Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

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.

Salt and Pepper

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Next month, I turn 59. I’ve reached the stage when I appreciate it if people think I’m younger. One of Emily’s college friends was recently surprised to find out I am not in my mid-40’s. This felt very good.

But twice this past week, I was mistaken as eligible for a senior price break—meaning 65 or older. Now, I’m sure the guy (both times about 30-something, must have guessed I was his mother’s age) thought he was doing me a favor. And both times, the guy made an assumption without asking.

At first, I thought it was just a fluke. The second time, I was really annoyed—insulted and perturbed. What is it about me that gives the impression I’m already a “senior”? (Of course, there is a corollary—if I look like a senior, that’s bad. More on this in a moment.)

The first time, while Al was out of town, I went to the movies by myself on a Saturday night to see director Michael Haneke’s award-winning Amour, a poignant, brutally frank portrait of an elderly Parisian couple whose cultured life unravels as the wife succumbs to a series of strokes. Maybe it was because I was going to a film about aging, maybe because I was alone, I don’t know, but the cashier automatically gave me the three dollar senior discount.

Initially I thought I somehow got a matinee price, which made no sense. Then I realized his mistake. Irked and a bit bemused, I decided to keep the discount. If he was going to size me up so inappropriately, I reasoned, I wasn’t about to shell out three more dollars to correct him.

I’d forgotten the incident by end of the week. Then, the same thing happened. I was at a national writer’s conference in Boston on Friday, having gotten there in a major snow storm and just made it to the registration booth in the cavernous Hynes Convention Center minutes before the first session was to begin. One of the conference staff guided me from the short queue to one of several empty stations. But this one was specifically for seniors. And this time, I spoke up loudly.

“I am not a senior citizen!”

“That’s okay,” he said, “it doesn’t matter.”

Well, it mattered to me. Much as I would have liked the steep discount in the admission price, there is no way I would have tried to finagle a lower fee, even if they hadn’t required proof.

Later, when Al picked me up from the train, I recounted my experience. He laughed.

“It’s not funny!” I protested. “This is when you’re supposed to tell me I don’t look a day over 30.”

“I was thinking you should have tried to get the discount,” he said, still smiling to himself.

I was not amused.

Several days later, I still feel the sting of mistaken identity. Scleroderma has aged me—fewer wrinkles in my forehead and around my eyes than most women in their late 50’s, but deep grooves around my mouth. Usually I’m no longer self-conscious about this, but the week’s events felt like a slap.

At the same time, I’m also questioning my angry reaction to the idea that I might look older than I am. It’s a cultural, ingrained bias: by definition, older women look ugly and undesirable. Not anything true. Ugly, of course, in our society, means diverging from youthful perfection. Which is why scleroderma is such a cruel disease for women, in particular.

But aging, in and of itself, is the natural order of life. And it brings its own kind of beauty. Yes, I’m trying to convince myself as I write, but I actually do believe this more and more, though it’s been hard to accept the physical transformation as my estrogen supply has dwindled.

I don’t dye my hair because I like the way my dark, dark brown is now shot through with silver—salt-and-pepper like both of my parents. I’m still fairly trim and spry for my age and, especially, my medical challenges. I dress as well as I am able. I’m mostly comfortable in my own skin, abnormal as it may be.

That level of self-acceptance is the true source of beauty. I’ve always admired older women who take care of themselves and radiate wisdom, compassion and clarity. It gives them an amazing inner glow. That’s my goal, in any case.

But I’m not fully in synch. Scleroderma has accelerated my biological clock, so my world experience hasn’t fully caught up with my body’s aging.

This is how I sum up my decades, so far:

In my twenties, I thought I had all the answers.

In my thirties, I realized I didn’t.

In my forties, I realized it didn’t matter.

In my fifties, I’ve been putting it all back together.

So my sixties should be great. Just don’t rush me.

Photo Credit: Portrait of an Unidentified Woman, Studio of Matthew Brady, c 1844-1860, Library of Congress PPOC

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.

Soloing

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One of the scary things about having a chronic disease is wondering what will happen if the people you love and depend on are no longer there. Many cope, living on their own. I have great respect and empathy for those who do, because it’s hard and exhausting to deal with all the aspects of managing your health by yourself.

For the past 10 days, I’ve had a taste of that experience, as Al has been away in Israel visiting Mindi, our eldest. Last year we made the trip together to see her; this time around, we had to economize, and since it’s very strenuous for me to travel that far alone, Al made the trip by himself. As I write, he’s in the air, on his way home from a great father-daughter adventure. I’m glad they had a wonderful visit, and I’ll be glad when he gets back.

I’ll admit, I was anxious about his leaving. In the 28 years we’ve been married, he’s traveled abroad a few times, but I have always had one or both of our daughters here with me. So this has been the longest stretch of time that I’ve had to manage by myself since I was diagnosed nearly three decades ago with an autoimmune disease that turned out to be scleroderma.

Friends have been a great help. We had a messy snowstorm the first weekend Al was away, and our good neighbors dug me out. I had several back-up contacts in case more bad weather swept through, but we lucked out with just rain and snow flurries that quickly melted.

I joined other friends for Shabbat supper on the two Friday nights during his absence, which helped break up the week and made for good company. I went to our synagogue’s Purim party. I took my regular evening Pilates and dance classes, and joined friends for weaving. I had plenty of work to keep me busy. I drove to New York to see our younger daughter, Emily, at her college this past Sunday.

So all of this has made for a very full stretch. But I also managed to injure my left wrist. Every time Al has been abroad, it seems I mess up one of my joints. I don’t exactly know how I did this—probably from lifting things I don’t normally lift, opening boxes or jars I usually hand off to him, trying to shovel the slush off the back walk instead of asking someone for help, or some combination thereof.

I saw my rheumatologist at Boston Medical Center for a regularly scheduled appointment last Thursday, and he thought I had developed some tendonitis. I’ve had my wrist in a brace for nearly a week, and today is the first day it feels close to normal.

Yes, thank goodness, my body does heal, even when I’m frustrated and impatient. But I’m also tired. All the tasks that you share in a marriage add up quickly when you’re going solo. Anyone who finds herself suddenly without a partner, by choice or circumstance, knows this all too well. When you have chronic illness as an extra partner, the fatigue factor intensifies.

This is what I’ve learned over the past 10 days:

Sometimes it’s nice to have the house to yourself and do everything exactly as you want, without having to negotiate. I’d be lying if I didn’t admit that I’ve enjoyed having my own space for a little while.

I can definitely manage on my own if I have to. This is reassuring, to the extent that I’ve had nagging doubts as my health has gotten more complex.

Next time, I’ll need to rethink how much help to ask for, what I can leave go and what is absolutely necessary. It’s not worth hurting myself or getting overtired to “get stuff done.”

I miss my husband. I’m glad he’ll be home soon.

Photo Credit: Funchye 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.