How (and when) were you first diagnosed with Juvenile Myoclonic Epilepsy?
I was diagnosed with JME in my mid-teens. I started having symptoms at 13, so it took up to two years to realize this might be JME.
You’ve said that having epilepsy as a DJ—”battling late nights, early flights, and strobe lights”—will hopefully inspire others on their journey. Can you talk a little more about this?
When you are diagnosed with a condition like epilepsy, you are often filled with fear and anxiety and encouraged to make lifestyle changes. Which can be really tough, especially for teens. While you have to be cautious, I think it’s important not to let your condition define you. I chose to pursue a professional path that wasn’t the most fitting for my health. I just think you’ll be happier and healthier if you go after what you want. Not going after it will ultimately have a more negative impact on you.
Can you describe any moments of humor that have happened along the way?
I’ll go do a sound check for a DJ gig and someone’s read my rider that says “no strobe lights” and there’s always that funny moment, the curiosity around that. It’s probably the worst profession you could choose! So seeing how other people respond… I enjoy that. My sister has a worse form of epilepsy, and it’s been pretty tough for my family, so the way we’ve managed is by using humor. It’s quite English!
What’s the worst medical horror story you can share with us?
The worst incidents for me were my second and third seizures. The second I had in the shower, and I fell and my dad woke up to me bashing my head against the bath. He had to break down the door because I was a teenager and locked it! And then I woke up not knowing what happened. You spend a long time recovering, emotionally and cognitively. The third seizure, I was at the top of the stairs and fell down the stairs during the seizure, and that was probably even more traumatic for those who saw it.
What has surprised you the most about your experience with chronic illness?
The lack of understanding from other people. It’s hard for people to understand your illness if they’ve never seen any of your symptoms. You appear normal but feel unwell. So only when you’re convulsing on the floor do they understand. With epilepsy, you live in fear of your next seizure. A lot of it is anxiety. I also feel very let down by the medical community. It started off with really horrific side effects to my medications, like depression and suicidal thoughts that were not acknowledged. I had doctor after doctor laugh in my face. I didn’t feel I was heard—I felt dismissed.
A few years ago you decided to replace your pharmaceutical anti-seizure medication with medical cannabis. What sort of effects has that had on your health? How are you feeling these days relative to what you’ve been through?
I have not had any seizures, my memory is better, my concentration is better, and I’m sleeping better. My anxiety has also improved. Having a condition like epilepsy affects you so much more than just seizures. Cannabis has also allowed me to come off of medication that was making me feel mentally ill and extremely anxious. When you’ve felt so unwell and you discover a medicine that is more efficacious and has fewer side effects, it’s hard not to dedicate your life to it. There are so many people out there who deserve to at least be presented with the information!
What would you say is the biggest misconception about epilepsy? Is there anything you wish you could make people understand better?
My number one is what to do when someone has a seizure. There are a lot of old wives’ tales around what one should do—holding their tongue, or putting something in their mouth… which is horrifically incorrect! What’s most important is to put them on their side in the recovery position, protect their head, and NOT put anything in their mouth. Also, there are so many different triggers. A specific piece of music, or even a mathematical equation.
Are there times when you yourself have felt stigmatized?
The amount of times my sister has had a seizure in a restaurant and her face just plants into the food, and I don’t think anyone has ever asked if we need help. It’s a fear of the unknown—they don’t know what to do. It all stems from a lack of education. If you look at the history of how epileptics were treated, I think it was not until the 1970s in the UK that you could legally marry an epileptic! People were locked away, they thought it was contagious. There’s also a stigma in the workplace: people don’t want to admit they have epilepsy because they don’t want to lose their job. So I think there are just so many layers of stigma. I know a journalist who writes about mental health and wellness who’s epileptic and won’t speak about it.
How has Sollis been able to support you?
Sollis has been a tremendous support for both my partner and me, especially during the height of Covid when having a number to call 24/7 was priceless. Today, as a person living with epilepsy, Sollis continues to offer peace of mind knowing I have somewhere to turn should a medical issue suddenly arise
What have you learned about yourself—and the human spirit in general?
What I’ve learned is the power of the individual and the power of vulnerability. My life transformed when I stepped into vulnerability. Being authentic, sharing things that are true—that resonates with people. I know speaking out has had an impact on people who live in silence with this condition. Elton John is a prime example of someone who could do so much for the epileptic community and no one knows he has epilepsy! Prince had epilepsy, and only mentioned it once in his whole career.
Any good words to live by?
Never underestimate the power of vulnerability and authenticity. So often people are afraid to share their truths, especially around hardship, but if we can touch the lives of one other person by making them feel seen or less alone, then that is enough. We heal in communities and being vulnerable allows others to do the same, and it is in those moments that we all begin to heal.