Saturday before my MS diagnosis, myself and Niall got up and the crack of dawn for the Pieta House Darkness into Light Walk. I knew there was a high chance that Wednesday’s appointment would finally confirm I had MS, so the walk had extra significance – in a way, I knew my whole world was about to change.

As we stood listening to Joan Freeman talking to the thousands of other people in the crowd, I paused to take it all in – If I could survive bullying and depression, what was another battle? The difference this time for me was that, thanks to Pieta House, I had the tools to cope and I was stronger than I’d ever been – I was ready to face this. Life isn’t a series of challenges on the road to happiness – life is the challenges and the happiness all wrapped up in one.

Niall squeezed my hand and I thought that whatever Wednesday would bring, I was ready for it – I would deal with it. And so we turned and faced into the light together – one step at a time.