Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Touch

Good Medicine

· · 2 Comments

Half-way around the world from home, I’m writing at our friends’ kitchen table in their Tel Aviv apartment, watching a lemon sway from the branch of a tree on the neighbor’s patio, listening to the swish and blare of traffic, the wall clock’s soft tick, a distant outdoor chime of Rock-a-Bye Baby, a jackhammer’s clatter.

Al and I have traveled nearly 5,500 miles to get here, partly for business, partly to see his family, and mostly to visit Mindi, our eldest, who has been living and working in Israel for almost six months.

It has taken the past four days for my body to adjust. The trip was, by most travel standards, easy—our flights were on time, our connection a 20-minute walk through cavernous Heathrow. We had minimal turbulence, ample food, excellent service, and our bags arrived with us. But for me, it has been very strenuous.

I haven’t traveled abroad in 16 years. Then it was challenging because the girls were young. Now it’s challenging because I’m getting older, my hands are more damaged, and I don’t sleep as well, even under the best of conditions.

I was prepared, but not. I packed well-organized carry-ons but didn’t realize that I had to pull out my laptop for security checks in Boston and London, which required unzipping and unpacking and repacking and re-zipping twice. I knew we’d have in-flight meal service but didn’t anticipate all of the myriad shrink-wrapped and hermetically sealed food items and utensils that I couldn’t open without Al’s help. I wore soft sweat pants and brought slippers for the plane but realized as we squeezed into our seats on both flights that comfort and coach don’t belong in the same sentence.

All of this took a toll on my body, especially my hands. So many barriers, from the seat belt clips that I had to pry open to the lavatory door’s narrow pull grip. With a current count of eight ulcers, I knew I needed to change all of my bandages at some point along the way or my skin would deteriorate, but I also knew I needed to be meticulous about keeping the wounds clean in the process.

I solved the problem somewhere high over the Mediterranean, using disposable aloe hand wipes to clean my fingers before replacing all the dressings. One of the flight attendants, noticing the mounting pile of bandage wrappers on my tray table, asked if I needed any help. No, I said, I do this all the time (just not at 30-thousand feet).

Sleep was elusive. I avoided everyone’s advice to take sleeping pills because I didn’t want to get groggy and dehydrated. So I dozed as much as I could and caught up over the next few days.

Yes, it was a major challenge. But so worth it.

There is no better medicine in the world than seeing your daughter all grown up, finding her way in a complex foreign culture, thriving. And there’s no better feeling than knowing, despite chronic medical challenges, you can still fly halfway around the globe to see her new world through her eyes. And you’d do it again, in a heartbeat.

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.

Dropping the F-bomb

· · 2 Comments

Whenever I smash one of my fingertip ulcers—reaching for a faucet, reaching for the gear shift, reaching for a doorknob, any time I’m rushing and not paying attention—I curse.

And the only curse that works is the f-bomb. It’s short, explosive and foul. It’s the best way I know to discharge my anger and diffuse the intense, sharp pain.

My fingertip bones are severely resorbed, so the tips are jagged. When I hit an overlaying ulcer, it’s a double whammy of banging a deep sore on the outside and stabbing it from the inside. Even with my bandages, which provide a little cushioning, it hurts like hell.

But oh hell doesn’t cut it.

I also curse when my hands won’t do what I want.

A spoon slips through my grasp and hits the floor. F-bomb.

Coins slide out of my palm and scatter. F-bomb.

It takes five tries to pick the coins off the floor. F-bomb.

I can’t grab a knife from the flatware tray and have to pry it out with another utensil. F-bomb.

It takes ten minutes to align the zipper pull and zip up my winter coat. F-bomb.

I have a battle with shrink-wrap and the shrink-wrap wins. F-bomb.

I drop my cell phone getting out of the car and the back falls off into the sewer (yes, this really happened once). F-bomb.

Sometimes, when I’m cooking a big meal for company and getting tired and things start slipping out of my hands—like a potato I’m peeling or an onion I’m slicing—I don’t simply drop the f-bomb, I start throwing utensils into the sink and slamming drawers and yelling about how the counters are too cluttered and there’s no place to put anything. My family knows enough to stay out of the way.

I try my best not to curse when others are around or within earshot. I don’t want the f-bomb to creep into my everyday conversation and contribute to the decline of civil discourse.

But I hate this disease. Even though I’ve been living with scleroderma for three decades, and most of the time I can manage quite well, it really gets to me some days. I hate the way it’s wrecking my body. I hate how it’s robbed me of activities I love. I hate all the bandages, the ulcers and infections. I hate all the trips to various doctors and all the waiting in waiting rooms and all the medications. I hate discovering yet one more bizarre complication, like the fact that the roots of my molars are resorbing or the time the left side of my face went numb and I thought I was having a stroke and had to go to the ER and learned that I had an inflamed trigeminal nerve that the ER doc diagnosed as trigeminal neuralgia, which fortunately turned out not to be the case. It was “just” a rare neurological issue associated with scleroderma.

There’s no polite way to put this: When your body craps out on you, it sucks. And with a disease like this, you’re stuck knowing there’s no cure, for now, probably not in your lifetime, and even if, God-willing, there is a cure, your body’s too damaged for it to make a difference, and your health is only going to get worse.

Like aging.

When my sister and I were kids, our family used to travel by overnight train from New York to Cincinnati to visit my grandparents every December. Inevitably at the big family gatherings, all the adults would start complaining about their latest physical ailments. We’d sit on the side and snicker to each other, “When are they going to start passing around their X-rays?”

Fifty years later, I find myself engaged in those same conversations with my friends all too often. The older we get, the more stuff malfunctions, breaks and hurts. It’s shocking when it starts. We all know that our bodies are going to give out and we’re going to die someday, but we don’t really want to believe it until our mortality slaps us in the face. I’ve just been battling the inevitable much longer than most of my peers.

So I guess I have something of an advantage in the how-to-cope sweepstakes. But that doesn’t help on days when my house keys slip through my fingers and I drop the package I’m carrying as I try to pick them up and have to take off my glove to grasp the keyring but it’s too cold and my fingers go into a Raynaud’s spasm.

Then the only thing that works is dropping the f-bomb.

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.

Making Stuff

· · 6 Comments

For as long as I can remember, I’ve had cold hands. As a kid, growing up in New York winters, I would play outside making snowmen until I was too numb to feel my fingers and toes. Summers on the Cape, I’d jump in the waves at Nauset until I was blue and my teeth chattered nonstop.

But none of this mattered. I loved to do, to plunge into the world around me. And my favorite means of engagement was through my hands, making stuff. I could do anything with my hands—draw in any medium, do Japanese brush painting, throw pots, make copper enamel jewelry, create tiny origami animals, sew doll clothes and my own, knit, crochet, embroider, needlepoint.

I could also make music, on the full range of recorders; the violin (I was first chair in my high school orchestra and worked my way up to Mendelssohn’s violin concerto); viola; alto, bass and contra-bass clarinet; tenor sax; classical guitar; piano and a little percussion.

When I was about 10 or so, I lay in bed one night, wondering what it would be like to lose one of my senses. I couldn’t decide which I valued more, sight or hearing—but the one thing I knew was that I never wanted to lose touch and the use of my hands.

I could never have imagined the strange shape of my hands today. Decades of severe Raynaud’s have rendered my hand circulation erratic. Scleroderma has bowed and shortened my fingers; the bones have resorbed so much that my hand X-rays look like someone has taken a bite out of each fingertip, and my thumbs are filled with a veritable Milky Way of calcium deposits that erupt through the skin from time to time. I bandage chronic fingertip ulcers twice daily, keep vigil against infections and am constantly reminded, when I try to do something as simple as put change in my wallet at a cash register, that I just need more time than most to do basic tasks.

But I’ve often thought that the fact that I started off with such incredible fine motor coordination has enabled me to continue creating with skill, even as the process is so much harder.

My father had a saying: “Any problem can be solved if you have the right tools.” So this has been my watchword. My drawing pencils each wear colorful triangular rubber grips to cushion my fingers. I’m never without a pair of tweezers, used for everything from picking up beads that I’m threading on jewelry wire to pulling out the bobbin from my sewing machine. I protect my bandages and ulcers with plastic gloves whenever I cook or handle material that’s wet or could be a source of infection.

I can’t play the violin or guitar any more (yes, Doctor, I really did play before), nor a wind instrument, and I find pressing the keys on a normal piano keyboard difficult (even though I still harbor a wish to someday, somehow, learn to play Gershwin).

But I do make music in a new way—through my writing. For me, writing is all about melody, rhythm, assonance and dissonance, crescendos and diminuendos of sounds tied to words tied to thoughts.

And I make visual art through video that I shoot with a simple, lightweight camera and manipulate through the magic of my iMac.

I still miss my hands, even though I can barely remember what it feels like to be normal. Then keep making stuff.

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.