It’s a cold, crisp spring morning and as half seven approaches, people begin appearing in ones and twos. There are empty chairs spaced out across the car park, and everybody claims one. It may be chilly, but the atmosphere is warm and friendly and there is plenty of chatter as they wait.
his is a happy gathering.
“Noel will be here in a minute,” says one. Sure enough, Noel arrives, places a small speaker on the ground, prompting a few groans about his musical taste, and after a bit of banter it’s down to business. It’s not a morning for standing around – everyone is here to move, and with good reason.
For the next 45 minutes they all do as much as their bodies allow, or maybe a little more, as they are put through their paces in an exercise class with a difference by Dr Noel McCaffrey. This “class” is tailored for people who are, or have been, seriously ill and there is only one rule: you do as much as you are able to do.
Every person here has a story to tell about coping with chronic illness: heart disease, lung disease, diabetes, stroke, arthritis, Parkinson’s, MS, cancer… they are men and women of all ages, and they are all survivors.
“We organise our classes by ability, not by illness, with the exception of cancer – and the reason for that is they [cancer patients] just get such an intense bond,” says Noel, the founder and face of ExWell, which promotes exercise for those living with chronic illness (its name is short for “exercise for wellness with medical oversight”). This class, on the grounds of the Irish Wheelchair Association in Clontarf, Dublin, is for an advanced group, but there are gentler classes too.
Noel beckons for me to take the last remaining chair and to join in. The chair is your base station for the class.
“That’s Vincent’s chair,” someone says. Everybody knows who Vincent is, but he is recovering from surgery so won’t be back for a few weeks. Now well into his 70s, he is an inspirational figure.
I remember Vincent too. I remember marvelling at how determined he was not to be defined by age or illness. The sweat was pouring off him the first time I saw him. He was 30 years older than me and full of vigour. I was recovering from major surgery and trying to find a way back into life.
In early September 2016, I suffered an aortic dissection and underwent emergency surgery to repair it.
Everything changed for me in an instant. A tear in the aorta is extremely serious and, if not caught in time, is often fatal. It is most common in men aged over 60, especially among those who are overweight. I did not even come close to fitting the profile for this condition. I was very fit at the time – the fittest I had been in years – and planning on running my first marathon in Dublin that October.
The recovery was slow and frustrating. I had gone from running a half marathon to needing help to get in and out of bed.
Over the weeks that followed my release from hospital, I could feel my body healing. I walked most days, further whenever I could, and when the new year came around I began to think about running again. My body, though, had other ideas.
The physical toll of something like this is one thing – it can be measured. When you’ve been around others who have suffered a trauma and heard their stories, you come to realise that the physical demands of recovery often mask a deeper problem.
For some, like myself, the sudden brutality of being struck down at a time when you are feeling at your most vibrant, leaves scars which run deeper than those left by the surgeon.
There’s a sense of feeling vulnerable that can be overpowering, and that
vulnerability can become a tremendous burden, a barrier to your full recovery. The sooner you learn that acceptance is the first important step on the road to recovery, the better.
Some are quicker in this regard than others. I kept a diary in those months after
I left hospital and while looking back now, it’s clear I was struggling to process what happened, I didn’t know it then – at least not straight away. There’s a theme running through the early pages of feeling on the periphery all the time, of not feeling involved in anything happening around me.
I caught a break when Evelyn Kimmage, a physio, pointed me towards Noel McCaffrey. She could see that my expectations of what I should be able to do far exceeded what I was capable of and that I needed proper guidance.
Thriving, not surviving –ExWell class regular Michelle Merrigan and its founder Dr Noel McCaffrey. Picture by Gerry Mooney
Noel is a sports and exercise medicine specialist, and consultant in sports medicine in Cappagh National Orthopaedic Hospital. He is also well known in GAA circles as the former Dublin footballer who won an All-Star award in 1988. His son Jack was footballer of the year in 2015 and his daughter Sarah is also a Dublin footballer. He has been to the forefront of promoting exercise as part of physical and mental wellness for the chronically ill for most of his career.
I met with him in February 2017, and a short diary entry that day captures my first impressions: He seemed to understand my predicament; he seemed to think there is a place for me there. I’ll go back tomorrow anyway for the trial session. I was emotional there today – happens a lot.
The first few classes were tough to adjust to. I felt I didn’t belong with these sick people. I believed I had all the answers and just needed to sort it out on my own, in my own way. But Vincent and his friend – another Noel, a serious GAA man from Clontarf – and a few others, took me under their wing and I finally began to see that I had to, literally, walk before I could run.
Ian Mackey, another well-known regular at the classes, had open heart surgery seven years ago, just after taking early retirement at 60. He thought he was in reasonably good shape when it happened.
“We were having a good time and then I got this,” he says. It slowed him down, he reckons, for two years.
“The mental side is probably the hardest thing to get over, because that’s your confidence. To get your confidence back takes a long time. And even to get your thinking process back – it takes a while.”
It doesn’t matter what age you are, the journey is largely the same. “The critical thing is physical conditioning and alongside it the social interaction that goes with group classes,” says Noel.
Two years ago, Michelle Merrigan was the fittest she had ever been. At 41, she was enjoying the feeling that goes with that, but when she discovered a lump in her breast all that changed. Her worst fears were confirmed when she was diagnosed with aggressive HER2 breast cancer.
The treatment was tough but she had steeled herself for it. Nothing of course can prepare you for those days when it feels as if there is no end in sight, but she feels she got through it quite well – or at least as well as can be expected. Her son Sam was three-and-a-half at the time and she said to herself many times that she had to be around for him, to be part of his future.
“I actually felt really in control, bizarrely, during treatment,” she says. “I didn’t really feel isolated. There were dark days when you can’t get out of bed, and there were a lot of tears. But I was just focused on getting to the end of it.”
Many people who have experienced the trauma of serious illness can relate
to this. There’s nothing more reassuring than having a plan to follow, and the knowledge that in doing so your chances of survival are greatly enhanced. It provides focus, keeps you in the here and now. Often, it’s what happens next that can be more of a challenge.
“After treatment, that was harder,” she admits. “In a way, the hospital says goodbye to you and it’s great, and I felt so elated when I finished all the main treatments. I had to spend another year on Herceptin, which is nothing like chemotherapy, but also actually trying to get back into work, and get back into normal life, and still attend every three weeks… that really messed with my head for some reason.
“I found that you’re out of that cycle, out of that regimented plan, and that’s kind of when you can fall apart. The last year wasn’t great. But in the last few months I have started physically and mentally to feel much, much better.”
Merrigan has become a regular at the classes run by the ExWell team, and has started to get her fitness back. More than that, though, she has stepped out of the shadow of her illness.
“I think I’m getting back. I’m able to do more. I think when you’re in treatment, as much as I say I would have liked to have been here [at classes], I wouldn’t really have been able, even though I was young and came from a good place of fitness.
“Chemotherapy is just hell. Sometimes, with the best will in the world, you just can’t get out of the bed – or you can, but you can’t do anything when you do get out. Or you can just about make it to the top of the stairs. That’s the reality of chemotherapy.
“But now I feel I’m in a much better place. I feel the treatment hopefully has in some way left my body. I can feel the difference in my body. I feel better; I feel I’ve more mental clarity when I get to a Friday. I don’t feel as tired. I suppose maybe in a way the endorphins are kicking in.
“On a Friday I can go, ‘oh, I did something every day this week’. So I might have done yoga one day, a sea swim for 10 minutes one day, and the rest of the days I did ExWell. I’m getting to the end of the week more in
control and feeling much, much better about myself.”
The body and the mind become deconditioned during illness and exercise of any kind is critical to both. “What we’re into is secondary prevention,” says Noel. People become afraid of doing anything, he adds, and a particular phenomenon is that they become afraid of simply being out of breath.
“There’s nothing wrong with being breathless – it’s enjoyable, as you know, but people become nervous about it.”
There is another common factor among those he has worked with – often he discovers people are told not to exercise by their family or friends, or even sometimes by doctors.
“For whatever reason that it happens,” he says, “it is profoundly damaging, mentally and physically, and we can fix that, once we get their buy-in, once they trust us, we can fix it without fixing or even attempting to fix the underlying illness. That’s the point. No matter what the illness is we can recondition you, and your quality of life transforms.”
This is not an idle boast. The numbers back it up. On my first day in the group, four years ago, I had to perform basic tests: walking between two fixed points for six minutes, and five sit-to-stand movements. It’s all done at your own pace, but in the weeks and months after your first day you repeat the tests and there is usually significant improvement – dramatic in some cases. This has been borne out in repeated studies.
“The critical thing for us is to demonstrate impact, so we focus on measurement,” says Noel.
He believes every population centre in the country should have access to an ExWell programme, or similar.
“There is a pathway to solving this problem of offering community-based, exercise-based, chronic illness rehab which is rapidly accessible and effective and enjoyable and built around social interaction. And it’s great fun.
“I call it exhilarating medicine because it is so rewarding for all of us. We love it.”
When the first Covid lockdown led to classes being closed, Noel admits he and his team were initially slow to adapt. They went online and grappled with the challenges brought by trying to interact with everyone – because the social element of the classes is hugely important. He and his team were delighted when it took off.
Then they started holding classes in outdoor settings. The success of this has shocked everyone involved, given the Irish climate, and so they continued in the open air through good days and bad – and they have been noticed. When in the last lockdown they were exempted by the HSE, Noel felt this was a major moment in his grand vision. It was a validation.
“Effectively, these classes are like medical appointments. They [the HSE] allowed us to continue. We tried the outdoor classes and suddenly it was like a light switch. It’s safer. The patients love it. The other thing is, it normalises behaviour. The guys walking the dog going by looking at this and seeing what’s going on…
“It does take us into a very interesting space because Dublin City Council’s parks department are very positive about embedding this or introducing this into the parks as an activity, a bit like the park runs.
“We hope to be running this on the side of the street in Ballymun, outside the primary care centre at some point. We’re running it in the car park in the Square as an alternative [during Covid]. Having done it, we suddenly realise, well, here’s a model for scaling which doesn’t require facilities. You can do it anywhere. This has been our discovery during Covid and we’d never have found it otherwise.”
With the HSE on board, other partners have also come forward to help ExWell – a not-for-profit group – spread its wings.
Novartis are involved in a programme for women recovering from breast cancer, and UPMC are also very interested in being involved in projects. Aside from numerous centres in Dublin, ExWell are in Waterford, Kilkenny, Sligo and Athlone, and looking at Castlebar, Clonmel, Tralee and Naas. And because they have mastered engaging virtually with their members, they can now think about a nationwide approach.
One of Noel’s visions is the concept of an exercise hospital where it is built into your treatment – before, during and after. This applies to all ages and abilities. “You just embed the whole exercise experience as normal behaviour.”
It’s all about getting the message out. “I honestly don’t know why consultants don’t recommend people after having surgery of any sort to come to a class like this,” says Ian Mackey.
“You feel better because you feel as if you are doing something for yourself. You have to get your confidence back. You might be afraid, ‘oh, I can’t do that, I might damage myself’. But you’re brand new, so you’ve just got to go and
do things.”
In the first week of February 2017, I did something I had never done before, or since: I wrote down three goals, at the request of Noel McCaffrey. I recorded them in the diary: Two weeks – jog one mile; two months – run a 5k; six months – be as fit as
I was before I got sick. Wouldn’t that be great!
And yes, it has been great. I’ve been running ever since – with no plan to stop any time soon. When I go back to Beaumont for check-ups, my consultant always says the same thing when I ask if I’m OK me to keep going: “Absolutely, do whatever you can.”
ExWell Medical is open to all recovering from or living with chronic illness. For
more information, see exwell.ie