Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

Refreshment Break

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I made myself take a walk Monday afternoon. It was short, just around the block, but I got outside. It feels like fall, now, damp, chilly, and I need to get acclimated to the change in seasons. I’m back in sweaters and warm pants and thick socks, my long coat, hat. I wore mittens over the weekend.

It’s all too easy to make excuses to myself to stay inside when the weather turns. It’s too overcast. It might rain. It looks dreary. I don’t want my fingers and face to get numb.

So my short walk was a good reality check, as well as a much needed breath of fresh air. Even as it was overcast and had been pouring earlier in the day, the rain held off. The air smelled sweet with the tang of humus. My joints limbered up. My mind brightened from a jolt of oxygenated blood.

It was also good to see the neighborhood beyond my computer screen. Trees are turning late this season in Massachusetts, due to a warmer-than-normal summer and early fall. Usually we’re at peak foliage right around Columbus Day weekend, but this year green still predominates. Only the sugar maples, so far, have begun to flame and shed their leaves.

Pumpkins, plastic tombstones, skeletons and fake cobwebs decorate a few neighbor’s lawns, but the Halloween craze of a few years back seems to have ebbed. That’s fine with me. More than ghosts and goblins, there are quite a few red, white and blue signs promoting political candidates for the upcoming November election. That’s fine with me, too.

A new neighbor’s house has been repainted; that neighbor’s repairs are complete; another’s is in progress, with boards hammered over the front door. Al decorated our front steps with mums, pumpkins, gourds and cornstalks over the weekend, and I’m pleased with the result as I walk up our drive.

Back inside, I realize my fingers and lips have gone slightly numb. But it’s warm in the house, and I feel refreshed. Worth repeating.

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.

Progress Report

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A year ago today, I was two weeks away from my second hand surgery to repair damage from severe ulcers in five fingers—damage that had exposed bone and broken two of my knuckles. My left index and right pinky were held together by steel pins, and I didn’t know if I would lose them in the next procedure. My hand surgeon felt that skin grafts were worth trying, but we didn’t know if they would heal properly. He had warned me at the outset that these were the first of many surgeries.

What a difference a year makes! I’ve been extremely fortunate. A gifted surgeon, excellent wound care and 60 dives in a hyperbaric oxygen chamber, plus effective occupational therapy sessions (and health insurance to cover it all), combined with a lot of support from family and friends enabled me to heal.

And I am cooking again. Al had picked up the slack in the kitchen for well over a year, ever since the ulcers became too painful for me to handle any utensils. He cooked up some great meals and discovered that he really enjoyed experimenting with new recipes. I was grateful for all that good and healthy food.

But a part of me missed cooking. It’s never been a major focus in my life. I don’t spend hours pouring over cookbooks and savoring the thought of new recipes. However, I do like making a good meal, especially for the holidays. It’s exhausting, but satisfying to turn out a gourmet, multi-course dinner. It gives me pleasure to prepare food that brings others enjoyment.

At some point over the summer, I began baking bread again for our Friday night Shabbat dinners. Al had gotten quite good at this, and he was deservedly proud of his delicious braided loaves, but he was happy to have me pick it up again. I also was able to help clean up after meals, which had been impossible with the ulcers and ensuing surgery.

The Jewish New Year, Rosh Hashanah, arrived just a few days after we came home from Europe last month. I knew it would be too much to have a big crowd, so we just invited a few close family members for the first night. But, to my and Al’s surprise, I was able to do most of the cooking myself. He served as sous chef, cutting vegetables. Even still, I was able to handle the chef’s knife and do a lot of prep myself. Everyone enjoyed the meal, and I felt like I had crossed the finish line.

I have been doing most of the cooking ever since, although I still have to be careful. I developed an ulcer in one of my skin grafts shortly after we returned from our trip, but I think this was actually caused by some calcinosis lurking just under the surface. It is gradually healing. Al is enjoying a well-earned reprieve, although I recruit him for help as needed.

Mostly, I’m amazed and extremely grateful that I can actually do so much with my hands again. It’s taken all this time to relearn how to use them, and I certainly have my limits. But it’s wonderful to see that, despite all the challenges, my body can truly heal.

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.

Savory Summer

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Look! the round-cheeked moon floats high,
In the glowing August sky,
Quenching all her neighbor stars,
Save the steady flame of Mars.
—Emma Lazarus, August Moon

Mid-August, and I can already sense fall’s vibrations. Not yet. No, not yet.

On so many recent sweltering nights, I’ve lain in bed with windows open and treasured the symphony of crickets and katydids. How lovely to leave the house without donning even a sweater. The sun still sets after supper, and the trees remain lush, even as a few wayward, scarlet leaves drift to the ground beneath the sugar maples on our street.

Before autumn’s busy-ness descends, it’s time for time off—from work and deadlines and responsibilities. It’s time for a break from blogging, too. I wish you, Dear Reader, a savory late summer. I’ll be back with weekly posts in mid-September.

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: Aron

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