.Samantha de Leve
I have Ehlers-Danlos Syndrome, a rare hypermobility disorder that causes me to be so flexible that my joints dislocate right out of their sockets.
When I was young my flexibility was useful for gymnastics and dance which I practiced religiously until I was 17 and started experiencing the injuries and chronic pain that comes from “too much of a good thing.” I’ve been in a wheelchair for 3 years now due to repeated hip dislocations.
Just 4 years ago, I would have told you my body was no good and brought me nothing but pain. I felt weak and hopeless and poured endless hours into physical therapy to try to walk only to repeatedly injure myself. I realized that I was trying too hard to fit into others’ image of me, and that walking was more about meeting others’ expectations than doing what was right for me. I obtained a wheelchair and it was off to the races.
Once I started using a wheelchair, all that energy that used to go into walking was now used for living my life. I started swimming and found that I was not weak but more powerful than I’d ever imagined.
I qualified for US Paralympic Nationals, represented my country at the Maccabiah (Jewish Olympics) in 2013 earning 3 medals. In just a year my self- image and how I relate to my body had completely transformed.
I give back by helping newly-diagnosed people with Ehlers-Danlos Syndrome. Because it’s such a rare and poorly-understood disorder,“bendies” as we’re called, know very little about how the disorder works, secondary problems it creates and how to live with this untreatable disorder.
I’m 25-years-old, a research assistant at USC, an adaptive dancer and athlete.
I want people to see the beauty and power that comes from being true to yourself, that what people see as a symbol of weakness can be a tool of liberation and strength and that no one is ever, ever hopeless.
Photographed by Mallory Morrison
I have Ehlers-Danlos Syndrome, a rare hypermobility disorder that causes me to be so flexible that my joints dislocate right out of their sockets.
When I was young my flexibility was useful for gymnastics and dance which I practiced religiously until I was 17 and started experiencing the injuries and chronic pain that comes from “too much of a good thing.” I’ve been in a wheelchair for 3 years now due to repeated hip dislocations.
Just 4 years ago, I would have told you my body was no good and brought me nothing but pain. I felt weak and hopeless and poured endless hours into physical therapy to try to walk only to repeatedly injure myself. I realized that I was trying too hard to fit into others’ image of me, and that walking was more about meeting others’ expectations than doing what was right for me. I obtained a wheelchair and it was off to the races.
Once I started using a wheelchair, all that energy that used to go into walking was now used for living my life. I started swimming and found that I was not weak but more powerful than I’d ever imagined.
I qualified for US Paralympic Nationals, represented my country at the Maccabiah (Jewish Olympics) in 2013 earning 3 medals. In just a year my self- image and how I relate to my body had completely transformed.
I give back by helping newly-diagnosed people with Ehlers-Danlos Syndrome. Because it’s such a rare and poorly-understood disorder,“bendies” as we’re called, know very little about how the disorder works, secondary problems it creates and how to live with this untreatable disorder.
I’m 25-years-old, a research assistant at USC, an adaptive dancer and athlete.
I want people to see the beauty and power that comes from being true to yourself, that what people see as a symbol of weakness can be a tool of liberation and strength and that no one is ever, ever hopeless.
Photographed by Mallory Morrison
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