Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

Glass Half Full

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I finished this post about an hour before news broke of the bombing at the Boston Marathon yesterday. By comparison, it feels trivial. But I share it here, today, nonetheless, because life goes on. My thoughts and prayers are with all those affected by this insane tragedy. Life is precious. We need to cherish what we have, whatever the challenges, and support each other through the struggles.—EH

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Last Thursday I dropped my iPhone in a glass of seltzer. Fortunately, thanks to its sturdy Otterbox case, it didn’t get ruined. Thanks, also, to a good friend who removed the case (not something I can manage very well with clumsy fingers) and zapped a few hidden drops of seltzer with pressurized air, the phone was thoroughly dried before I used it again.

This is only the most recent episode in a recent spate of dropping stuff. Lately, things seem to jump right out of my hands, leaping to freedom before they crash—or plop—as the case may be.

I’ll pick a knife or fork out of the cutlery drawer, only to watch it spring from my fingers and skitter across the floor. Or my toothbrush will fling itself into the sink. Or the cordless phone will take a swan dive.

It’s quite startling. I have yet to figure out what cues I’m missing, but I suspect it’s due to some kind of nerve damage in my fingers from years of Raynaud’s—a dichotomous mix of lost sensation and hypersensitivity to any ulcerations or skin damage. It’s also a matter of the object’s size and weight—small enough to be picked up with one hand, but just heavy enough to require a firm grip—which I don’t really have any more.

My hands don’t believe it. Relying on decades of kinesthetic memory, they grab, reach, scoop, turn and twist without conscious direction. Of course I can hold onto that knife. Of course I can grasp my toothbrush. Of course I can pick up the phone. Even when I can’t.

In a sense, this is related to the phenomenon of the phantom limb—when a part of the body is amputated, but still feels as if it’s attached and functioning as always. Although my fingers and hands have deteriorated over the past 30 years, I often still operate as if they hadn’t changed. Then I reach the wrong way for something and smash a fingertip because I misjudged the distance, relying on kinesthetic memory instead of visual cues. Or I assume I can complete a task in a third of the time it now takes me, despite repeated experience that my hands just don’t function that efficiently. Or I drop stuff that I think I’m holding firmly, overriding feedback from fingers to brain.

So far, thank goodness, I haven’t done any serious damage. I haven’t broken anything valuable, I haven’t hurt anyone or myself and I haven’t lost anything important—at least, as far as I know. I’m more vigilant when picking up things that are fragile. I use my forearms for extra support when carrying heavy objects. I try not to rush tasks that require dexterity.

But it is unnerving. My hands, damaged as they are from scleroderma, have always been my trusted helpers. I don’t want to believe that they—I—simply can’t do for myself as I used to. I’ve accepted my limitations, to a large extent, but at another level, still can’t.

Dysfunctional, perhaps. All the leaping forks, toothbrushes, keys, phones, makeup applicators, pens and other objects craving to demonstrate Newton’s Law of Gravity may well be vying for my attention, willing me to fully acknowledge the reality I’ve been living with for years.

And yet. There’s a balance to be struck, between accepting limitations and not being defined by them. My fingers’ denial of sensory evidence to the contrary, my mind’s denial that I’m less able than I was before, are what keep me from sliding into a depressed, glass-half-empty view of my life and what the future holds.

Like Archimedes in his bathtub, when my iPhone plopped into the seltzer, it raised the fluid level in the glass. Worth noticing. Worth rescuing. Worth figuring out how not to do it again. But otherwise, not worth much more than a laugh and a sigh of relief.

Photo Credit: EssjayNZ via Compfight cc

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.

Harbingers

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I think it’s spring. At least, it’s supposed to be, according to the calendar. But we should fire the groundhog.

This has been one long, cold winter here in Massachusetts. Our lavender crocuses just sprouted last week, but they’re hiding from freezing night temperatures and sharp winds, petals clasped against the cold, praying for the warmth that’s supposed to come with longer daylight hours. When the sun’s rays trickle into their corner of our backyard garden for a few hours in the afternoon, they gape as if astonished, exposing fuzzy stamens the color of flame, welcoming bees.

I’m slowly exposing my hands, too. Spring in New England has always been my toughest season, a tease of warmth to come, but mostly chilly and damp with harsh, sharp breezes that stir the sandy dregs of road salt, stinging eyes of those unwary.

The cycling from cold to warm to cold again exacerbates my Raynaud’s with frequent episodes of icy lavender fingers and numbness, ulcers that sting as if singed, new sores appearing weekly. The sensation is captured precisely by poet Elizabeth Bishop’s description of frigid seawater in At the Fishhouses:

If you should dip your hand in,
your wrist would ache immediately,
your bones would begin to ache and your hand would burn
as if the water were a transmutation of fire
that feeds on stones and burns with a dark gray flame.

Last year at this time, I had nine ulcers and a bout of cellulitis that took several blasts of antibiotics to cure. But no significant ulcers this season, so far. This is quite extraordinary. I’ve been very vigilant since I discovered a few months ago that I could heal my ulcers and reduce the number of ever-present bandages by wearing white cotton gloves and paraffin hand cream at night—this, a serendipitous solution to the fact that my skin started shredding in reaction to bandage adhesive.

Today, I have only my right thumb in a bandage, mainly because a grain of calcium is slowly emerging through a cracked ulcer. That’s it. I’ve been out and about for the past four days with no bandages at all. Truly amazing. I tote my moisturizer and apply it strategically throughout the day, type at my computer using cotton gloves to protect my skin and generally try to pay attention to what I’m doing so as not to cause any collateral damage to my fingers.

Our new heat pumps have helped, too, maintaining a much more even temperature throughout the house than our old steam radiators ever could. I still feel the cold all too readily, but at least I can quickly adjust the heat for the room I’m in and sense warmth within minutes. This, I’m certain, has aided my hands’ miraculous recovery.

So, even as my fingers are in happy denial, I guess it’s fair to assume that spring is on its way, at last. The weather forecast predicts temperatures in the ‘60s and low ‘70s this week. Slender blades of grass tinge lawns green. Buds mist the maples that line our street with the barest hint of chartreuse and crimson. Children’s bikes and basketballs litter front yards. Long-limbed girls from the nearby Catholic high school’s track team run down the street in shorts and tees, gleaming ponytails abounce. As Al rakes away winter’s detritus, the turned earth smells pungent with promise. Time to switch out my snow tires and at least consider bringing my down coat to the cleaner’s. But maybe not ’til April’s end, just to be certain.

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.

Busy-ness

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When did being busy become the equivalent of being virtuous?

Nearly every day, I find myself in some kind of conversation about how busy we are—working, caring for family, solving one kind of problem or another. Especially among women, how well you can multi-task, juggling a job, childcare, other family duties, care for aging parents, errands, entertaining, housework, you-name-it, has become the way we promote ourselves and size each other up. The busier you are, the more ably you handle more stuff, the better. You can complain about being too busy, but there is always pride beneath the gripe. Of course, if you do all of this while managing your own health challenges, you score extra points in the Superwoman contest.

It drives me crazy.

Even as I let myself get sucked into it.

I can multi-task with the best. I run my own consulting business and our home. For years I did extensive volunteer work on top of commuting more than an hour each way to a full-time job. I raised two daughters while running a college marketing department, taking on community leadership roles and managing my parents’ needs for help as their health deteriorated. I’m the go-to mom when my adult daughters ask for advice or support with decisions big and small. All while doing my best to keep myself as healthy and fit as possible with scleroderma.

There. See? I’m busy, too.

But I want to slow down. In fact, I believe my long-term health depends on it. Working for myself these past three years, setting my own agenda, ditching that exhausting commute, working with clients that I enjoy—all of this helps. I no longer do evening meetings and now use my afterwork hours for exercise or creative hobbies that recharge my batteries. I choose volunteer commitments selectively, focusing on work that’s uplifting, rather than spreading myself too thin over projects with stressful politics.

Even still, I feel out of balance. There’s that voice in my head, urging me to be productive, to not waste time. Idle hands are the devil’s playthings and all that. Our culture’s Calvinist undercurrent runs deep.

And there’s another piece. When I’m still, when I’m not busy doing, making, fixing, there are other thoughts that bubble up—worries about my health, all the what-ifs. What if my scleroderma gets a lot worse? What if something happens to Al? What if he loses his job and our health insurance? On and on.

Healthy or not, we all have these worries. But chronic disease brings an added sense of vulnerability. Easy to avoid it if you keep so busy that the disturbing thoughts can’t surface.

One answer is meditating. Mindfulness practice forces you to sit still, let all those thoughts float past as you continually bring your attention to the present moment—which, 99.9 percent of the time, is actually safe, peaceful and just, well, there.

I try to do this every morning. I try to sit still and breathe. I’m not terribly good at it, because I want to get going with the day. If I can sit for five minutes, I’m doing well.

Occasionally I join a drop-in group on Monday afternoons, led by a gifted friend who is a seasoned mindfulness teacher, and manage to meditate for a half-hour. Afterward, I usually feel refreshed and reminded of the tremendous value of just being in the present moment. And tell myself I need to refocus my day on what really matters, rather than all those to-do lists.

On my desk, next to my iMac, I keep a small pink sticky note with a quote by Marlene Dietrich, paraphrasing her longtime love, Ernest Hemingway:

“Don’t do what you sincerely don’t want to do. Never confuse movement with action.”

Indeed.

Photo Credit: Tie Guy II via Compfight cc

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.

Murmuration Liberation

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“All religious rituals, perhaps like all art, are attempts to gesture toward what cannot be spoken, to invoke it and make it palpable, a sense of the world too immense to be summed up in words without sounding like prattling children.”

Jonathan Safran Foer
New American Haggadah

Passover comes early this year, the evening of March 25. As I write, Al is working on the kitchen, doing the final cleaning and kashering and countertop covering before we switch all our dishes over to the kosher-for-Passover cookware and red-and-green glass settings that were once his mother’s. It’s a lot of work, if you observe all the stringent Jewish laws around Passover food preparation—and the source of much good-humored communal kvetching: If this is the Feast of Freedom, then why do we feel like slaves in the kitchen?

This annual cleaning ritual is just one step in the process of prodding yourself to focus on retelling the story of the Israelite’s Exodus from Egypt. Upending your kitchen, removing all traces of leavening from the home to recall how our ancestors left in such haste that they couldn’t wait for bread to rise, causes you to stop and examine not only your surroundings, but your intentions:

How do you enslave yourself? What weighs you down in your life? What holds you back? What obstacles do you throw in your own path? What burdens can you lay down, freeing yourself to live a more fulfilling life of generosity, gratitude, grace and compassion?

Everyone who participates in the Passover seder is asked to imagine what it would feel like to emerge from slavery to freedom. There are so many ways we imprison ourselves. The ritual presents a formidable challenge, if you take it seriously.

Chronic health issues, of course, create their own form of imprisonment. Scleroderma, at its most virulent, feels like being trapped in your own skin. Other diseases bring their distinctive, cruel pains and restrictions. Our bodies, so complex and miraculous, can fail us in as many ways as we take them for granted.

But the feelings of constraint, the constant struggle against pain and physical limitations imposed by chronic illness, are only the first barriers to overcome—the barbed-wire-topped prison walls. The harder, interior cell to penetrate is the one the mind constructs.

I fight this all the time—that murmuring voice of angst, the one that worries, with each recalcitrant ulcer, whether I’ll get another infection that could land me on IV antibiotics; with each staircase that leaves me short-winded, how much harder it will be to get around in five years; with each additional minute it takes me to work around my clumsiness, how much longer I’ll be able to manage for myself.

I know this doesn’t help. I know I need to focus on the present and all I have to be grateful for. I know that catastrophizing is self-defeating. But the voice still murmurs.

Paradoxically,  the key to unlocking this particular, insidious form of self-imprisonment isn’t to silence that voice, either through self-lectures on the impropriety of self-pity or sheer force of will. The more I try to suppress it, the more the murmuring seeps into my consciousness.

No. The only way to soothe the fears is to acknowledge them. Loss, and fear of more loss, is as understandable and human as it can be emotionally crippling. Chronic disease, whatever its form, brings losses. Giving yourself the gift to grieve what you’ve lost and feel self-compassion for what you’re going through is essential to coping, healing and moving forward.

After all the cooking and dishwashing and hosting and cleaning, after we’ve joined at the seder table with our cousins to retell the Passover story once again, that’s the release I’ll be seeking this year. And the one after that. And the one after that.

Image Credit: Illustration from Vaught’s Practical Character Reader, a book on phrenology by L.A. Vaught, 1902, Library of Congress Internet Archive, courtesy Public Domain Review.

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.

A Mind of Her Own

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Today Emily turns 21. She’s ecstatic. I’m in shock.

How can it be that our youngest daughter is now a legal adult? Everyone says, even if it doesn’t seem that way when you’re bombarded by toddler tantrums or adolescent angst (not all that different), your children grow so quickly. Yes.

Bringing Em into the world involved significant risks and challenges. Scleroderma can cause kidney failure in the third trimester. We had adopted our oldest, Mindi, as an infant, because my disease was too unpredictable to try to get pregnant. Once my health improved and I’d tapered off medication that could cause birth defects, we had to overcome my issues with infertility. Conception, seemingly so elusive, took five tries with the help of specialists.

Amazed to be pregnant after doubting for so long that it would ever be possible, I was on a high for the first two trimesters. No morning sickness, and I reveled in my new-found warmth during the winter, thanks to my pregnancy-enhanced blood supply. But by the third trimester, things got more complicated. Because of my scleroderma, I couldn’t deliver enough nutrition through my placenta, and she (though we didn’t know it was a she) was small for her gestational age. In order for her to receive needed nutrients to fully develop, I would have to deliver early, around 36 weeks, after an amniocentesis to determine if her lungs could handle life outside the womb.

But we never got that far. At 34 weeks, I developed preeclampsia and landed in the hospital for six days. Lying in my hospital bed after Al went home the first night, limp and heavy from the magnesium sulfate drip that was countering risk of a seizure, I thought of Al’s mother, who had died just six weeks earlier from congestive heart failure and complications from two strokes. She hated going into the hospital each of many times over a half-dozen years. At that moment, scared and lonely and vulnerable, unable to move freely, I fully grasped how she must have felt, trapped in a body that she no longer knew.

After a day of observation and tests, which left me feeling ever more helpless, induced labor began. This was not fun. Seventeen hours of increasingly intense contractions later, the doctors gathered around my bed for a powwow. The only way to cure preeclampsia is to deliver the baby, and they wanted to do a C-section. My cervix was still barely dilated, my kidneys were shutting down and my blood was taking more than 20 minutes to clot, so there was no hope of an epidural block. I was also, though I didn’t fully understand in the midst of all that pain and anxiety and exhaustion, at high risk of hemorrhaging. All of this was taking place in the midst of a major March snowstorm (not unlike today’s) that had prevented my wonderful perinatologist from getting to the hospital.

Just at that very moment, Em—always one with a mind of her own—decided it was time to come out the natural way. I had a sudden, extraordinary need to push. My water broke. Less than two hours later, she emerged on waves of forceful contractions that felt like I was turning my body inside out during delivery. I was yelling so loudly that the male medical student who had joined in to observe told me later I sounded like a madwoman.

My placenta snapped during the delivery. To spare me any more pain, they knocked me out with a very powerful general anaesthetic before extracting it. I barely saw Em, swaddled in blanket and white cap, before she was whooshed away to the NICU and I passed out.

When I woke up, I was hallucinating. I saw Al smiling at me over the rail on my bed (this much was true), framed by a vision of Mindi’s Playmobile figures hovering over primary-colored shapes. Later, when I overheard some nurses discussing my IV, I was convinced they were trying to poison me and take my baby away. Al brought Mindi, then only three-and-a-half, for a visit, but I was still too weak to be able to give her a good hug or be much of a mothering presence during this major transition in her own young life.

I didn’t get to meet Emily until the following afternoon. It was late on a Friday. By then the magnesium sulfate had washed out of my system, and I could control my muscles again. I got myself dressed in the mint green turtleneck and rust jumper I’d worn to the hospital and was wheeled over to the NICU to see her.

There she lay in her isolette, all three pounds and slightly less than six ounces, with IV tubes and monitor leads snaked all over her tiny, wrinkled body. Al had already held her earlier that day, so I couldn’t take her out of the clear plastic box-bed a second time. Instead, I put my hand through the side access hole, stroked her downy back and sang to her—Shalom Aleichem, the traditional Friday night greeting that welcomes guardian angels into the home for Shabbat. Afterward, Al told me he had sung her the same melody.

One month later, at four-and-a-half healthy pounds, Emily finally came home. We placed her in her red pram’s detachable bed on the dining room table. There she lay and looked and looked for more than an hour at all the colors—the cream-and-rose wallpaper, the moss green curtains, the crystal and brass chandelier, our admiring faces. So different from the pale hospital setting where she had lived her first weeks.

After I’d regained my strength, I enthused to my rheumatologist that I’d like to do it again. He suggested that might not be such a good idea. “Do you have any idea how sick you were?” he asked. Always good to have people in your life who tell you the truth. It took every ounce of energy I had to parent my two amazing daughters, now, officially, both adults.

Today at 21, Em is a petite powerhouse, a young woman of strength and determination, with a clear goal for her remaining year of college, graduate school and beyond. Smart, beautiful, funny and sweet, she has a gift for words, an analytical mind and a great desire to help others. We chat often, and I look forward to her visit home later this week for her spring break and Passover.

She has blessed us, many times over, by her presence in this world. On this milestone birthday, we have much to celebrate.

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.