Hillwalking with a body hardwired for spasticity and rigidity is tough, but the mental and physical payback make it more than worthwhile, says cerebral palsy sufferer Christy Keeley. This is his story as told to Fiona Tyrrell
GROWING UP on an able-bodied street and going to an able-bodied school with cerebral palsy (CP), one of the biggest frustrations was not being able to participate in competitive sports. That said, my health story is a positive one and physical activity plays a major role in my life.
I was born with a moderate form of cerebral palsy known as diplegia. I live with tight muscles, exaggerated reflexes, rigidity, slowness, awkward movements and poor balance.
In order to move about and stay standing without falling over, my mind must be fully alert. I like to think of the mind as a sentry guarding the castle gates telling my body to "lift the foot, bend the knee, heel down, straighten out. . .". I describe it as "walking with my head".
A lapse in concentration or a tired mind means that I am liable to fall down like Humpty Dumpty. There are times when I think I could do with the help of a crane to pick me up, and a frame to straighten me out.
Exercise has been a part of my life for as long as I can remember. I had a three-wheeled bike as a child. I learned early in life about the need to do exercise and keep the limbs supple.
Now I cycle, swim and hillwalk. My bike is my prized possession. It has helped me overcome many of the restrictions the condition imposes on my body. I have cycled from Sligo to Dublin via Kerry and Wexford, as well as a tour in the south of France.
Hillwalking became a big part of my life as an adult. I have climbed Croagh Patrick, Carrauntuohill, Mount Brandon as well as Snowdon in Wales. Hillwalking, cycling and swimming are tough with a body that is hardwired for spasticity, rigidity, dodgy balance and slowness, but the payback of a positive sense of mental and physical wellbeing makes it more than worthwhile. Going to the pool and doing lanes for half an hour or, if time allows, heading for the hills and stamping over a mountain or two, are great ways of overcoming negative energy.
When people see me walking in the city they wonder how I can hillwalk. I can't explain it, but it is almost as if I switch into a different mode and walk in a different way when I put on my boots and get my Nordic sticks out.
I do my hillwalking with a great group of friends. I've climbed Carrauntuohill three times. I have to warn people not to walk behind me because there is a lot more lose scree behind me than normal.
Yes, I feel tired on the way home, but it is the kind of tiredness that has you glowing inside, glowing with an energy and zest for life that makes the effort so worthwhile. The mental and physical payback makes it worth it.
It takes me a couple of days to recover from a hill walk. I have to be sensible.
Going forward I am somewhat fearful of the frequency of rigor mortis-type attacks that affect my limbs, and bouts of fatigue, but I try not to think about this too often.
The type of wellbeing I experience is available to most people, even people with disabilities. It does take effort and discipline, but I would encourage anyone who can to do it. I think that at times people give up too quickly.
There is so much negative comment about the health system, but I've been blessed with a positive experience.
Two groups keep me going - the physiotherapists in the Central Remedial Centre and the orthotic and prosthetic department in Cappagh Hospital. That said, aside from the CP I'm a regular ordinary healthy guy.
As a kid I wanted to be as good as my peers, to keep up and be part of the gang. My parents sent me to the local national school in Rialto, which was very unusual at the time. It was only in later years that I realise what a major decision that was.
There have been challenges and difficult times, but I have had the good fortune to be able to ride the storm quite well.
Yes, CP is a physical challenge, but for me, particularly as I get older, the mental health aspect is more challenging.
One of the lifelong challenges that I face is overcoming the frustrations I feel at not being able to do all I want. My mind tells me that I should be able to compete with others on an equal footing but my body says differently.
I want to be able to climb the world's highest mountains, sail the world's roughest seas, run fast-paced marathons, swim like Mark Spitz, ride a 1200cc Kawasaki motorbike, join a feisty hillwalkers group and stay the pace, but it is not going to happen.
These lifelong frustrations seem always to be there, and while I do cope reasonably well with them I continue to struggle with my condition, and perhaps I always will.
There is so much focus on physical health and not enough on mental health. My sense is that the mental health issue is one that people tend to stay away from.
It is as if people think you can separate the two, but you can't. They are just different sides of the one coin.
For me, physical activity keeps the demons behind bars. It could be said that it is an addiction, but it is an addiction that harms no one.
Cerebral palsy: the facts
Cerebral palsy is a physical condition which affects the part of the brain that controls movement and posture. People with cerebral palsy have difficulty controlling their muscles and may move jerkily or hold themselves awkwardly.
Cerebral palsy can be caused by a number of things, such as an illness during pregnancy, a lack of oxygen as a result of complications during birth, or as a result of a serious accident or illness after birth.
The degree of severity ranges widely.
Some people are only mildly affected, taking only a little longer than others to sit up and walk. People with a moderate degree of cerebral palsy may require a wheelchair or walking aid for mobility. Some people are affected very severely, and can do very little for themselves physically.
Therapy and special aids can help people with the condition to control the movement of their muscles and maximise their ability to move.
More important than therapy however, according to Enable Ireland, is empowering people with cerebral palsy to lead independent lives.
For more information contact Enable Ireland on 01-8727155 or see www.enableireland.ie