Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

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.

Why I Don’t Do Much Housework

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I like a clean house. And the older I get, the more I hate clutter. Do we really need all this stuff that just takes up room and collects dust?

The clutter issue has become more salient as I’ve struggled to keep our home as clean as I’d like. I used to manage most of the housework myself, years ago, when the girls were still young. Every Friday, while they were in school, I’d clean the house from top to bottom in preparation for Shabbat. I’d dust every tchotchke, vacuum under the beds, mop the bathroom and kitchen floors, the whole works. I was exhausted by the end of the day, when we’d finally sit down for our Friday night meal. But I also felt a sense of accomplishment and renewed calm, with our home restored to order.

This was before I got a full-time job and began commuting to Boston. It was also before my hands simply became too damaged to manage the work. At that point, we hired a cleaning service.

Over the years, we’ve taken a break to save money, only to rediscover that the only way to maintain my cleaning standards is to have someone come every other week to do all the heavy housework. I picked our current service because they use environmentally friendly products and are very reliable.

Still, it bothers me. There is something about not being able to do this myself that feels like failure. I’m sure this sounds silly. Women have striven for years to be free of the drudgery of housework. It shouldn’t be “women’s work” in the first place. (In all fairness, Al does help a lot around the house, with laundry, dishes and yard work, as well as grocery shopping.)

But the reality is, no one will ever clean my house the way I once could. Whenever I get aggravated and try to tackle the stuff that’s still not the way I want it, I end up hurting myself. Even if I wear gloves to protect my hands, I inevitably smash an ulcer or otherwise damage my skin.

Last Friday, when all the workmen who had been tromping through our house for the past two weeks finally finished connecting our new energy-efficient heat pumps and installing triple-pane windows, I looked at all the tracks across the kitchen floor and couldn’t stand to wait for our cleaners to arrive this week.

So I went out and bought a floor mop that sprays cleaning fluid so you don’t need to wrestle with a heavy bucket and wringing out a sponge mop.

This presented several unanticipated problems, however. First there was all the shrink wrap and plastic packaging to remove, one of my pet peeves that requires deft maneuvers to avoid mashing my hands. Then I had to pry open the battery holder with a knife because I couldn’t slide the compartment door open.

Then we came up one battery short. While Al ran to the store right after he got home from work to pick up more AAs (and stay out of my way because I was on a tear), I vacuumed up all the flotsam and jetsam from the window installation. When he returned, I began mopping, erasing every trace of work boots on the kitchen and dining room hardwood floors. This felt great. I’d actually managed to clean the kitchen floor on my own.

But. As soon as I’d finished, I realized my left ankle was sore, and my back, and my joints were acting up. One more reality check. I just can’t do what I used to be able to do.

This is what’s so frustrating. I’m sure it doesn’t really matter if our home doesn’t sparkle.  I know the extra degree of clean is all in my head. I’m grateful that we can afford some help and, in the process, support another woman entrepreneur. I just hate feeling like I have to rely on others to do something so basic as mop my kitchen floor. It’s one more reality of this disease.

So the only alternative is to make it easier for our cleaners to clean. And that means reducing the clutter. I have a long list. But it’s a worthwhile effort, and one I can still manage, without help—to decide what’s really essential.

Photo Credit: twicepix 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.

Blizzard Warning

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The sun is shining, the snowplows are revving and Al is raking two feet of snow off our kitchen roof as I write. Twenty-four hours after Nemo blasted through New England, our street is a canyon of bright white snowpack amidst four-foot walls of plowed drift. Evergreens bow, weighted by mounds of melting snow, while barren hardwoods stand tall and unbroken, spared accumulation of Nemo’s fine, cold powder.

We went to bed Friday night listening to the wind howling overhead. The snow was blowing sideways near midnight. I watched it from our bedroom window, swirling and streaming in the streetlamp’s golden glow—reassurance that the power was still on.

Around five I awoke, unable to go back to sleep. Overnight, true to predictions, the snow had piled more than two feet high. Al’s car, parked in the drive, was half-buried. Only the  yellow cap of the fire hydrant at the front of our lawn was visible. The wind drove snow at a 45 degree angle. Flakes swirled and danced like millions of down feathers in a colossal pillow fight. And still, the power was on.

Once again, we got lucky. Through Tropical Storm Irene, through the 2011 Halloween Surprise, through Super Storm Sandy, through severe ice storms of recent years, and now through Nemo, we’ve had light, heat and hot water. I’m almost afraid to state it and tempt fate.

This has become my constant fear, whenever I hear news of a major storm’s approach: What if we lose power? With extreme weather the new normal, it is now inevitable that strong winds plus precipitation on a large scale will cause massive power outages that can incapacitate for days and even weeks.

At its peak, Nemo knocked out power for 650,000 families and businesses in Long Island and up the New England coastline; that number was halved by Sunday. Still, losing power in a record-breaking winter storm means waiting in the cold for your turn on the utility company’s long punch list. This is what scares me.

Because of my Raynaud’s and poor circulation in my hands and feet, I simply can’t stay in a cold house for long. Well before the pipes might freeze, I will go numb. We have yet to invest in an emergency generator, but if the extreme weather patterns persist, this may become a necessity in a few years.

I hate thinking this way. I used to love snow as a kid. A storm like Nemo would’ve had me itching to run outside and build a snowman, or flop on my Flexible Flyer to slide down the hill in our back yard. I would’ve played outdoors until the snow turned blue at dusk and I lost all feeling in my fingers and my teeth chattered. The next day I would’ve raced out to snap icicles from the eaves and slurp them like popsicles.

As Nemo kicked into gear on Friday afternoon and I walked Ginger in the mere two inches that had accumulated so far, I watched children a few houses up the street slipping and sliding in the snow. It looked like fun.

I chose to live in New England because I love the full four seasons, including winter’s magical frosting of the landscape. I don’t want only to think of weather in terms of the risks involved. Storms are part of Nature’s cycle.

And yet. Now every significant storm has an ominous edge. There were plenty of online jokes about naming this one Nemo, moniker of the little orange-and-white clown fish of Disney’s animated pantheon. But Nemo was also the name of the vengeful, tormented submarine captain in Jules Verne’s 19th century science fiction novels, Twenty Thousand Leagues Under the Sea and The Mysterious Island.

In Verne’s world, Nemo raged against oppression and British imperialism, sinking war ships and rescuing castaways, living by his own law under the seas. The storms that now confront us are Nature’s payback for humans’ destroying carbon reserves and wasting the planet. What we’re experiencing is just a taste of even more severe weather to come, if we fail to act.

I want to believe that we humans are creative, adaptable and capable not only of coping with the severe consequences of global climate change that we’ve brought upon ourselves—but also able and eventually willing, collectively, to reverse the trend, at least for our grandchildren and future generations.

Home generators may be the immediate response to ensuring personal safety during extreme weather. But if we’re really serious about reversing global climate change, we need to take responsibility for much more than our own homesteads. And we need to start now.

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.