'One day at a time': Gareth O'Callaghan on life, love and a terminal diagnosis

I am a fighter and I don't take too kindly to being told that there's nothing I can do and that I can't beat this illness

Gareth O'Callaghan was diagnosed with MSA in 2018. The disease is incurable, unstoppable, progressive... and terminal.

"I haven't seen you looking so well in ages." It's the sort of compliment that makes most people feel relatively good about themselves. Glowing words, often unexpected; an observation that you are clearly in a good space in your life and you appear in strong rude health. It's a compliment I've received in recent times from friends and acquaintances whom I haven't seen in months, possibly even years.

I always react by saying thank you. I quickly remind myself that kind words deserve a gracious reply. To be told you're looking so well and unscathed, when you've just celebrated your 60th birthday, is indeed a compliment in these modern times. My reaction, naturally, is one of gratitude.

However, lately, deep inside it's a different story; it's a reaction laced with confusion and — unfortunately — an unreachable sense of sadness for what my life is slowly losing. 

The compliment stays with me long after friendly encounters have ended. There's nothing disingenuous behind the words, but I still find myself analysing them. Is it because I really do look well or because the person paying me the compliment was half expecting me to look as ravaged on the outside as I regularly feel on the inside these days?

Instead of making me feel good, such words simply serve to remind me that, in recent months, I seem to be gradually sliding in a way that I'm fighting to resist. 

To be brutally honest, I am struggling badly, despite my reassurances to my beautiful wife that "I'm fine", which — of course — she sees right through. On some days it's as though I'm trying my hardest to come up for air, but I can barely reach the surface.

I am reminded that it's simply another of the many conundrums of this rotten, disgusting disease that I was diagnosed with in 2018, called multiple system atrophy (MSA for short). They don't call it 'the beast' for nothing. 

You could be the poster boy for health but, inside, your central nervous system is shutting down in slow-motion, pulling down the shutters in an excruciating, drawn-out form of unseen cruelty. 

'Look great, feel awful' is a reminder of how insidious this illness is. 

I'd prefer to look awful and feel great — even just for a week — but that's not how the game plays out. 

Eventually it reaches the 'look awful, feel awful' stage.

We live our lives as though we don't ever expect to die. Looking back, that's what I am reminded of over the better years. It's a perfectly normal state of mind to want to prolong our lives, our health, our love for others and the love they show us. 

We don't feel comfortable entertaining the notion of mortality. We refuse to entertain the idea that this will all come to an end someday. 

Death is something that happens to other people. Its finality overwhelms us. Death is not on the menu, when all we are trying our best to do is to live well and be happy. 

But it is on the menu. Right there. It's always in season. It was always there; we just didn't want to acknowledge it.

Almost five years ago I began to realise that I wasn't feeling well, in a way I had never felt before. It was a rather slowly forming sense of awareness. It wasn't flu or depression. It wasn't cancer (prostate or bowel, which had been my first suspicions). I got that checked out. No problems there. 

The only comparison I can use to make sense of this unwellness was that I felt as though I was losing my strength, both emotionally and physically; I felt in my mind and body that I was getting old far too quickly. 

Everything was becoming a huge effort, right down to getting out of bed in the mornings. 

I was getting bad dizzy spells at the most unexpected moments. I fell out of bed twice. I even fell out of the bath. Thankfully that morning, quick thinking made me grab hold of the towel rail. That broke my fall. 

Then I went through a phase of misjudging the height of road kerbs, which would usually result in heavy falls. Luckily I never broke or sprained any bones. I started to drop mugs and saucepans for no other reason than they appeared to simply fall out of my grip. 

It felt as though the directives to act 'now' weren't getting from the brain to the point of activity as fast as they used to. The brain's command to 'lift your foot now!' wasn't getting to the foot in that instantaneous moment when I needed it to lift.

I have been prone to bouts of chronic anxiety most of my life. Depression also featured high on the agenda during the 1990s, so much so that I was asked to write a book about my own experiences with depression following a radio interview in 2002 on The Marian Finucane Show. Throw a heavy history of OCD into the mixture, and I was on the verge of signing myself into a psychiatric hospital on more than one occasion. 

But what was happening to me in 2017 was different to anything I had experienced in my life. 

Whatever was going on inside my head needed professional help. I eventually threw in the towel and went to see my doctor.

During a long and detailed consultation, we ruled out a TIA (mild stroke) and Parkinson's disease. Good doctors can quickly tell what it isn't, as distinct from what it is. 

Medical diagnosis is a meticulous process of elimination. I had suspected a mild stroke, because I was experiencing strange feelings down the left side of my body: twitching fingers, a trembling hand, a clumsy foot, a dull aching numbness when compared to the right side of my body. 

So it wasn't a stroke, therefore it had to be Parkinson's, which tends to also affect one side of the body in its formative years. But the doc ruled out Parkinson's because, during the clinical examination, we both observed that my two hands were trembling, not just one. 

For a brief moment, my relief was palpable. Clearly my overactive imagination was making it all up. I just needed to get a grip and stop behaving like a hypochondriac. It was at that point that my doctor looked at me over the frame of his glasses and said rather sternly: "I need you to see a neurologist."

That was February 2018. Four months later, following weeks of tests and a fortnight in the neurological ward in Dublin's Mater Hospital, I was diagnosed with MSA. 

I had never heard of its existence before I started googling possible reasons for why I was feeling the way I did. It's linked to Parkinson's in its formative stages, in that it mimics many Parkinson's symptoms while its true identity remains elusive. Then it veers off on to its own mad, terrifying trajectory. 

MSA is incurable, unstoppable and progressive; and just as you're trying to catch your breath, you're told it's also terminal. 

In short, it doesn't stop until you're dead. Charming. I might just take a look at that menu again, please?

MSA is so rare that you should count yourself lucky if your GP has even heard of it. Most Irish doctors have never come across a single case of MSA in their entire careers. Its diagnosis can only be made by a neurologist, with further independent confirmation by a second neurologist. 

Why is it so difficult to diagnose? Well, for a start, it bears a huge resemblance to Parkinson's disease in its early stages; so similar, in fact, that many neurologists often diagnose it initially as Parkinson's, and then wait to see how it develops. 

MSA develops much faster than Parkinson's, with a rapid and often steep decline to a stage of total physical disability. Whenever I am asked to describe MSA, I usually say that it's a cross somewhere between Parksinon's on speed and the ALS (amyotrophic lateral sclerosis) form of motor neuron disease. End of life MSA is very similar to the final stages of ALS.

Approximately 300 people in Ireland have been diagnosed with MSA, although it's thought universally that as many as 12% of those with Parkinson's will eventually be re-diagnosed with MSA. 

I believe this percentage could be a lot higher, but neurologists are not in the business of telling patients they are going to die from an incurable illness when there is even the smallest possibility that they won't. For that reason alone, they tend to be reluctant to diagnose a terminal illness until they're certain there's not another less-formidable alternative that merits closer observation over time.

So that's the medical stuff out of the way. I officially have MSA since June 2018, but the onset of symptoms date back almost five years before that. So that indicates that I am almost "eight years in", as they describe it. 

From a prognosis point of view, that's not a good sign. However, I am a fighter and I don't adapt well to human statistics; nor, for that matter, do I take too kindly to being told that there's nothing I can do and that I can't beat this illness. 

As one stubborn friend of mine said recently: "I won't stop fighting it, even if it kills me!" 

I am what you might call a well-educated, slightly uncooperative patient — the type that asks a lot of questions and likes to know what the medication I'm taking is doing to me. 

I also like to try the complementary treatments that don't fall within the remit of traditional western medicine. 

I don't always do as I'm told, but that's because this body belongs to me — not the medical profession. I intend to go down kicking and screaming. As Dylan Thomas often reminds me: "I will not go gentle into that good night."

As a result of my diagnosis, I decided to quit my full-time radio work that I have loved for over 40 years. It wasn't an easy decision to make, as I miss it. However, I was warned that I could pay a high price by continuing to work in a pressured, high-anxiety fuelled environment. 

Anyone who has worked long term in media will tell you that the stress associated with the demands, deadlines and expectations of the profession is off the scale. It was explained in the clearest way possible following my diagnosis that anxiety fuels the progress of MSA and I was to avoid it at all costs. Easier said than done, but I'm still only learning about life.

I miss my radio show, as much as I miss that on-air connection I had with loyal listeners down through the years. I also miss a regular income and meeting people. 

Chronic illness is not just a hard station, it's also a lonely place. 

People who told you they would be there for you often tend not to be. It's one of the many harsh 'facts' of this new life; how you once lived has changed forever.

Chronic illness is also the elephant in the room. Soon after being diagnosed with a life-threatening illness that renders you 'disabled' — let's forget about political correctness here — you become a burden to society. This is a fact and I'll argue it with anybody who disagrees. 

Unless you are financially secure, many poor souls with serious illnesses end up barely getting by from week to week. What I call 'chronic-illness-induced poverty' causes anxiety to soar. It's a catch-22 situation. Once you are no longer occupationally functionable, you are deemed a burden. You no longer fit into any useful category in life. 

There are many people with chronic illnesses who become isolated, often slowly forgotten, until news emerges years later that they died in some caring nursing home that thankfully became their final refuge. Waiting on the last bus can often be the loneliest place in the world.

In 2015, I met Paula. I knew in my heart that evening that I would spend the rest of my life with her. We married last September. To say that I love her feels almost like an understatement. It deserves a louder voice because, while the space I inhabit in life slowly grows smaller, Paula has prevented my heart from breaking and from growing tired and joyless. I can honestly say, hand on my heart, she saved my life. 

Gareth O'Callaghan and his wife Paula.

When we met six years ago, neither of us had a clue what lay ahead. By the time we married, we both knew only too well what was happening to my health and the difficult, tricky road that lies ahead of us. My diagnosis, and the slow decline of my own quality of life, has had a serious impact on her. Of that, I have no doubt. 

She collapsed one evening shortly before we got married last September while we were doing our weekly shop and was rushed to hospital by ambulance. Her cardiologist allowed her out of hospital the morning of our wedding, with just enough time to have her hair and make-up done.

This is another aspect of chronic illness that very few people see, never mind acknowledge or even care about: the caregiver, who sacrifices most of their own life — that precious time and space — and freedom to look after the needs of someone they love, is rarely considered alongside the person they care for. 

Every caregiver is as vulnerable and as susceptible as the sick person they care for. 

Caregivers deserve more love and support, and recognition and credit than they mostly get. I baulk whenever I hear stories of how little, if any, kindness or support is extended to caregivers from the very people you would expect to be the first to reach out to them. Quite the opposite it appears. Withholding kindness and respect is nothing short of emotional cruelty.

I try to live my days and nights now with as little mental clutter as possible; one day at a time. Simplifying the way forward creates a freedom that no amount of money could ever give me. Without that freedom, my life would no longer make sense. 

Whenever I get angry or frustrated because of this bloody illness, I try to remind myself that anger will only feed the speed of the progress and discomfort. Anger not only shortens my life, it also increases the level of physical pain that I feel. It's really not worth it. 

Instead, I find that gratitude creates a more peaceful space to live within. And of course an acceptance that my illness will never define me. It might continue to play havoc with my body and my independence, but it can never diminish my spirit — unless I allow it to.

I have learned many things since receiving this unexpected diagnosis, all lessons of equal importance. 

A smile is easier than a frown. Genuine laughter lifts your spirit, just like a good cry can make you feel better. Laugh out loud, even if others don't understand what's so funny. Cry out loud, even if it embarrasses others. Who really cares? Very few. 

If you can't be kind, then be nothing. Sadly kindness — despite the high demand for it — is in short supply these days; in a time when so many need to feel loved, they need to feel the reassuring warmth of kindness. It might seem so much easier to step over someone, rather than walk in step with them; but empathy is a two-way street. 

If there's one rule that has no exception, it's that we can't go it alone. 

We need to be able to reach out to someone and share — as much as we need someone to be there with us on this short journey. It's impossible to travel it alone, but unfortunately there are those who have no choice but to try.

A diagnosis has taught me more in two years than I believe I have learned in an entire lifetime. And with all that in mind, on the unexpected occasion when someone tells me I haven't looked so well in ages, I'll remind myself, 'isn't it great to be told I look so well' — and isn't it even kinder that they made the effort to reach out. And just for those few moments of unplanned kindness, everything else can wait because I don't want this to end.

• 'What Matters Now: A Memoir About Hope and Finding a Way through the Dark', by Gareth O'Callaghan, is published by Hachette Books Ireland and is available now.

This article was first published on April 3, 2021.