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!
Sharon x
Don’t. Don’t give up. You’re like a rich mineral seam, but it’s not iron ore or silver or copper. It’s strength of character.
Donal x
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Thanks Donal x
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Dear dear Sharon Friel. You are the most inspirational person I have ever met. You are an angel on earth. Best best wishes to you and your family. Terri
Sent from my Samsung Galaxy S5 – powered by Three
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Terri, you’re too kind. Sending you love and best wishes too x
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Hi Sharon. I’ve never met you in the flesh but the person writing this blog is a person I know I would get on with and that is because of your personality shining through what you write. Take care, Ena
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What a lovely thing to say Ena, thank you x
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Thanyou Sharon for sharing your inner thoughts. I enjoy reading your blogs and admire you for speaking so openly about your disease. Youve obviously not lost your sense of humour though. Keep writing ! Your amazing – would there be a book there ?!?
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Thanks so much Ciara, you’re very kind x
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Hi Sharon, it might be a cliché but you and your blog are truly ‘inspirational’. You show the rest of us how the ‘human spirt’ can co-exist and triumph over adversity. That’s a tremendous gift and a worthwhile job. You do it so eloquently, with intelligence, sensitivity to others and good humour, all of which you had in abundance before MND came along. Love and best wishes, Paul
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Thanks very much Paul, that really means a lot. Hope you had a lovely summer with the family. Love and best wishes x
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Thank you for your honesty – it’s given me tremendous insight with my father-in-law who has MND but doesn’t speak about it.
I expected his self confidence to take a knock with the loss of privacy & independence but I never thought about how he might have to re-evaluate his self identity. You have an amazing fighting spirit – please keep on blogging! 😘
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Hi Sharon,
Once again you make me pause in a busy life and just be (if that makes sense). I always love your grasp on our language, even when you were teaching me mind maps. Take care and keep blogging, you are amazing.
Lots of love x
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I don’t miss the assignments or the exams but I do miss the comradery and creating my mind maps (saddo!). Love and best wishes x
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Thinking of you always Sharon…and no you are wrong – ill heath does not define who you are. That is only the physical body. The essence of who you are still is fully present and as vibrant as ever. We all know that underneath that treacherous body is a wonderful heart with a mad , eccentric, full-on living thriving, loving, curious, generous, highly intelligent and most enlightening personality. Sharon YOU ROCK!
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As your name suggests Joy, you’re a pure joy to know. Sending you love and best wishes always xxx
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your blogs are great and your determination magnificent
All my love and support xxxx
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Thanks dad, love you too x
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Hi Sharon thank you for writing so honestly about how you feel it makes me stop and think and appreciate what I have. Keep writing Sharon you have so much to give you are amazing … you are still a wonderful Wife,Mother,Daughter,Sister and friend.Keep up the fight..xx Trish
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Thanks so much for your kind words Trish x
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Thanks for sharing your story Sharon, you are such a stong woman, i know only too well what MND does to a family, ive lost an aunt and uncle to this horrific disease and now my lovely cousin Robert has it, he is 34 years of age and breaks my heart what any MND sufferer goes trough, stay strong and im sure you have the most beautiful family around you, take care, xx
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I’m lucky to have a wonderful family Vivienne and you know how important that is. Best wishes to you and your family x
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As is often the way with the world wide web, we stumble upon authentic voices that reach into our hearts.
I may be a stranger but I think you’re a talented writer, your blog is worthy of a book and your family and children must be so proud of you.
Brave, resilient, inspirational and raising awareness of MND.
All the best
Carol
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Thanks so much Carol, your kind and generous words mean the world to me x
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You are a positive impact on everybody who comes in contact with through the blog or in your daily life.
How many of us can say that ?
Looking forward to reading your thoughts for a long time to come!
Keep going
C
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Thanks for sharing your fabulous red head with me, she always lifts my spirits and makes me smile – even when I don’t feel like doing so!! Best wishes, Sharon x
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You are still a mother and a daughter; your children will love you no matter what. My partner was diagnosed with MND five months ago; two week ago we were married. I don’t care about the MND she is still the woman I fell in love with, I have no doubts that your family will see it the same way. Keep looking so don’t give up and I wish you all the best
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Thanks for your kind words Tim. Huge Congratulations on your recent nuptials!! May you have endless years of love and happiness x
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