I’m in a constant battle to hold on to my identity these days. I don’t recognise the person looking back at me in the mirror. Practically all the things that made me *me* have departed: I don’t look the same, I don’t sound the same, I don’t move or do things like I used to. Because I’m not the me I used to be.
No longer known as a wife, mother, daughter, sister or colleague; I’ve acquired a new, unique, identity dictated by my poor health. Forevermore I’ll be synonymous with a disease: Sharon + MND = me. That’s the label life has bestowed on me.
It’s practically impossible to hide the impact of a serious disease on your face and body. Regardless of this, I still try. I still like to put on my make up daily, wear nice clothes, paint my nails and don jewellery. I enjoy my style but most importantly I’m still trying to maintain part of who I was.
Since being diagnosed, I’ve been catapulted on a voyage of self discovery and I’ve been forced to carve out a new identity for myself. Whilst forging this new identity, I’ve also had to rediscover my purpose and worth in my new altered life. I had lost my self worth along the way, I was no longer a contributor in life but a taker, or, the worst feeling ever; a burden.
I managed to remain working for two and a half years after my diagnosis, thanks to the support of my work colleagues. For a short time after I retired I still had the energy to do lots and get out and about. It wasn’t until the fatigue hit me that I needed to rest more and therefore didn’t get out as much. That is when my self worth plummeted. While physically everything has slowed down, a myriad of ideas still swirl around my head. Fortunately writing this blog has given me a new focus and direction for ideas.
My husband said to me recently that “MND has been the making of me”. I was shocked at his comment and it took me a while to make sense or perhaps peace with it. This Ted Talk, by writer and psychologist Andrew Solomon helped me understand the uneasy compliment: ‘How the worst moments in our lives make us who we are’. To watch, click here.
“You need to take the traumas and make them part of who you’ve come to be and you need to fold the worst events of your life in to a narrative of triumph, evincing a better self in response to things that hurt”.
When a seismic change rocks your life it causes you to re-evaluate everything. While MND has crushed me physically, it has made me stronger mentally. I’m not unique in reacting this way. I know and read about fellow MND patients around the world who have chosen this path too. There’s something about this disease that brings out the fighter in you, maybe it’s the injustice of your body wasting away that spurs on a mental fight like never before.
I haven’t given up on myself yet – I’m determined it will not quash me entirely!