Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

resilience

Shall We Dance?

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When I was in ninth grade, I talked my best friend into taking a modern dance class together. We met one afternoon a week in the gym of a nearby elementary school, where we wore black, short-sleeve leotards and danced to Crosby, Stills & Nash’s Wooden Ships.

The opening moves involved balancing on your right foot, with your left leg bent to the side, toe touching right knee, your arms raised and hands pressed together to form a diamond shape around your head, as you swayed back and forth. This I can barely do anymore. But I still remember the dance, leading the front row in a recital, jumping into an impromptu rendition at a friend’s pool party when the song floated into the mix, moving with ease and grace to the music.

I always wanted to take dance lessons as a kid, but our mother, like most of her generation, was not interested in playing after-school chauffeur or paying for multiple classes. I had violin lessons, and that, in her book, was enough. So, as an adult, I began to make up for lost time and took a dance class here and there–intro ballet, a little jazz, even some disco back in the early ‘80s. At some point in the ‘90s, Al and I took a few ballroom classes.

Still, I was just dabbling. Every time I’d go to a dance performance, I’d daydream about being up on stage. But my body was getting stiffer and weaker, from scleroderma and a general reluctance to exercise. I’ve never been athletic or very coordinated, and about my only exercise, for years, was trying to keep up with my growing daughters.

Things were getting so bad that I was beginning to hunch up like a little old lady, always hugging myself against the cold that causes my Raynaud’s to flair. So about five years ago, I had a talk with my rheumatologist about how I really needed to get regular exercise. He advised me to pick something I really loved doing, because I’d have an easier time sticking with it.

My first step was Pilates, which has become a weekly life saver, strengthening my core and improving my flexibility and range of motion. Then I decided to try and dance again.

I started with an evening intro jazz class at a North End Boston studio. It was a near disaster. The class was far from introductory, more like an advanced beginner level. The teacher was beautiful, very talented and rapid in her instructions. The other students memorized the floor movements and combinations easily. I could barely get my body to move the right way, let alone remember all the steps. It wasn’t just my lack of experience or weak muscles. My brain simply couldn’t hold all the information and communicate it to my arms and legs.

At the end of the first class, I went to the teacher and started crying, because I so wanted to dance but found it so confusing and difficult. She listened sympathetically and gave me some great advice: Don’t compare yourself to others. Focus on one thing each class to improve. This is about your personal best. It takes time to learn.

For the next two years, I kept at it, switching to a class run by the studio director that was a bit slower and more to my liking. But still, even as I loved the music and moves, jazz was just a bit more than I could handle. So I decided to switch to a basic modern class at a different studio, this time in Cambridge. This worked well for several sessions. Whereas jazz, like ballet, embodies flight, modern is all about gravity. Fewer leaps. More feeling your weight, connecting to the floor.

And yet, after a couple more years, I found that I still couldn’t keep up. Too much balancing on toes and one foot. As my feet have deteriorated from scleroderma, the fat pads have thinned significantly, and I just can’t put that kind of pressure on the balls of my feet. Even slipping a pair of soft orthotics into an old pair of jazz shoes wasn’t enough to help me balance.

So for the past six months, on Thursday nights in Cambridge, I’ve been taking Middle Eastern belly dancing. Now, it took me a while to try. I’d been contemplating the idea for at least a year. There are so many lewd stereotypes about belly dancing that I had to get past. But I was drawn to the form by the basic fact that, at an intro level, it doesn’t involve balancing on your toes. And I liked the music. And it sounded like fun.

My expectations have been met, and then some. The music is great. My teacher is a wonderful dancer and performer, very experienced, excellent at breaking down the many isolation movements that are part of this most graceful and sensual art form. By the end of the hour, I’m usually sweating from the workout. It dovetails well with Pilates to strengthen my core muscles.

Best of all, I’m beginning to be able to move my body in ways I could have never imagined were still possible. I can snake my arms and wrists. I can swirl a veil. I can do figure-eights and hip bumps and shimmies. I can feel the music and move with the rhythm. And I feel good about my full figure (belly dancing is the one form of dance that rewards you for those extra inches).

In fact, it’s that last point that is perhaps the most important. Scleroderma is a disease that locks up your body, distorts your face and hands, and makes you feel ugly. Belly dancing, reconnecting with your sensuality, is about as far from that as you can get. I can’t think of a better antidote.

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.

The White Glove Test

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Years ago there was a commercial—at least, I think so, because I can’t find it on YouTube, which is, of course, the repository of all things ephemera—that involved a nosey neighbor who wore white gloves. She would come to visit, and while her hostess wasn’t looking, check to see if there was any dust on the furniture by swiping a tabletop with one of her gloved fingers. Heaven forbid if she found a smudge and you failed The White Glove Test. Your reputation as a proficient homemaker would be ruined.

That was, of course, back in the day when women wore white cotton gloves to go shopping and white kid gloves to a cocktail party. My mother used to outfit me and my sister in white cotton gloves, black patent leather shoes and roll brim hats with grosgrain ribbons that dangled down our backs when we went into New York City for an outing. You could walk into any department store and find a variety of fine gloves for every occasion, and a saleswoman who knew how to fit you.

No more. So when I recently had the brainstorm to use white cotton gloves at night to relieve my ulcer-ridden fingertips from the bandages that have begun to shred my skin like cellophane—an insidious problem that seems to have arisen from some kind of reaction to the adhesive in the only bandages I can tolerate otherwise—I went online.

This is why I love the Internet. Type in a phrase like “white cotton gloves,” and you discover a variety of options plus an anthropological snapshot of how our culture has evolved from the formality of the early ‘60s to our denim-casual style of 2013. No dress gloves in the top ten. But you can find white cotton costume gloves from party stores and white cotton gloves from parade uniform suppliers.

Dress-up resources aside, the best option, for my purposes, were white cotton gloves from a photography supply site for handling archival film and other materials that shouldn’t get smudged by the natural oils in your skin. The kind of oils I don’t have enough of to keep my fingers lubricated and my skin elastic.

These lightweight gloves cost about eight bucks for a dozen pair. They are so thin, I can text with them on my iPhone. And they’re hand-washable.

Best of all, they seem to be helping my skin to heal. My new routine at night, after I shower and bandage any ulcers that are open wounds, is to slather my other fingers with a really good moisturizer, dip the most delicate tips in Aquaphor ointment (which I’d normally bandage for protection from overnight cracking) and pull on the gloves.

It feels absolutely luxurious to get out of those bandages, even while I sleep. And the treatment is working. In just a few days, I went from seven heavily bandaged fingers to four. This is a major accomplishment. Especially in January in New England.

If I’m not going out of the house, I can even cut back to two bandaged fingers, and either wear hand lotion under a pair of the white cotton gloves to protect my fingers while I type (I cut down the fingers on one pair and stitched them on my sewing machine to fit my stubby fingers for day use), or swaddle the most sensitive tips in white cotton-polyester finger cots—like little white socks for your fingers, which I also found online.

Now, you may ask, why didn’t I think of this before? I’ve spent a small fortune on bandages, ointments and dressings to protect my fingers over the last 30 years. Honestly, I don’t know. Probably because I’ve been so focused on finding the right bandage that it didn’t occur to me. Also, my finger skin is extraordinarily fragile because my circulation is lousy, even with medication. And I’ve had far too many infections. So I’ve always erred on the side of overprotection at the first sign of damage. What spurred this latest experiment was a conversation with a wound care specialist. When I showed him my shredding skin, he said you need to get out of the bandages. His ruminating about silicon finger protectors got me thinking about low tech solutions, and here I am.

The system is not foolproof. Of course, nothing with scleroderma can ever be that simple. I have to continue to be vigilant, to catch any skin cracks or scaling, and just keep moisturizing during the day. The finger cots really help with this, because I can moisturize any damaged skin, slip on the cot, and keep going.

Right now I’m typing with four bare fingers on my right hand. One, my ring finger, has had an ulcer that has refused to heal for at least six years. I’ve gone without a bandage or open sore on that fingertip for over a week. In January. In New England.

So, miracles can happen. I’ll continue to bandage up against dirt, bacteria and the elements when I go beyond my doorstep. And I know that my ulcers will continue to wax and wane. But at least I can get some relief at night. And who knows. Maybe white cotton gloves will come back in style someday.

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.

Apocalypse Not

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So, the Mayans were wrong. We’re still here. No escaping all those unpaid bills, looming deadlines, promises you made that you wish you hadn’t, closets to excavate, thank-you notes to write (does anyone still do this?), books you were going to read by the end of 2012, dirty laundry, December re-runs, Washington gridlock.

For those survivalists who paid $20-million for an armageddon-proof ark, I hope they rethink their investment strategy. Doomsday is big business, and they’ll probably find another apocalypse to pin their hopes on. But think of all the good that could have been done with that money to make life on Earth more livable.

Ridiculous as the 12-21-12 deadline for life-as-we-know-it seemed, however, I have to admit that a little part of me wondered . . . what if? I didn’t do anything differently. I didn’t stop making appointments for January or not bother to plan menus for the week or call my daughters to say how much I love them in case we never saw each other again.

But I did imagine, if only for a few minutes, how I would fare if there were some kind of earth-shattering disaster. One of the ways I drive myself crazy in morbid moments.

As always, when my mind travels down this rabbit hole, I concluded that I would not fare well. Chances are I’d get an infection in my fingers that would do me in without antibiotics. Or I’d fall behind and collapse in any escape or mass exodus that required strenuous physical exertion. No way to stock up on enough bandages and medications to last me five years in an underground, waterproof bunker. Which I guess is okay, because we couldn’t afford one to begin with.

Really, who would want to survive an apocalypse, anyway? The only people left would be the crazy ones with enough money and guns to hole up in a multi-million-dollar ark or a renovated missile silo out in the middle of nowhere. I’ve read Cormac McCarthy’s The Road. I don’t want to go there.

No, I’d rather be right here, with all the messiness of daily life. The Mayan Apocalypse was just another distraction, a way to avoid the mess. But that’s what we’re stuck with.

Healthy or not, wealthy or not, we’re all vulnerable as soon as we leave the womb. Facing each day, sticking with it despite all the struggles and risks and disappointments and losses takes courage and fortitude and faith. You can sequester yourself in an ark of your own making. But the only way really to survive—and thrive—is to dive in and swim.

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.

Grieving

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I had a blog post in mind for today, one that has been incubating since the middle of last week, as is usually my practice. But it can wait. After the Friday massacre of so many innocents at Sandy Hook Elementary in Newtown, Conn., it seems self-serving to write about what’s going on in my own little corner of the world.

Since last Friday, as more details have emerged about the shooter and his victims, about the heroism of those who sacrificed their lives trying to save more children, about how many rounds of ammo the shooter had in his cache, about how many more might have been killed if the police hadn’t arrived when they did, I have been struggling, like so many, to grasp fully what happened.

One morning you send your first grader off to school, and then. Gone. Murdered. No, slaughtered with a semiautomatic. Along with dozens of classmates, teachers. The images don’t go together. The pain is too great, too hard, even from a distance. My heart hurts. My prayers of comfort go to all of those who lost loved ones. But that seems inadequate, even still.

As President Obama spoke to the Newtown community Sunday night, you could hear a baby cooing somewhere in the audience. No one shushed it. Perhaps that was the most profound response to the nightmare.

Even in the midst of such tragedy, we are resilient. The will to live and heal and flourish, despite overwhelming loss and pain, is powerful, thank God. More powerful than the will to destroy.

And yet. As the days go on, as we return to our routines, will we maintain the focus and fortitude to ensure that our schools and malls and movie theatres are safe places for our children? Safe for all of us, regardless of social class, race, ethnicity, religion, sexual preference, physical disability, health challenges, whatever sets us apart?

President Obama issued a challenge. We need to change. The time is now. Yes.

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.

Gift of a Lifetime

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Twenty-eight years ago this past weekend, on another mild December Sunday, about an hour before Al and I were to exchange our marriage vows, I arrived at our synagogue carrying the white satin-and-lace wedding gown I’d sewn myself. The sun was streaming through the lobby windows at the opposite end of the hallway. And there stood Al, so handsome in his white cutaway tuxedo. We startled as we glimpsed each other, then laughed. I ducked into the Bride’s Room to get ready and hide until the ceremony.

We still joke about that moment, all the excitement and anticipation and hopes for a good life together packed into an instant of recognition. It was my second marriage, his first. All I wanted was for everything to work out right, this time.

We’d dated for just nine months. But our introduction was through our rabbi, who had known Al since childhood. Sterling credentials. Still, there was no way to know, as we stole those glances on our wedding day, whom I was really marrying.

I began to understand within a few weeks after we returned from our Cape Cod honeymoon. Before our wedding, when we’d had blood tests for our marriage license, I’d told our internist that I’d been experiencing fleeting joint pain, and my hands had been swelling recently. The wedding band we’d ordered was too tight when it arrived, and the jeweler had to stretch the gold to fit my ring finger. Our doctor ordered an ANA blood test to rule out any complications and referred me to a rheumatologist for an evaluation in January.

Back from the Cape, I was happily setting up our apartment and not thinking much about all of this, even considered canceling the appointment as a waste of time. But, being ever-diligent, I went, anyway.

The appointment turned my world upside down. My rheumatologist explained that my ANA had come back positive, a sign of some form of autoimmune disease. He thought it was one of three possibilities: rheumatoid arthritis, lupus or scleroderma. We discussed my long history of cold hands, sun-sensitive skin since my early twenties, migrating arthralgia for the past year or so, struggles with fatigue. We examined my cuticles under a magnifying loop, and he pointed out the wriggled, abnormal capillaries. We scheduled more tests and follow-up appointments.

I came home and sat on the love seat in our small living room, barely able to speak. Al sat with me. We looked at each other. I felt like damaged goods. I was terrified. Of the possible diseases, I only knew that lupus had killed my literary heroine, Flannery O’Connor, at 39. I was 30. I’d never heard of scleroderma. Neither had Al.

Much later, he told me his mother had warned him when we got engaged that I looked thin and frail. Even though she liked me, she was concerned about what kind of a wife and mother I would make.

Whether or not he had second thoughts when I came home from the rheumatologist, however, he never expressed them. Instead, he put his arm around me, and we sat there as I cried about what might happen and why this had to happen now, just as everything in my life seemed to be finally working out.

In the months that followed, we struggled to learn how to cope and talk about my health. My body kept doing strange things without warning, like suddenly flaring with a bout of pleurisy when I was serving Friday night supper to Al and his mother, or creating so much pain in my wrists that I couldn’t lift a pan off the stove. I was often tired and had to pause from my freelance writing to nap in the afternoon. I couldn’t play tennis anymore. I got exhausted from hiking or camping. I couldn’t finger my violin, which Al had had refurbished as an engagement present. There were times when he seemed distant, and I didn’t know how to reach him.

But this turned out to be just a prelude. That fall, Al’s mother was hospitalized with the first of two strokes. Running back and forth from work to see her in the hospital several times each day, working a second job as synagogue youth leader, Al contracted mono. On an icy night, Thanksgiving weekend, he began rasping in his sleep.

I found him, eyes open, pupils dilated, drenched in sweat. On instinct, I slapped his face to make him come to. He started breathing normally again, and we were able to talk. Pumping adrenaline, on auto-pilot, I called our medical service and was told to bring him to the ER. For some stupid reason, I thought I could do this myself, but when I tried to get him out of bed, he collapsed on top of me. So I finally called the ambulance.

Over the next few days, we learned that Al’s spleen had ruptured and he was being held together by a blood clot. He came home from the hospital, sans spleen, with a long scar down his chest that was still healing, the day before our first anniversary.

For seven more years, we watched over Al’s mother, helping her through a second stroke, at-home care and the transition to a nursing home. We lived through many more family medical emergencies—for Al’s mom, my parents, our two daughters, Al himself. I became an expert at managing the details of everyone’s medical history and medications. My scleroderma progressed, slowly but relentlessly.

With time, some counseling, and a lot of practice, we learned how to talk about all of this, how to cope, and how to thrive in our marriage. Even as my disease has made itself at home as the unwelcome third partner in our relationship, Al has never failed to know the right thing to do or say about my own health challenges. He has patiently supported me when I needed him, but never babied me or made me feel like an invalid. He has always expected me to be just myself, my whole self, not this supposedly frail woman with scleroderma. We both understand, all these years later, I’m a lot tougher than that. And a lot more.

No way to know, as I glimpsed my husband-to-be in the sunlight on our wedding day. No way to know. But what a blessing. And what a gift.

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.