In 2019, I was diagnosed with a genetic connective tissue disorder called hypermobile Ehlers Danlos Syndrome (EDS).
Imagine being diagnosed with a disorder you've never heard of. Imagine trying to explain it to people. Imagine trying to understand how to get better. I was confused, and quite honestly, terrified.
EDS is something a person is born with. Many people live their entire lives without knowing they have it.
It might be mild, and a person might occasionally roll an ankle or partially dislocate a finger. For some people, it might result in an athletic advantage in sports requiring flexibility (for example, gymnastics or dancing), or the ability to extend limbs beyond a normal range of motion (for example, baseball or swimming).
For me, EDS gave me no advantage whatsoever. I was more like a human deboned chicken. I was uncoordinated, pale, underweight and frequently sick, bedbound and vomiting. In the 1970s, medical awareness of EDS non-existent. So, I just continued plodding through life.
Twenty-five years passed. Unexplainable medical issues emerged. My sinuses were constantly stuffed-up, and my eyes were painfully dry, my skin itched constantly. I could hardly sleep. My ears rang. I developed migraines, vertigo. My feet hurt constantly. I had constant nausea and stomach aches. Before I knew it, I was incapacitated with pain. I could no longer work and my 25 year career in the tech industry ended.
Then the pandemic hit. My condition was hardly the focus of the medical community. I had to fight for every resource.
At the end of 2020, my sister, Heather, who has been with TAM since the 90s asked if I would like to drop-in to swim at TAM. I jumped at the opportunity. I immediately became addicted to the pool and would swim as much as I could. I wasn't able to complete a Masters workout, but Coach Marie was very accommodating and let me swim at my own pace. The pain would go away when I swam but would come back with a vengeance afterwards. I did not understand why.
I then realized that I was hyperextending my joints and stressing my body every time I swam. I wasn't strong enough to swim and I was using the wrong muscles. I could not continue. But I knew I would return to the pool eventually.
I started physical therapy again 2021. The PT assigned to me turned out to be the perfect match. Primarily due to the fact that she was willing to try and fail with me time and time again.
If an exercise did not work for me, we would try something else. She armed me with every tool and exercise she could think of. The electronic muscle stimulation (EMS) electrodes that came with my system were too small to activate my muscles - she gave me larger ones.
She spent hours showing me anatomy images so that I could understand where my muscles were and what they did. She spent 18 months teaching me exercises for literally every muscle in my body. It was an immersive education to help me understand proper body mechanics.
The problem was, I couldn't make the brain to body connection stick. After all, I was born a deboned chicken, my brain could not handle the reboot.
I turned 50 at the end of 2021 and the good news is the laxity in my connective tissue is starting to decrease. This change in my body is giving me an edge over the fight with my brain. Along with medication for muscle spasticity and nerve pain, I'm starting to rebuild.
I've changed my daily routines completely. After all, as the infamously misattributed to Einstein quote says, "The definition of insanity is doing the same thing over and over again and expecting a different result." I've even stopped driving my car.
One might then ask, why is Holly so enthusiastic about swimming? The answer is, I have no existing muscle memory related to swimming. I swam a bit as a child, but I left the pool in my rearview mirror by high school age. Swimming is new.
I am confident that I will be able approach swimming again soon. It will be a slow reentry but my brain is telling me that I can do it. Have to keep on, keeping on, right? Never give up.