Last night I learned that a fellow EDS advocate and friend recently passed away. Her name was Davina Shober. She was 24 years old.
I did not know Davina well, but as I read through our interactions, I am reminded of her bravery and the grace and optimism she showed during her lifelong struggle to bear the unbearable: a life of endless surgeries, bone grafts, and innumerable other procedures that left her with only one terrible question that is all too familiar to us EDS patients:
“I’m doing all the right things… so why am I not getting better?”
As a public EDS advocate, I receive several emails a week from people who have been thoroughly let down by the medical community and have nowhere else to turn. So they ask me for help and support, which I try to give as much as I can. But not Davina. Despite her unfathomable suffering, Davina’s first message to me was to give me her phone number, along with an offer to help ME if I ever needed someone to talk to. A girl who was suffering a lot more than I was at the time offered ME a shoulder to cry on, even as her own shoulders were literally falling apart. Take a moment to process that, to be humbled and inspired as I am that a girl who had so very little left for herself still found room to give. And give, and give.
Please do not send me your condolences: I barely knew Davina, and as sad as I am about this, I don’t need or deserve condolence. All I ask of you is this:
The next time someone tells you that they are struggling with an illness – listen. Even if they look fine. Even if you’d rather talk about something else. Don’t condescend, don’t ignore, and please: don’t disappear. You may feel certain that if they just got out of the house more, or “stopped dwelling on it,” or tried this great holistic diet, that all their problems would magically disappear. But no matter how certain you are, and no matter how well-intentioned, you have no idea whatsoever what’s going on inside of another person’s body. But that person knows. And if you truly love them, you can start by trusting them.
EDS is a terrible and cruel disease that decomposes you from the inside while you are still alive. It is degenerative and it has no cure or even any proven treatment. The horrors that typically come with old age become known to us in our teens and twenties; we look perfectly normal on the outside, but an MRI or ultrasound will quickly reveal all of the rips and dislocations and fractures and inflammation, with all the relentless and soul-crushing pain that comes with them, often without one single area of the body spared from the damage. It is harder and more heartbreaking than I could ever adequately express, losing pieces of our bodies, losing pieces of ourselves. It is devastating to us, and to everyone around us.
I can only imagine how hard it must be for you, the friends and caretakers, to be there for us when you know in your heart that there is nothing you can do to make it better. So I want to tell you right now that you CAN make it better. You do. Just by being there. Just by reaching out, and making time and space for us in your lives and in your hearts. Just by saying, “I know I can never understand what you’re going through – but I believe you. And I love you. And I’m here.”
We lost a great warrior in Davina. Please help to carry on her legacy, to give to others even when you feel you have nothing left to give. You might change someone’s life; you might even save it.