June 12th, 2020
By Andy McGovern
I’ve been thinking. Maybe this self-isolation and the threat of coronavirus can actually be of some benefit. As a long-time survivor of Motor Neuron Disease. I have been isolated now for more than a month. But I’m not in the least bit worried or bored with that. I live in a countryside in County Leitrim. Some would refer to this as being isolated at all times. But now it has come into its being. In fact, it might be the envy of some city dwellers. As I sit outside my comfortable home, I feel anchored to nature. The birds singing all around me. Little lambs playing in the fields beside me, cattle lowing in the distance. And the cuckoo has arrived. This is heaven, my heaven. If only this Motor Neuron Disease would go away forever.
I’ve been a member of the Irish Motor Neuron Disease Association, since it’s foundation in 1983. I have attended most of their AGM’s. I have met hundreds of people with this disease. We have shared our stories together and over the years I have lost hundreds of fellow patients to this terminal disease. I have made friends with many of them, but with the passing of time, I have lost most of them, and they are now just like passing ships in the night.
As I sat in my kitchen last night. I treated myself to a nice Nightcap drink before I went to bed. Something I do most nights. This makes me much at ease and very comfortable and I get lost in a sea of tranquillity. I started to think of people that I have met with this disease over the past 42 years that I have got it. These were lovely memories ignited by the nightcap! The kitchen was quiet. The TV turned off and I felt that this was a moment to treasure, not a pain or ache just floating on the clouds.
And as I dwelt on those numerous people that I had met with MND, one image of a young man kept coming back time and time again. It was Padge Kelly. He was the youngest person in Ireland to be diagnosed with MND in 2004 at the age of 16 years. He was about 18 years old when I first met him at one of our AGMs. We hadn’t much conversation or connection. Padge seem to be always happy and smiling and enjoying life. He had always a young group of his own age friends with him. And they would have him out on the dancefloor in the wheelchair. So why should I interrupt? There was an age gap between us of 55 years. The only thing that we had in common was MND. And I had a grandson his age. I did get talking to his mum and dad. Pat & Joan. I felt very sad for Padge, but no way was I going to approach him. Sorrow and pity are two great imposters that no one with MND wants to hear from so-called sympathisers.
I met Padge on many occasions and we exchange smiles. That was the one thing about him that I will never forget: “his smile”. Padge’s condition deteriorated fairly fast. He lost his speech but he never lost his following of young friends. There was always a crowd with him. He had a great interest in sports of all kind and indeed he met with some great sports personalities. Including Roy Keane. He done many fundraising events and highlighted the awareness of Motor Neuron Disease all over the world.
Many years previously, to keep myself occupied with this devastating disease, I started to write my biography. It consisted from the day I was born to my 80th birthday. I struggled with the foot control mouse pedal and voice recognition technology. And finally, I had my book ready for publication on my 80th birthday. The book known as: “Against the Odds, Living with Motor Neuron Disease”. I had a successful launch in Leitrim. And I was invited to do another one in Dublin in the Lighthouse Cinema Smithfield market. I also done an interview earlier that day with Matt Cooper for rte. There was an enormous crowd at the launch. They came from the Irish motor neurone disease Association. The Caring and Sharing Association. Some of my family, including, my son, daughter, daughter-in-law, my grandson and brother Jack. My friends from Leitrim that was now living in Dublin. The great memory man himself. Jimmy Magee performed the launch. His son Paul was another victim of this cruel disease.
Was it any wonder as the night went on, I felt that I was on a high? The drinks were flowing and finger food was going. Everyone was congratulating me and singing my praise. It felt like everyone wanted a piece of me? Then I felt a tug on my arm. I turned around and it was Joan Kelly. (Padge’s Mum) She said: “Andy will you come down here and meet Padge. He wants to say hello to you.”. I went down a few steps where Paul was. He was lying on a wheelie bed. He looked at me with his smiling, gleaming, dancing, eyes. I said: “ Padge. Thank you for coming.” That’s all I could say as I fought back the tears. I lifted my useless hand and arm and left it down on his chest. For a few moments We looked at one another through tearful eyes. Padge had lost his speech through MND. I had lost mine that very moment and could not say a word. I walked back to the celebrating crowd, fighting back my tears. I was no longer the hero of the night. That young man lying on the wheelie bed that had come all the way to support me. He was my hero. I kept smiling with my friends, but it was a false smile. I never felt as low in all my life.
I stirred in my comfortable armchair. That distant memory, crystal-clear in my mind as if it was yesterday. The name I had choosing from my book against the odds – powerful words which reflect Padge’s story, every bit as much as mine and many more others with MND. We are all in this together. I left my kitchen and as I made my way to take my rest. I thank God for all that I have. I vowed to continue as long as I have a voice, to speak out for my fellow warriors. As the experts of the world strive to find a cure for corona virus. I pray that our day will also come when we can live in a world free of MND. In the meantime, I will remember Padge with his laughing eyes, his beautiful smile, filled with courage, which continues to inspire others. Padge you are a star.! Sometimes we don’t see the stars, but we know they are there. You are my hero who fought this devastating disease for 15 years and kept smiling.
Padge died on 30 May 2019, at the young age of 31 years. May he rest in peace.