Q: What is the your name?
What type of Spina Bifida do you have?
A: Myelomeningocele (L4/L5)
Q: How can we continue to follow your story?
A: @Amiejillian on IG
Hi! My name is Amie and I was born in 1989 to my parents, Janet and Al, who were completely surprised by the diagnosis. As my doctors explained it, I was born with “my nerves spilling out like spaghetti” and my doctor’s whisked me away without giving them a chance to hold me for quite a while. After a trip from Malden, MA to Boston Children’s Hospital via ambulance, I had my first surgery (spinal closure) at 11 hours old, resulting in a scar that I “affectionately” call my crater. About two years and two more surgeries later, I was fitted with my first pair of AFOs, leg braces, and took my very first independent steps. Approximately 3 years after that (as a kindergartener), I had my first of 4 bladder-related surgeries. Overall, in my 29 years, I’ve had 9 Spina Bifida-related operations, my tonsils removed, and wisdom teeth extracted. While this number makes me feel like a hospital frequent-flyer, I know that I’m lucky and that others have had FAR more. I was lucky enough to not need a shunt at birth or later in life, and other health issues haven’t crept up yet. It’s an interesting feeling, though, to be so young and feel as though I’ve lived through so much. As individuals with a disability, we learn to adapt and “power through” the tough times with what we’ve been given and we really know no other way. And I’m not sure if I’d change that. (But ask me another day and maybe I’ll have a straight answer for you.)
I was raised to not let Spina Bifida take away from my life. I played town soccer, learned to water ski at 12, swam a lot (and still would if I had the time!), went away to college (Keene State-NH), got my Master’s Degree (Reading Specialty), worked my way to a great job that I love, got married, bought a house, and hope to have a family. I owe all of these things to hard work and determination, but also to the friends and family surrounding me who never treated me as “different.” I’m just Amie…..but I happen to have Spina Bifida. Even just being able to come to that conclusion took hard work. Accepting this side of me takes constant work. I often viewed my life as having two parts: the “normal” (hate that word) part and the Spina Bifida part. Meshing the two together is a goal I feel that I’m finally close to achieving. One way I’m working toward that is becoming more involved with the Spina Bifida community. I’ve had some opportunities to share my story locally and across the country and I’m now going to serve on Advisory Boards for the National Spina Bifida Association (with Kristin!). My hope is to continue this involvement, which includes attending Teal on the Hill in 2019 to advocate for the community in Washington, D.C. Platforms like this one are close to my heart because they allow those affected by SB to come together and connect.
I love that Amie talks about how living with this side of her is constant work. But, she is becoming the perfect advocate for herself and for the Spina Bifida community. It is because of people like Amie that the rest of the world will know what Spina Bifida is really like and she (along with everyone that shares their stories all over the world) will shed light on living with the disability to show people you can have Spina Bifida and be like everyone else!