Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

What Did You Do to Your Hands?

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Scene One:
I’m buying a slice of pizza at a luncheonette across from Boston Medical Center before I drive back home from an appointment. As I fumble with my wallet, the middle-aged man behind the counter notices my five bandaged fingers.

“What did you do to yourself?” he asks.

“Oh, I get ulcers,” I say, giving my standard explanation.

“Does that hurt?”

“Sometimes, if they get infected.”

He nods and hands me my change.

 


Scene Two:
I’m taking my first Saori class to learn this fascinating Japanese weaving method that encourages free-form creativity and uses looms that accommodate people with disabilities. The young son of one of my new classmates comes up to greet me. He loves to run around and say a loud Hi to everyone when he’s not weaving wonderful fabric. I shake his hand, and he pulls back. Later, I offer him my hand again. My Raynaud’s has kicked in, and my palm is a mix of indigo and fuchsia from haphazard blood flow. He stares and says No, frowning and shaking his head as he steps away. I believe I’ve frightened him.

*   *   *

June is national Scleroderma Awareness Month. It’s the month for walkathons to raise money for research, ramped-up efforts to publicize scleroderma’s devastating impact and continued lobbying for NIH funding of scleroderma research to find a cure.

All of this is important, focused work. But I wonder. How do you really get anyone to care about one more way that our bodies fail us, unless they have a vested interest? This time of year, there’s a race or walkathon or bike-athon for some disease every weekend, every cause has its own colored ribbon symbol or rubbery message bracelet, and Congress is still gridlocked over cuts in domestic spending. Not to mention that nobody pays attention to anything in front of them any more, just the alternate reality of their smartphone universe.

As part of its awareness campaign this year, the Scleroderma Foundation has developed a social media strategy to encourage patients to share personal stories about scleroderma and to create a video story collage that they plan to send to Washington lawmakers in the fall. I hope it works. For me, the art of storytelling remains the most viable means of building awareness, a primal way we connect as humans. But it requires a willingness to speak up and a willingness to listen. Neither are easy to come by for a disease like scleroderma.

Before I started writing this blog in January, I had a very hard time talking about my disease. In fact, I’ve been silent about it, for the most part, except when sharing with very close friends and family, for the better part of three decades.

When asked that all-too-common question by curious cashiers (the people most likely to ask, it seems)—What did you do to your hands?—or its variants—Did you cut yourself while cooking? Did you prick your fingers with a sewing needle? Did you stick your hand in a lawnmower?—I used to demure and just say I have sores. Now I say I have ulcers, and if I think the person is genuinely interested, I’ll explain I have scleroderma.

Responses range from compassionate concern to flickering interest in freakishness—the latter, I think, veiling the true reaction so powerfully expressed by the young boy I met in my weaving class: my hands look really strange and scary.

This is the hard truth of scleroderma. It’s rare, it defies easy explanations and it’s disfiguring in a way that others find threatening to their own body image and sense of well being.

It’s hard to talk about. It’s hard to draw attention to yourself, or more attention to yourself, and say, hey, I have this weird disease that makes my hands look like claws and my face like a mask and has screwed up my lungs and digestion and God knows what else.

Honestly, I just want to be known for who I am, not for this disease I live with.

But what I’ve come to understand and am coming to embrace is that scleroderma is a part of who I am. There’s no getting around it. I have this fucking disease, and I’m stuck with it for life. Which is why I’ve begun, finally, to write about it, tell my stories and try to make some sense of it all.

I have no awareness agenda. I am aware, however, that it’s important to get past the shame and embarrassment of living with a disfiguring chronic illness and share this journey with others who want to understand. This blog is my medium for that message. And maybe the next time a stranger asks what I did to my hands, I’ll tell them my real story.

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.

Skin Deep

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There are some bizarre advantages to having scleroderma. For one, I don’t have as much body hair as I used to, so it take much less effort to shave my legs, and I hardly ever need to shave under my arms, which makes summertime grooming a snap.

For another, although my facial skin has loosened with excellent medical care and time, thank God (within the first five years of my disease, my face became so tight that I was having some difficulty blinking my eyes), I still have relatively few wrinkle lines. Whereas some women pay hundreds of dollars for collagen creams that plump up their skin, I have more than enough collagen to go around.

Which isn’t to say that I don’t fret about my appearance as much as most other women my age. In a culture that values youth and physical perfection, where magazine ads feature models with Photoshopped features that defy wrinkles and flaws, I am quite conscious of the ways that scleroderma distorts my face.

There is the fact that my nose—generous, to begin with, like my father’s and his father’s—has narrowed and looks and feels pinched. There are the red, blotchy telangiectasias (dilated capillaries) that speckle my nose and dot my right cheek. There are my droopy eyelids, which have fallen over the years due to thickening. There is the asymmetry in my facial muscles, so that the right side is slightly weaker than the left, causing me to smile a bit lopsided. And there are the deep furrows around my lips, resembling a cinched purse.

Most of this I can address with some artfully applied makeup. A couple of years ago, I discovered Arbonne products, which are vegan, extremely lightweight and moisturizing, and use a wonderful color palette that complements my skin tone.

But my deep mouth creases are another story. When they first developed, around the time I was approaching menopause, I was, quite frankly, horrified. This sounds shallow, I know. There are many other, much more horrible things that can happen to you than to develop ugly mouth wrinkles. And yet, self-conscious me hated them and wanted to do something about it.

So I consulted with my rheumatologists and a couple of specialists. A plastic surgeon advised me not to frown or look down, because it exaggerates my creases, and suggested Botox. The idea of injecting a substance that would relax my face into a mask seemed ridiculous, so I passed on that (and him). A cosmetic dermatologist suggested a more promising alternative, injecting hyaluronic acid (HA), a natural filler used to smooth out “puppet mouth” (those long creases that run from either side of the nose to the chin), crow’s feet and other facial flaws.

Al was supportive, though he assured me I looked fine the way I was. He understood how I struggle with the way scleroderma has distorted my body and was willing to go along with my experiment. After doing a test of HA on the inside of my arm to be sure I wouldn’t have an allergic reaction, I went ahead and had the procedure.

This was not fun. First, the cosmetic dermatologist marked the worst creases with a felt-tip pen. Then, after numbing the skin, he stuck a very sharp needle beneath each line around my mouth to fill the furrows with HA. It hurt like hell. He gave me a stress ball to squeeze, which didn’t help much. Neither did the anaesthetic. I quipped how we’ll do anything for beauty, and he just nodded. Of course. I wondered what he really thought of me and all the other women who came to him, in vain, to try to reverse the aging process.

As expected, the skin around my mouth reddened and swelled for several days (I did this at the end of the work week, so most of the evidence would be gone by Monday morning). As the swelling receded, I checked my reflection frequently. Were the furrows gone? Did I look like my younger, healthier self again?

Alas, as weeks passed, I realized that all I’d gained were small lumps where the deep wrinkles had been. The effect wasn’t smooth and youthful. In fact, the HA caused the skin around my mouth to feel a bit tighter, because of the extra filling. When the substance fully absorbed, after about five months, I was relieved. No one ever noticed the difference (or if they did, they never commented), I could open my mouth more readily again, and we were going to save a ton of money.

And, at the risk of sounding Pollyannaish, I discovered a much wiser, free solution: My mouth furrows disappear when I smile.

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.

Butterflies and Baseballs

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I’m surrounded by butterflies—sapphire Blue Morphos, frilly orange-white-black Lacewings, black Cattlehearts splotched red and white, bark-colored Owls flashing camouflage yellow-black eye-spots. They flit and flutter from orange and pink kalanchoes to a stand of rotting bananas to green cinderblock walls to more delectable flowers, sipping nectar through wiry black proboscises, wings beating as they sup.

It’s warm and humid inside The Butterfly Place in Westford, Mass., the perfect environment for butterflies and a great place for perpetually cold me on this crisp spring day that is my birthday. I snap digital photos, trying not to drop the camera, trying not to step on the Blue Morpho that has settled on the ground or the tiny, wingless birds that skitter under green foliage. One butterfly alights on my hand, briefly; another, on my sweater and crawls upward, staring at me with bug-eyed intensity until I shake it off.

A black butterfly shoves another off a flower, and I wonder how much I don’t know about these beautiful creatures. The Blue Morphos swirl in packs while other species fly alone. There is constant motion and competition for food. And there are butterflies with broken wings. This amazes me. I always thought a broken wing meant certain death. But, no, there are dozens with damage, still feeding and flying. I hesitate to take their pictures, wanting only perfection. Then I realize, how ridiculous. Beauty isn’t defined that way.

Later, I wander through exhibits in Lowell’s American Textile History Museum, fingering fabric, trying my hand at weaving on a small loom, learning how much labor went into making linen, wool, cotton and silk over centuries. I think about how grateful I am to be living here, now, and wonder how I would have survived—or not—in earlier eras, when so much work depended on manual dexterity and physical stamina.

I learn about cellos made from black carbon mesh and how many years it takes to grow organic cotton with natural color variation. And I learn about baseballs—how the cork and rubber pill is wound with 219 yards of three types of wool of specific, varying ply and color, plus a final 150 yards of white cotton-polyester yarn.

It’s the wool that gives a baseball its resilience. When the ball is struck, it wraps partly around the wooden bat, then snaps back into shape as it sails across the ball field. That’s how baseballs stay round, though bashed over and over.

When I get home, I notice a baseball lying on our back deck, hit there by one of our neighbor’s kids. No broken windows or smashed shingles. The ball is a bit smudged with dirt. I’ll toss it back when I get a chance, as I have many times, and watch it land with a soft thunk in their yard.

I’m 58 years old. I’ve had scleroderma for three decades. I’m glad to be here.

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.

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.