Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

travel

Blue Sea Glass

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How is it that vacations always end too soon? Just 24 hours ago, we were arriving at the ferry dock in Portland, Maine, back from a week on a lovely, remote island in Casco Bay. The sky was periwinkle, the breeze stiff. As we’d sailed to the mainland, our captain pointed out a half-dozen porpoise riding the tide, hunting fish. I never was quick enough to glimpse them, but I heard one cackling as it dived over the waves.

For eight days, Al and I slept in, took walks every afternoon and went to the beach late, when the sun wasn’t searing hot. We read and I wrote and sketched. We sat for hours watching the terns fly high over the water, then nosedive into the waves, snag minnows and pop back into the air, gulping their silvery catch as they flapped into the headwind to reconnoiter.

And we collected sea glass. Mounds of it. Mostly different shades of white with a tint of lemon or lime, a tinge of aqua, a hint of lilac; also beer bottle browns and greens.

I’ve been gathering sea glass since our now-grown daughters were little and we would scour the beach, holding hands, singing and skipping over surf. Finding even one piece would be cause for a little dance. Here, though, sea glass was bountiful. So the search was on for a sea gluncker’s treasure, cobalt blue.

From our first trip to the beach, the day we arrived, I was hunting for blue sea glass. A great meditation, especially since I was sick with a horrid cold when we left home, hacking and sneezing. And totally pissed off, because, of course, you’re not supposed to be sick on vacation, and I caught it from Al, who had come home sick the week before and missed several days of work, as a result. Plus, after my recent vitreous detachment in my right eye, my sight was full of floaters—so many that when I gazed out at sea, the sky looked like it was filled with space trash.

Grumble, grumble, cough, cough, grumble, grumble. I walked the beach, focused on each stone and shell in my path. Will my vision ever clear? What if I get a retinal detachment? How can I get to the mainland fast enough?  I picked up a white stone shaped like a tiny ice cube and rolled it between my fingers. Why didn’t he wash his hands more carefully? Why was I so stupid to use his computer and not wash my hands after? I don’t want to be sick all week! We wait a whole year for this trip, and now what?

My breathing was so compromised that by Monday morning I woke up and decided that if I was still that sick by Wednesday, I was going home. I told Al, insisting that he stay and I’d pick him up on Sunday. He said he’d come with me, but I really didn’t want to spoil his week. We talked about future vacation plans and how I’ve realized, as my health gets more complex, I need better access to medical facilities, just for peace of mind. He agreed.

With that reassurance, I redoubled my efforts to make the most of the trip, breathed in healing sea air and kept searching for blue sea glass. By Wednesday I was doing much better, well enough to suggest a long walk to see an exhibit of paintings by local artists at the island’s historical museum. We headed out along one of the two main roads, which had just been repaved the day before. And stepped on warm macadam. Which glommed onto the bottom of my good walking sandals.

Grumble, grumble, cough, grumble, grumble. These are my favorite summer shoes! They support my crazy feet! What if I’ve ruined them? I kvetched as I walked along the roadside, trying not to step on any more tar and, instead, packed grass and dirt into the guck. Al said we could stop at the ice cream shack. We found some sharp rocks, and he was able to carve off most of the crud from the soles. When we got back to our rented house, he removed the rest with a putty knife and a nail. Then we went to the beach, Al’s pick.

This beach was next to the island marina. Al wanted to park our chairs with a good view of the moored boats. I wanted to walk a bit farther, but I agreed to his plan. After all, he’d rescued my sandals. As I set down my beach chair, I noticed a speck of cobalt in the sand, inches from the chair’s aluminum footing. It was a chip of blue sea glass, no bigger than the nail on my pinky.

That was the only piece we found on the trip. We walked miles of beaches, clambered over countless boulders, waded and swam in the ocean and trekked across sandbars at low tide. My cold waned and I caught up on my sleep. I discovered that the floaters are less visible when I look at multicolored and darker surroundings, and when I take off my glasses. My finger ulcers improved in the warm sun. I got a great tan. Time slowed.

Now, back home, having kept a morning business meeting, plowed through hundreds of emails and sat at the computer all afternoon, I wish it didn’t seem so long ago, already, that we were walking the beach. Later, I’ll layer this year’s sea gluncking finds to top off a jar on my bureau. And be sure to place the chip of blue where I can see it.

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.

Cutting Bandages

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Every morning and every night, when I get dressed and before I go to bed, I cut bandages for my ulcers. I divide them lengthwise to layer over my fingertips, then wrap a whole bandage around each finger to secure the half bandages in place. It’s become a ritual, this hand management, a routine essential to avoiding infection, a pit stop for damage control, a meditation.

For the past two weeks, as I traveled in Tel Aviv, Jerusalem and London, this ritual-of-necessity anchored me. No matter where Al and I were staying or who we were with, twice a day I had to stop and take care of my hands.

I cut bandages on my fold-out tray in a British Air Boeing 777 en route to Tel Aviv, on a bed in Al’s cousins’ apartment in Ra’anana before sundown on the Jewish Sabbath, at the kitchen table in our friends’ Tel Aviv pied-à-terre over a 1:00 a.m. heart-to-heart about letting go of your adult children, at an old oak table in our cousins’ London flat after our late night arrival from Israel, wanting only to go to bed and knowing I couldn’t, yet.

I was in the midst of cutting bandages when Mindi came to greet us at our friend’s apartment in Tel Aviv, the morning after we’d first arrived. I hadn’t seen her for nearly six months, since she’d left to make a life for herself in Israel, so I jumped up from the table, fingers half-done, to give her a big hug.

And I was cutting bandages last night, sitting on our own bed once again, relieved to have peeled off the day’s grubby dressings, blackened by twelve hours of travel. Were we really at the Tate Museum in London that morning?

Sometimes, the bandaging ritual during our journey was a damn nuisance, the last thing I felt like doing before leaving the house for the day’s adventures or when all I wanted to do was go to bed.

But at other times, it was peaceful, a time to collect my thoughts when everyone else was either asleep or away, an island of quiet to sort out what I’d seen and done and learned that day. As I’d cut the bandages, I’d listen to the familiar sounds of an unfamiliar setting—a wall clock’s tick, a dog’s bark, the click of heels on the floor above, the subterranean rumble of nearby Tube trains—and feel grounded.

I needed that stillness. Travel is so packed with newness, the unpredictable, the need to process so much information quickly and make snap decisions based on estimates of how your experience of your own world approximates this one, even though the two may be only tangentially related. Much as you’re constantly on the go, to fully appreciate the experience, it’s essential to slow down and just be.

So, I guess I have my bandages to thank for that.

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.

Good Medicine

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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.