The Fragile Zebra

“When you hear hoofbeats, think of horses not zebras” – Dr. Theodore Woodward

Well guess what- some of us are zebras. So, I have a rare genetic disease. Well, it’s actually not so rare but it is under-diagnosed: Ehler’s Danlos Syndrome (EDS). When I was little I got sick a lot but we always chalked it up to exposure… Saying I basically had bad luck and caught everything, from everyone. I lived an idyllic life (not really but all of that is for another day) pretty much through my high school years. When it was finally time to head to college I felt as if my life was finally beginning. I attended George Mason University, which was wonderful, completely exceeding my expectations. Then, my first semester I started having pain. All of a sudden I’m not just walking a few hallways to get from class to class; now I’m crossing one of the largest campuses in Virginia. My body aching was a constant, versus my body adjusting to the walking as one would expect. One day, I remember so vividly speaking on the phone with my Aunt Norma. I was walking to my late class, it was a Thursday, it was warm outside. She called to ask how I was and I began to explain the aching and my nearly constant illness (I even pulled a stint in the hospital for a week with severe pneumonia). The thing about Norma, she was very sickly. As I broke down my own issues, she didn’t miss a beat as she chimed in with a confident diagnosis: EDS. With it being a genetic disease she herself suffered from it. Her children struggled with it. Her grandchildren were now having severe complications with it at a heart-breakingly young age. It was obvious to me that her assessment was correct but I still tucked this notion far back in my mind. All I wanted to do was finish school, slowly limping or not. By the time I packed up from my years at GMU I could barely help to load the car. I retreated back home to Midlothian and started focusing on a much slower routine. Although, apparently putting your feet up and eating ice cream is not a proper treatment plan for a genetic disease, especially a degenerative one like EDS. Within months of my return I ended up under the knife for knee surgery. I still avoided a geneticist, or bringing it up to any doctor who may have the audacity to out my obvious secret condition. My knee needed a repair from many years of youth sports- that was my story and I was sticking to it. As the months began to pass, I slowly felt established and confident in the working world at an acceptable pace. But still, Norma wouldn’t get off my back about getting properly examined for EDS. What was now many years after her initial revelation, I caved and eventually saw a geneticist in 2011, about a year and a half after college. After an awkward pain-stakingly long series of tests in office, I heard the words that I always knew were true. I wasn’t even borderline or mild or questionably suffering from EDS… I aced the test. They gave me an obligatory stack of information pamphlets, contact information for a support group, and a note to show all of my other doctors of this new defining diagnosis. There was a laundry list of new things I now needed to worry about, doctors I needed to see. It seemed like every organ and system inside of me was suddenly at risk of turning against my body. I chose to continue my comfortable pattern of functioning carefully and slowly categorically ignoring any medical advice I was given. The pain during these years was unbearable. I was promoted at work but this meant moving out of my cushy office and beginning patient care at a neck-breaking pace. Suddenly I could be dashing around on my feet for 12 hours a day when before I was, conservatively, spending a combined 12 minutes of walking a day. But I loved my job. I love helping people. Seeing those patients and making a difference in their lives was something worth living for. Almost immediately, however, it became obvious that my transition to an overly active position was going to be detrimental, and something I would likely regret. I used to go home in tears because of the pain. I was barely sleeping. Many days I would be genuinely shocked that I was even still standing and going. Despite the fact that I was, for all intensive purposes, slowly killing myself- I had never been so happy. I worked for a man, Dr. Walker, who made me feel important and engaged every day. I had a clinic partner, Melissa, who instantly became my best friend and side kick.

Photos: (Top) Me and my co-worker Ginny, (Bottom) Dr. Walker posing with a plastic dummy hand, like one does

A few months in to this position my pain had gotten so bad I was wearing a 100/mcg fentanyl patch and taking 10mg oxycodone several times a day for break thru pain. (In case you aren’t familiar with those drugs or dosages, I was on enough to numb a 400 pound man after major surgery.) I was never one that liked the pain meds, they were just a means to some relief. It took me stepping back to realize: you need a dangerous amount of pain medication to function, your body is still broken down by time you get home everyday, and this pace has gotten so bad that I have neglected friends and family because I am constantly trying to rest and recover before I start the weekly cycle again. I finally submitted to my already obvious fate when my geneticist told me that I would be confined to a wheelchair by time I was in my 30’s if I kept putting my body through so much. Nervously, I informed my office of my condition and worked out a day at which time I would retire. (I spent longer in college getting an education than I did getting to apply the efforts to a career.) They had plenty of time to hire a replacement for me to train. If I stuck it out this long what would a couple more months matter at this point? I started having terrible pain in my left hip that not even my drugs could subdue. I worked in orthopedics (a deliberate choice) so I eventually walked down the hall to our hip specialist. I got an MRI and went back to work not once thinking of the consequences or outcome. At this point I basically used my lunch breaks to jump from doctor to doctor on a regular basis, receiving treatment for my knee, both shoulders, wrist, and back. The next day was as ordinary as any. I was darting around seeing patients when I was urgently interrupted to meet my hip doctor at a computer on the next hall. I honestly don’t remember everything he said to me. He was very thorough showing me my hip MRI, taking time to explain each image. But the only two things that I absorbed were “you have a stress fracture in your hip” and “you have to get off of your feet immediately and cannot put weight on it again or you may trigger a clean break, which means hip surgery”. How long would I be confined to this wheelchair? How did this even HAPPEN!? I didn’t know either answer. With tears in my eyes and my heart beating out of my chest I went to break the news to Dr. Walker. I couldn’t even finish seeing patients for the day. My office manager quickly closed in on me with a wheelchair and told me that I was not to get up. A co-worker came to me with a box, filled with my personal affects. Within minutes of this news I was being wheeled to my car, my things were placed in the back seat, and I was forced to say goodbye to everything I had worked for. With my retirement already scheduled for a few weeks after this, I knew the moment that my career came to an end would be a crushing blow. But there’s no way to explain the feeling of being forced out in the blink of an eye. To have no control and watch it all go up in smoke so quickly. My mind was racing and my heart was devastated. I arrived home feeling more lost than I ever had before. I was confined to my wheelchair without any obvious purpose to my life. I went from living a life of chaos constantly in a mosh pit of people and responsibilities, to sitting in complete silence, indefinitely. Now what?

My nephew taking my new wheels for a test spin.

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