Select a region
Having been diagnosed with epilepsy at 11, before having brain surgery at 14, Bethan Batiste is now planning a fundraising event for Great Ormond Street Hospital and Headway Guernsey.
Only in her 20s now, Bethan has overcome many challenges in her life caused by her epilepsy and brain tumour.
"I officially got diagnosed when I was aged 11 as I was having epileptic seizures, which at the time were more of an absence, what people refer to as like daydreaming. You wouldn't always notice I was having them but in some key instances where I was having them, such as when I was opening some presents on the step for my birthday, I just went blank all of a sudden and my auntie saw me across the room and was like, 'that's not right, you need to go and see a doctor'."
That led to her diagnosis and a realisation that Bethan had been having short absences since early childhood.
"You could just pass it as someone's not listening, someone's having a daydream, not chatting or something like that," explained Bethan.
Pictured: Bethan Batiste's lifelong love of, and talent for, music is apparent.
"I think my parents weren't really sure how to take it in as it was not what you would expect. You go into a meeting and come out with this massive title of a condition that can mean so many different things.
"...typically when people think about it, they think of people dropping to the floor having a seizure, but it's not always that, for example the seizures we were talking about before and I had some typical seizures, but I also most often would have like a few different types of them.
"The seizures would continue and I went through a process of trying different medications and that is quite a long process. And I got to the stage where I was missing quite a lot of school and I lost my independence, I was unable to do things like swimming and cycling. I couldn't really do too many activities and I had to be with someone at all times because they weren't sure if I was going to have one or not, so it impacted me quite a bit."
Pictured: Bethan's parents took her and her siblings on a family holiday to the UK before her surgery in London.
"I didn't feel like a teenager. I felt like someone that was always being watched. But the one thing I did continue with was my music."
Bethan had started playing recorder as a young child before learning the ocarina, then the clarinet and the saxophone and piano.
She was a student at the School's Music Service alongside her music studies at St Sampson's High School and later the Sixth Form Centre. She now works as a teacher at Thirst Music School part time, alongside her work at the GTA University Centre.
Music was always much more than a hobby for her.
"...it was funny because when I was playing, I would never have a seizure. I'd stop have the seizure and then carry on. It would have been fascinating to have a scan now and see what it would have been like and how it was affected by that."
Pictured: Bethan was a patient at Great Ormond Street Hospital.
Bethan's condition became more serious as she reached a point where she was having seizures almost constantly.
She was referred on to Great Ormond Street Hospital having exhausted all treatments options in Guernsey.
"I think it was the year before and it was hard because I couldn't do anything. I was constantly having seizures.
"I tried to look at TVs and things like that, but that was horrible. I couldn't look at screens or anything."
Pictured: Bethan before and after her surgery.
She explained that after spending long periods of time at the PEH, the team at GOSH found a brain tumour which was the size of an old 50p.
She was put on new medications and had further scans before the decision was made to remove the tumour.
"I'd go there for different appointments and eventually it was taking over my life. I was getting to the stage where nothing also could be done and the pros of the surgery outweighed the risks, because there was quite a few risks with the surgery as well.
"That year there was a possible date quite early on, but my parents, because of the possible risks of the surgery, wanted one last holiday with the me that they knew, which was lovely. We went on a family holiday to England which was really nice and then in the October, I had the surgery."
Pictured: Bethan had surgery to remove a tumour the size of an old 50p.
With three siblings, relatives and friends stepped in to help so Bethan's parents could be at her bedside, with her mum staying with her and her dad flying to London on the day she had surgery.
"I know it was hard on them. I've had a few conversations (with them) but I also know it's tough for them to talk about as well," she said.
"...a lot of my seizures were triggered by emotions and they could have also been triggered by temperatures and noises and sounds. So there was an endless list, but it was funny how emotions triggered my seizures so if I was upset it was hard, and mentally it was quite a tough thing to go through but I can't imagine what it was like for my parents.
"I know at times they really struggled but they were so supportive."
Pictured: Bethan's scar after her surgery.
On the day of her brain surgery, Bethan had some of her hair shaved off and she prepared by choosing to watch Harry Potter and the Deathly Hallows before thinking that "maybe this isn't the best idea, which is quite funny when I remember that.
"That is probably one of the most significant things I remember from the whole period," she said.
"I know the surgery took like several hours. I have the memory of falling asleep. I don't really remember waking up, but my parents said I woke up quite early, quite well, and I was talking. My mum was allowed in the recovery room and apparently when she saw me, she knew I was going to be ok."
Bethan stayed at GOSH for five days before flying back to Guernsey, where she stayed at the PEH for a few weeks.
She had to ensure she didn't knock her head, and she had to keep her scalp warm so she took to wearing hats.
She had to stay off school for a few months and couldn't play a wind instrument for six months because of the pressure the breathing would put on her head.
During that time Bethan continued having seizures as her body recovered from the major surgery she'd had. It also still wasn't clear whether the epilepsy and the brain tumour were linked.
Pictured: Bethan was able to resume playing wind instruments after being signed off by her doctors.
Bethan was finally signed off by her doctors at 18, but she still has scans every two years to be sure.
Since then she has learned to ride a bike and is now learning to drive a car. She's able to play boardgames and do other things which so many people take for granted.
She has also returned to her musical studies and hobbies in the intervening years since her surgery.
She initially helped out at the School's Music Service when she couldn't play herself, before resuming playing the clarinet, saxophone and piano. More recently she has taken a diploma in music teaching.
Pictured: Great Ormond Street Hospital in London.
"It's got that therapeutical element. At one point, I thought I might want to be a music therapist, but that wasn't quite the path I took.
"I use it in my own way. And I do think it's quite amazing what it can do. It can bring people together, and things like that.
"So I carried on, joining in and then once I could play again, I was able to go back into the music groups I was in, and when I was at St Sampson's I got the music award there and then I was able to do my grade eight clarinet and I also carried it on in sixth form. I did my music A level there and I also got two music awards for that and then I got the St Stephen's Award from the Music Centre as well."
Music was "my place. It was where I knew I was safe," Bethan said. "It was somewhere I could go and just be in the zone, it was my comfort."
Pictured: Bethan Batiste has arranged a fundraising event at St James to support Great Ormond Street Hospital and Headway Guernsey.
With her love of music, Bethan has arranged a concert at St James on Saturday 4 November, with the Space Pirates of Rocquaine and City Limits playing.
There'll also be a raffle, with the bar open and dancing encouraged. Under 14s will have to be with an adult but everyone is welcome to attend, with tickets available through St James' website.
The money raised will go to Great Ormond Street Hospital and Headway Guernsey, which helped her during her long term recovery as she struggled with fatigue and some mental issues related to her illness and surgery.
Pictured: Bethan's event will raise money for Headway Guernsey and Great Ormond Street Hospital.
LAURA MEETS... Soo Welfair: The walking, talking, fount of knowledge
Comments
Comments on this story express the views of the commentator only, not Bailiwick Publishing. We are unable to guarantee the accuracy of any of those comments.