As we travel through the amazing journey of life, our imagination is often full of dreams we hope to accomplish in our lives. It is such a joy to explore all the opportunities in life we might consider. But, with a snap of a finger, life can throw a monkey wrench into these dreams, altering the plans we once focused on. Unfortunately, some of us experience this when confronted with the reality that our lives will not be taking the path we had hoped to explore, due to a medical condition that directs our lives on a new, unexpected path. This reality is jolting and heartbreaking.
As I entered my forties, I knew that things were not normal. I was experiencing constant pain, brain fog, reactions to medications, and losing weight despite eating good food. Then one morning, I discovered my bladder had dropped. After having corrective surgery, a year later, it happened again. Thanks to that doctor not wanting to operate on me again and sending me to a specialist, she was able to put the piece of the puzzle together and figure out what was going wrong.
So, at the age of 54 years, I finally received the correct diagnosis called Ehlers-Danlos Syndrome, a connective tissue defect. Why did I have to wait this long? I was extremely frustrated and alarmed especially after learning that one is born with the condition. At first, it was a relief to find that I did have a “real diagnosis” which had been judged by many in the medical field to be in my head or just given a misdiagnosis. But as I researched it, I learned it was incurable and would continue to progress since it is a collagen defect. Thus, ligaments and tendons are defective, so the muscles have to take on the function of all three. Due to the stress they take on, the muscles go into spasm, which then shift bones into what is called subluxations or sometimes full dislocations.
When we learned more about this correct diagnosis, it took time for us both to work through the fears that came with facing life with EDS. We had to face the fact that life would never be on the dream path my husband and I had in mind, traveling to Europe and around the country after our four sons left the nest to live their lives. Instead, my husband Stu and I had learned to cope with my twenty-eight corrective surgeries that caused periods of isolation and loneliness. We had to travel to wherever we could find safe medical help, so we faced being in locations where we knew no one as I recuperated from surgeries.
Kindness of strangers helped us deal with the anxiety and loneliness we had to face while being so far away from our home in Rhode Island. My normal life of raising four sons, gardening on our family farm, tending to the animals, teaching, being a master swimmer, and high school swim coach was all slipping away from me. Our life would never be able to return to the path we had planned. Instead, our life became dealing with searching for EDS knowledgeable medical help, traveling, and long weeks of isolation and loneliness as I had to recover over and over, attempting to improve the quality of the life I was now to take on.
Within a short time after my diagnosis, I rapidly continued to lose the ability to do normal activities to stay safe, and today I still face many of these issues. I ended up spending four years in a wheelchair, and today, although now able to walk, I can no longer walk on the sand without my legs subluxing. Driving is a problem since I can’t turn my head normally, due to the neck fusions that saved my life but now restrict me. I can no longer be greeted with loving hugs without the ribs dislocating, and I am unable to eat a variety of nutritious foods due to not being able to metabolize so many items.
To find pain relief that would work was only discovered by doing DNA drug sensitivity testing. The test confirmed the years of reactions to medications, both over the counter and prescribed, were the cause of all my reactions. The results showed only cannabis and ketamine could be metabolized in my body, but both to this day are still considered controversial. I was not able to metabolize any over the counter products nor any opiate derivative medications. For me, they are my lifeline. Stu and I took on this challenge and became advocates for cannabis for medical use when we experienced that I was finally able to sleep and get restorative rest that I had not been able to obtain.
These are just the tip of the iceberg of all we have had to face with my condition. Since so many activities are no longer possible for me, it has left me many times feeling isolated and lonely as I watch others on their adventures. An example is the many times our sons visit us with our grandchildren, and they take a hike in the woods behind our home. There I stand, putting that smile on my face as they leave the yard, and then feel my private tears falling, again reminding me I am now disabled and facing isolation and loneliness. And so that feeling comes when they go sledding, ice skating, or off to swim in the ocean. The only way I have been able to be with them at the beach is to be carried to a chair on the sand and sit until carried back to the car. Sitting there, watching them participate in those activities I also love but can no longer do is very draining emotionally, and again, I sit there with that smile to be a good sport, yet hurting inside with my losses. The same has happened each time I have had to endure my surgeries and have been confined to home, watching the world alive and active around me.
It took time for us both to work through the fears that come with facing life with EDS, and when setbacks happen, we have to build ourselves back up to face them. I am lucky to be married to my husband, Stu, who has supported me through too many dark days. He has continued to show love to the new version of me. Four years ago, he was diagnosed with Parkinson’s and is slowly experiencing losses. It breaks my heart that after all the courage he has shown daily to take on this condition by my side, he now also has to face deterioration with his condition.
I have to fight the sadness my condition has brought to our lives. I know that the nine catatonic episodes he observed before my second neck fusion created trauma in his life that he has never quite gotten over. So, I work daily, not to let my condition define me, and instead work to find joy in each day, knowing this is the only life I get to live. I feel I owe it to us both to try to accept, fight, and not be miserable, for this has altered his life too. I hope that the losses, loneliness, and isolation my condition has brought will help me to support him as he now begins his journey with his new condition.
And, one of the biggest boosts to hold me up is to remember that our children are observing how I handle life, and I want to set an example to them that no matter what life throws at you, you need to pick yourself up and find happiness despite the losses. And no matter what you face in life, you still need to find passion and purpose.
May Life Be Kind to You.
