Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

The Random Factor

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Every morning, once I’ve worked the kinks out of my joints, made the bed and done some stretching, I wash my hands and sit down with manicure scissors, clippers, nail file, tweezers, ointment, bandages, wound dressing and moisturizer to tend my fingers. I pick and nip any shreds of dead skin, clip nails that have split or splintered at the corners, file away rough skin patches and inspect for signs of inflammation. Then I treat and bandage any open ulcers and slather on moisturizer, rubbing and wringing my hands over and over until the skin no longer feels sticky.

This is how I try to protect myself from the world—all the inevitable bumps, bangs, cuts and bruises, as well as all the nasty germs that could invade my body through cracks in my skin, inflicting pain and havoc.

It takes time, this daily ritual, sometimes five minutes, sometimes a half-hour, depending on what I did with my hands the day before, how well they have healed in moisturizer and white cotton gloves overnight, and the random factor.

In statistics, random factor analysis is used to determine whether an unusual observation—a data outlier—is caused by random events or some underlying trend.

Each morning, as I clip and nip, I perform my own informal random factor analysis: Did I get this ding when I banged my finger on the kitchen chair? Is this soreness on my pinky from tapping too often on my iPhone? Does this nail-bed inflammation stem from forgetting to wash my hands when I got home after running errands and using the germ-covered keypad at CVS without my gloves? (All random events.) Or is the increased number of recent ulcers due to the extremely cold and fluctuating temperatures these past few weeks? (An underlying trend.)

Trends, such as weather patterns, are a bit easier to cope with, once identified. I just need to dress with greater attention to the forecast. More layers. Don’t mothball the down coat or sweaters quite yet. Keep those scarves and wrist-warmers handy.

Random events are the most challenging because, by definition, they’re random. I have no idea that I misjudged the distance between my finger and the back of the kitchen chair as I reach to pick my wallet off the table until I feel the pain. I can’t anticipate an ulcer on my iPhone pinky when for months the finger has been fine and I haven’t changed my frequency of tapping and texting. I don’t always get an infection every time I use a check-out keypad bare-handed, though I’m beginning to douse my hands in antibacterial hand cleaner as soon as I get back in my car, just to be safe.

You could say that I’m constantly adjusting and adapting my protective behavior as I continue to gather more data points.

But random is as random does. You just can’t anticipate all the bad stuff you’re going to run into every day. Or, to be fair, all the good stuff, either.

So my morning ritual is as much a meditation on my state of being as it is a random factor analysis. Here is where my fingers are today. This is how the rough patch of skin feels before and after I file it down. That is an incipient hangnail in need of trimming before it gets worse. Here is how much dead skin I can cut away to sense more through my thumb. That ulcer still needs a bandage. This one looks like it could go without, finally.

Rub, wring, rub, wring. The moisturizer absorbs into my pores, a silky, invisible film to keep my skin flexible and ready for whatever the day may bring. This is how I try to protect myself. This is how I face the world each morning.

Photo Credit: topher76 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.

Aftershocks

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The tension has lifted here in Massachusetts. The sun is shining, the sky is blue, the trees are leafing, the forsythias are in bloom. Friends and family in Greater Boston who were locked in their homes all day Friday as FBI and police tracked down the fugitive Marathon bombing suspect have enjoyed a beautiful weekend of freedom. Neil Diamond flew to Boston on his own dime to sing “Sweet Caroline” with cheering Red Sox fans on Saturday afternoon, and our boys beat the Kansas City Royals, 4-3.

b_strong_blueAll weekend we’ve been sharing stories of near misses: friends who spent three hours at the Marathon finish line, right where the first bomb was planted, only to leave five minutes before it detonated to catch the T; friends whose apartment overlooks Boylston Street and felt the blasts; another who discovered his home is a few short blocks from the suspects’ Cambridge apartment pipe-bomb stash; a friend who chose not to run this year, who probably would have been crossing the finish line right at the deadly moment.

Surreal is the only word that describes this past week. It feels like we’ve all been living in a Hollywood disaster movie—except it actually happened. There is a collective sense of relief that it’s over, shared grief for the victims and their families, and pride in how Boston rose to meet this horrible tragedy.

But there is also a heightened sense of vulnerability—so many innocents struck by a random, senseless act of violence. And so many tiny decisions that led one person to be in the wrong place at the wrong time, and another, equally innocent, to stay clear of harm’s way.

The reality, however, is that we’re always vulnerable. Life is full of risks, all the time. The chance of being struck down by a terrorist’s homemade pressure cooker bomb is significantly lower than the chance of being struck by a drunk driver or the chance of being stricken by a debilitating, chronic disease.

We compartmentalize our awareness of most risks, because we live with them every day. As long as we don’t ignore risks completely, but take reasonable precautions, we’re undoubtedly better off, because to focus on what-if’s all the time is to become paranoid and paralyzed.

But living with a chronic illness, whether it’s scleroderma or one of a thousand other diseases, brings a sharper, lingering awareness of vulnerability, because it forces you to face your own mortality sooner than you might otherwise.

If you’re managing your disease well enough, that awareness is more like white noise in the background unless you have a flare-up. When something like this past week’s horrific event occurs, the sense of threat intensifies. It’s not only the fear, What if it had been me? It’s also the fear, How would my chances of survival or escape have been further compromised by my illness?

This is not to minimize, in any way, the real losses suffered by the victims of the blasts and their loved ones. It’s just the nature of aftershocks. If I were stronger and healthier, I probably wouldn’t have been quite as frightened, and I probably would have gotten more sleep this past week.

I have no answers to all the what-if’s. I have no idea what I would have done if I had been there. I’m profoundly grateful that I wasn’t. My thoughts and prayers go to all those who lost lives and limbs, and my thanks, to those who saved so many. I hope it never happens again. I fear that it will.

We live in a dangerous world. All we can do, the only thing we can really control, is our focus—to appreciate fully every moment that we have, and never take our lives, however complicated and challenging, or those we love and who love us, for granted.

Image Credit: Boston Red Sox

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.

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.