by Fred S.
Ties that bind. A few words with many connotations.
In the EDS universe, it is a way of life, bound by the literal challenges in the physical and emotional realms. It is always in the background, sometimes opaque, but ready to pop up, like a scary jack in the box. Those of us with EDS urgently need at least one support person and I have been extremely fortunate to be married to a wonderfully caring wife, who loves me as I am, and what I will become.
There are also unique and unspoken ties that bind people with EDS in very deep ways. Understanding of the road long traveled, a road that has its times of endless darkness and glimpses of emerging light. Hills to climb, cliffs to scale, and fear that the passage will never end. It can be a very long journey, particularly if undertaken alone. If you are fortunate to find another person traveling that very road, walk with them.
My cousin, Wendy, lived many states apart from us. Her father and my mother were siblings, and they arranged for our families to see each other about once every other year. From childhood into adolescence, I would hop into the family wagon while Dad drove for about fourteen hours.
Wendy was five years younger than me but there was a quality of character about her that I found different and intriguing. Even at a young age, I sensed that she was unusually empathetic, kind, perceptive and fun. I admired those qualities considerably, as that is what I too aspired to become.
Wendy and I seemed normal enough; at such a young age we didn’t mention any joint pain, subluxations, or any of the other symptoms of hEDS.
Once I started college, we essentially lost touch. Our lives diverged as we settled into our careers and our relationships. We saw each other very infrequently, such as family milestone gatherings. As we briefly conversed, we realized that we both experienced unexplained physical ailments.
Wendy, in her late teens, suffered damage to her long thoracic nerve which caused pain and winging of her scapula. She mentioned other symptoms such as joint instability, spasms, and headaches. I seemed to function well enough until just after age 30. My body then seemed very uncooperative and out of my control, like an invisible force pulling me into a deep and dark pit of which I could not climb out. Scapula pain, multiple body sprains and strains, spasms, nerve damage to my long thoracic nerve with winging, and finally debilitating brachial plexus neuromuscular pain and severe weakness.
The dozens of appointments, missed diagnoses, fragile hope, and crystalized despair are the norm for most people with rare diseases, and Wendy and I were no different. We did what we could and made scattered progress through trial and error, perseverance and some progressive physicians. I stopped seeking a diagnosis, as it was futile and immensely frustrating.
The power of and timelessness of the wisdom of the unconscious mind is wondrous. Wendy and I saw each other again at a family wedding around three years ago. Finally, like two pieces placed next to each other in a mosaic, we reconnected and spoke at length.
We discovered similarities in thinking, values, and the invasions of our bodies by unknown forces. It was cathartic and validating.
I had always blamed myself for my relapses. Wendy found someone who understood the meaning of her pain and challenges that just seemed to reoccur like an over-wound clock.
Wendy read about Ehlers-Danlos syndromes and sought out her local clinicians. Learning that it was not a well-understood cluster of disorders, undeterred she arranged to be evaluated at a nationally known medical center. She was diagnosed with hEDS, but was also struck by the overall inconsistent agreement about symptoms and treatment protocols. During this process, we kept in touch, and I tried to be encouraging and reassuring.
Wendy found the Ehlers-Danlos Society website invaluable. She, of course, kept me up to date, and thought it may be the key to my unusual and undiagnosed clusters of chronic pain and body “breakdowns”. She became relentless, armed with the Beighton score, tape measures, and finger angle devices! Wendy’s concern for finding a name and cause of my decades old chronic pain was deeply moving and appreciated. My understanding, empathy encouragement of her journey, with its twists and turns, medical barriers to navigate, and unwavering perseverance, was acutely validating for her.
Wendy moved at the speed of light, arranging for me and my sister to get an official diagnosis by a geneticist and to enroll in a study to indentify the genes predicting the hypermobile subtypes of EDS. Excitedly, our family was mentioned during a presentation at the 2018 EDS Society International Symposium in Ghent.
I could speak into divine infinitude about Wendy’s involvement with EDS awareness and advocacy. We are enduring friends, cousins, collaborators, and vocal supporters of each other. It has helped us heal and revitalize not only our mental and physical constitution, but has fortified the ties that bind us and our families together.