“Have you a topknot going on back there?” asks The Irish Times photographer, a little dubiously.
“I do,” says Cillian O’Sullivan, the Meath footballer who is sitting on the steps, suddenly not grinning into the lens. There follows some good-natured back-and-forth about a tuft of hair that’s sticking out to the left of O’Sullivan’s head. And while our man doesn’t exactly say it’s ruining the shot, he conspicuously doesn’t not say it either.
“Here, go easy on me,” says O’Sullivan, taking it down and letting his mane run free. “I have MS, you know.”
He can joke about it now. O’Sullivan’s life has changed over the past 10 months and the type of person he is – serious-minded, evidence-led, a doctor of clinical psychology – would never allow him to dismiss his Multiple Sclerosis offhand. It is as scary as it sounds and it will be with him for the rest of his days. But he’s come through too much not to see the funny side when he can.
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Like the spring night he went back to full-contact training with Meath and made it clear to everyone that he didn’t want any special treatment, whereupon the team’s spiritual leader Donal Keogan thoroughly obliged him on the very first ball he went for.
“He absolutely hammered me,” O’Sullivan laughs. “So that was great. I saw it as a true act of kindness.”
Or when the neurologist in St Vincent’s hospital asked him had he taken ayahuasca or anything like that while he and his wife Caoimhe were in South America. And he had to inform him that no, it wasn’t that kind of trip at all.
Instead, it was like this. Last December, a year to the day since they had got engaged, they were on their honeymoon. There had been a tingling in his fingers for a few weeks but now it had gotten worse and was all up his left side, to the point that when they went out for dinner that night, he couldn’t use his knife and fork.
“I thought it was a pinched nerve that would relieve itself after a while. But it came to a head when Caoimhe had to cut my steak for me in Argentina. I couldn’t use a knife and fork, I couldn’t tie my shoelace.
“I was very much sticking the hand in the pocket because I couldn’t use it. Something like counting out money, it was like I had a baby hand. It couldn’t work. It didn’t know how to do the things I needed it to do.”
Helped by the owner of the hotel they were staying in, they managed to get a scan done at a local hospital and sent it back to Ireland, where Meath physio Paul Conneely and team doctor John Holian looked through it. When his phone rang at four o’clock in the morning with Conneely’s name flashing on it, he knew it was serious.
“It’s a big time difference. He wasn’t calling me for the shits and giggles. He just said, ‘Look, there’s some indications on the scan. You need to come home, you need to get a flight’. The scan was showing up white spots on my spinal cord. That turned out to be a big dirty lesion.
“And I kind of knew enough at the time, having paid enough attention during my neuropsychology classes to know what it may or may not be. I asked and he said, ‘Look, we don’t know for sure, but the indications are that it could be MS’.”
That was early Tuesday morning. By Wednesday night they were back in Dublin. By Thursday morning, he was undergoing every test imaginable in St Vincent’s. The diagnosis came quickly. Relapsing-remitting Multiple Sclerosis. The good kind, if you want to put it that way.
“Essentially MS is an autoimmune disease,” he says. “Your immune system’s gone rogue. It’s thinking there’s something wrong when there’s not. Normally the immune system is supposed to help you but in this case it’s overactive.
“It was attacking my spinal cord and the brain. Specifically I knew it was attacking the protective covering around my spinal cord. The lesion was on the left side of my spine, which explained why the left side of my body was what was affected.”
Gradually, things started to make sense. Not being able to cut a steak in Argentina was the moment when the lava came spilling out of the volcano but now he could see that the magma had been building for months. He had been sleeping poorly for almost a year. His balance hadn’t been quite right. His vision had occasionally been a bit blurry.
O’Sullivan has played for Meath since 2014. According to numbers compiled by the mighty @TheNumbersGael, only three players have racked up more appearances for Meath than him over the past 15 seasons of league and championship – Keogan, Graham Reilly and Bryan Menton. But he had, by his own admission, “played shite” in 2023. Now he had a reason why.
“We played Kildare in the league in March ‘23. There was a ball coming towards me in the first half and I was just like, ‘I have no idea where that ball is or how I’m going to catch it’. Just from my orientation point of view. Next thing, the ball hits me, hits my hands. And I don’t know what happens but it’s gone over the sideline.
“And that happened once or twice more in the game, just fumbling these balls. I was like, ‘What is going on here?’ I got the curly finger – as I should have. I remember after that game I went to Specsavers, just to get my eyes sorted out. I did the test and my eyes were fine – 20/20 vision.”
Knowing now that there was a reason behind it all was one thing. Dealing with it was another. He spent a week in hospital, taking steroids and medicines and resting up. But it wasn’t as if he was discharged and everything was all right. He still couldn’t move his left hand the way he wanted to. That wouldn’t happen for months.
That was December. In January of this year, he and Caoimhe had a new year’s party and invited all the people they hadn’t brought to their very small wedding back the previous June. He has seen pictures of it since and his eye is drawn to his left arm and hand, hanging down at his side. Passengers.
“I’m used to living in such a capable body,” he says. “As an athlete, you’re used to very much being at the top level in terms of what you can do athletically, what you can do with your body, what you can put it through. So it was very strange to be all of a sudden living in this body that didn’t do what I wanted it to.
“It was incredibly infuriating at times. I was driving myself demented, trying to get the motor control back and the sensation back. I was coming up with all sorts of contraptions and techniques.
“I wanted to get the feeling of a ball in my hand again. I’d be driving Caoimhe mental because I was just walking around the apartment with a football in my hand the whole time, just to get used to the feeling of it and to build that up again. You’re essentially retraining the arm how to feel.”
They mapped out a path. Every six months, he will go into hospital for an infusion of an immunosuppressant. He will feel a bit weak for a few days afterwards – in crude terms, they’re scything off a portion of his immune system each time. Otherwise, he has to rest, reduce stress, take Vitamin D and . . . that’s about the height of it. For now, anyway.
“I’m on DMTs – disease modifying therapies. What that does is slow down the progression with the disease. This is lifelong. I have it forever. There’s no cure. But there’s no reason I have it either. It was very helpful to find out both those things. I was very quick to accept I have this.”
As for where football was going to fit into it all, he noticed very early on that nobody said he shouldn’t keep playing. Not the neurologist, not the team doctor, not the physio, not his family, not Caoimhe. So if nobody was going to tell him not to, then he was going to go full-bore to see if he could.
He went back in with Meath in January. His arm was still a long way from being useful in a football setting but that didn’t mean he couldn’t do some running and be involved. He had some frank conversations with Colm O’Rourke and the selectors – he made it clear they weren’t to keep him around as a charity case. But if they could allow him room to try to make it back for the summer, he’d give it everything.
“Football changed for me. It used to be about winning championship games, the team performing well, full-stop. It still remained all of that. But it became something a lot different as well. It became a bit of a container for me in terms of processing and managing my feelings.
“From a lifelong perspective, it was a bigger thing. My approach was, ‘If I can do this, if I can get back playing intercounty level football, I can do anything’. It was a message to myself that MS is not going to impact my life too much. So it became a bit of a beacon or north star. It was like, ‘Okay, if I can get back playing at that high enough level, then whatever other challenges come down the road, I’ll be fine’.”
The going was slow. Loose laces were still a menace. James McEntee is one of his closest friends on the Meath panel and knew the whole story before most of the others. He saw him fiddling with his laces one night and got down and did the necessary without making a fuss. Another act of kindness.
Bit by bit, he got there. He missed the whole of the league but by mid-April, he was in the 26 for the Leinster quarter-final against Dublin. In May and June, he started against Louth, Monaghan and Kerry in the All-Ireland series. Meath lost all four matches and his form was only middling. But so what?
In the space of six months, O’Sullivan went from not being able to turn his key in the door to getting a life-shuddering diagnosis to playing championship football for Meath. He has no plans to finish up either. He’s 30 years old and if he’s not in Robbie Brennan’s Meath panel next spring, it won’t be because he has stepped away to tend to his MS.
“It doesn’t really feature in my day-to-day life. Not really. You get a bit of tingling in it every now and then but it doesn’t really affect me too much. I forget about it, which is good. But MS is a bit invisible in that sense.
“There’s always the question of, ‘Is this disease related?’ with anything that comes up. That will always be there. But you can’t put everything on it. If you trip over something, you can’t be like, ‘yeah, that’s the MS’. Until Caoimhe is cutting my steak again for me, I know I’m fine for now.
“This is an ongoing process. I don’t want the picture to be, ‘Cillian’s living a great life’. There are bad days. There’s days where things are difficult. But the approach is for me to accept those moments of panic and worry and welcome in all emotions that come with it. Because if you push them away, they’re going to come up somewhere else further down the line.
“There’s a great comfort in knowing down the line if something does happen that I’ll be fine. I’ll be able to manage it. Not saying it won’t be too tough. It will be incredibly tough. The last nine months have been incredibly tough. But I have the ability to deal with it.”
