Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

What Comes Next

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This Friday marks the one year anniversary of my hands falling apart—literally. This is not easy to think about, even as I’ve been recording my experience and its aftermath these past twelve months. It makes me cringe.

At the same time, I’ve grown quite accustomed to my “revised” hands. I was noticing this the other day when I was working on a sewing project. I had no trouble negotiating my sewing machine, handling the fabric, moving my fingers around the needle and presser foot, winding the bobbin, pinning and unpinning. I still have to be mindful of how I position my hands, but mostly it’s become second nature.

Remembering how all this started, however, is scary. I had no idea what I was in for, and it was not only painful when my very severe ulcers lifted up to expose bone, but also revolting. I don’t think I fully allowed myself to acknowledge that at the time. Some kind of internal coping mechanism, combined with my writer’s indefatigable inquisitiveness, took over. (“Oh, wow, that’s what my knuckle bones look like!”)

Fortunately, in this case, curiosity did not kill the cat but enabled her to persevere. I didn’t let my deteriorating hands stop us from taking an extraordinary trip to Iceland and Norway; in fact, as I wrote at the time, it propelled me to seek out beauty to boost my courage for whatever lay ahead. I benefited greatly from my very supportive husband, without whom that trip would have been impossible.

August is just around the corner, and we are a few weeks out from another trip abroad. I am very grateful that my hands are in relatively good shape at present, with only two bandages, including one on my right thumb that is protecting an exposed clump of gray calcium that has yet to exit the finger pad. I am debating whether to ask my hand surgeon to remove it for me or just let nature take its course. My nose is healing from surgery two weeks ago. I am praying that we will avoid any health issues or other emergencies this year.

There is just no way to know what comes next. I can only hope that my well of resilience remains deep. I hope the same for you, Dear Reader, wherever your summer travels may take you.

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 Credit: David Monje

Operating Instructions

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This one’s short.

In Anne Lamott’s Operating Instructions, a memoir of her son’s first year and her struggles as a single mother, she recalls this anecdote about writer’s block:

. . . I remembered the other day a weekend I spent with my family at our cabin in Bolinas when I was seven or eight and my older brother was nine or ten. He had this huge report on birds due in school and hadn’t even started it, but he had tons of bird books around and binder paper and everything. He was just too overwhelmed, though. And I remember my dad sitting down with him at the dining table and putting his hands sternly on my brother’s shoulders and saying quietly, patiently, “Bird by bird, buddy; just take it bird by bird.” That is maybe the best writing advice I have ever heard.

Lamott went on to write, among other books, Bird by Bird, which is, indeed, one of the best writing books out there. But her father’s advice applies to many other situations, too—when there’s too much to do, too many deadlines, too many uncertainties, too many worries, just too much stuff. Nothing big and complex and important ever gets solved or resolved in short order, be it creating a work of art, managing a chronic disease or anything and everything in-between. Bird by bird.

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 Credit: Rafael Rodrigues Machado

Spotlight

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This past Sunday, I sang a solo. Our congregation was celebrating our beautifully renovated synagogue. I’m the alto in a quintet that sings on the High Holidays and for special occasions. One of our numbers was a barbershop mix set to the tune of Billy Joel’s “For the Longest Time.” I had the lead.

What a great piece to sing! And it’s rare for an alto to have the main melody. We’ve been practicing for weeks.

But, of course, despite all that preparation and encouragement from my fellow singers, I was nervous. Not just the typical oh-my-gosh-I’m-performing-in-front-of-hundreds-of-people nervous. It was scleroderma-related.

Years of lung scarring have made it harder for me to inhale a full breath, and it definitely affects my ability to hold notes and breathe with appropriate phrasing when I sing. I also have dry mouth from Sjögrens, and when I sing, I never know if I’ll either (a) have to cough at an inopportune moment or (b) collect so much saliva in my mouth that I can’t pronounce clearly. On Sunday, I was constantly clearing my throat before it was our turn—just this side of feeling like my throat would guck up.

Then there was the senior-moment-side of nervous. As many times as I’d reviewed my words, I was afraid my mind would freeze and I’d forget. Since the words were in Hebrew, they were harder to remember, even as the phrases were familiar (the opening prayer of the blessings after meals). Lately, I find that when I’m more self-conscious, my brain can go on the fritz for word recall, as if a file drawer gets stuck and refuses to open until I relax.

As a fallback, I had my music in front of me. But I wanted to make eye-contact with the audience.

Finally, it was our turn to sing. Two of the other members of the group are experienced barbershop singers, which was a good thing, since we were performing a capella. My nerves eased as we swung through the tune. In fact, our voices blended beautifully. I had enough breath, I didn’t cough, and I didn’t lose my place. A good sound system really helped. I felt great. We received many compliments afterward.

Most importantly, we had a wonderful time and added just the right bounce to an already upbeat morning. Music has a way of bringing joy into the world. I may not be able to play an instrument any more, but I’m so grateful I can still sing.

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 Credit: Israel Palacio

Time Out

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Sometimes I feel as if my head is going to explode from our nation’s vicious politics. So it was a great pleasure and privilege to go with Al to one of our favorite getaways on Sunday, Block Island, just off the Rhode Island coast, for a relaxing Father’s Day. The weather was perfect; the sky, azure with wisps of clouds; the water, emerald and sapphire. I stayed away from my news feeds. Best of all—no crowds. Public school is not yet out, so it was the calm before tourist season begins

I read, watched Al brave 58°F water, walked the beach, took photos and collected stones and sea glass. I got my feet wet, too, even if my toes turned purple. (Added bonus: walking barefoot on wet sand helped me to remove a nasty corn from my left foot that had re-emerged shortly after my podiatrist took it out a couple of weeks ago, a huge relief and boost in my ability to walk without pain.) After supper and some shopping, we sailed back to the coast on the ferry’s upper deck, enjoying a beautiful sunset. Just what the doctor ordered.

Here’s a taste of our visit. Enjoy!

                    

 

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.

Tone Deaf

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Monday morning, I picked up our wireless landline phone to make a call. No dial tone. It sounded as if one of us had accidentally forgotten to hang up. I checked around the house, but our other two wireless phones were in place, and none had a dial tone. So I made the call on my cellphone, then forgot about it until later in the day, when I wanted to make another call.

This time, I called Verizon on my cell. And got stuck with the automated “assistant.” It asked me a few questions to determine the extent of the problem, tested our line remotely and set up a repair visit. The earliest date? Thursday.

Now, I’m fortunate to have a mobile phone. What about people who don’t? Plenty of folks rely on cell phones for all of their telephone communication. But not all. If I didn’t have a cell, and I didn’t have Internet, I would have no way to get in touch with Verizon to report the problem—or any other problem, for that matter, like a medical emergency.

Not long after I set up the repair visit, I decided to check the phone line. By a miracle, the dial tone had returned! So I went online and canceled the repair visit. Picked up the phone to make a call and . . . heard a high-pitched busy signal. Aaargh!

So, back on my cell, I called Verizon. Of course, now they had a record that I’d called and resolved the prior repair issue. “We’re sorry that you’re still having problems,” oozed the automated voice. It recommended trying to test the system ourselves, to save the cost of a service call, because now their remote test indicated that the problem involved internal wiring (before, the issue was external). I was getting more and more frustrated. The steps involved unplugging all our phone jacks, and then systematically testing them with a “corded phone.”

Who has a corded (aka old fashioned, non-wireless) phone lying around the house, these days? Fortunately, yours truly is a pack rat, and I actually had one stashed away in my closet. We tested the line. Still the annoying busy signal. I marched back to my desk and once again called Verizon on my cell. This time, I was literally yelling at the auto assistant, trying to get it to send me to a human being. After another five minutes of annoying questions, the same routine I’d gone through twice before, it connected me to a nice customer service rep in Albany, N.Y. (I assume he told me his location to assure me I wasn’t being farmed out to an international call center, a fascinating response to current politics—but I digress).

While he couldn’t really give me any more information than the auto assistant, at least he was pleasant, attentive, and able to hear the annoying busy signal when I held the land line up to my cell. He also could answer my questions about charges for any repair visit. Still had to wait until Thursday, but so be it.

Within about an hour of that call, our phone rang. The line was crackling, but it worked. Another hour later, it rang again, with a Verizon recording to see if our phone issue had resolved or if we still needed the appointment. The line was crystal clear. I cancelled the repair.

Thank goodness it’s fixed. But I still wonder about the person who can’t wait three days to have phone service restored, if the issue can’t be fixed remotely. What about older adults who may not be adept with mobile phones or able to afford them? What about people with health challenges that can’t wait? I wonder if the line was repaired remotely within a few hours only because I pushed back against the automated system to get through to a flesh-and-blood service rep?

Customer service is no service at all if it ignores the real needs of the customer. Are you listening, Verizon?

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.