My name is Emily, I’m 22 years old and live in Michigan. My story writes very similar to the other girls who have shared theirs, as I too have Ehlers Danlos Syndrome (EDS) and many of the associated conditions that tend to come with it. During the first 9 years of my life I was a completely healthy, active, and energetic child. Whether it be playing in the waves of Lake MI or at home with my family, I loved to spend time outside and always have been one for adventure. When I turned 9 everything changed; I began to have headaches, neck pain, fatigue, dizziness, and other weird and neurological-in-nature symptoms. I was soon diagnosed with Chiari Malformation, and as my symptoms continued to progress so I was homebound and in excruciating pain, we became more and more desperate for answers. After over a hundred appointments in Michigan with no help, my family and I were led to some wonderful doctors and neurosurgeons on the east coast. It was then found that along with Chiari I also had EDS, a Tethered Spinal Cord, Dysautonomia, Mast Cell Activation Disorder, and eventually Cranio-Cervical/Spinal Instability.
At that point we thought we had a decent idea of what we were facing and what that meant for my life. But the reality was we had no idea how relentless EDS could be. One of the only ways to manage some of these conditions is with surgical correction, so since then I’ve had my brain, spinal cord, heart, and spine operated on numerous times. Each surgery is necessary and helpful, yet the day to day living with EDS remains a fight. Looking back 12 years and 26 surgeries later, it’s so cool to see how in some of the darkest times God still finds ways to put light into my life. One of the biggest ways that He has done that is through people. I have met and come to love the most amazing people through all of this. My closest friends are those who live through the fire that is EDS too. We have lived together in Ronald McDonald Houses and hospitals, had back-to-back surgeries, recovered together, laughed together, prayed together, cried together, and lived what parts of our crazy lives we can together.
When Monica shared her vision of the EDS Retreat, and I thought about the stories of those who will be there, it gave me goosebumps. We are all going through the same things and we have all experienced nearly identical surgeries, treatments, medical trips, pains and frustrations. To be able to come together as the community we are, as friends and not patients for once, and just say we are “taking a break” from our crazy lives and all that goes on in them may be the most healing thing we could experience. Nothing about living with EDS, chronic pain, and a fused spine is easy. All we can do is take it one day at a time and never stop fighting to live the “most well” lives we can. One of my favorite quotes recently is one by Mother Teresa that says, “let God do with me whatever He wants as He wants for as long as He wants, if my darkness is light to some soul.” Looking back over all the situations and people that have been placed in my life over the years, I am thankful for the ways in which darkness has repeatedly made the moments of light even sweeter. The Option EDS Retreat is definitely one of these “moments of light”, and I am so thankful to get to share in it!