Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

Monday Morning

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There are days when I just don’t know what to think anymore. Each day brings so many awful headlines. I feel like I’m trapped in a slow motion train wreck.

Then I just have to stop, take a deep breath, and focus on what’s right in front of me. Because, in truth, what is happening in the moment is the only certainty.

So, here’s what I did Monday morning:

Meditated.

Exercised.

Ate a good breakfast.

Set up some estimates for repairing leaks in our roof.

Mailed my application for vote-by-mail ballot.

Paid my life insurance premium.

Signed up for Postcards to Voters.

Wrote this blog.

Just put one foot in front of the other.

The sun is shining. I heard mourning doves when I woke, my favorite greet-the-day birdsong. It’s another August scorcher, but our A/C is keeping our home comfortable. We’re all still well, as far as we know. For all of that, I am profoundly grateful.

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: “Mourning Dove, Cabin Lake Viewing Blinds, Deschutes National Forest, Near Fort Rock, Oregon” Wikipedia Commons

Time Out for Family

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This past weekend, five months into the pandemic, we finally got to see our daughters in person, together. Family time has always been important to us, but all the more so now.

Our younger daughter came up from Philly, which was good timing, because as of the first of August, Massachusetts is imposing new Covid restrictions for out-of-state visitors. Our older daughter came out from Boston. On Saturday afternoon, we took a lovely walk at Garden in the Woods in Framingham, Mass., and on Sunday, we were all home for an outdoor supper on our deck, meaningful conversations, and a lot of laughs. Both daughters slept over. It’s been a long time.

Every day we share together is a blessing. I hope the same is true for you and yours. Here are some of my favorite photos from our nature walk. . . .

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.

Untressing

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So, I finally took the plunge and got my hair cut. I had been putting this off for months, even after hair salons reopened under Phase I here in Massachusetts. Indeed, I rescheduled at least twice, because I was just too nervous about the pandemic risks.

Then the heat wave hit. It’s July, it’s really hot, even for me, and my hair not only resembled Albert Einstein’s, but also was just compounding my sense of overheating. I rarely perspire, but sweat was streaming down my forehead and into my eyes.

I tried a stopgap with hair combs and clips, which worked up to a point. It was kind of fun to be able to play around with my hair again after wearing it short for decades. But not fun enough to make it worthwhile for the long haul that this pandemic surely is.

My salon is in Boston, worth the trip for the talent—my March haircut lasted at least two months before it went haywire. I called ahead to double-check what precautions they were taking and was very pleased that they not only were following the strictest protocols, but also that my stylist wears a face shield over her safety glasses and mask. If she’s being that careful (which she needs to, because she’s at greater risk than I am from so many contacts during the day), then I figured I’d be in good hands. And I knew I could wait another two months before returning.

Even still, I was nervous before leaving the house last Tuesday. What if I was making a huge mistake? What if I got Covid and had a really serious case, given my high-risk status with scleroderma, all for the sake of vanity? I shared this fear with Al that morning, and he was clear that I was neither (a) doing something stupid nor (b) vain. This helped.

I made it into Boston in under an hour (pandemic = no traffic) and found street parking. So far, so good, no need to touch the meter because of my parking app. Most people were wearing masks, as I was, and the sidewalks were not overly crowded, so I could stay six feet or more away from others. I had hoped the salon door would be open, but it wasn’t; I was prepared, and put on a rubber glove to pull it open, so no contact there.

The receptionists were courteous, took my temperature with a forehead scan, then handed me a salon robe. My stylist greeted me soon after and asked if I wanted my hair washed or just spritzed with water for the cut. I was glad to have the option and chose the latter. She sanitized her hands and set to work.

Forty-five minutes later, there was a lot of hair on the floor, and I looked like myself again. She did a wonderful job. I had prepaid online, so there was no need to handle my credit card for the cut or a tip. I sanitized my hands and left feeling great.

Still doubts lingered. For the next few days, I found myself second-guessing any tiny change in my health—a sneeze, a cough, an odd tingling in my tongue (this, I realized, was due to something in a takeout pizza we consumed for dinner that must have been an irritant). But I also was certain that I’d know if I were sick. I am very attuned to my body, and whenever I’m coming down with something, I immediately feel off-kilter. As I write a week after my haircut, I still feel fine, thank goodness.

Getting my hair cut was about more than just wanting to feel cooler in the heat and wanting to look my best, although those were certainly motivating factors. It was also about reclaiming a piece of normal. It was about overcoming my fears of what this pandemic has wrought and taking a carefully calculated risk. It was about supporting my stylist so that she could continue to make ends meet.

My hair is one of the very few things I can control about my appearance, ever since I contracted scleroderma. When it looks good, I feel good, and when I feel good, I have more energy and confidence. And I can be more present and supportive of others. Well worth it.

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: Ugur Peker

Blast from the Past

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Last week, a longtime friend sent me this photo. That’s me, with the dark hair, standing. The year is 1980, I’m 26 years old, a graduate journalism student at what is now the University of Illinois Springfield.

My friend is seated to the left, and our third classmate is to the rear. The guy with the beard and plaid 70s jacket was our news director at WSSR-FM (now WUIS-FM), the Springfield NPR affiliate.

My first reaction to seeing this on my social media feed was laughter. Were we ever that young? Did I ever have that much hair? No glasses, either—that was back in the day when I wore contacts.

Lots of nostalgic memories of covering the Illinois Statehouse during the 1979-80 legislative session, including the infamous June 1980 defeat of the Equal Rights Amendment, which effectively killed it nationwide (until now, when ratification efforts have been revived). I covered the ERA debate for NPR as a stringer, even interviewed ERA foe Phyllis Schlafly once on the phone, a master of the 20-second partisan soundbite. (If you watched Mrs. America on Amazon Prime recently, you’ll know whom I’m talking about.)

As I studied the photo, I zoomed in on my hands. I have very few images of my adult hands before scleroderma. I had forgotten how long my fingers were. As I thought about this some more, I realized this picture was taken the year before I developed the first symptoms—in my case, swollen fingers and migrating arthralgia (as in, pain in a knee, then a few hours later, pain in a shoulder, on and on). I’d had Raynaud’s for years, but only thought of it as a nuisance.

It’s one thing to see a nostalgic picture of your younger self, quite another to see yourself caught in amber, before everything changed.

Yes, I do miss my young hands. But I can no longer remember what they felt like. And I’m not sad. In fact, you couldn’t pay me enough to go back to being 26 years old in that life, at that time. The year after that photo was taken, I moved to Massachusetts, my first marriage broke up, I lost my new job as News Director at our local NPR affiliate due to Reagan-era budget cuts, and I was stressed, to say the least. I believe it is no coincidence that I began to experience strange auto-immune symptoms, even as I had no clue what they were. Though there are no definitive studies that prove a causal relationship between stress and autoimmune disease, there is some pretty interesting evidence that such a connection is likely. From my own experience, I can certainly report that constant triggering of my fight-or-flight adrenaline response when confronted with all of those changes and losses at once did not do my health any good.

Forty years later, I have compassion for that younger me. She did not know what she was in for, but she discovered a deep reserve of grit that she never knew was there until she needed it. None of us ever knows, beyond the moment we live in right now, what is next. As we all find ourselves in our current heightened state of angst and unknowing, only one thing is certain—we’ll find out when we get there. May we all learn how to make the best of it, better than we could have ever anticipated.

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: University of Illinois Springfield

 

Rolling Thunder

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I’m writing on Sunday night as a bank of thunderstorms rolls overhead. Lightening flashes and flickers, and the thunder rumbles deeply. We need the rain. It’s been hot and dry and lawns are parched. I’m thinking of my mother, who used to tell me when I was afraid of thunder that it was just the sound of giants bowling in the sky. She drew upon Washington Irving’s tale of Rip Van Winkle. We lived in the Hudson River Valley, not far from Irving’s home and a few hours’ drive from the Catskills, where the story takes place.

Van Winkle, an idler who seeks to escape his wife’s demands, wanders from his town into the mountains and comes across men dressed in antique Dutch clothing, who are playing nine-pins. He shares drinks and falls asleep, only to awaken twenty years later, after the American Revolution has been won. Still believing he is a loyal subject of King George III, he learns that most of his friends died for the American cause. The bowlers are rumored to be ghosts of Henry Hudson’s crew. His wife is dead. His son is grown. His daughter takes him in.

What would one discover, if she fell asleep today, only to awaken decades from now? I hope a revolutionary change as great as the one Van Winkle encountered—a more just world, a true democracy here at home, where all individuals are equally respected and safe within its borders. I hope she would find a planet that has come together to stop global warming and begun to reverse the devastation it has wrought. I hope, a time when science is taken seriously and the COVID-19 pandemic is a hard lesson learned and never repeated.

That’s what I hope. But we can’t assume, much as it would be nice to dream it away, that this tumultuous period will just work itself out on its own. It’s up to each of us to make it happen.

There are days when this seems overwhelming and impossible. Then I listen to the thunder and watch the lightening and think that as long as humans have walked the earth, we have survived storms. The creative spirit that spins thunderstorms into a game of nine-pins echoing in the mountains can envision a better world and find the way to it. We just need to stay awake.

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: Breno Machado