Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

Good Medicine

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Half-way around the world from home, I’m writing at our friends’ kitchen table in their Tel Aviv apartment, watching a lemon sway from the branch of a tree on the neighbor’s patio, listening to the swish and blare of traffic, the wall clock’s soft tick, a distant outdoor chime of Rock-a-Bye Baby, a jackhammer’s clatter.

Al and I have traveled nearly 5,500 miles to get here, partly for business, partly to see his family, and mostly to visit Mindi, our eldest, who has been living and working in Israel for almost six months.

It has taken the past four days for my body to adjust. The trip was, by most travel standards, easy—our flights were on time, our connection a 20-minute walk through cavernous Heathrow. We had minimal turbulence, ample food, excellent service, and our bags arrived with us. But for me, it has been very strenuous.

I haven’t traveled abroad in 16 years. Then it was challenging because the girls were young. Now it’s challenging because I’m getting older, my hands are more damaged, and I don’t sleep as well, even under the best of conditions.

I was prepared, but not. I packed well-organized carry-ons but didn’t realize that I had to pull out my laptop for security checks in Boston and London, which required unzipping and unpacking and repacking and re-zipping twice. I knew we’d have in-flight meal service but didn’t anticipate all of the myriad shrink-wrapped and hermetically sealed food items and utensils that I couldn’t open without Al’s help. I wore soft sweat pants and brought slippers for the plane but realized as we squeezed into our seats on both flights that comfort and coach don’t belong in the same sentence.

All of this took a toll on my body, especially my hands. So many barriers, from the seat belt clips that I had to pry open to the lavatory door’s narrow pull grip. With a current count of eight ulcers, I knew I needed to change all of my bandages at some point along the way or my skin would deteriorate, but I also knew I needed to be meticulous about keeping the wounds clean in the process.

I solved the problem somewhere high over the Mediterranean, using disposable aloe hand wipes to clean my fingers before replacing all the dressings. One of the flight attendants, noticing the mounting pile of bandage wrappers on my tray table, asked if I needed any help. No, I said, I do this all the time (just not at 30-thousand feet).

Sleep was elusive. I avoided everyone’s advice to take sleeping pills because I didn’t want to get groggy and dehydrated. So I dozed as much as I could and caught up over the next few days.

Yes, it was a major challenge. But so worth it.

There is no better medicine in the world than seeing your daughter all grown up, finding her way in a complex foreign culture, thriving. And there’s no better feeling than knowing, despite chronic medical challenges, you can still fly halfway around the globe to see her new world through her eyes. And you’d do it again, in a heartbeat.

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.

Walking in Your Own Landscape

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Willem de Kooning—he of the loaded brushstroke, juicy marbled swirls of paint, positive-negative-black-white space, deconstructed women, lush landscape abstractions—in his eighties, developed Alzheimer’s. But he kept on painting.

In contrast to his abstract expressionist works of earlier decades, with their layer-upon-layer-upon-layer of bold color swaths, de Kooning’s late paintings are spare and shimmering, his palette reduced to contoured ribbons and cul-de-sacs of red, blue and yellow looping through tinted white planes.

I was drawn to these paintings from the 1980s on my second visit to MoMA’s de Kooning retrospective this past Monday, the exhibit’s closing day. On my first visit in October, overwhelmed by the explosion of color, I wandered from painting to painting, trying to absorb the sheer energy and creative output of this complicated man who struggled with depression and horrific bouts of alcoholic binging through much of his seven-decade artistic career.

But this time, I focused on the late paintings. The body of de Kooning’s oeuvre is intricate, complex, each piece a world of ideas and inner struggle and striving for balance. What fascinates is how his late works lighten.

Known for agonizing over each piece, scraping down the canvas and painting again and again for months until he was satisfied with the results, de Kooning began to let go as his short-term memory and sense of future diminished.

“Around 1983,” write Mark Stevens and Annalyn Swan in de Kooning: An American Master, “having concluded he had little time left, de Kooning decided to forgo second-guessing and let each canvas stand or fall on its own merits. ‘There’s no end, really,’ he said of his early-eighties paintings. ‘I just stop it. Abandon it.’”

Stevens and Swan continue:

“Two years after de Kooning began his eighties paintings, it became clear that he must paint—not only to create salable work, but also to keep him mentally and physically alert. The few times that he stopped painting in the mid-eighties (when, for example, he once hurt his back), his mind deteriorated.”

As de Kooning’s dementia worsened, his assistants did more to help structure his compositions and focus the starting point for each canvas. Stevens and Swan note: “the paintings that emerged now were de Koonings with an asterisk.”

Still, de Kooning painted. His art was his life and his anchor as his mental function deteriorated. There is courage in his final works—to continue, despite huge cognitive and physical obstacles, to pour his inner world through his brush onto canvas. And there is a steadfast determination to continue following the ribbon of paint, wherever it leads.

“Then there is a time in life when you just take a walk,” de Kooning once told film maker Robert Snyder. “And you walk in your own landscape.”

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.