Epilepsy is on former Ireland cricketer Emma Beamish’s mind every single day, even though she has been seizure-free since 2018. Not only is there twice-daily medication to take, she also has to know her own limits as she powers through a full-on professional and sporting life.’
When I thoughtlessly remark that her last seizure is quite a long time ago, she immediately responds: “You think it is, but for me it’s yesterday.”
It’s an indication of the mental burden that comes with epilepsy, which is a neurological disorder that affects the brain and is characterised by repeated seizures. These can be described as internal electrical storms, the impact and frequency of which vary widely from person to person.
Even when the condition seems to be well-controlled with medication, thoughts of if/when the next seizure might happen still lurk. Beamish has sporadic tonic-clonic seizures, which involve loss of consciousness and violent muscle contractions. Fatigue and stress are triggers.
“When you’re not strict with your sleep, or your diet, or just looking after yourself in general, you have that fear.”
Having not had a seizure for 10 years before the last one, she might have reasonably hoped there would not be another. “That’s what I think is the really tough part about this disease: you just never know,” she says, sitting in a living area off the kitchen in her south Dublin home. “It’s trying to cope with the not knowing.”
A huge unknown that Beamish, aged 42, has wrestled with over recent years is the potential impact of motherhood on her health. Not just pregnancy but also the inevitable exhaustion of early-years parenting.
The question of whether or not to have children with her husband, Barry Twomey, was intertwined with her epilepsy. They explored the options and possible consequences, but ultimately it was always going to have to be her decision. “Luckily my husband, Barry, is great. No pressure. Either way, we were absolutely on the same page about everything. And, after that, nobody else’s opinion matters.”
As friends all around them started to have children, she knew nobody had the same dilemma as her. “So it was incredibly lonely and really difficult because you don’t know what the right decision is.”
On the one hand she was thinking why should she not be able to have a child, yet on the other hand there were strong arguments against it.
The reality of epilepsy is different for each one of the estimated 45,000 people living in Ireland with this condition. Beamish can only talk about her experience and how she copes.
Sport has always been central to her wellbeing. She has never let epilepsy hold her back, playing cricket for Ireland from 2003-2010, and, before that, for Surrey in the UK for a couple of years. While she talked openly about it, she still hid a lot from coaches in case it affected her selection chances.
Right now, alongside being a teacher of English and religious education in St Joseph of Cluny secondary school in Killiney, Co Dublin, she is doing six sport sessions a week. Half of those are hockey, the other three in the gym, including training for Hyrox, a competitive combination of running and functional workouts. “It makes me happy,” she says. “It gives me purpose and focus.”
She has rediscovered a sense of joy after being through a rough decade.
“I’ve now been training solidly since July, for the first time properly in 10 years, and I feel confident in my body. When you have an illness that you don’t trust your body with, it’s like having Damocles’s sword above your head. You control the controllables and that’s a mental game.”
Since her diagnosis at the age of 14 she has been on sodium valproate, which has proved to be very good for controlling her type of epilepsy. However, she is well aware her medication carries an image of a pregnant woman with a big X through it, due to the high risk of damage to a developing foetus.
This particular drug, brand name Epilim, was licensed for use in Ireland in 1975. In subsequent decades evidence emerged that the drug could have a severe impact on an unborn child. It was not until 2014 that risk-reduction measures were introduced by the European Medicines Agency to warn women of childbearing age about the potential consequences. The last government approved the setting up of an inquiry into the historical licensing and prescribing of sodium valproate but it has not started yet.
When Beamish was in her 30s and contemplating the possibility of having children, she tried a number of other types of epilepsy drugs that are considered safe during pregnancy. None of them suited her. She got “horrific side effects”, such as rash, depression and suicidal thoughts. “You’re just feeling a bit spaced out and you know within yourself it doesn’t suit.” On top of that, “there is a higher potential of having a seizure as well when you’re changing meds”.
So she went back to sodium valproate.
She believed that pregnancy would pose a real risk to her own life. That left the couple with the “minefield of surrogacy” as the only possible route to having a baby together. “I thought, if nothing else, let’s give ourselves a choice, so we will freeze embryos.”
[ Epilepsy: What is it and what does the future hold as treatments improve?Opens in new window ]
But they were only learning as they went along about surrogacy, legislation for which has yet to be enacted here. They were unaware a fertility clinic may not agree to facilitate the sending of embryos abroad and had a bad experience at the first one they attended. A doctor from there contacted her GP to say that although “Emma has a fear of dying”, they believed she could change medications and have a healthy baby with the right care, instead of using a surrogate.
“It made me very angry,” she says, as they did not have neurology expertise. “Somebody who’s not as strong as me could have been put in danger; I wasn’t listened to. I know my body, thank you; I’ve been put through enough experiences, and you did not listen to me.”
After my last seizure, it took three months for my brain to really come back online properly
The couple switched to another clinic, from where the transfer of their embryos for surrogacy abroad would be possible. However, “I can’t see us doing it”, she says. She feels at peace with the decision not to pursue motherhood. “I’ve lived through really horrible, traumatic, depressing times when my epilepsy’s been active, and I’m like, why would I set myself up to do that again? And the answer is: I can’t. I’m smart enough to go: no, I choose me.”
She acknowledges there are women living with epilepsy who have children and do well. Epilepsy Ireland advises any woman considering pregnancy to seek pre-conceptual counselling from their epilepsy doctor or a specialist nurse for guidance tailored to their individual medical history – and to never stop taking their medications under any circumstances without seeking medical advice.
“I work really hard every day to be healthy, to make sure I’m doing the right things, to make good choices, so that I can have a life where I’m happy,” says Beamish. “All that goes out the window if I have a fit, because I’m then back into that dark hole; I’m scared, I’m depressed, I have no confidence. After my last seizure, it took three months for my brain to really come back online properly.”
She also has to cope with automatically losing her driving licence for a year.
That last seizure happened while she was teaching a fourth-year class. “Hilariously we were doing descriptive writing ... it was Halloween time and apparently I let out this banshee scream – but actually it’s air escaping the lungs, that’s what happens just before a seizure.” Pupils initially thought she was just getting into the spirit of the topic.
However, she was told afterwards that one boy, who coincidentally had learned about seizures in first aid training at Scouts the week before, and another girl whose sister has tonic-clonic seizures, realised what was happening and rushed to put her in the recovery position. “Another couple of kids went to get help. They were super.”
Epilepsy awareness: How to help if you witness a seizure
Epilepsy Ireland is using this year’s International Epilepsy Day on February 10th to highlight the importance of people being aware, like those teenagers, about what to do if somebody is having a seizure. The appropriate response is summed up in three words:
Time Record the length of the seizure, because if it lasts more than five minutes an ambulance should be called.
Safe Keep the person safe by cushioning their head with something soft and removing harmful objects such as furniture in their vicinity. But never restrain them or put anything in their mouth.
Stay When the seizure is over, remain with the person, who is likely to be confused and exhausted, until you are sure they have recovered.
“I was very lucky that a kid was taught it in Scouts and made me safe,” says Beamish, who believes greater public understanding about the condition would lead to more compassion and less discrimination for those living with the condition.
That last seizure in 2018 was “really tough”, she says. “That was the first time it took me a long time to come back. I was written off work for three months.”
When she did return, changes to her role without any consultation left her feeling unsupported. She eventually gave in her notice. Years previously, she had lost a marketing job while still on probation, but, coincidentally, or not, two weeks after she had had a seizure.
Beamish is very happy in her current teaching post, feeling valued and supported by management. Life is good, especially since she and her husband have been able to move from an apartment to buying their first house, “for the dog”, she says caressing the head of Indy, a one-year-old golden Labrador, who is nestled up alongside her. “My epilepsy doesn’t hold me back; you just have to mind it.”
She has a clear routine to keep herself well that includes naps, “amazing” acupuncture and a weekly massage because she is doing so much sport.
In making the decision to choose her health over having children, she recognises that you do not always get what you want and that she can live happily with that choice. “I’m really grateful for what I have,” she adds. “I have a wonderful life, and it might not have always been that way.”
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