Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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New Year, New Hands

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Last Thursday, I finished my 40th dive in the hyperbaric oxygen chamber. My grafts have healed. The Wound Center staff gave me a “certificate of completion” decorated with pictures—a fountain pen and typewritten words, a graphic for all the podcasts I listened to while bandaging up my fingers after my dives, an image of a Fig Newton, my favorite post-dive snack. Everyone signed with good wishes. I promised to come back and visit.

It seems amazing to be through. I still have bandages on my thumbs—the right as it continues to heal and the left, to protect a chronic pit that waxes and wanes. I’m moisturizing the grafts during the day, leaving them exposed to the air so the skin toughens up but remains pliable. I’m learning to interpret the sensations from the flap on my right middle finger. And I’m touch-typing away, thank goodness.

Christmas weekend, I took my daughters to see my sister and her family in the Midwest, my first trip since Al and I traveled to Norway in August. A good visit, anticipated for months, certainly not as strenuous a journey as this summer, but a bit of a psychological hurdle, given how my hands fell apart when we were abroad. I took extra care to protect my fingers, which paid off. No new ulcers, no damage. Just a rotten head cold on the way home, which mostly cleared by the end of the week.

So, here I am, starting 2018 with “revised” hands, all ten fingers. There is adjusting to do. I need to relearn what I can and cannot tackle, given that left index and right pinky are fused at the joint, right middle is stubby like a cigar, and left middle no longer bends at the partially amputated, grafted tip. The grafts have no nerve sensitivity, which requires mindful awareness of what I place where. Most of my fingers no longer move the way they used to. I’ve made an appointment for Thursday to see an occupational therapist in my hand surgeon’s office, to get some exercises to strengthen my grip, increase flexibility and discuss what I need to adapt.

Still, I’m feeling upbeat. I can do for myself again. Even temperatures here in the deep freeze for another week are only a temporary annoyance. Tucking hot packs into my wrist warmers staves off numbness. Staying cozy beneath the covers for an extra hour in the morning, now that I don’t need to push to get to the hospital, helps, too.

I could never have imagined, on New Year’s last, that I would be celebrating having all my fingers today. It’s just as well that we can’t see into the future. Too terrifying. If 2017 has taught me anything, it’s been how to stay very focused on the present, to measure progress in small steps, to be grateful for little victories that add up with persistence, to not let my fears keep me from taking reasonable risks for my health.

So, here’s to 2018. Bring it on. Just let me keep my fingers, please.

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.

Gold Standard

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All those perfect bodies. It’s impossible to watch the Olympics without marveling. Sculpted muscles, tight abs, toned thighs—these premier athletes look every bit like the marble statues we saw everywhere in Italy this summer—except, of course, they are living, breathing humans who accomplish seemingly superhuman feats of strength, coordination, balance, speed, grace.

the-athlet-1423333-640x480The Summer Olympics, especially, always set me daydreaming—what would it have been like if I’d had the ability and training to compete as a gymnast when I was that young and healthy? What does it feel like to be Simone Biles, dancing, bounding and twirling through the air, always landing soundly on her feet?

The gold medalists, especially those who’ve distinguished themselves as Biles has in gymnastics with her extraordinary athletic prowess, are walking Rorschach tests for our imaginations—as well as our biases.

There has been plenty of press regarding the ignorant comments by NBC sportscaster Al Trautwig about Biles’s parents—her biological grandparents, who adopted Simone and her sister when they were very young. “They may be mom and dad but they are NOT her parents,” he tweeted last Sunday. Those comments raised a huge furor, rightly so. As an adoptive parent of our older daughter, I found the initial reporting offensive and appalling. I was very glad that Trautwig not only retracted his statements eventually, but also apologized. Shared DNA is not the defining ingredient of parenthood.

But there is another bias projected onto Biles that has not been flagged—and that involves how she is described in terms of height. Like many female gymnasts, Simone Biles is petite. She stands 4-feet-8-inches tall.

For some reason, however, the sportscasters are compelled to describe her as a “4-foot-8-inch giant.” This is intended as high praise—small in stature, but a huge presence. I get it.

However, my younger daughter stands 4-feet-7-inches tall, and over many years, we have discussed the challenges of living in a society that tends to be dismissive of individuals who are shorter than average. Short stature is associated with being childlike, being “cute” (as in not taken seriously), being less capable of leadership. It’s an insidious stereotype that has no more to do with what an individual is capable of than the color of her skin, religion, gender identity, physical limitations or any other distinguishing characteristic.

By describing Biles as a giant, the sports world is underscoring the perceived irony of such a small woman looming so large over other gymnasts. The implied assumption: better-than equals bigger-than. But why isn’t it enough for Simone Biles to be the world’s greatest female gymnast—period? Why does her height have to figure into her sobriquet? Does anyone dwell on swimmer Michael Phelps’s height when describing his amazing 23 gold medal record? Of course not. He’s 6-feet-4-inches tall.

The Olympics are all about achieving athletic perfection. Wouldn’t it be wonderful if those who set the bar for how we talk about these breathtaking accomplishments strived to set a gold-medal standard for appreciating the precious uniqueness of each individual—rather than marveling at how they’ve defied expectations based on stereotypes. Imagine how that might shift dialogue and perception far beyond two weeks every other Olympic year.

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.

Image Credit: Oliver Gruener

Eyes of the Beholder

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For those of us with scleroderma, especially women, beauty is a touchy subject. In so many ways, our bodies transform against our will, and whatever beauty (whatever that really means) we may once have had slips through the tips of our clawed fingers and the pores of our too-tight faces. It takes courage to face the world, some days. Other days, wrapped in multiple layers against the cold, one can easily feel invisible.

How I understand my own beauty continues to evolve. Over decades, I’ve come to feel more comfortable in my own skin, tight as it may be around my mouth and over my nose, odd as my stubby, bent fingers may look. At least, most of the time. I cannot describe my face as beautiful in the traditional sense, but it is my uniqueness, and that, I treasure.

Each of us needs to make peace with who we are and how we appear to the world, in our own time, in our own way. I have no magic formula. Saying beauty comes from within is much too glib. Living with scleroderma is a daily challenge of will and determined self-confidence in response to intense social pressures to look young and sexy in our society.

This Monday, I found a surprising opportunity to think about beauty in a different way. I was in Manhattan for a business meeting that ended an hour earlier than expected, just enough time to squeeze in a quick visit to the Cooper Hewitt Smithsonian Design Museum, which is featuring Beauty—Cooper Hewitt Design Triennial. Although the exhibit of international designs focuses on aesthetics in everything from fashion to typography, the introductory text gave me pause. Here’s an excerpt:

Beauty varies among individuals and cultures. Strange or damaged forms transgress the norms of beauty, pushing viewers to expand their expectations by encountering forms that are odd, uncanny, or outlandish.

Yes. We do, all of us with scleroderma, transgress the norms of beauty. We push the envelope, forcing others to expand their expectations of what is beautiful, confronting the world around us in our odd, uncanny bodies. Let us revel in that.

Here are some of are my favorite pieces of unexpected beauty from my all-too-quick visit to the Cooper Hewitt. Enjoy.

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Nail Designs, Tsumabeni, 2016

 

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Dress by Sanne van Winden, Suzanne van der Aa and Michiel Schuurman, manufactured by Vlisco, 2015.

 

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Fashion designer Thom Browne Selects: Exploration of reflections and individuality; mirrors and frames from the Museum’s collection

 

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Necklace (2010), Eucalyptus Brooch (2013), Ring (2013) and Honey Bee Earrings (2014) by Gebrüder Hemmerle

 

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Wall Hanging, “Goliath,” designed by Hezichoo Textiles, 2015

 

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Tapestry, “Nightless Nights,” designed by Kustaa Saksi, 2015

 

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My own “wallpaper” created with digital pen in the Immersion Room

 

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.

Gym Date

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chiseled-abs-1230552-640x480Last time I saw my cardiologist, he made the brilliant suggestion that I try to find an indoor track at a local college, so I can keep up my walking practice when the weather gets too cold. I need the aerobic exercise to build up my endurance and stay strong. His idea was a very good one, especially given the past few days, when the temperature here one morning dropped to -16° F —without the windchill.

As it turns out, there just so happens to be a local college five minutes from our home, where Al earned his master’s many moons ago. So that makes him an alumnus and me a spouse of an alumnus, which gives us access to their wonderful recreation facility—including an indoor track. We also get alumni pricing, which is about a third of the cost of the community gym I had joined last year (and barely used).

So, a couple of weeks ago, Al and I went over to the college on a Thursday night for a tour of the facilities. Now, I’ve read about undergraduate institutions building great health and fitness spaces to attract students. This place is no exception. It’s clean, well-equipped, well-lit, with plenty of exercise options, a beautiful indoor pool and an elevated indoor track that encircles the gym. The track is made of some kind of rubber, so it’s easy on your feet. And we get to use the faculty/staff locker rooms. (Given how long it takes me just to tie on my sneakers, this is a good thing.)

We have since joined and made it to the gym three times together, with Thursday being our date night. Al and I both do the track, though he combines running and walking. I also ride one of the stationary bikes. Al is experimenting with the exercise equipment, weights and swimming laps.

I was a bit wary, at first, of being around all those healthy young undergrads. We certainly stand out, with our 60+ physiques and graying hair, amidst all the cute girls with their perfect thighs and bouncing ponytails, and the cute guys with their flat stomachs and strong shoulders. But the front desk staff have been very polite and welcoming, and no one really pays us much mind. We’re just part of the mix.

That’s fine with me. Actually, I find the youthful vibe invigorating. It’s fun to watch the baseball team as they practice hitting balls against wall mats down in the gym as I walk my laps, or the Frisbee team tossing and catching, or whoever else has the space reserved. I draw energy from the young adults who zoom past me or race on the treadmills in the room with all the stationary bikes. And it’s fun to wave to Al as he speed walks or jogs around me.

We both feel better. And it sure beats feeling trapped inside in sub-zero temps. I still hope to keep walking outside when weather permits. I’ve also found a great Pilates studio for full body workouts once a week. But it’s nice to have a good gym buddy, too—especially when he’s your honey.

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.

Image Credit: Thom W

Into the Freezer

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Okay, okay, it’s winter. I get it. Those unseasonably balmy December days are a distant memory. The temperature is dropping, the wind chill is rising, and it’s downright cold outside.

photoFive of my fingers are in bandages, one infected ulcer in my left middle finger has required antibiotics for more than a month, and it takes me forever to get going in the morning and to bed at night because of all the hand care.

But I refuse to give in to the weather. Forewarned is forearmed. Friends in Chicago have been telling me about the frigid temperatures there, and it was only a matter of time before the Arctic Freeze came our way. So this past weekend, I found a new pair of mittens with all the right qualifications: lightweight, thermal insulation, with cozy channels for my fingers like an interior glove, suede feel for driving, soft, easy to manipulate. A big score.

I also found a new winter hat (it helps that everything warm is now on sale). It’s one of those fake fur jobs, like a fuzzy bomber’s helmut, that covers my neck and ears and wraps under my chin. I did not buy this for looks. It is far from flattering, given my narrow face and long nose. But no matter. It’s definitely a good addition to my other winter gear, especially when paired with a snug wool hat underneath. It functions like a hood, better than the oversized one that came with my warmest winter coat.

So, the only item left on my list is a pair of insulated winter boots. I’ve somehow managed to go without for a long time, relying instead on a pair of cleated overshoe boots for really bad snow and ice. But they don’t work for driving or city walking. And my rain boots, made of rubber, make my feet sweat when I use them to drive, which only causes my toes to get chilled if I then walk outside.

It’s a lot of work, all the gearing up to go out. Reminds me of when I was a kid and my mom made me wear snow pants over my skirts for school, the kind that had clip suspenders to hold them up. I hated those snow pants. They made my skirts bunch up at the crotch. And those old red rubber boots, the kind with elastic bands as button loops. Clip-on mittens. The works.

Even still, I would play outside for hours in the snow, building snowmen, sliding down the back hill on our old Flexible Flyer, making snow angels. I’d play until my teeth chattered and my fingers went numb. For a healthy little girl, warming back up with a cup of hot chocolate was half the fun.

Now I have to force myself out the door just to walk in this weather. But once I’m all bundled up, I still love the fresh, crisp air, especially after a snowfall. I love the transformation of trees to Belgian lace. I love seeing all the critter tracks, knowing who was in our yard or up the street, otherwise unseen. I love the stark winter light and the way dusk turns snow blue.

So, here’s to you, Old Man Winter. Much as I dread your annual arrival, it wouldn’t be the same without 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.