I’d rather be skating than dreaming

Ice skating saved my life. I was introduced to the sport when my mom took me to watch my cousin compete. I was four years old. Soon after I took my first steps on the ice, and I never wanted to take my skates off. I didn’t, until doctors told me I had to.

I was diagnosed with Acute Lymphoblastic Leukemia at eight years old. It attacks quickly with signs of severe fatigue and bruising. I went from ice skating five hours per day, five days per week to barely five minutes, and the slightest fall caused the largest bruise. I don’t know how long it would have taken my parents to recognize the signs had it not been for ice skating. But really, does it matter? I’m alive. What does matter is that ice skating continues to be my savior in a myriad of ways.

My treatment protocol kept me in the hospital and isolated for weeks, and blood transfusions happened regularly. However, my life still revolved around ice skating and cancer was getting in the way of me reaching my dreams. Early in my treatment I suffered brain damage and was in a coma for about one month. Afterwards I needed rehabilitation to learn to walk again. I didn’t care about walking. All I wanted to do was skate.

My team of doctors gave me a firm “no.” I suffered from severe neuropathy so they didn’t believe I would be able to skate anyway. Then they saw the picture I drew for the Courageous Kids calendar, a calendar filled with 12 pictures drawn by kids in prolonged hospital stays.

Elizabeth drawing“I’d rather be skating than dreaming” was the caption. Doctors’ main concern was my extremely low platelet count, despite the constant transfusions, which meant that if I fell and hit my head, an uncontrollable brain bleed would occur. They said, “OK,” but vehemently told me to wear a helmet.

It turned out that I could skate better than I could walk. Physical therapists and doctors were mystified and dumfounded. I didn’t need rehabilitation. They needed to record me skating and try to understand what was happening. I don’t think I was wearing a helmet in the video. I valiantly competed for two years in subzero temperatures without a hat or hair. While most kids would have been petrified to be outside with a baldhead, ice skating didn’t allow cancer break my spirit.

Eventually I learned how to walk again. I completed treatment in two years and two months and lived a relatively normal life for five years. Each day started and ended with skating, with school in between, and in the evening I returned home for homework and dinner and sleep.  I did well in school and increased skating levels fairly regularly. I battled constantly with fatigue and neuropathy and headaches and seizures, along with a host of short and long-term effects of chemotherapy. I was taught how to scan my body regularly for abnormalities. I thought I knew everything that might be thrown my way.

I wasn’t taught to scan my brain for post-traumatic stress disorder. When I was diagnosed with cancer, doctors consoled my parents saying “Don’t worry, you will see your daughter graduate from high school.” What they didn’t mention was that she might be graduating with PTSD. As it turned out, cancer did break my spirit. Suddenly passion burned out of my body. Ice skating no longer filled my heart with joy, and I turned to a psychologist for help.

When I arrived at George Washington University, I stopped going to therapy and dove into my pre-med requirements. Once I moved on from skating, I realized how badly my body hurt from an unfortunate combination of cancer survivor and figure skater aches and pains. My anxiety level was through the roof and in the middle of a sport psychology class, I experienced my first panic attack. Several days later my academic advisor noticed that I couldn’t stop shaking my leg and suggested I take a yoga class for a semester.

I laughed but took her advice because I didn’t see the harm. I began practicing yoga twice a week and immersed myself in classes like personal health and wellness, exercise psychology, medical anthropology, and preventive and integrative medicine. My focus evolved from western medicine to natural and traditional healing approaches. I introduced exercise and nutrition to childhood cancer survivors, yoga to socially disadvantaged populations, and resiliency training to those deployed into demanding environments. I learned about cultures that viewed epilepsy and flashbacks as blessings. I began to see my health conditions in a new light. I realized I had the power to take back control of my life by applying the skills I was teaching to others to myself.

And my life began to change.

I graduated from GW with a BS in Exercise Science and immediately moved to New York to start a Master’s in Public Health program at Columbia University. I started the program only to realize I wasn’t ready to take on the rigor. I needed to understand yoga and exercise more deeply to help myself before I could better learn how to help others.

That year I became a 500 hour registered yoga teacher and personal trainer. To this day, ice skating continues to move my spirit. In yoga, the poses and exercises that I found most transformative were those that mimicked aspects of figure skating.  And, I finally recognized that figure skating was my form of meditation and, for four years, a major piece of self-care was missing. I went on to complete my MPH program at Columbia with a newfound systematic approach to design health interventions for people with chronic disease. All of my worlds coalesced and my path became clear. I was on the hook to teach others how to take control of their bodies to increase their quality of life.

Through countless hours of self-work, I accepted my body and its chronic conditions as limits that I had to work within. I strengthened the weak muscles that caused the aches and pains and moved my body in ways to minimize long-term side effects of chemotherapy without working so hard a seizure would occur. I live a mindful, balanced life, which allows me to live in moderation. I eat and move and breathe and meditate in ways that allow me to thrive.

Don’t get me wrong. There are days I want to rebel against my body, but I’ve learned it’s wasted energy. All of our bodies are beautiful, with or without chronic health conditions, and we have the power to heal ourselves as best we can. Far too often we forget to work on ourselves because we don’t know how. Nobody has ever taken the time to educate us, give us the skills, or provide a safe space for us to practice or learn. That’s what I’m here to do.

Discovering my Spoonie Self

I don’t remember a time in my life when I was healthy. I was born with asthma (I spent a lot of time in oxygen tents), allergies (including anaphylaxis), and eczema (with sandpaper hands that meant no one wanted to hold my hand in gym class).

I thought this was the worst of it, but when I was fourteen years old I was diagnosed with acute lymphoblastic leukemia. I endured two and a half years of chemotherapy treatment (including more lumbar punctures, transfusions, and other various medical testing than I could say) and when that was done I thought that was the worst of it.

I finished high school and went off to university completing 3 degrees in 5 years while working various jobs to pay for tuition. This was my time! I spent a lot of time with friends and really enjoyed these years! The world was mine to conquer!

I began feeling pain in my hands when I was twenty two years old. I knew there was something going on but I figured I was okay and pushed through. I met with my family doctor when I noticed swelling in my hands and was referred to a rheumatologist for testing. I received a diagnosis of seronegative inflammatory arthritis and began treatment at twenty three years old.

After years of bouncing from one medication to another with no ease of pain I was diagnosed with fibromyalgia at twenty five years old.

More pills, more side effects, more fatigue, more symptoms.

I began my dream job working with children with special needs and thought life was going to be okay after all. I still had pain but it was nothing I couldn’t deal with. Life was looking good!
Until my back broke.

Several MRI’s, physiotherapy, and a meeting with a neurosurgeon after mind blowing pain resulted in spine surgery number one. I felt so much better after the first surgery and was ready to get back to my life, yet again.

As I was leaving my physician’s office with my “Back to Work” forms signed I was in a vehicle accident injuring my back yet again! It felt like a nightmare.

What it led me to, however, was the Spoonie Community.

I realized that I had things to say and as I was enlisting my cousin to help me set up a Tumblr blog we came across the term spoonie and immediately The Spoon Theory came rushing back into my mind. I remembered watching it on YouTube years ago and suddenly it meant so much more to me!

I began conversing with spoonies on Tumblr and Instagram and everything made so much more sense. My symptoms weren’t strange anymore. I learned how to advocate for myself and about different treatments that may be beneficial for me to try.

I was excited with this new found community and felt like I belonged somewhere, finally! I wasn’t alone!

I had a second spine surgery that was far less effective, unfortunately, and was then diagnosed with Degenerative Disc Disease. Unlike my other illnesses, this one has no effective treatment.

I also have a few other chronic conditions that impact me a little less severely, but now I have so much more hope and support in dealing with everything, thanks in large part to my support system, on and offline.

I used to feel so isolated in my own little medically impaired bubble, but now I realize that bubble is so much bigger than I could have imagined. I am not in this alone. I have thousands of friends around the world all fighting alongside me every day. I can use my voice to raise awareness for these invisible illnesses, and that’s what I intend to do!

This is my story. But it’s really every spoonie’s story. A story of when things went wrong and when we found our community, because finding this support system is the very best part of being chronically ill.

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