Finding silver linings: Cork teacher refuses to let motor neurone disease get him down 

Ballincollig man Diarmuid Hickey was given the devastating diagnosis almost two years ago and on Friday his students completed a remarkable week-long initiative, raising more than €36,000 for the MND charity

Diarmuid Hickey with daughters Ciara and Ella and his wife Báirbre at the Coachford College Walk 'Cause You Can event in aid of Irish Motor Neurone Disease Association. Pictures: Jim Coughlan

If there is anything good about being diagnosed with motor neurone disease (MND), Diarmuid Hickey says it’s how he has learned to find the silver linings in every single day.

There have been many on what has been a difficult journey since he first noticed issues with his right hand about two years ago.

Friday was another one of those silver-lined days as the school of which he is deputy principal, where he has worked for 32 years, showed it was a journey he and his family would not face alone.

Inspired by his courage and determination, the 850 or so students and staff of the Cork ETB school, Coachford College, completed a remarkable week of fundraising for the Irish Motor Neurone Disease Association (IMNDA), securing more than €36,000 for the charity.

Members of the Coachford College student council, Ellie Buckley, Aoife O'Leary and Sarah Jane O'Sullivan. who came up with the idea of Walk Cause You Can event. 

The brainchild of students Ellie Buckley, Aoife O’Leary, and Sarah Jane O’Sullivan, and organised by the student council, the school embarked on their Walk Cause You Can initiative last Monday, with the aim of completing 10,000 laps of the school walkway — an outdoor exercise project Diarmuid helped deliver on the school campus during covid, along with with teacher Val Vaughan.

Amid scenes of incredible emotion, it culminated with the whole-school event on Friday as Diarmuid, his wife, Báirbre, and some of their children, looked on.

It is a cruel irony for a man who loves and taught physics to have been dealt the same hand as one of his heroes, the legendary British physicist Stephen Hawking.

But Diarmuid, 56, a father of four who lives in Ballincollig, retains his sharp sense of humour, christening his new powered wheelchair, The Hawk, in Hawking’s honour.

“We take every day as it comes and make it as good as it can be,” he said.

Every day brings new challenges. It’s the nature of the beast that is MND. It is all about finding silver linings, day by day, week by week, and they’re there.

“We accept the cards that we are dealt with every day and promise to play them as best as we can.” 

After his Gaelic football and soccer playing days finished, Diarmuid took up running and had completed 20 marathons before covid, but in January 2022, he began to have difficulty with his right hand while using nail clippers and clothes pegs, before noticing a weakness in his right shoulder a short time later.

Coachford College students and staff on the school walkway.

He mentioned the issues to his GP, Dr Pat Lee, in March, and was sent for tests that all proved clear before he was referred to Dr Helena Moore, a neurologist in Tralee.

“Thus began the most difficult months of my journey with MND,” Diarmuid said.

“Dr Google became my companion and life alternated between being convinced (a) I had ALS, MND’s deluxe version, and (b) being convinced that I was catastrophising, ‘ridiculously’ fearing Dr Google’s doomsday’s end game.

“Anxiety has always been part of my life but in this period its levels escalated to new heights. It was a difficult time.” 

Diarmuid and Báirbre first met Dr Moore in late May 2022, a few weeks after he started having fasciculations, twitches that can be an indicator of ALS, in his now more weakened right arm. Dr Moore saw some in his left arm too.

The couple, who had not shared any of their concerns with family or friends yet, returned to Tralee in July where Dr Moore confirmed the diagnosis ALS, the most common version of MND — a rare and terminal neurodegenerative disease.

Diarmuid said it was “a defining day”.

“Dr Moore was wonderful, my type of person: direct, honest, informative and empathetic,” he said.

Báirbre and I stopped in Killarney on our way home, and over a glass of wine declared that we would manage this together, that there was life in the old dog yet.

“We chose to process the diagnosis together ourselves first before we shared the news with others. That day, my anxiety lifted completely, and hasn’t returned at all, my brain had given me one break."

Diarmuid and family with students who too part in the fundraising walk.

Once their eldest daughter returned from her J1 in America in late August, they shared the devastating news with all their children — Colm, 26, Ciara, 23, Ailbhe, 20, and Ella, 16 — together, at the same time, with labradoodle Yoshi a constant companion for all. They then shared the news with extended family.

Diarmuid returned to work that September and told his colleagues and asked them to continue as normal.

“Their silent support has been unyielding, with no awkwardness,” he said.

Thanks to support from school principal, Áine-Máire Ní Fhaoláin, Diarmuid decided to continue working, conscious the nature of his job allowed him that choice, a choice not everyone with MND gets.

Diarmuid continued as a deputy principal, and teaching a sixth year physics group as his right arm continued to weaken.

“The only noticeable change for them was when I returned after the spring 2023 break suddenly ‘identifying’ as left-handed. They took it in their stride; nothing fazes physics students,” he quipped.

Away from school, the family worked to make the best of every day, with trips no longer put on the long finger, providing fabulous memories that will be cherished forever.

Then last summer, Diarmuid noticed a significant deterioration, particularly in his back, and he returned to school last August with a walking stick, unable to return to solo teaching, before he requested a wheelchair, supplied by the IMNDA.

The walk raised more than €27,000 for the Irish Motor Neurone Disease Association.

He is still working and attends Prof Aisling Ryan’s clinic in Cork once every six months. He says he has excellent support from HSE physios, speech, language, and occupational therapists, public health nurses, and wonderful support from the IMNDA.

But he has also made himself available to the research teams in Trinity College Dublin and Beaumont Hospital, led by Prof Orla Hardiman.

We navigate our journey as a family with all its ups and downs, each of us in our own way and in our own time. It’s not easy. There is no right way.

“We are lucky that the whole family is in Ireland, four of us at home in Ballincollig and two in Dublin, but at times those in Dublin probably feel far away.

“My own family is nearby in Blarney, also wonderful in every way.”

He said Lou Gehrig, the NY Yankees baseball star who had ALS in the 1930s, is an inspiration and he lives by his famous quote: “I might have been given a bad break but I have an awful lot to live for."

He also finds inspiration in the Stoics of ancient Greece and Rome, as he quotes Epictetus, who said: 'What I advise to do is not to be unhappy before the crisis comes’, and Seneca, who said: ‘I cannot escape death, but at least I can escape the fear of it.’ 

Donations to the school’s Walk Cause You Can initiative for the IMNDA can be made here.