Sometimes I truly impress myself, especially in those moments when I gracefully accomplish something identified as “impossible.” One of the most significant lessons I have learned from living with Ehlers-Danlos Syndrome is that it’s not that I am unable to do certain things; rather, it’s a matter of getting the proper training, equipment and support system to conquer anything I set my mind to. It’s interesting to think about the word impossible – it literally spells out “I’m possible”! This just goes to show how overcoming even the greatest challenges all comes down a matter of perspective.
Weeks after being diagnosed with Ehlers-Danlos Syndrome, I met a fellow EDSer who had just completed a marathon, a feat others said was “impossible” with her condition. Our brief conversation left a profound impact on me; she said something I will never forget: “If we all did the things we were truly capable of, it would literally astound us.”
This interaction made me re-evaluate the things I previously thought to be possible and impossible for myself as an individual living with EDS. I decided I would no longer let the limiting beliefs of physicians hold me back from living a life full of passion and success. I made a conscious decision to see that each day would bring about new adventures. I committed to finding creative ways to get myself over the hurdles of my condition and embrace these adventures to the fullest.
One of the greatest, most challenging adventures I’ve had to embrace was learning to walk again after a failed L5-S1 fusion surgery.
Seven years ago, every intake of oxygen left my lungs aching, and every step was profoundly painful. The reality of that situation was I would often be confined by immobility, stuck in my bed for hours, days, weeks, and sometimes months. I became so physically and emotionally debilitated that on a bad day, gathering the strength just to get out of bed to go to the bathroom was an impressive feat within itself. When the pain became too much to handle, I left college and moved home in search of answers.
My wonderfully supportive parents believed in me, my strength, and my potential – even when I didn’t believe in myself. They found an extraordinary practitioner, Brian Danek, who created a strict nine hour a day, seven days a week, wellness plan. He showed me a variety of constructive techniques to alleviate the pain I was experiencing, offering a solution beyond a medical prescription. With the help of my support system, in spite of the seemingly endless challenges EDS brings, my body’s physical functionality improved slowly.
Over time, I was able to take my first steps without pain. This was something previously believed to be “impossible” in my world. I had resigned to living a life filled with pain, unaware that if I changed my lifestyle, my symptoms would change as well. Each day, I continue to achieve more of these small steps toward wellness. However, getting to this point did not come easily.
Overcoming a daily battle with my home’s staircase was my first goal when I moved home. My bedroom was on the second floor of our home, which made it especially difficult to access given my situation. At that point, taking steps without causing additional agonizing pain was a major accomplishment. Walking up a staircase just to go to bed seemed like an impossible mission at first, as if I were climbing Mount Everest. However, over time it became easier as all things do with the proper training, focus and dedication.
With each passing week, as I followed Brian’s wellness plan, my body became stronger and stronger. He enforced steady increases in my physical activity and encouraged me to track my progress. Unfortunately, regardless of method, the healing process does not happen overnight. Although I was seeing positive results from this rigorous wellness program, by the end of each day, I was both physically and emotionally drained. I often used my very last bits of energy to climb the stairs to get into bed. The rest of the evening would be a blur of agonizing pain and chronic fatigue.
Brian’s only request for the time between when he left at 5 pm and arrived the next morning at 8 am was that I walk for ten minutes. Sometimes, I would be confined to my room, too weak to move my body, yet desperately needing to. My parents, again, found a creative solution by putting a treadmill in my bedroom.
I truly believe this jumpstarted my love affair with walking. I remember taking pictures of the screen each day and texting them to my parents – “I walked for three minutes!”
And “I walked for another four minutes!!!” a few hours after that.
Two hours later: “I walked another three minutes and completed my commitment for today! Ten minutes! Maybe I’ll shoot for eleven minutes tomorrow!!” and so on until I could walk for longer. I had the mindset that it didn’t matter if I wasn’t strong enough to walk for ten minutes at one time; I still needed to do it even if it took me several hours.
I strove to master getting around our home, up and down the stairs – sometimes multiple times in a single day. During this time, I was able to understand that making conscious decisions to care for my body, such as eating healthfully or exercising, would affect my fortitude throughout my lifetime. I began to notice a new strength within my mind and body.
With each passing week, I became physically and emotionally stronger, in spite of the many challenges of living with EDS that appeared just as frequently. I even began to venture outside, something that took a lot of energy just a short time before. I still used a handicapped placard or tried to park in the closest spot to ensure that I could take as few steps as possible, but did so with the intention of accomplishing whatever errand was necessary; walking to and from the car was difficult on its own, never mind walking around and carrying things. But with time, patience, and practice, I was able to conquer these challenges as well.
These victories may seem small, but each one merits just as much celebration as the last. In order to keep myself from becoming discouraged, it became essential to keep in mind that strength is not achieved overnight. I had to be committed to the process to see the benefits.
Even now that I have overcome many of those obstacles and live a life defined by wellness, I continue to track my strengths and weakness. I take pictures of the progress and the challenges so I am able to grow and learn from each. They serve as bookmarks of my progress. I once shied away from the camera, rarely allowing any documented evidence of my challenges before the age of 11. The few snapshots I do have from over the years have become an important part of my EDS journey. In the moments when I’ve come so far that I forget how sick I used to be, one glance at a photo from the past and I’m immediately propelled into action to continue my wellness journey.
To this day, I maintain my love affair with walking. In 2014, I walked 818 miles! After I conquered walking, I wanted to conquer hiking. I love the outdoors and learning to hike seemed like the perfect next step on my journey to wellness. After I conquered hiking, I wanted to conquer climbing. The desert provided an environment where I found inspiration surrounded by the natural world. After spending much time on hikes, I was ready to approach my newest challenge: climbing giant boulders at Joshua Tree National Park.
It was amazing. On the day I finally decided to climb, the sun was particularly harsh, beating down on my forehead with intimidating heat. Giant boulders stood tall around me, forming etched structures that lined themselves clumsily along the edges of Joshua Tree. A rigid rock jutted out from the bolder in front of where I stood. It formed a hold that was shaped perfectly to cradle my climbing shoes.
I stepped up and felt along the rough surface, sliding my fingers across the face of the bolder until my hand found a home in a crevice. I tucked my fingers into the rock’s face and, making sure to balance my weight eased my body off the dirt floor and climbed up the first boulder.
As the distance between my body and the ground grew, I felt the fear building up inside causing a sudden limit to my breathing. I was hanging from the boulder’s edge filled with terror, realizing I had only myself to rely on. Here, I was completely dependent on the strength of my own body to hold me up – the same body that couldn’t even make it up a single stair not so many years ago.
In order to avoid a dangerous fall, I had to trust my strength, my muscles, my limbs, and most importantly, my breath. I could not allow self-doubt to take over. I had come too far. After confronting the presence of my fear, I shifted my mindset and smiled. I embraced the fear by accepting its authenticity and reminded myself that fear and excitement are chemically the same thing in your brain. By making the decision to remain excited and grateful for my body’s ability to continue progressing on this journey, I was able to push myself up to exactly where it needed to be. I trusted my intuition, stayed focused, kept breathing, and eventually reached the top of the first massive boulder.
As I stood there, filled with amazement and pride, I soaked in the grandeur of my natural surroundings. I went on to climb the next one, and each time I reached the top of a new rock, I saw another that could be climbed. In succession, I climbed higher and higher on these massive boulders, culminating at the top where I realized that nothing was impossible any more – even when living with Ehlers-Danlos Syndrome.