January 23rd, 2023
It all started so simply. A European city break, good food, long walks and beautiful scenery. On the second day I developed a slight limp in my left leg and cursed the cheap shoes I choose to bring with me. I thought nothing of it and only complained at the end of each day. If I could only have known what was in store for me, I might have done things differently; but such is life and such is the impatient nature of our modern human existence. Over the next two years I fought a losing battle with my left leg, cursing it ever more frequently and wondering why it wasn’t getting any better despite elasticated supports and shoe insoles, amongst other things.
In April 2019 something changed. I was boarding an early morning flight to the UK; one of those many occasions where able-bodied people dash across the concrete apron and climb the cold slippery steps. My limp was so pronounced that I was easily the last person to reach the aircraft steps and as I started the climb, I felt the weight of the small suitcase dragging me backwards. Something was wrong. I made it to the cabin and had barely enough strength to lift the suitcase to the overhead bin. I crashed into my seat exhausted, my mind racing ahead with foreboding thoughts; what the hell was happening? That evening, in another anonymous business hotel, I phoned my wife and recounted what had happened. ‘Had I had breakfast?’, ‘No’. ‘Was I very tired?’, ‘Yes, I left the house at 4:30am’. ‘When are you going to slow down?’; ‘I don’t know’. But I was worried.
Looking back now, before my diagnosis in April 2020, I abused my body and never listened to what it was trying to tell me. Between those two April dates, roughly twelve months apart, I was tested and scanned a number of times with no obvious conclusion until finally, on the 4th of April 2020, Professor Hardiman in the Beaumont MND Clinic confirmed the diagnosis. One month after an unprecedented pandemic lockdown, the hospital was almost empty, I was on my own and alone with my thoughts. Mostly, I was flooded with a sense of relief; it had a name; it could be managed; the experts were here, and the back-up and information were available. My parents and grandparents had given me the gift of resilience, a determination that others found unbeatable – this mountain would be climbed one step at a time. My Granny Susan Dignam would say “Never let anything best you”.
And so, in the depths of a worldwide crisis, I faced my own personal challenge. A new challenge – perhaps the biggest of my life to date. The enormity of what I faced was too big to contemplate – it could only be bitten off in pieces. But how to tell loved ones and friends when a 2km circle from your house was the known world for months on end? How to explain to friends and colleagues over the phone, when the world was troubled enough, and people were losing their jobs every day? Initially, I chose to tell a very small group of immediate family and sought out a therapist to start to put order on what was happening. The IMNDA paid for the therapy and laid out a network of immediate support that all of my fellow sufferers rely on every single day.
When people ask me what the disease is like, I say it’s intrusive – it intrudes on almost every aspect of your life. And just when you think you have managed a symptom or restriction, it intrudes again. Even though the symptoms of MND are very individual, it’s this intrusion that is common, very personal and debilitating. I have learned to be so grateful for the independence I have retained and the parts of me yet untouched by the disease; my mind, my voice and my sense of humour.
Slowly but surely the mountain will be climbed, one foot in front of the other. An ankle splint and walking stick have been replaced by a walker and more recently, a powered wheelchair for longer distances. Through working from home, I proved myself to be just as effective in my job as before and have never missed more than a day or two of work here and there. In fact, the new perspective granted by this awful condition, I believe has made me a better father, husband, manager and colleague. And each time I reached a barrier, or this disease punches me again, I find a solution, a friend who knows, a gadget to buy or an expert who knows why. Two years after my diagnosis, the fact that I have made it this far, that life goes on and continues to be so worthwhile, gives me all the strength and determination I need.