Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Touch

Get a Grip

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Last week, a small, black dot appeared in my right eye. No matter which way I looked, the dot moved with my eye, right in my line of sight. I figured it was a floater, one of those annoying little bits of vitreous gel that break away from your retina as you age, liquify and cast a shadow inside your eye. Nothing to worry about.

But it was in the way when I tried to read. And I’d never had one before, and its sudden appearance was unnerving. So, after putting up with it for a few days, I did some research and realized that this sudden onset required a check-up to be sure I wasn’t at risk for a retinal tear.

Of course, because I waited until later in the week, my optometrist was away for the Fourth of July weekend. It never fails that something odd and worrysome happens to me when it’s Friday night or a holiday.

Fortunately, I was able to get an appointment with another good eye doctor for late Friday afternoon, and he did a thorough check of my eyes from every angle. And, of course, the little dot had vanished. Just like that weird clicking noise in your engine that goes silent as soon as you bring in your car for a service check.

But he took me seriously, anyway, diagnosed it as an “incipient vitreous detachment” and told me to have a follow-up with my own optometrist in a month. And, he warned, if you see any more floaters, you need to be checked right away, because the vitreous gel could be tugging at the retina around the optic nerve and cause a tear. If you have blurred vision, see any sparks of light or have pain, you need to be seen immediately. The longer you wait, the greater the risk of permanent vision loss.

Necessary advice, but not great words for the anxiety-prone. So, naturally, on Sunday, I started noticing more floaters in my right eye. Not solid black ones, like the unwanted visitor that appeared last week, but pale, ringlike apparitions swimming around whenever I looked at the sky or a page in a book or my computer screen—like the amoebae you see in a drop of water under a microscope in high school biology, ghostlike, barely visible, until you know what to look for.

I thought, they’ve been here all along, and you’re just noticing them because you’re paying closer attention.

I thought, they’re new since last week and you’re going to have a retinal tear when you’re away on vacation.

I thought, this is ridiculous.

I thought, now you know what to blog about this week.

I thought, call your optometrist first thing Monday morning.

I took Ginger for a walk and made a nice summer dinner of gazpacho and a broccoli-rice-chickpea-carrot salad, with gorgonzola cheese and craisins, to take my mind off my eye.

Just as I finished cooking and turned to put the salad in the refrigerator, the bowl slipped from my grasp. Half the salad spilled on the floor. I dropped the f-bomb about a dozen times, then decided that the floor was clean enough, follow the 10-second rule of contact, the vinegar will kill any germs, and quickly scooped up as much as I could, put it back in the bowl and invited Ginger to lick up the rest. Which she did, with enthusiasm.

My meditation teacher says the one thing we can count on is that everything changes. I can’t keep the floaters from appearing in my eye. I can’t always keep a grip on a bowl full of food. I might have more vision problems on our Maine island vacation. It’s scary. Scleroderma is scary. Life is scary.

All I can do is give myself a hug, take a deep breath, pay attention, and deal.

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.

Heat Wave

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In India, “cold weather” is merely a conventional phrase and has come into use through the necessity of having some way to distinguish between weather which will melt a brass door-knob and weather which will only make it mushy.
—Mark Twain, Following the Equator

It’s been extraordinarily hot in India in recent days, and here in Massachusetts, as well—not hot enough to melt brass door-knobs, but close. Temperatures in Delhi neared 109 degrees Fahrenheit over the weekend. We weren’t that far behind. I was in Cambridge on Thursday, and my Prius recorded 99 degrees outside around 7:00 p.m.

Normally, I enjoy hot weather. Summer is my time of year. My Raynaud’s quiets down, and my hands are comfortable most of the day. My ulcers heal. But last week’s record-breaking heat wave was too much, even for me. I hardly ever break into a sweat, but I was perspiring rivers.

We New Englanders are fond of saying if you don’t like the weather here, just wait a few minutes. Not so last week, when the heat wave locked in for nearly three solid days. I was grateful to be in air conditioning, which I usually can’t stand.

I used to work in an office that was so cold in the summer, those of us with slighter builds would walk around in heavy sweaters and, sometimes, coats. What amazed me (to put it mildly) was that we had to put up with it. Some of my co-workers had heftier physiques and thrived in the cold. Some were men, who just seem to burn hotter than women (and who always, especially the heftier variety, seemed to be in charge of the computer program that ran the heating and cooling system). Some had normal internal thermostats, unlike myself. Whatever the reason, the majority didn’t want it any warmer. Some complained it wasn’t cold enough. This, despite the need to conserve energy and finances. The shivering ones among us were told to put on sweaters and deal. Infuriating. One of the many reasons I’m glad to be working for myself, now.

When you have severe Raynaud’s and finger ulcers, air conditioning isn’t just a nuisance. It hurts. More than winter’s chill, because you can’t escape the cold in the space where you need to do your work, keep your appointments or shop for food. Your blood vessels contract and your ulcers smart like crazy.

I always carry layers with me in the summer—a sweater and my Wristies, which are great fleece hand-warmers. This usually does the trick. But it’s a constant balancing act, because my hands can turn blue even if it’s in the ’80s and a breeze starts blowing. Summertime is all about managing relative temperature changes, more than absolute temperature. Except above 90 degrees.

At home, we have no air conditioning, just ceiling fans and window screens. Al is fine with it, concerned for my health and glad to save money on our electric bill. Our daughters both grew up with no AC and understand my issues with staying warm. For most of the summer, this works well—except on days like the end of last week.

It was so hot (how hot was it?) that I went to the grocery store without a sweater to protect me from the freezer section. I never do this. I hate grocery shopping because the stores are so cold, they make me feel sick from numbness. It was so hot that I had to put my Aquafor ointment in the refrigerator so it wouldn’t turn to soup when I squeezed it onto my finger ulcers. It was so hot that I blasted the AC in my car at 68 degrees and directed the vents onto my face and neck to clear my logy brain.

Today, we’re back to normal, whatever that means with global warming on the rise—another rainy June day, thunderstorms, temperatures in the ‘70s. Later in the week, it’s supposed to creep up to 90 again. It’s going to be an interesting summer.

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.

Zen and the Art of Saori Weaving

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Back and forth, back and forth, I slide the shuttle that holds the bobbin that’s wound with the thread that creates the weft that fills the warp that blends into fabric I weave by hand, to make up my scarf as I go.

Tonight is my fourth Saori weaving lesson. So far, I’ve learned how to wind my warp (the long, vertical threads that define the width and lengthwise pattern for my scarf), thread one end of the warp through the reed (the metal comb that holds each thread in place, in the order I define), thread the warp tails through the heddle (two rows of wire guides that divide the warp, so one set of alternating threads moves up while the other moves down), wind a bobbin with weft fiber, and pass the weft shuttle horizontally through the warp, shifting the heddle with foot peddles and beating the weft into place. I’ve also learned how to change weft bobbins, how to pick up a second weft color freestyle and how to add “treasures”—slubs of fiber inserted at random for color accents.

It sounds complicated, but it’s actually quite intuitive, once you get the feel of it. And feeling is what Saori weaving is all about.

This modern Japanese weaving method, created by Misao Jo in the late ‘60s, nurtures individual expression and creativity. Saori looms are simpler to thread and manipulate than traditional looms, and they have adaptive attachments to facilitate weavers with disabilities.

Last week, my instructor, Mihoko, added a narrow shelf to my loom so that I could slide my wooden shuttle back and forth without having to hold it—an advantage when my hands get tired. I use a small pair of tweezers that I always carry to manipulate threads in-between the warp. Mihoko helps with knot-tying and other tasks that I find too difficult. The loom is easy to understand, and the parts take little pressure to maneuver. Nothing hurts.

But what I like the most about this new-found art form is the way you can do just about anything with the fibers, within the constraints of interlocking threads. You can leave gaps in the warp or the weft to create an airy pattern. You can interlace new colors and tufts of fiber or cloth or whatever other kind of material you want, so long as the warp is strong enough. You can break a warp thread—by accident or intent—and weave knotted tails of your repaired warp right into the piece.

Mistakes, imperfections—these are what make the fabric personal, unique and fascinating. Accepting and encouraging exploration and individual vision is the art form’s core philosophy. In Saori weaving, flaws don’t exist.

It’s a welcome break from my daily worries about how I’m going to balance my writing and health and all the necessary hard work of building a consulting practice. And a great reminder of the value of taking risks, making mistakes, and staying clear and focused about what’s important.

Tonight, when I pick up where I left off last week, I’m going to shift the weft from dusty roses to slate blues. I’m going to play more with free-style design and whatever else occurs to me in the moment. When I weave, I’m totally focused on what’s right in front of me, figuring it out as I pass the shuttle and shift the heddle. I can only understand the pattern as I make it happen. And I’m doing it with my own two hands.

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.

What Did You Do to Your Hands?

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Scene One:
I’m buying a slice of pizza at a luncheonette across from Boston Medical Center before I drive back home from an appointment. As I fumble with my wallet, the middle-aged man behind the counter notices my five bandaged fingers.

“What did you do to yourself?” he asks.

“Oh, I get ulcers,” I say, giving my standard explanation.

“Does that hurt?”

“Sometimes, if they get infected.”

He nods and hands me my change.

 


Scene Two:
I’m taking my first Saori class to learn this fascinating Japanese weaving method that encourages free-form creativity and uses looms that accommodate people with disabilities. The young son of one of my new classmates comes up to greet me. He loves to run around and say a loud Hi to everyone when he’s not weaving wonderful fabric. I shake his hand, and he pulls back. Later, I offer him my hand again. My Raynaud’s has kicked in, and my palm is a mix of indigo and fuchsia from haphazard blood flow. He stares and says No, frowning and shaking his head as he steps away. I believe I’ve frightened him.

*   *   *

June is national Scleroderma Awareness Month. It’s the month for walkathons to raise money for research, ramped-up efforts to publicize scleroderma’s devastating impact and continued lobbying for NIH funding of scleroderma research to find a cure.

All of this is important, focused work. But I wonder. How do you really get anyone to care about one more way that our bodies fail us, unless they have a vested interest? This time of year, there’s a race or walkathon or bike-athon for some disease every weekend, every cause has its own colored ribbon symbol or rubbery message bracelet, and Congress is still gridlocked over cuts in domestic spending. Not to mention that nobody pays attention to anything in front of them any more, just the alternate reality of their smartphone universe.

As part of its awareness campaign this year, the Scleroderma Foundation has developed a social media strategy to encourage patients to share personal stories about scleroderma and to create a video story collage that they plan to send to Washington lawmakers in the fall. I hope it works. For me, the art of storytelling remains the most viable means of building awareness, a primal way we connect as humans. But it requires a willingness to speak up and a willingness to listen. Neither are easy to come by for a disease like scleroderma.

Before I started writing this blog in January, I had a very hard time talking about my disease. In fact, I’ve been silent about it, for the most part, except when sharing with very close friends and family, for the better part of three decades.

When asked that all-too-common question by curious cashiers (the people most likely to ask, it seems)—What did you do to your hands?—or its variants—Did you cut yourself while cooking? Did you prick your fingers with a sewing needle? Did you stick your hand in a lawnmower?—I used to demure and just say I have sores. Now I say I have ulcers, and if I think the person is genuinely interested, I’ll explain I have scleroderma.

Responses range from compassionate concern to flickering interest in freakishness—the latter, I think, veiling the true reaction so powerfully expressed by the young boy I met in my weaving class: my hands look really strange and scary.

This is the hard truth of scleroderma. It’s rare, it defies easy explanations and it’s disfiguring in a way that others find threatening to their own body image and sense of well being.

It’s hard to talk about. It’s hard to draw attention to yourself, or more attention to yourself, and say, hey, I have this weird disease that makes my hands look like claws and my face like a mask and has screwed up my lungs and digestion and God knows what else.

Honestly, I just want to be known for who I am, not for this disease I live with.

But what I’ve come to understand and am coming to embrace is that scleroderma is a part of who I am. There’s no getting around it. I have this fucking disease, and I’m stuck with it for life. Which is why I’ve begun, finally, to write about it, tell my stories and try to make some sense of it all.

I have no awareness agenda. I am aware, however, that it’s important to get past the shame and embarrassment of living with a disfiguring chronic illness and share this journey with others who want to understand. This blog is my medium for that message. And maybe the next time a stranger asks what I did to my hands, I’ll tell them my real story.

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.

Stream of Consciousness

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It’s after 1:00 a.m. and I can’t sleep. One of my ulcers, that stubborn one near the tip of my middle left finger, won’t stop smarting. I try shifting positions, rubbing my hand, warming it under the pillow. Sometimes the pain is caused by a Raynaud’s spasm and eases as soon as my blood flows more freely.

But not tonight. I have to get up and redo the bandage. I don’t want to. It’s chilly in our bedroom, because I’m a fresh air freak and left the window cracked and it’s windy outside. But the ulcer stings and I can’t sleep. So I pull myself out of bed, grab all my hand stuff (bandages, Aquaphor ointment, Sorbsan dressing, cotton swabs, manicure scissors) and go into the bathroom so as not to wake Al (even though an overhead thunderbolt won’t disturb his slumber), turn on the light, cut off my bandage and redo the dressing.

This works, thank goodness. I must not have used enough Aquaphor the first time to salve the sore. Or maybe I didn’t cover the ulcer with a large enough piece of Sorbsan, an ecru-colored, felted material made of processed seaweed that binds with the ointment to create a gel-like cushion of protection. Or maybe it was the cheap CVS fabric bandages I use at night, which have some kind of waterproof coating that can irritate on occasion. I’m using my good, soft Coverlet bandages for this round. Not worth the night-time rationing routine.

So I go back to bed, snuggle under my blankets. And am wide awake.

Maybe it’s because I had to get up, even though my ulcer has finally quieted down. Or maybe it’s because I was writing well into the evening, eight hours of solid composing at the computer, working against a deadline to finish a client’s web content. Too much light from the computer screen before bedtime can affect your ability to sleep, I’ve read.

Maybe all that typing is why my finger was irritated in the first place. Except I don’t use it to type. I’ve become a master at touch-typing with only the fingers that can stand the pressure—and since I use a Mac wireless chiclet keyboard, the pressure is very light.

Maybe it’s because I’ve been immersed in words all day. When I write, I slide into a zone where an hour or two will disappear as the words fly from my mind, through my fingers to the keys onto the screen, and I won’t know what time it is. Even when I’m finished writing, the words whirl in my head, narrating story lines, fantasies, worries, what I have to do tomorrow, what I forgot to do today.

I lie in bed and the words swirl and swirl, until I remind myself that everything I’m thinking about will still be there in the morning when I wake up. I pour all the words into a large square box—this one is sea-foam green—close the lid, lock it and put it on a high shelf in the back of my mind where I know I can access it tomorrow.

Usually this works. Sometimes it doesn’t. Tonight, with God’s grace, it does, and I fall asleep. In the early morning, when my dreams are so sharp that I’m certain they’re real, I’m convinced I’ve been awake all night.

The sun shines through our bedroom shades, then slips behind a cloud. Wind puffs the curtains of the one cracked window. Half an hour after my cell alarm vibrates, I realize that I did sleep, for six hours, after all.

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.