“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.