Listening to her on the radio, Katie Cooke sounds just like your typical Irish teenager. She talks about up-styles and clutch bags and house music and the dreaded leaving cert exams. She also has a passion for running long distance races, and she’s very good at it. The nineteen-year-old can run five kilometres in under seventeen minutes.
What makes Katie stand out from crowd is that she trains and runs competitively while living with severe epilepsy. Katie experiences up to fifteen seizures every day and just a few years ago she was wheelchair bound and struggling with the most basic tasks. Katie is the subject of this week’s Documentary on One ‘No Time To Lose’.
Katie lives with her mum Nicola in a modest first-floor apartment just off the M50 in Cherrywood, South Dublin. Jason Murphy filmed with Katie over the course of the summer of 2016 while producing the documentary.
We get to hear about training sessions at the local park and gym workouts as she prepared to run a half and then full marathon at the end of summer. Katie and Nicola also agreed to record those important teenage rites of passage, when Katie received her leaving cert results and as she prepared to go to her boyfriend’s Debs. Katie also agreed to let us listen as she suffered some of her many seizures. Her aim was to let people get close to epilepsy and how the condition manifests for the forty thousand Irish people (one percent of the population) who suffer at some level with the illness.
In the documentary, Katie’s consultant at Saint James Hospital, Colin Doherty, explains the illness,
“Probably the best analogy to describe it is like the brain being made up of billions of small batteries… what happens is those batteries are firing all the time ,so every time you’re sitting, thinking, walking, exercising, playing sport, your brain, these little batteries, are firing. What happens in epilepsy is a population of those batteries, something in the region of one hundred thousand of those batteries will fire together all at once, causing an uncontrollable change in the person’s behaviour.”
Colin is not only Katie’s neurologist, for the past two years, he also been her running partner. He has seen first-hand what running has done for Katie “ ….it is part of why she recovers so quickly (from seizures) and she has such good stamina to exist with this condition. I think that has all been given by the running ….” However, Colin is also aware of the dangers of running for his patient
"There is a question of over exertion but Katie is a serious runner, she trains properly…she knows exactly what she’s doing, I’m very confident that this is a really positive experience for her ”.
Having a doctor by her side during races not only allows any necessary treatment to take place on the spot, it also allows Katie space to recover herself. Before she started competing with Colin she was regularly taken off course by medics and not allowed to continue running.
Katie is aware of the important part running has played in her rehabilitation.
“About two years ago, I wasn’t functioning. I wasn’t able to get out of bed, I wasn’t able to do anything for myself…running has gotten rid of all of that. If I don’t go to the gym, or run almost every day, I can feel myself slipping back into the tiredness and fogginess my brain had back then”.
While running is not a treatment for Katie’s epilepsy it has helped her to transform the way she lives. The quality of Katie’s life became so poor that a visit to the hospital in 2012 turned into an eight-month stay. She became seriously ill and experienced a number of severe psychiatric episodes connected with her epilepsy.
After leaving the hospital in 2013, Katie was wheelchair bound and it took a great effort for her to walk again, as her mother Nicola explains in the documentary.
“It was hard for both of us …..we did have months of rehabilitation at home, with just the small things, you know, the small things mattered and when she did eventually stand up, it wasn’t one day ‘I’m standing’, it was a slow, slow progression, and with the first steps, she had the biggest smile on her face”.
While medication works well for most people with epilepsy, Katie is one of those who suffers severe side effects. Her Doctors continue to balance a reduction in seizures against the effects of the medications. But Katie found a way to deal with the side effects; by taking to the track.
As well as letting listeners get close on training and race days, Katie agreed to record herself over the course of a typical night. The results were chilling. The bed shakes and the sounds of Katie experiencing seizures in her sleep bring the listener up close to the reality of her condition. These difficult and sometimes disturbing sounds of her epilepsy manifesting on the track, while in hospital, and even as she slept, provided us with a rare insight into this condition. The contrast with other sounds, such as Katie running a successful half marathon demonstrates the power of good radio to show the listener the light and shade of life through sound.
The opening and closing scenes of the documentary were recorded as Katie and Colin took part in the SSE Airtricity Half Marathon in Dublin’s Phoenix park in September 2016 as part of their training for the Dublin city marathon. Both runners were fitted with radio microphone packs , transmitting back to producer Jason Murphy who followed their every step. In spite of having four seizures during the race, Katie and Colin finished in a respectable time of just over two hours. Apart from sore knees and a bit of tiredness, Katie Cooke proved again how she has managed to overcome her condition and live a normal life.
The leaving cert results were difficult for many students in 2016. Maths results were down and like so many others, Katie failed. This prevented her from starting her preferred course, studying sports management in university. Katie’s ambition to develop sports facilities and training programmes for people with disabilities and challenges not catered for at present But the good news is , she recently passed her maths on appeal and can transfer to study for her first choice degree. Colin and Katie also took part in the 2016 Dublin city marathon, running to raise funds for the brain disease centre at Saint James Hospital. Katie Cooke is determined not to let her epilepsy define her.
Written by RTÉ Producer Tim Desmond.
Ps. On the weekend the documentary was broadcast, Katie and Colin ran the 2016 Dublin city marathon , Katie finishing top five in her age group.
Doc on One's No Time To Lose can be listened to here. It was first broadcast October 29th 2016.
