As a child, Megan Shaw was always falling in love. She was easily injured, she seemed to be accident prone and passed out a lot. When she was a teenager, she discovered that she had Ehlers-Danlos syndrome, a rare genetic condition that affects connective tissue. But at 23, she focuses on what she can do, not what she can’t.
Originally from Scotland, she loves to swim “wild” (in other words, without a pool) in the nearby lochs (including Loch Ness) with friends and family. In the winter, she wears a wetsuit, but she doesn’t need to wear braces or tape in the cold water, which eases her joints. Mountain walks are also part of her routine, although her backpack comes with a feeding tube. She is also six months out of medical school, doing a vascular surgery rotation as a junior doctor (the equivalent of a medical residency program in the US). She intends to pursue a career as a pediatric doctor.
“Pediatrics is very much about helping children live with what they have,” she says. “It’s about managing their symptoms to the point where they can do the things they want to do.”
This is a philosophy that also drives his own approach to the disease he lives with.
She has never met anyone in person who also has this rare disease, although she has perused some online support forums, but she recently connected with a teenager in the US who also lives with Ehlers-Danlos. They star in “Beyond Xbox: A Player Like Me,” the next movie in the “Beyond” Xbox series, which began with “Beyond Generations.”
“Actually, it was very easy to talk to him. It was almost like I was talking to myself a few years ago,” says Shaw, who chatted with 15-year-old Jordan Strong through a headset as the two played the car racing game Forza Horizon 5. Shaw played from home, while Strong used GO Kart (dissemination kart for players) equipped with an Xbox Series S in a center where he performs 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 a lot in common.”
They share a love for music. She plays the piano; she sings in choirs. They both have brothers who can do things they wanted to do but couldn’t: baseball for him, diving for her.
There were also good-natured banter, as Strong joked about Shaw’s driving skills as they played. (In her defense, he points out that they drive on the other side of the road where she lives.) Both of them also spent time trying to find each other on the Forza map. Their conversation went back and forth naturally, but in between the fun chats, they also talked about 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 who has to live with it,” says Shaw. “It’s nice to talk to someone who understands. I think at the end of the day, it doesn’t matter that they’re a different age than you or that they’re in a different country. My friends or family are very supportive, but it’s quite difficult to understand if you’ve never experienced it.”
Strong, a high school freshman in a small town in Georgia, had never spoken to anyone else who had Ehlers-Danlos. Although he and Shaw have different subtypes of the disease, he found a lot of value in their conversation and looked forward to connecting again.
“It was great to see beyond Ehlers-Danlos, that we share common interests and understand each other, regardless of what you’re going through,” says Strong, who admired Shaw’s active and outgoing life. “That was amazing, how he was able to put the risks aside a little bit.”
The film emerged as the next in Xbox’s series of experiential storytelling focusing on how gaming can be an important means of connecting with others, especially during the pandemic. “Beyond Generations”, which premiered in December 2020, showed how a grandfather and grandson living in the UK and separated by lockdowns kept in touch through their headphones and through games.