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'Until you've experienced epilepsy yourself, you don't understand what it's like to have no control'

Richael Timothy was forced to retire from Gaelic football at 21 with epilepsy, but has found a new lease of life in para-cycling.

FORMER ROSCOMMON FOOTBALLER Richael Timothy played her last football match in 2016 at just 21 years of age.

5F9ED86729C54B178D994314858839A5 Richael Timothy Source: Richael Timothy

Unlike the recent stories linking GAA players with premature retirement, Timothy’s situation had nothing to do with her body’s reaction to intense training regimes.

She has no underlying heart conditions or persistent injuries holding her back, and as she points out herself, she looks physically fit to play. But when she tries to run or train like every other player, the right side of her body simply won’t co-operate with the movements.

Timothy’s problem however, is a complex matter, and one that is difficult for other people to understand even after she tries to explain it to them.

In December 2015, she suffered the first of many seizures as a result of side effects from getting radio surgery for a rare condition known as HHT (Hereditary hemorrhagic telangiectasia), which impacts the veins and arteries.

The procedure caused some swelling on the brain which still remains there to this day, and left her with an acquired brain injury.

“The way I picked it up,”she explains to The42, “was when I was playing sport at maybe 15. I was getting pains in my chest, I got a CT scan and they ended up finding HHT. It’s rare and people are trying to find out more about it because a lot of people have it.

“They checked my brain and found a malformation, but it was so small that they couldn’t perform normal surgery on it. That’s why they did the non-invasive radio surgery.”

Her first seizure took place after a night out with friends and doctors suspected at the time that it may have been caused by whatever alcohol she had consumed the night before.

Richael Timothy is consoled by her teammate Sorcha Bruen Timothy along with some of her Roscommon teammates following their defeat to Fermanagh in the 2014 TG4 All-Ireland Intermediate semi-final. Source: Tommy Grealy/INPHO

Everyone can experience one seizure in their lifetime and she resumed living normally after. But when the goalkeeper from the St Croans club suffered a second one a short time later, she was diagnosed with epilepsy.

The diagnosis brought many changes to her life and ultimately forced her to quit Gaelic football and soccer.

“They thought it [the first seizure] might be just a one-off,” she explains to The42.

“Other people might get one seizure and that might be it, so they have to leave you until you have a second seizure for it definitely to be epilepsy. But then I had another and that’s when they started me on medication. So they put me on medication and I kept having seizures.

“They just kept changing the medication and upping dosage until they found the one that suits. That went on until May 2016.

“Then I started to get a weakness on my right hand side and that was until June. And then I had another seizure and I was unconscious. It was kind of from the epilepsy but they were saying it was causing me to lose the power in my right hand side.

“I haven’t played since then.”

Epilepsy affects around 37,000 people in Ireland, and there are about 40 different types of the condition.

The typical image associated with epilepsy consists of a person falling to the ground, convulsing and jerking uncontrollably for a few minutes. Strobe lighting or flashing lights are perceived to be the main triggers for the condition.

Timothy’s situation is slightly different. The medication she has been put on means she can feel when a seizure is about to take hold and there are certain triggers that alert her to what’s coming down the tracks within the next few seconds. It’s normally a slight tingle or twinge in her right hand, which then quickly develops into a shake.

“I wouldn’t get it every time I got a tingle and doctors would say, ‘don’t think you’re going to get one when you get a tingle in your hand.’ Because then you nearly have it in your head that you’re going to get it,” she says.

Timothy’s seizures could last from anywhere between 30 seconds to a few minutes, although it’s a year since her last one took place. She also suffered one during a football game, and asked the manager of the team to be substituted after her hand became numb.

There’s been a few seizures while in college in AIT, where she is studying sports science. And returning to those spots on campus often fill her with dread that it might happen again.

Some of the teams Timothy played on were informed about her epilepsy and she told physios about it on match-days, but assured them that it was nothing to worry about as she tried to come to terms with it herself.

For ages, I used to say to people that it doesn’t affect me but realistically it did. I was put on medication for anxiety. I wouldn’t stand in a queue or a train or a seat in a bus because I’d be afraid it would happen when I was there on my own. If I was going anywhere, I’d go with my Mam or my friends. Even going to a shop, I wouldn’t go in on my own.

“I was 21 or 22 and I needed to be with someone. It was because I was afraid I was going to have a seizure. I haven’t had one in a good while and it’s still in your head that you could have one but the way I look at it might happen but it might not.

“With sport, I was very bad at not telling people like I might not tell the team physio. I would just say, ‘I’ve epilepsy but I’ll be grand,’ as opposed to actually explaining to them what it was just so I wouldn’t have to explain to them.

“I hadn’t had any seizures while I was playing football so I thought… well I didn’t understand myself. The college team and the county team knew it and then with the club team, my parents would have been at the match so they knew as well. There was always going to be someone there that knew.

“But other teammates of mine probably didn’t know.”

The medication she’s taking for her epilepsy prevents her from falling unconscious during these episodes, which was the case in the early stages of her condition when others had to step in and fill in the blanks about what had just happened to her.

After the first two seizures, she was naturally frightened about the possibility of these blackout incidents becoming more frequent, but when she started taking medication to keep her awake during the traumatic event, she found that prospect to be just as daunting.

“For the next few seizures, I found them actually worse because they put me up on the medication to stop me going unconscious but that was making me conscious [about it].

It’s probably a bad way to look at it but I would rather have a full seizure and go unconscious because then you can’t remember it than being aware of what’s happening.

“Because then every time you go and do something, it’s in your head that it could happen again and you know what it feels like and you know what’s happening. Whereas if you have a seizure and you’re unconscious and someone tells you you’ve had a seizure, you’re thinking ‘alright.’

It’s nearly worse for the person seeing you than it is for you.”

Gaelic football and soccer were always the main sports for Timothy, and she comes from good GAA stock. Her brother Ross plays with the Roscommon seniors and her father played as well.

Timothy often plays outfield for her club, but when the inter-county management discovered she had goal-keeping experience from playing with boys’ teams in St Croans, they quickly put her between the sticks.

She also played with AIT, where her performances earned her a spot on the 2015 HEC (Higher Education Colleges) All-Star team.

Ross Timothy and Tom Kirwan Ross Timothy in action for the Roscommon minors in the 2011 All-Ireland semi-final against Tipperary. Source: Ryan Byrne/INPHO

Despite the intrusion of her epilepsy, Timothy continued playing football up until May 2016, when she was struck by a particularly bad seizure which lasted some 20 minutes.

It affected her whole body and left her feeling weak for almost two weeks. She noticed her right foot was hitting off the steps whenever she walked up flights of stairs, but she convinced herself that the intense inter-county training was the root cause of the problem.

She tried to plow on and thought she would be well enough to play again, but her body was unwilling to go along with the plan.

“We were doing running out and around the cones and whatever way I was running out, I was coming last whereas I would normally be in the middle, but I couldn’t get my two feet to move around the cone.

“That was the last day I trained and I was thinking like that there was something wrong that I needed to get sorted.

But then I kept playing a bit and the last match I played was on a Sunday and I was playing outfield for my club. I was taking a free and it was no more than about 20 metres out [from goal], not far at all. I kicked it and it didn’t even reach the goal.”

Different misconceptions are associated with epilepsy. RTÉ Gold broadcaster Rick O’Shea, who is is a well known patron for Epilepsy Ireland, has raised awareness about some of them in the past, and did so again on International Epilepsy Day earlier this week, including this article on TheJournal.ie.

Among the many assumptions he disproves is the belief that someone should put a spoon or their fingers in a person’s mouth in the event of a seizure.

Source: RTÉ - IRELAND’S NATIONAL PUBLIC SERVICE MEDIA/YouTube

This is something which Timothy can relate to from a time when she suffered a seizure in college, and some of  the bystanders debated about whether they should intervene to stop her from swallowing her tongue.

The specifics of Timothy’s case with epilepsy are also difficult to articulate when she appears to be in perfect health. This sometimes leads to people misunderstanding the true extent of her physical abilities.

“The times I have experienced it, my hand goes numb or locks. It’s so hard to explain when you think you’re having a seizure.

“You’re trying not to let your hand shake, but you have no control. I could say I think I’m going to have a seizure, but I know it won’t be a full one anymore. It might only be my arm or elbow, it just locks.

Some people might say, ‘put your hand straight’ or ‘stop’ but literally you’ve no control of your body. Before when people said they had epilepsy, I thought it must be weird, but until you’ve experienced it yourself, you don’t understand what it’s like to have no control. Even if you try moving your hands or your foot, you literally can’t.”

Timothy withdrew from the Roscommon panel shortly before they were eliminated from the 2016 championship, which allowed her to start dealing with the transition into retirement.

At the turn of the new season, she was invited back into the panel to provide stats and analysis for the team. It was nice to be involved with the squad again, but it also caused some hurt for her as she was forced to stand on the other side of the sideline and look on.

She hasn’t linked up with the team yet this season, but after taking up a coaching position with the Roscommon Ladies U16′s, she has learned to accept that her future no longer lies in playing football or soccer.

Up until last year I was [hoping I could come back] but now I’ve faced the fact that realistically I won’t have the power in my right side and it’s not really possible for me to play again.

But sport has always been important to her, and that last football match is not the end for Timothy, as she turns her attention to taking up para-cycling. She has joined the Para Irish development squad and is aiming to qualify for the Tokyo 2020 Paralympics.

E11C6CFD81C24570ABC6E33FA644899E (1) Richael Timothy begins a new path in sport with para-cycling. Source: Richael Timothy

She qualifies for the sport on account of her acquired brain injury, and trains with the team once a month. They also travelled to Manchester last November for a track event.

Some of her teammates have acquired a disability from an accident, while others have theirs from birth, and all of their stories have collectively brought a new sense of perspective to Timothy’s life.

But convincing others that she belongs in this sport is still a challenge, especially when she can’t justify it with a physical disability.

“I was always so sporty and I need sport to keep me sane I’d say. For about six or eight months I wasn’t playing any sport I’d say. It’s crazy how much sport [means to you], like I was working in sport, playing sport and doing sport in college and then suddenly I couldn’t do anything.

“I couldn’t run, swimming is not advisable if you have epilepsy and I always cycled when I was younger so I took off the pedals that were on my bike and put on flat ones and started cycling.”

She continues: “People that would look at me wouldn’t consider me to have a disability but because of the brain injury, it actually is a disability. When I tell people I’m doing para-cycling, they’re like ‘how? You’re against a girl who might be an amputee.’

The way I qualify is if you see me walk, I can’t lift my leg properly to walk. I have 100% power output from one leg and say 30% from my right leg. But when I say para sport, the first thing people are going to do is look at you.”

Epilepsy is part of Timothy’s life now, and the fear she once had when anticipating seizures has diminished somewhat.

Every day that passes without enduring another seizure is a victory for her, and she’s thankful to have discovered new ways to keep her involved in sport.

“There’s nothing you can do to change it, but in some ways, I mightn’t think about it for two weeks and I’ll be grand and suddenly I’ll be going to college and I might be going near the room that I might have got a seizure in. And then I’d be thinking about it.

“Some days I might not go to things because I think I might get a seizure even though I haven’t had one in a year. It’s still in the back of my head, you’d think about it at random times but yeah, I have accepted it now.

“Yeah I’m seizure-free for like a year but that doesn’t really mean anything, you still could have a seizure. Obviously the medication is working, but it’s still in your head no matter what.”

You can find out more about epilepsy at Epilepsy Ireland and for more information on HHT, click here.

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