Living life at 60%

Posted December 17, 2018

by Courtney O.

My name is Courtney. I am 38 years old and I have hypermobile Ehlers Danlos syndrome (hEDS) as well as Chiari malformation, mast cell activation syndrome (MCAD), dysautonomia, TMJ, and sleep apnea.

From the time I took my first steps until I started school, it was already apparent that I lacked typical coordination and was to be forever labeled a “clumsy kid.” I had more twisted ankles than I can count! In my twenties, horrific pain, fatigue, headaches, and nausea became a way of life for seemingly no reason at all. Things that may put a slight strain on another person or leave them with sore muscles from something like a workout would leave me in agony for days, weeks, months, and sometimes never go away at all. As a person with a passion for helping children, I began my career as a special education teacher for severely and profoundly disabled students; and so my journey began.

My fire has always been teaching profoundly disabled, beautiful little beings. I was a good teacher, but my students made way more of an impact on my life than I did on theirs. Just being around them brought me so much joy. I was definitely in it for the long haul and knew being in a classroom with them is what I would do until I retired. After many unexplained injuries, never-ending pain all over my body, and countless doctors telling me there was nothing wrong, I had a really bad injury at work which I wasn’t recovering from with typical treatments.

My son, Lucky, was born on November 23rd, 2007. My labor had several complications and I had to have an emergency C-section. Following his birth, my uterus wouldn’t contract to its original size on its own and I was bleeding out. Thankfully, I had a quick-thinking doctor who was able to jump into action and save my life. For weeks after Lucky was born, I was having a hard time getting a good breath and was retaining fluid. It was determined I had postpartum cardiomyopathy, which has since resolved. After the initial scares, my health seemed to be back on track and Lucky met all of his early milestones on target. However, he did not walk until he was almost 17 months old. When he did, he always kicked out his left leg In a wide circle. One morning when he was 2, he woke up screaming and wouldn’t put any weight on his left leg. After two separate ER visits in the same day, he was diagnosed with traveling synovitis of the hip. My wife, Laurie, and I later found out this is often a misdiagnosis in patients later diagnosed with hEDS. In addition to inheriting my clumsiness, Lucky struggled with severe sensory aversions. He was diagnosed with sensory processing disorder (SPD) at the age of 5 and began occupational therapy.

Between recognizing both of us were suffering from similar physical symptoms and much coercion from family, friends, and my physical therapist, Laurie and I decided it was time to see a geneticist. We wanted to do everything we could to prevent Lucky from the chronic, debilitating pain I suffer from in my adult life. We were able to get Lucky an appointment quickly, and he was diagnosed with hEDS in Kindergarten. Since then, he has received occupational and physical therapy services as well as accommodations at school. In addition to hEDS and SPD, Lucky has been diagnosed with dysautonomia and MCAS.

Finally, a little over 3 years ago, a geneticist specializing in EDS and one of the most wonderful people on the planet told me none of this was in my head. She validated every pain, frustration, and symptom I had been living with and diagnosed me with hEDS. EDS is a connective tissue disorder with no cure. My body produces faulty connective tissues, which are the “glue” that holds the entire body together. Having EDS leaves the body unstable and stretchy. This includes organs, veins, skin, and in my case especially my joints. I sublux and dislocate things with the slightest movements. This did not bode well doing the work I had loved since high school when I started volunteering at a school for special needs students. It also explained everything about why I was in such pain all the time.

After waiting what seemed like a lifetime, but was, in reality, a year, I was seen by my remarkable neurosurgeon. He informed Laurie and me that my spine and skull were so unstable that they were slipping off of each other and I was able to rotate my neck 40 degrees further than I should. I thought there was no “treatment” available for my hEDS, but there I was faced with a very serious neurosurgery. In addition, it was blatantly apparent I had to permanently give up my job, my students that I love, and the thought of ever being able to go back to something that I cherished. My body couldn’t take the constant transferring and care of such special children. Doing those things for so long accelerated the toll my body had already taken. I have struggled tremendously with the realization that I could no longer teach my students. Teaching them is what I love doing and I never thought of myself ever doing anything else.

At that time, I discovered that hEDS can be a very lonely and isolating disease.

With my diagnosis and a better understanding of what was happening to my body, I had to come to terms with the fact that there were many other things besides my job that I can’t do in order to keep my body safe. The hardest things to swallow were not being able to run and play with my son and giving up more active hobbies that I used to enjoy with him and Laurie. I get to watch them play, but including myself takes planning and adaptations, and sometimes I just have to sit out. Disappointing your little boy and watching him fear he will have the same fate because he also has EDS is crushing. He, too, has to adapt his activities or sit out to prevent injuries to his body. In doing so, we hope he will have a healthier adulthood with less pain and suffering than I do. Not being able to be the wife that the most incredible woman in the world deserves is equally as crushing. Laurie and Lucky are priceless! They love me unconditionally, cheer me on, and support me when I am sad and frustrated. Laurie takes care of me in unimaginable ways and goes above and beyond every single day. I couldn’t be more blessed to call them the absolute loves of my life. I also absolutely could not get up and go every day without them in my corner!

As I write this, I am just shy of three months post neurosurgery, my third in a two year period. These surgeries will prevent a life-threatening situation or paralysis. They will also help ease some of the chronic pain in my neck and head, confusion, and constant dizziness, but will never give me my “normal” back; they will never give me a cure. Chronic pain, exhaustion, frustration, and limitations haunt every second of my day and my overall pain level is 7-10 at any given second. Although, when I’m not wearing any of my braces, no one would ever know if they passed me on the street. I will always have restrictions and will always have to be extremely careful doing simple everyday things. I was born a “go, go, go” and “burn the candle at both ends” kind of girl, so this is a challenge for me every single day. At my last follow up appointment after my most recent surgery, my neurosurgeon told me that whatever I think I can do, I should only do 60%.

Many days are frustrating and hard, but there are also so many beautiful moments in every day. I am looking forward to healing from this surgery and figuring out how to move forward in a world where I can’t be who I want to be. Maybe I get another chance to figure out who I want to be when I grow up!


Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.

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