“The day I was told I couldn’t play football again, my heart kind of sunk. My sport was my whole world. But then it got to the point I couldn’t carry a schoolbag. To go from someone that’s getting trials for Dublin to not being able to carry a schoolbag was heart-breaking.”
Cian Burgess has been on an incredible journey of perseverance through life long pain. He has been living with Ankylosing Spondylitis for over 30 years. It has been a journey of ups and downs. A journey that mirrors his 35 day trek along the Spanish Camino del Norte to raise funds for people like himself living with Ankylosing Spondylitis.
Ankylosing Spondylitis is an inflammatory disease and causes arthritis of the spine. Ankylosing means “fusing together” and Spondylitis means “inflammation of the spine”. It’s called A.S. for short.
We might normally associate arthritis with someone advanced in their years, not with someone young. But the onset of Ankylosing Spondylitis typically occurs in adolescence. Cian is 37 and the onset of A.S. for him started when he was just 12 years old.
“I was playing Gaelic football. I was quite good and I got trials for Dublin. But the week before the trials, I developed this crippling pain in my hip. A doctor told me the pain was all in my head. They didn’t know what was wrong. But it got worse and worse. I couldn’t carry my schoolbag. I couldn’t get down the stairs with it. Then, I couldn’t get out of the car easily. It was tough. It was painful. I used to get out of bed by rolling over and falling out of bed and then push myself off the ground.
I couldn’t bend up out of the bed. It was too painful.”Cian was properly diagnosed with A.S. after being referred to a rheumatologist. For most people, diagnosis is a relief. It’s the end of not knowing what’s wrong with you. But for Cian, his diagnosis crushed him. There is no cure for A.S. Instead, he discovered he had a chronic or life-long illness. The knowledge that he’d never be able to completely cure himself and go back to playing football was crushing. He felt that life had put him on the side-lines. He was in a world of pain, physically and mentally.
“For about 8 years, from 17 to 25, I felt like I was living on my own. I felt fear, felt rejected. I remember when I’d get a flare up that I wouldn’t be able to step over the curb. And no one knew anything about what I had. I felt isolated.”
Cian was taking medication for A.S. at the time. But medication isn’t enough by itself. A.S. patients need complementary treatment that includes physiotherapy and exercise. This muscle development can help during flare ups. So Cian started attending a Monday morning physio class in the Mater Hospital. He heard about the benefits of it through speakers representing the Mater Hospital at a talk hosted by the A.S. Association of Ireland.
The differences he noticed after attending the class were life-changing.
“It wasn’t long before I started to feel the benefits from the physiotherapy from the land-based exercises and especially the exercises in the Hydro Therapy pool. It was the turning point. It was the start of the new me, it was the start of a change. If I left it for a couple of weeks, I’d notice the difference straight away. My back would start to get stiff again.
And there were other people in the group who I could share experiences with, share tips with. We have a community there, under the direction of Breon White the clinical physiotherapist.”
Cian attended the class every Monday morning for years. He still had to go through bad days with A.S. He still had flare ups. But the muscles developed in these classes helped him through those difficult times. The Hydro Therapy pool exercises during the Monday class were especially important to him.
The pool is a heated environment which is ideal for exercises to increase mobility. The effect of the water is to reduce weight on the joints. This means that the Hydro Therapy pool is an invaluable resource for people with A.S, other forms of arthritis, rheumatic conditions or people recovering from serious accidents.
When the pool came under danger of closing down because as an out-of-date facility with no funding for refurbishment, Cian suggested to the group of A.S. patients depending on the pool that they do a Camino fundraiser to stop it from closing down.
“There was one stage that the pool was closed for 3 or 4 months. And then we heard rumours that the pool was going to close for the foreseeable future. For the pool to close would be catastrophic for the A.S. group as a whole.
“We were actually in the pool one day, doing walking exercises in it. We had to punch in the water and lift our legs at the same time. Someone says, ah we do the four mountains. That got a laugh. Someone says, we do Carrauntoohill. I was just back from a 5 day Camino and I said, ah we do the Camino!
I don’t know how it happened but then someone said, Camino del Norte! I didn’t know Camino del Norte (817km in Northern Spain) because I was back from the French route. But I said, we can do the Camino del Norte. I can do it, we can do it!
So we started off joking. But then a joke turned into an idea. And we were serious about the fundraising for the pool, so we got serious about the idea. I spent a year training for it. I was so scared I wasn’t going to be able to finish it! Any chance I got, I was out walking preparing for the Camino.”
Doing the Camino del Norte as a fundraiser for the Mater Hospital Hydro Therapy pool was a second, positive life changing experience for Cian. The walking he did was a supplement to his treatment plan. He walked every day at work. He walked from the Mater Hospital to Maynooth.
He eventually did the full Camino del Norte with the A.S. patients in a group called “Walk for A.S”. They did 817km over 35 days!
“My most memorable moment was standing on top of this mountain in the North of Spain and I remembered this line from a song by The Carpenters, I’m on top of the world looking down at creation. It was magical.
I remember times when the A.S was so bad that putting on my socks was hard. Bending down from the side of my bed in the morning, I just couldn’t do it. And the pain of trying to do it could put me in a bad mood all day. So to have done the full Camino del Norte just feels incredible.”
By completing the Camino del Norte, Cian raised almost €5,000 for the refurbishment of the Mater Hydro Therapy pool. This resource is used by A.S. patients and patients with rheumatic conditions, respiratory problems or those recovering from a serious accident.
In total, the Walk for A.S. group from the Mater’s Monday morning physiotherapy class raised over €13,000 for the Hydro Therapy pool. The Walk for A.S group are people like Cian living with a chronic condition that inhibits mobility and can make any activity painful.
Cian and his wife Sandra are now working to win the Dublin Airport Charity of the Year for the Mater Foundation so that this badly needed resource is refurbished. The Hydro Therapy pool is out of date and needs to be redeveloped. Cian is hoping that he and his wife can convince employees of Dublin Airport to vote for the Mater Foundation to fund this redevelopment along with the money already raised for it. His wife Sandra is and has been an employee of Dublin Airport for 20 years.
Cian himself worked for Dublin Airport for 10 years and still works in a hangar in Dublin Airport today as a graphic designer for International Aerospace Coatings. Along with money raised from his Camino, he hopes to fund the redevelopment of the Hydro Therapy pool for others like him:
“I remember my first class in the pool. It was in 2006 almost 9 years after I was first diagnosed. The other A.S patients gave me a huge welcome. There were people with the disease in advanced stages, with stooped postures. But they were there! You’re weightless in the pool so all of a sudden you can do these exercises. You can work at it without putting pressure on the joints.
The more I did it, the more confident I got. The stronger I got. I’m not going to say the rest is history, it’s an ongoing battle, it’s a daily battle we have with A.S. But the Hydro Therapy pool is the number one tool for me to manage my pain and my physical condition. And my headspace.
I’m in a good place now because of it. But I’m looking back to that 16 year old me and saying, we need to help that sixteen year old. That sixteen year old needs help. I want to reach out to that 16 year old me because I was alone and my world had been taken from me.
I never thought I could be as physically active as I am now. But you can do exercise. They have to know about this, what’s available. They have to know they shouldn’t be on their own and they can do exercise and if you build it up slowly, you can get better. It’s not the end of A.S. But you can get better.
I’ve shown you can get better. And I’m not stopping. I’m talking about doing a marathon next with Walk for A.S. as our next fundraiser. I’ve got a bundle of energy to give to this and I’m not stopping. I want to give people like me hope, let the sixteen year olds know things might just be ok”