Symptoms of Ehlers-Danlos Syndrome gradually began to have a more significant impact on my capacity to function normally. The medical community had been unable to provide me with any type of diagnosis which made any sense. I was forty-two at this time when I took this picture on the beach and allowed myself to dream. It may not mean much to you to look at this photo of two dirty old sneakers standing on the sand but behind me was the handicap beach chair that I needed to use to get onto the beach safely. For me, this photo represented my vision that someday I would return to walking without the fibula and tibia and feet slipping out of position. And in that dream, I would walk again on the sand even down to the edge of the water. There, I would feel the power of emotion of accomplishment being back on the beach, a place dear to my heart.
At the age of fifty-four, I finally received the correct diagnosis and I began my personal journey to seek a new way of life. I was determined to not allow my medical condition to deprive me of life with meaningful experiences. The journey began searching on how to improve the quality of life that seemed to be slipping out of reach. Some people, even family members, would question the decisions I made in seeking treatment. When It took twenty-four surgical corrections to improve my life and perhaps even to sustain my life, decisions I chose and do not regret. After four years in a wheelchair, and over nine catatonic episodes, I am not complaining about the surgeries, recoveries, and isolation it brought on. I took risks but the decisions were mine and I chose to live with consequences whatever the outcome. My life has been altered significantly from the symptoms of EDS but altered does not mean diminished. What I see instead today, is a new and improved quality of life I wasn’t sure could ever be for me again.
- Every day, I work on living life with EDS. I am careful to avoid both medications and food not compatible to keep inflammation down that reduces subluxations and dislocations.
- Every day, I exercise to keep my muscles strong to not only take over their job but also that of the ligaments and tendons defected since birth since this is a collagen defect one is born with.
- Almost every day, after years of no relief from pain, I am now better able to stay on top of my pain levels and get better quality of sleep due to a simple teaspoon of cannabis oil I take before bed.
- Every day, I rest and sleep at night with my bi-pap machine to be sure I get the oxygen needed to get through the night
- Every night, my service dog monitors my breathing and alerts me if for some reason my trachea, hyoid bones and/or sternum cut off the breathing.
- Every day, I use the Cusack Protocol of supplements to replenish what is missing in the system from this condition
- Every day, I carefully take medication three times a day to keep my blood pressure elevated enough to live life and stop passing out.
- Every day, I try to use my mind and keep my spirits up and not get stuck on “why me” and instead try to enjoy what I do have.
- Every day, I try to pass information forward that might help others on this difficult journey.
- Every day, I wake up and take a quiet moment to run through my mind all that I am thankful for to attempt to stay as positive as possible.
Every day is work but somehow, I have been rewarded with some positive changes I never expected. That photo at the top has started to come true. Twice this summer, I was able to walk on my own, gingerly, onto the sand and even down to the edge of the water. It is a gift I have always dreamed about for the past tough fourteen years. To transition from a wheelchair, to walking on hard surfaces, beginning to walk up and downstairs again to now adding walking briefly on the sand, is a huge transition that I am so grateful for.
What I have learned from this is that we need to hold on and try to not give up for we don’t know what tomorrow may bring. No one could have convinced me that after fourteen years of surgeries, isolation, loss of friends, judgment by others, even in the medical field, telling me I look fine due to their lack of understanding, that life could improve as it has. I know with two incurable conditions that things can again change, but for now, I will bask in the joy of seeing this old photo and knowing it has happened – I can walk on the sand again!
May life be kind to you,
Ellen Lenox Smith
Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.