Sharon Ayer TDI’13 chronicles her journey with Ehlers Danlos Syndrome (EDS)
Have you ever looked around and wondered, “How the hell did I end up here??”
I woke up one day about five years ago, flat on my back in bed with the world spinning, wondering how this was my life.
I’ve never followed the conventional path or taken the easy road. I rebelled against my parents’ expectations and went my own way… which didn’t always take me to good places. After a time of crippling anxiety in my early 20’s, becoming a mother, many false starts with college, and the death of my father, I went back to school as an adult and completed my bachelor’s degree. During those five years, I was working, I was parenting, I became a homeowner, I went through a scary divorce, I became a single mother… I persevered.
I didn’t plan to continue on into a Master’s program, but I applied to TDI [The Dartmouth Institute for Health Policy and Clinical Practice] on a whim, never believing that it was a real possibility for me. When I received the acceptance letter, it was a dream come true… I couldn’t say no. It was another pivotal point in my life. I had always dreamed of attending Dartmouth, but I didn’t believe that I was good enough. Walking into class that first day was like a homecoming. It was the first time I felt normal in my skin in a very long time.
Just before starting at Dartmouth, I received a diagnosis that explained a lifetime of strange little things… unexplained bruises everywhere, wounds not healing, stitches not holding, strange pregnancy symptoms, joints shifting or locking, hyper-flexibility, vertigo, and problems with my eyes and teeth. I learned that I have Ehlers Danlos Syndrome (EDS), a rare connective tissue disorder (my body does not produce collagen correctly) that causes a variety of issues and symptoms. Collagen is present in almost every tissue and organ in the body.
I’d never heard of EDS, but it sure did make sense! At first, I felt a great sense of relief. I knew what I had. I knew what was wrong. I didn’t have to change anything in my life. I even found myself identifying with the “Zebra” – a moniker people with EDS have adopted. In hindsight, my life was a miracle and I ignored all of the warning signs. I finished my Master’s program, started working at Geisel, and life was great.
Three years later, in 2016, I was a single mom making plans for life after my son graduated. He was a senior in high school and gained more independence every day. I loved my job. I loved my life. That gorgeous April day I left my office, I had no idea that it would be for the last time. Amidst a perfect storm of events, Ehlers Danlos finally won and took control of my body and my life. Everything stopped – work, driving, friends, volunteering, mothering, showering, exercising, thriving. Life as I knew it was over. While EDS exhibits commonalities across patients, symptoms and comorbidities can affect each of us differently, just like zebra stripes – no two are alike. The most impactful symptoms for me are chronic vertigo, chronic pain, extremely loose joints that flex and shift without warning, an increasing amount of falls, GI tract issues, migraines, autonomic nervous system issues, delicate skin that tears and bruises easily, eye issues, and the ever-present anxiety.
As I lay in bed that day almost six years ago, with the world spinning, I remember thinking that there was no way this was going to be the rest of my life. I thought, “I have too much to do; too much to give; too much to see; too much to be. I really don’t have time for health issues.”
That first year was rough. It took me a long time to come to terms with the fact that life as I once knew it, and planned for, was over. I had a choice to make. Relinquish complete control and become a victim of my body… or fight to do everything I could to regain some quality of life. I’ve always been a fighter… I decided to fight.
Fighting this time was very different. I had to learn a whole new way of living… of being. I had to learn how to take care of myself instead of others; to accept that every moment of every day must revolve around what my body needs. I had to develop solid core routines and learn to:
- stick to a schedule. Even though I’m not able to work, I still set my alarm every day and go to bed around the same time every night… whether or not I actually sleep.
- get out of bed and get dressed every day… even if I’m just changing from pajamas into yoga pants.
- shift my to-do list. I commit to completing at least one task every day, even if that task is only getting out of bed and getting dressed.
- be rigid with my commitment to physical activity. When I don’t move and do my physical therapy, the decline is rapid.
- get outside every day. Even if it’s only to get the mail, fresh air and sunshine are like a magical elixir.
- make time for spirituality. Connection to myself and with the Universe keeps me grounded and focused on continuing to move forward, even if I feel like I’m standing still.
- ask for help and rely on others. When you can’t drive or even get groceries yourself, you really don’t have a choice but to learn this one! I am blessed with an incredible support system.
- find new ways to be of service in the world, which is my passion and purpose. Thank you COVID for moving life online; the world is now far more accessible to me!
- start where I am… and accept that where I am is ok. Some days, it means walking for 30 seconds at a time; other days it means walking 20 minutes at a time. Some days it takes all day to make a cake; other days it means that I can work from start to finish.
- listen to my body… the most difficult work in progress. I spent much of my life overriding my body and ignoring my needs. Reconnecting is really, really hard.
My life is very different today than when I walked into that TDI classroom in 2009 and I’m grateful for every moment. My time at Dartmouth proved to me that I am resilient and brave and that I can take on any challenge, no matter what. I still fight, but now I’m fighting for ME… to stay as strong as I can for as long as possible. To quote Churchill, I will “never, ever ever ever, give up!”