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by Alyssa G.
There is a eutopic expectation that most people have regarding their path and future, but life has a tendency to bring in complications that challenge the presumption people form for themselves. Life does not discriminate, it will benefit or diminish whoever it pleases. There is no use in cursing life itself; there is no use in mourning what could have been. You shouldn’t expect life to go as planned, but rather accept what you’ve been given and make the most out of anything and everything you’re capable of.
I try not to talk about this side of myself too terribly much, but it is not easy nor is it encouraging to live with the limitations that accompany my existence. My pain is not one that is easy to distinguish. Analyze my surface and I really do look like a typical teenage girl- I know that. I tend stay quiet about my struggles because I know in every part of me that I am still more than capable to do anything I set my mind to, and that I should always be appreciative of all that I have. Regardless, there are many unexpected hardships I have endured and much difficulty I experience on a day-to-day basis. This is my Ehlers Danlos story.
When I was little girl, I was diagnosed with juvenile scoliosis. I was given a hard, complex back brace that I was to sleep in. I hated the brace, as the restrictiveness and discomfort caused very intense anxiety within my young self. I wore the brace through elementary school and well into my teenage years.
During middle school, I was very involved in my school’s extracurricular activities and volunteer work. I volunteered at a local zoo, as well as the local food bank. I spent three years on the cheer team, one of which I was captain. I loved to swim, and was the best at breaststroke on the swim team. I was vice president of FFA, and an official FCA leader. I was in all Jr. Honors classes. Basically, anything that I could participate in, I did. My seemingly perfect life all changed when I started to experience strange occurrences in my physical health.
A part of my life has always been full of doctor appointments, but there was a specific time that was especially intense. This time of my life, during my middle to high school transition, was saturated with confusion, overflowing with constant testing and diagnosis and being treated like an experiment; at least, that is how it felt in the midst of it. I had always had these unusual manifestations, always had these symptoms, but I had no clue there was a name or reason for any of it. Completely unaware of my unknown conditions, I had no idea there was anything abnormal about my health, apart from my scoliosis. I would sleep 12 hours a day. Everything I ate would make me sick. I was exhausted constantly. My bones started to hurt worse than they ever had before, and my joints would pop and buckle. I would fall, bruise and get hurt daily. It felt like my body was falling apart. When I would stand, I would nearly pass out every time. Other people had to help me walk, like I was an elderly woman. I constantly felt dizzy and not-sober. No doctor could give me a correct diagnosis, as whenever I received one, the next doctor would say it was incorrect and diagnose me with something else. That cycle continued for almost a complete year, until finally I was diagnosed with hypermobile Ehlers Danlos syndrome. This changed my entire life, finally providing an explanation to my strange symptoms as well as my worsening scoliosis. Not shortly after that, I was diagnosed with Postural Orthostatic Tachycardia Syndrome.
These diagnosis were a relief, but also fueled the anxiety that had haunted me since I was kid. It became close to unbearable. I was terrified to be alone, terrified to leave the house without my mother, terrified of any human interaction. I started physical therapy, and I hated it. I could not bring myself to walk across the room to get a cup of water, because I was afraid someone might look at me. It was terrible.
In the summer of 2015, I was told I needed a surgery regarding my scoliosis that would change my entire life, for my entire life. In the 2 months I was given until my big surgery, I poured everything I had into everything I could. I danced for hours and hours every single day. I bent and twirled and tried to cherish every moment I had left of my current body structure. Instead of viewing myself as victimized, I started to genuinely appreciate all that I was still capable of. I danced every single day until the very last night before my surgery. I danced that night until I could not dance anymore. In October of 2015, I underwent spinal fusion surgery, where they implanted 2 metal rods and 14 screws in my back.
This surgery was a tremendous trial for me, both physically and mentally. There was a battle in my mind between how unfairly life has treated me, and how I could make my situation into something spectacular. So I stopped feeling sorry for myself. I started going to physical therapy once again, but this time I would try. I would strive to better myself because I knew there was more to life than being a victim. I became healthy, I joined a theater group and fell even deeper in love with the arts. I poured my heart and soul into the stage; I let it drain me until it hurt. Many nights I would come home with acute and piercing pain in my back, exhausted from the days’ trails. I knew that if I did not live so passionately, though, I would fall back into a spiral of self-pity, anxiety and depression.
There is a critical need for moderation within spirit, I have found. Over this past summer of 2017, I experienced hardware failure. There was a day where I was working, and picked up something that was too heavy for me to lift. I was in a freezer, a very small space, so my options were to bend and set the weight down or spill the contents. I was not physically able to bend, but somehow I did. This was the greatest pain I had experienced since my spinal fusion. I gritted my teeth and told myself to toughen up, because I thought that I was being overdramatic. I finished my shift and went home, where the next morning my spine began to make noise. This was not normal, so my mother took me to the doctor. There, I was informed that two of my screws had broken completely in half and both of my rods had bent. I was given a medical corset to wear and pain medication to get by until I wanted to have surgery.
Over the past five months, I have powered through the pain. I have continued to make the most out of my abilities. Just three weeks ago I had the surgery to remove my broken hardware. I am excited to no longer be known in my school as “the girl with the broken back.” I know that I am resilient, that I am capable of anything I imagine myself to be.
Not one of my medical conditions can keep me from dancing, acting, swimming, hiking and having loads of fun. I still experience all of the symptoms of exhaustion and pain and vast difficulties that come with my illness, and I always will, but they will not stop me from accomplishing anything I set my mind to. I have a huge scar running down the center of my back, but I’ve learned that my scars are beautiful and unique and show the world just how capable I am. I do not focus on my hardships. I believe that anyone, no matter the circumstances, can achieve anything they wish if they are dedicated and ready to work hard enough.
While life is certain to have unpredictable challenges, I really try my hardest not to focus on it and not let it control me. I grew from a timid little girl who went to the doctor (no exaggeration) every single day and was poked and prodded and studied and tested, who was told what I could and could not do… to who I am today. I love who I am. I have cried a lot, I’ve said it’s not fair, I’ve felt sorry for myself. I am in constant pain, life is a battle, nothing is physically very “easy” for me- I have limitations, but I am still unstoppable. I am still happy. I am still shining as brightly as I can. I have been ashamed of my weaknesses, but there is so much more to me than an illness. Life is beautiful and full of love and fun and joy and no doctor or diagnosis can ever take that away. You don’t let them. What I have learned is that you choose for yourself what your life will be, and you persevere no matter what. It’s difficult. It’s painful. The anguish honestly doesn’t get much easier, but you can get stronger. You grow into a person so full of power and fervor, someone you had never imagined you had the capability of becoming. You can do anything with a little determination and modification.
My life has been severely impacted by the twists and turns that accompany existence. I never expected to be 17 and recovering from my second spinal surgery. I never imagined that I would be diagnosed with a chronic illness. We are not promised an easy ride. Life has hit me hard, bruised me to the very core of my being, but it has never knocked me down. I have and will forever continue to keep moving forward, although the future is recognizably uncertain. The only constant promised is change, and the acquired resilience to triumph over life’s harsh unpredictability.
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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