Neil Gilson’s family was reeling. Gilson and his family were left without answers when their young son underwent a sudden change in personality: he had trouble communicating, eating, showed signs of Obsessive Compulsive Disorder, and was struggling to cope with a myriad of physical symptoms, including the loss of his fingernails. The symptoms stumped every doctor but, by chance, Gilson’s wife saw another mother on television describing their child who had similar symptoms. Immediately, the Gilson’s brought their son to see a specialist who diagnosed him with Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection (PANDAS). Much to their relief, the extremely rare condition was treatable.
Gilson’s son started to recover in mere weeks after a simple course of antibiotics but many children are not as lucky. Given the rare nature of PANDAS (and it’s sister condition PANS: Pediatric Acute-onset Neuropsychiatric Syndrome), many doctors are simply unaware of the condition and often misdiagnose. The emotional and physical plight his son and family endured left Gilson wanting to spare other families the same terrifying reality so he turned to what he knew: swimming.
A Purpose to Swim
Gilson recognized the turning point was seeing the other family on the television show. “So, I decided, how can I help? I’m good at swimming,” he says. “Without us seeing that television show we wouldn't have gotten him the help. So, that's why I got into these swimming challenges—to help other people, raise awareness, and some funds for PANS/PANDAS charity.”
No stranger to the water, Gilson, now 37, swam internationally for Great Britain throughout his twenties. When he left racing the 1500 m behind to pursue a family and a different career, he slowly lost touch with the water. But, now with the purpose to raise awareness for PANS/PANDAS, Gilson got back in the water. He started with a 24 hour swim in Scotland. Next, he tackled the Bristol Channel—against the current. Now, Gilson is planning to swim the 88 km across Lake Geneva.
Lake Geneva Crossing
“So Lake Geneva is a step up from what I did,” Gilson says. “I've got a bit of a goal where I want to do the Bristol Channel there and back which is the same length as Lake Geneva.” Since there are no tides on the lake, Gilson views it as the perfect step toward his ultimate goal. “I think it's a good progression as it’s double the distance from what I've done, but I got out of the Bristol Channel swim and thought I actually felt okay. Surprisingly, I think I could have gotten in and gone back.”
Gilson plans to complete the 88 km swim in under 24 hours. In fact, his goal is flirting with the record. “I don't like to talk about the record, but it's there and, okay, it’s achievable. I don't want to put pressure on it so if it happens, it happens,” he says. As it stands, the record is 22 hours and 39 minutes. The pace doesn’t intimidate Gilson but he is cautious of the unknown: “To be honest, this is going to be the longest I’ve ever swam. So that side of it is going to be a bit of ‘let's see what happens when I'm there.’”
Preparing for the Expected
The part Gilson does know about for sure is that he will need to be prepared to swim 88 km. “You can’t just wing it,” he smiles. With his experience as a long distance pool swimmer, he is more than familiar with the training. “It’s just extending that and doing those longer swims. Getting in for three or four hours and just doing the distance,” he explains. Juggling family and work, he structures his training on a weekly basis. “I’d look to do a long distance swim once a week and then do the interval training as I normally would've done for the rest of the week. I also do a lot of land-based work in the gym.” Add in a few 6 hour swims here and there and Gilson is confident about his fitness.
He adds that goggles have also been a part of his preparation. Some ultra swimmers won’t even change their goggles at all during their swim for fear of discomfort but Gilson prefers to have a mirrored lens during the day and a clear lens at night. Gilson always trained and raced in the Speedo Speedsocket during his swimming career so, naturally, he reached for his tried and tested goggles when he started swimming again. However, he came to learn they weren’t available with a clear lens. “Obviously they do the mirrored ones but you cannot get clear ones,” he says vehemently. “On the other swims that I've done through the night, I don't like the feeling of changing goggles. I'm really pleased I managed to find THEMAGIC5…it’s that consistency you get with the same goggles but different lenses and they’re comfortable.”
Mental Toughness
Preparing for the expected is only one part swimming an open water ultra, there is also the unknown. “I’ve never swam that long before, so anything can happen,” he says. But the unknown is exactly the part he loves about open water swimming. "Every swim is different, isn't it? You can’t predict what's gonna happen. At the end of my Bristol channel, I had dolphins swimming around me and it was amazing…You get so many different elements and it makes it exciting and less boring. It does also make it more mentally challenging,” he says.
No matter how prepared and capable a swimmer is, during an ultra it’s a certainty to run into difficult moments. “When it gets hard, a lot of the time in the last swim, I thought about the reason why I was doing it and that sort of pushes you along. It helps as well knowing that your family's gonna be there at the end—my little boy will be there at the end. It all sort of drives and helps you push through.”
Gilson credits his mental toughness to his swimming years. “You have to be prepared to put in the training and the work and, if I hadn't been a swimmer before, training for an ultra event, well, I don't think I would...Swimming gave me the mindset that when things are tough, you can push through. I think that's for general life as well and I think not to be taken for granted.”
He references his son: “We had loads of different advice from doctors and pediatricians. Because it looks very much like autism—we would've accepted that—but we just knew it wasn't. So we just had to keep pushing for answers. We could have just accepted the general concession from the doctors, but it was looking for those other answers and thinking outside the box a bit. We did manage to find the solution and maybe we wouldn't have done if we just accepted it. I don't know where my son would be now if we had.”
A Reason To Keep Going
While Gilson’s purpose is to raise awareness and funds for charity, his message, especially to all those affected by PANDAS/PANS, is one of encouragement. “Obviously everyone feels differently and everyone has different limits, but, I think for me, I always know that you can always get through, I can always push through,” he says, whether that’s in the throes of facing his son’s autoimmune condition or 14 hours into an ultra swim. “A lot of the time it’s your mind saying you need to stop or something is so bad when really it's a protective mechanism. There’s always that little bit further you can push—and I think you take that forward in life as well.”
