Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

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.

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.

Skin Deep

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There are some bizarre advantages to having scleroderma. For one, I don’t have as much body hair as I used to, so it take much less effort to shave my legs, and I hardly ever need to shave under my arms, which makes summertime grooming a snap.

For another, although my facial skin has loosened with excellent medical care and time, thank God (within the first five years of my disease, my face became so tight that I was having some difficulty blinking my eyes), I still have relatively few wrinkle lines. Whereas some women pay hundreds of dollars for collagen creams that plump up their skin, I have more than enough collagen to go around.

Which isn’t to say that I don’t fret about my appearance as much as most other women my age. In a culture that values youth and physical perfection, where magazine ads feature models with Photoshopped features that defy wrinkles and flaws, I am quite conscious of the ways that scleroderma distorts my face.

There is the fact that my nose—generous, to begin with, like my father’s and his father’s—has narrowed and looks and feels pinched. There are the red, blotchy telangiectasias (dilated capillaries) that speckle my nose and dot my right cheek. There are my droopy eyelids, which have fallen over the years due to thickening. There is the asymmetry in my facial muscles, so that the right side is slightly weaker than the left, causing me to smile a bit lopsided. And there are the deep furrows around my lips, resembling a cinched purse.

Most of this I can address with some artfully applied makeup. A couple of years ago, I discovered Arbonne products, which are vegan, extremely lightweight and moisturizing, and use a wonderful color palette that complements my skin tone.

But my deep mouth creases are another story. When they first developed, around the time I was approaching menopause, I was, quite frankly, horrified. This sounds shallow, I know. There are many other, much more horrible things that can happen to you than to develop ugly mouth wrinkles. And yet, self-conscious me hated them and wanted to do something about it.

So I consulted with my rheumatologists and a couple of specialists. A plastic surgeon advised me not to frown or look down, because it exaggerates my creases, and suggested Botox. The idea of injecting a substance that would relax my face into a mask seemed ridiculous, so I passed on that (and him). A cosmetic dermatologist suggested a more promising alternative, injecting hyaluronic acid (HA), a natural filler used to smooth out “puppet mouth” (those long creases that run from either side of the nose to the chin), crow’s feet and other facial flaws.

Al was supportive, though he assured me I looked fine the way I was. He understood how I struggle with the way scleroderma has distorted my body and was willing to go along with my experiment. After doing a test of HA on the inside of my arm to be sure I wouldn’t have an allergic reaction, I went ahead and had the procedure.

This was not fun. First, the cosmetic dermatologist marked the worst creases with a felt-tip pen. Then, after numbing the skin, he stuck a very sharp needle beneath each line around my mouth to fill the furrows with HA. It hurt like hell. He gave me a stress ball to squeeze, which didn’t help much. Neither did the anaesthetic. I quipped how we’ll do anything for beauty, and he just nodded. Of course. I wondered what he really thought of me and all the other women who came to him, in vain, to try to reverse the aging process.

As expected, the skin around my mouth reddened and swelled for several days (I did this at the end of the work week, so most of the evidence would be gone by Monday morning). As the swelling receded, I checked my reflection frequently. Were the furrows gone? Did I look like my younger, healthier self again?

Alas, as weeks passed, I realized that all I’d gained were small lumps where the deep wrinkles had been. The effect wasn’t smooth and youthful. In fact, the HA caused the skin around my mouth to feel a bit tighter, because of the extra filling. When the substance fully absorbed, after about five months, I was relieved. No one ever noticed the difference (or if they did, they never commented), I could open my mouth more readily again, and we were going to save a ton of money.

And, at the risk of sounding Pollyannaish, I discovered a much wiser, free solution: My mouth furrows disappear when I smile.

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.

Butterflies and Baseballs

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I’m surrounded by butterflies—sapphire Blue Morphos, frilly orange-white-black Lacewings, black Cattlehearts splotched red and white, bark-colored Owls flashing camouflage yellow-black eye-spots. They flit and flutter from orange and pink kalanchoes to a stand of rotting bananas to green cinderblock walls to more delectable flowers, sipping nectar through wiry black proboscises, wings beating as they sup.

It’s warm and humid inside The Butterfly Place in Westford, Mass., the perfect environment for butterflies and a great place for perpetually cold me on this crisp spring day that is my birthday. I snap digital photos, trying not to drop the camera, trying not to step on the Blue Morpho that has settled on the ground or the tiny, wingless birds that skitter under green foliage. One butterfly alights on my hand, briefly; another, on my sweater and crawls upward, staring at me with bug-eyed intensity until I shake it off.

A black butterfly shoves another off a flower, and I wonder how much I don’t know about these beautiful creatures. The Blue Morphos swirl in packs while other species fly alone. There is constant motion and competition for food. And there are butterflies with broken wings. This amazes me. I always thought a broken wing meant certain death. But, no, there are dozens with damage, still feeding and flying. I hesitate to take their pictures, wanting only perfection. Then I realize, how ridiculous. Beauty isn’t defined that way.

Later, I wander through exhibits in Lowell’s American Textile History Museum, fingering fabric, trying my hand at weaving on a small loom, learning how much labor went into making linen, wool, cotton and silk over centuries. I think about how grateful I am to be living here, now, and wonder how I would have survived—or not—in earlier eras, when so much work depended on manual dexterity and physical stamina.

I learn about cellos made from black carbon mesh and how many years it takes to grow organic cotton with natural color variation. And I learn about baseballs—how the cork and rubber pill is wound with 219 yards of three types of wool of specific, varying ply and color, plus a final 150 yards of white cotton-polyester yarn.

It’s the wool that gives a baseball its resilience. When the ball is struck, it wraps partly around the wooden bat, then snaps back into shape as it sails across the ball field. That’s how baseballs stay round, though bashed over and over.

When I get home, I notice a baseball lying on our back deck, hit there by one of our neighbor’s kids. No broken windows or smashed shingles. The ball is a bit smudged with dirt. I’ll toss it back when I get a chance, as I have many times, and watch it land with a soft thunk in their yard.

I’m 58 years old. I’ve had scleroderma for three decades. I’m glad to be here.

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.