As a kid, Megan Shaw always fell. She bruised easily, seemed accident prone, and often passed out. As a teenager, she found out she had it Ehlers-Danlos Syndrome, a rare genetic disorder that affects connective tissue. But at 23, she’s focused on what she can do, not what she can’t do.
A native of Scotland, she loves to ‘wild’ (in other words, not in the pool) swim with friends and family in nearby lochs (including Loch Ness). In the winter she wears a wetsuit, but in the cold water she doesn’t need to wear braces or tape, which is easy on her joints. Mountain hikes are also part of her everyday life – although her backpack is equipped with a feeding tube. She is also six months away from medical school and is completing a vascular surgery rotation as a junior resident (the equivalent of a US residency medical residency program). She aspires to a career as a pediatrician.
“Pediatrics is all about helping kids live with what they have,” she says. “It’s about getting their symptoms under control enough that they can do the things they want to do.”
This is a philosophy that also drives her own approach to the illness she lives with.
She has never met anyone in person who also has the rare condition – although she had read some online support forums – but recently she got in touch with a teenager in the US who also lives with Ehlers-Danlos. You’re starring in Beyond Xbox: A Player Like Me, the next film in the Xbox Beyond series that began with Beyond Generations.
“It was actually quite easy to talk to him. It was almost like I was talking to myself a few years ago,” says Shaw, who chatted through a headset with Jordan Strong, 15, while the two played the car racing game Forza Horizon 5. Shaw played from home while Strong used one GO Kart (Gamers Outreach Kart) System equipped with an Xbox Series S at a facility where he does physical therapy every two weeks.
The two spent hours getting to know each other while playing the game.
“I’m not much older than him, but I didn’t know if we would have anything in common,” says Shaw. “But it turns out we have quite a lot in common.”
They share the love of music. She plays piano; he sings in choirs. Both have siblings who can do things they wanted to do but couldn’t: baseball for him, scuba diving for her.
There were good-natured ribs, too, as Strong joked about Shaw’s driving skills while they played the game. (In her defense, she notes that they drive across the street from where she lives.) They both spent time finding each other on the Forza map. Their conversation ebbed and flowed naturally, but in between the fun chats, they also broached some serious topics.
“We talked about how sometimes you get medical advice, but at the end of the day you know your own body. You’re the one living with it,” Shaw says. “It’s just nice to talk to someone who understands. I think at the end of the day it doesn’t matter that they are a different age than you or that they live in a different country. My friends or family are really supportive, but it’s pretty hard to understand when you’ve never experienced it.”
Strong, a high school freshman in a small Georgia town, had never spoken to anyone else who had Ehlers-Danlos. Though he and Shaw have different subtypes of the disease, he still found a lot of value in their conversation — and hoped to get back in touch.
“It was really cool to see beyond Ehlers-Danlos that we share common interests and understand each other beyond what you’re going through,” says Strong, who admired Shaw’s active and outgoing life. “It was surprising how she could put the risks aside a bit.”
The film came as the next in Xbox’s experimental storytelling series, which focuses on how gaming can be an important medium for connecting with others, especially during the pandemic. Beyond Generations, which debuted in December 2020, showed how a UK-based grandfather and grandson, separated by lockdowns, kept in touch through their headsets and through games.
