“Do you miss driving?” my friend asked me recently. She was unable to drive for a few months and was frustrated at her lack of independence. I asked myself the question again, I was surprised at my lack of an immediate response. Do I miss driving…? Suddenly I was aware that I had not answered her and she was still looking at me, waiting for my answer. I reluctantly nodded “yes” to escape my muddled thoughts.

Later that night, while lying in bed unravelling the day, I found myself stuck on the question again – do I miss driving? I was perplexed at my inability to answer the question. Yes, obviously I missed driving but there were so many other losses I mourned since then; driving paled in comparison.

Nothing happens overnight with my MND monster. One day you begin to notice a mundane task starts challenging you. Ignoring it doesn’t help so you start overanalysing it, attempting to understand what’s happening to you. Before you realise it, your body has compensated by adapting a less fluid or clumsy motion to work around the failed muscle. That was how my body struggled to cope in the opening scenes of my MND nightmare.

By the time I could no longer drive, I knew the routine of a failing muscle too well. My car was adapted so I could drive entirely with my hands. Fantastic, until my hands began to fall apart right in front of me. My way of dealing with my losses took a recognised pattern. Shock, fear – tears. Realisation – more tears. Admittance to others – floods of tears. When the muscle finally relinquishes – uncontrollable tears. Through the torrential downpouring of tears, I somehow find the strength to pick myself up and move on. I have to, every body is willing me on from the sidelines.

Yes, not driving anymore was a huge loss, now I depend on others to drive me – but at the end of the day I am still getting around. I look down at my lifeless, misshapen, swollen hands, although still part of me they are useless now. Made redundant by disease. I desperately miss how my hands engaged with life. It’s the little things that I miss the most; random things, things my hands used to do.

I miss having a cup of tea on a cold day, wrapping my hands around the cup, soaking up the heat.

I miss rummaging through “that” drawer we all have, finding something you forgot you had. Rejoicing in the discovery.

I miss holding a pen and writing, especially birthday cards, it is just not the same when your mammy writes your husband’s birthday card.

Scratching an itch. Oh God, I miss it so much.

I even miss petting the cat and dog.

Above all, I miss skin contact, making physical contact with others. Touching, feeling and engaging with the world surrounding me.

I miss picking up my son and holding him tight against me. Feeling the soft skin on his back, caressing it to remind him of my unconditional love.

I miss holding my husband’s hand, how our fingers interlocked, tight and inseparable. Stronger together.

I miss giving and receiving hugs. Like a firm hand shake, a tight hug is a good sign, the feeling of hands across my back, full of good vibes.

As my eyes feel heavy and my body succumbs to sleep…I know tomorrow will awaken a plethora of new losses to lament.

Sharon x

Author: Sharon Friel

In 2012 at the age of 38, I was diagnosed with Motor Neurone Disease/ALS. A death sentence with an expected term of 1,000 days; I've since bypassed my expiry date. Although paralyzed from the shoulders down and voiceless, I am still here, still living my life. Wife, mother, daughter and sister; family is what makes this all bearable. Before MND hijacked my life, I was CEO/Manager of a Credit Union and loved exploring the outdoors - cycling, walking and kayaking.

14 thoughts on “Touch”

  1. Sharon, Thank you for helping me to understand a minute fraction of how terrible the MND monster is. Love you endlessly. Mum xx


  2. Sharon you make me realise that I don’t appreciate nearly enough how lucky I am to be able to do all the things you are no longer able to do. We gripe our way through life so often, bemoaning trivial little snags which, in the great scheme of things are in fact insignificant. You are an inspiration to all of us. Best wishes, Nora Sleator


  3. Sharon
    Your muscles might be weak and diseased, but you are the strongest person I know.
    Remember the Queen of England herself gets driven everywhere too.
    Love to you and your family


  4. Sharon you’re in my thoughts often & I’ve been wondering how you are keeping. Your words always move me & I think you’re amazing…keep up the good work. Lots of good thoughts and wishes to you and your family sharon. Debbie xx


  5. Sharon. Thank you for sharing so honestly and skilfully insights on your battle with this terrible monster but also your generosity in reminding me not to take for granted the wonder of touch in our lives. Love to you all xxx Phyllis


  6. Sharon, thank you for these golden bites of MND reality, you’re helping me (once again) to understand and deal with a life changing monster. How incredible and inspirational you are!!!. You’re my friend, still my friend xx


  7. Beautifullly written and heart breaking at the same time. My Dad had MND and this is exactly like him. Thoughts and prayers with you and your family at this hard time


  8. My mother is eighteen months into MND. So much has been robbed from her as you Sharon. But you did mention family and that bond of love will never be broken by MND.


  9. I lost my friend to the MND monster. You have reminded me to stop whinging about my aches and pains. Thoughts and prayers to you and your family.


  10. sharon, beautiful words. You remind us of all the things we take for granted. We are blessed and all the better for having you in our lives. It is a tough and hard hand you have been dealt but you face it with strength and honesty. Love to you all. Xx


  11. Sharon un autre, hugely insightful composition. So reading across , it appears , so deeply from the words , what you deal with. You place your words with eloquence and yet clear definition. Thanks for putting your thoughts down .
    Always thinking and wishing good for you . xx Caroline b


  12. Sharon, you are the most inspirational person I know. You get knocked back and yet you somehow get the strength to keep going and stay positive. I think of you often and keep you in my prayers. Love, Liz.


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