This summer I got on an airplane and flew to London all by myself. It’s actually the second transatlantic flight I’ve gone on solo and for someone who has been afraid of flying since 9/11 thats not bad. Well it was stressful for sure, but I’m going to take a moment to appreciate how cool it is that I did it anyway. 🤔😏😉
(Photo credit: Dan Corbett)
I went to London to partake in a documentary from filmmaker Jack Everitt about having Phenylketonuria, my metabolic disorder. He initially reached out to me on Twitter because I was the ‘second most famous’ person with PKU according to the internet. I’m coming for you #1, just kidding whoever you are you rock. Can I interview you? Anyway, Jack wanted to interview me for his documentary and I excitedly said yes! And then I flew across the pond.
Jack was an incredible sweetheart and met me at the airport along with fellow PKU advocate Mark Edwards, who is based in Wales. Thank God because by the time I landed, 12am local time, I was hungry and dehydrated and was incredibly grateful to absorb the friendly advice – get your train ticket here, we’ll take the train here and then a taxi there – while downing a bottled water. Then our train broke down at around 1:30am and we waited for a new train for around 45 minutes or so, but I didn’t care because I had company! Alone, I would’ve been freaked. I also took the opportunity to have a little photoshoot.
While in London I was determined to interview three fellow PKU’ers about their experience with PKU. Lucky for me Jack, Mark, and Sarah all sat and chatted with me for the better part of an hour each and I’ve been releasing those conversations as part of my #PKUChat series on YouTube. Below watch a sneak peek of my interview with Sarah, an American lawyer with PKU, living in London. She’s also a PKU advocate with an Instagram page dedicated to PKU friendly food.
It was a lot of fun to talk with Jack about PKU for his documentary and I can’t wait to see it when it’s finished. We both realized our ultimate goal is for more people to know what PKU is. You know how when someone tells you they have diabetes you don’t feel confused? We’d like for PKU to be similarly understood. It would help us feel more at ease whenever we go out to eat with someone new. While I love educating people about what it means to have Phenylketonuria it’d be such a pleasure to sit down to eat with someone and feel accepted right off the bat no matter what’s on my plate.
(Photo still from documentary, credit Jack Everitt)
Getting over my fear of flying was well worth this exciting and productive trip to London! It was my first time there and I wanted to have a visual record of it so I collaborated with London-based photographer Dan Corbett for a photoshoot all along the South Bank and a little bit of Shoreditch too. I managed to get a bunch of sightseeing in as well hitting up some brilliant Tate Modern exhibits, the Tower Bridge, the National Portrait Gallery, the National Gallery, a couple of West End shows, and lots of walking including a haunted tour of London!
How’s that for facing fear?
(Photo credit: Dan Corbett)