For all of the bad things that happened during the COVID pandemic, the one good thing that happened for me was reconnecting with old friends over Zoom. Five years ago, when we were hunkered down, I looked up friends from my teens and twenties and caught up online.
Some of us have continued those conversations, maybe once or twice a year. And this past Sunday, a bunch of old friends from my high school days shared our lives for a couple of hours. It was funny and poignant and an important touchstone for all of us, to recall where we came from and where we’ve ended up.
One of my friends, whom I haven’t seen in fifty years, shared that her sister had also had scleroderma. She died several years ago from a brain tumor, but lived with significant skin tightening for about 15 years. A number of years ago, I had also learned that the older sister of another classmate had died from very aggressive scleroderma. What are the odds that three women from the same small high school all got this rarest of diseases?
My friend on the call Sunday has wondered if the fact that our school was not far from a nuclear power plant might account for her sister’s illness and other rare autoimmune diseases that run in her family. I have wondered if the two years I spent in graduate school in Pittsburgh, living in a neighborhood on a hillside above the Jones & Laughlin Steel mill, which flushed its stacks every weekend, filling the air with the thick odor of rotten eggs, may have played a role in my disease trajectory.
Researchers still don’t know exactly what causes scleroderma, this formidable autoimmune disease that tricks the body into producing too much collagen that tightens and hardens skin and connective tissue. My rheumatologist at Boston Medical has told me the latest theories point to some kind of virus that triggers the disease process in people with certain genetic predispositions. It is not contagious, and very rare for direct family members to share the disease.
Stress also plays a role in disease onset. Research supports this, although other factors—genetic, hormonal, environmental, and immune system health—are all part of the mix. In my own case, I developed symptoms (puffy fingers, migrating arthralgia, gut issues, fatigue) in my late twenties after my first marriage ended in divorce. I was anxious and running on adrenaline while coming to terms with it all (not to mention the stress of the marriage itself, which was considerable). All that adrenaline flooded my body with cortisol—which at too high levels can damage the body’s immune system.
So, whatever else I was exposed to and whatever my particular genetic mix, that probably set the stage for my getting scleroderma.
If there’s one thing I’ve learned from all of this, it’s to take stress seriously and to do my best not to let it overwhelm me (not always successfully in our tumultuous times). Meditation helps. So does exercise (Pilates, walks, stretching). So does surrounding myself with nature and art and music. Loving family and friends are essential supports.
Recently I was listening to a meditation app that mentioned a Korean custom to eat only until you’re 80 percent full. The idea is to not overdo, to leave room to appreciate what you’ve enjoyed. It provides a good metaphor for living, as well—to engage fully, but not to the point that you deplete your energy (or run your health into the ground). Keep that 20 percent reserve for resting, recuperating, and recharging.
I’ve been thinking about this a lot, lately. I hope it’s a useful concept for you, as well, Dear Reader, especially right now. Take care.
Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.
Image: engin akyurt
This is, as always, perfect. Thank you.