“I am thrilled that we are making such great progress with adult care for those with Spina Bifida and will look forward to having a voice in creating new resources for future generations.”

 

 

Q: What is your name?

A: Sarah Haywood

Q: How old are you?

A: 30 years old

Q:What type of SB do you have?

A: L4/L5 Myelomeningocele

Q: How can we continue to follow your story?

A: on FB Sarah Haywood or Instagram @sarahdhaywood

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Like many Spina Bifida stories, my diagnosis was a complete surprise to my parents. Born in rural Maine in 1989, there were few resources and we immediately had to adjust to life between Vassalboro, Maine and Boston Children’s Hospital. My parents were quick to become experts in Spina Bifida, various medical terminology, and exactly how many cups of coffee it took to get from our home to Boston before sunrise. When I was very little, my parents would wake me up in the night and do what they would call “bundle the babe,” which meant wrapping me up like a burrito in blankets and buckling me into the backseat for the long drive. We almost always stopped at the same places on the ride down, and depending on how the appointment or surgery went, we’d try to schedule in a fun stop on the way home.

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I developed quite an infamous reputation at Children’s Hospital, mainly because I was so incredibly stubborn and wanted to do my best to live as “normal” of a life as I could. One particular experience involves me staying up all night, cutting a cast off my leg with a pair of scissors and a dull steak knife. It was safe to say my parents were not pleased the next morning when we had to make the quick 4-hour drive back south to replace it. At age 14 I was determined to walk without braces, and was lucky enough to have several surgeries that enabled me to do so. My teenage years were filled with makeup homework, bone infections, stomach surgeries and a lot of frustration. Despite missing half of high school, I worked hard and managed to graduate on time with my peers, scrambling together an A average that I was incredibly proud of. I was desperate to still live a “normal” life, and tried to hide my scars as much as I could.

After high school, the real world was a punch to the face. I was still struggling with osteomyelitis, and couldn’t quite gain control of what was happening to my body. I ended up with several partial toe amputations and plastic surgeries to heal chronic wounds on my feet. All my friends had gone off to college and I was at home trying to figure out what medical care meant past age 18. This was when I finally began to accept that this whole “spina bifida” thing was a part of me but that I was strong enough to fight back. I started taking better care of my body – I checked my feet regularly, I took probiotics to fight my stomach problems, I became more aware of new research being done. When I was 19, I moved 6,000 miles away from home to Long Beach, California and figured out how to get insurance and doctors. I hiked, biked, road-tripped, rock-climbed, swam and went to college. When I moved back to Maine I began volunteering with my local SBA organization and ended up speaking at several conferences in Massachusetts, and one in Utah that I was fortunate enough to be able to travel to.

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I am now 30 years old and have found myself working at a job I love in the craft beer world. I am in a loving relationship with a man who has been incredibly supportive (he witnessed a small ER visit involving 3 MRIs and a spinal tap when we first started dating, so he passed the test very quickly!) and I am serving on a couple of boards with the National Spina Bifida Association. In the last two years I have visited Canada, Europe and Africa, and have done several solo road trips within the United States. I graduated college with Bachelor of Science in Community Recreation and interned at a summer camp in Hawaii. I spent my entire childhood being told by doctors that I would never walk on my own, or be independent, or graduate college. I am extremely proud to tell everyone that I have Spina Bifida now, and hope to make more connections with others who have shared the same struggles. I am thrilled that we are making such great progress with adult care for those with Spina Bifida and will look forward to having a voice in creating new resources for future generations.

I was thrilled to see another woman (almost the same age as myself) with Spina Bifida, sharing her story!  Sarah has made it so far and crushed all the odds.  The work she has done to help raise awareness is incredible!  What an awesome story!