Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

travel

Jet Lag

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Nothing like travel to broaden your horizons and challenge your equanimity.

Glad to be back home from an excellent business trip to Chicago last week. Great meetings with a wonderful client, much learned, and a fascinating project ahead. In the process, I caught up with old friends not seen in decades, ate some fine meals and visited the magnificent Art Institute of Chicago.

All my preparations for carry-on luggage paid off, and I even lucked out twice with the fast lane TSA check-in, so I didn’t have to remove shoes, pull out my 3-1-1 bag or my computer when I went through security.

But, of course, there were complications. Miraculously, I did not get an infection in any of my finger ulcers. Instead, despite all my best efforts at hand hygiene, I woke up Wednesday morning with conjunctivitis in my right eye. I have not had this since my daughters were young. I couldn’t believe it. Conjunctivitis. Really?

Fortunately, a physician on my client’s leadership team was able to prescribe eye drops, saving me a major hassle and a visit to the ER. My eyes are still healing five days later, but the business trip was saved.

Then came the trip home.

Friday morning, I arrived at O’Hare with plenty of time to eat breakfast, find my gate and relax before departure. Our United Airlines jet arrived 15 minutes before our scheduled Noon departure, so our boarding was slightly delayed, but I wasn’t too concerned, since it was a non-stop flight.

The plane was too small for most people’s carry-on bags, so I and others were given green tags to load out bags onto the plane and receive them at the gate in Boston. However, I failed to realize that I should have taken the perforated stub off the tag, in case I had issues with claiming my bag. I will not make this mistake again.

We settled into our seats. I noticed the leather was worn and wondered about the age of the plane. This proved prescient.

At least 20 minutes passed. The pilot announced that we had an issue with auxiliary power, they were dealing with it, and we’d be on our way shortly. I tried not to worry. A few more minutes passed, and the plane pulled away from the gate.

We began to taxi out to the runway. Then we stopped. For a long time. I heard the engines revving and some odd noises. Then silence. Then the engines revved again. Then silence. Finally the pilot got on the loud speaker once again. This time, he informed us, there was an issue with the heat pump for the left engine. We had to head back to the gate for a mechanical check-up

So back we taxied. Another wait, this time for an open gate and a ground crew to guide us in. “They weren’t expecting us,” the pilot explained. I guess not. My seat mate and I began to crack jokes about what else could go wrong, like a sudden severe thunderstorm. We discovered a shared concern for climate change and a love of Jon Stewart.

At first, the flight crew wanted to keep us on the plane. But the engine problem was apparently more complicated than expected. So after another half hour or so, they decided to let us off the plane while the mechanics took a closer look. “Please stay near the gate for any updates,” the crew told us.

Now, that’s all fine and good, but several problems became immediately apparent. For one thing, I could not take my wonderful carry-on bag off the plane because it was in the cargo section, and I had not taken the stub from my green tag. So there was no option to get on another flight without getting my bag back.

For another, the staff at the gate had no information about alternative flights. “You can go talk to Customer Service,” we were told. Only one issue—we were at Gate B22, at the far end of the United Airlines terminal, and Customer Service was literally about a half-mile walk away.

So, how does one stay at the gate for updates and simultaneously find out about flight alternatives without cloning oneself? (I had tried unsuccessfully to download the United app.) As I pondered this, I decided to make a trip to the ladies room. While turning around to pick up my purse in the stall, I missed a metal shelf sticking out from the wall. Wham! Banged my forehead. It hurt. In fact, it hurt so much that I wondered if I’d just given myself a mild concussion. In the bathroom mirror, I saw a fat goose-egg on my forehead, with a throbbing vein in the middle, though no blood.

At this point, I almost lost it. How was I ever going to get home? What if I really had a concussion? I needed ice. Trying to slow my breathing, I spent a ridiculous amount of money for a chilled bottle of water, which I then pressed to my forehead as I sat at the crowded gate, feeling conspicuous. Though, of course, everyone was too absorbed in their own travel woes or cell phones to notice or care.

Nothing to do but wait it out, I decided. This was going to be a long trip home, but I’d get there, eventually.

Next announcement: There would be an update at 2:00 p.m. Enough time to find Customer Service. Long walk, more waiting. While in line, I recognized a fellow passenger and commiserated. She, it turned out, was on her way to be a bridesmaid in a childhood friend’s wedding in Cambridge at 7:00 p.m. Her dress was in her carry-on, which, like mine, had been green-tagged. As we sorted out our alternatives with the customer service reps, we learned that our flight was going to be switched to a new plane. Hurray! Hope springs eternal.

Back at B22, we soon boarded our new and improved plane. Where it came from, we did not know, but the seats looked newer, a good sign. All our luggage was switched, everyone was accounted for, and we all fastened our seat belts, By now, it was about 2:30 p.m., two-and-a-half hours after we were supposed to leave. A reasonable person would expect to taxi out right away. But there was one hitch: The plane needed fuel.

So we waited some more. I learned a lot about my seat mate’s law firm and some fascinating cases. She was still hoping to meet a friend in Boston and ride out to Northampton for a 7:00 p.m. engagement—but timing was getting pretty tight.

By 3:30 p.m., we were all starting to wonder what was going on. Finally the flight crew got on the speaker once again to give us more unfortunate news: The pilot and co-pilot had timed out and could not fly anymore that day. We were now awaiting assignment of a new flight crew, who would be there “momentarily.”

“Did anyone have a watch?” my seat mate asked.

At last, by 4:00 p.m. we had our new crew, and we pushed away from the gate. Soon we were cruising at 35,000 feet, riding the Jet Stream toward Boston. A-h-h-h-h. Our new pilot, who had a soothing British accent, informed us that our descent to Logan should be quick, though we might hit some turbulence.

Fortunately, he was wrong about the turbulence. But he was also wrong about Logan. Lots of Friday evening air traffic. And so, as the sun slowly sank in the west, our plane began to circle. And circle. And circle. I asked my seat mate if she’d ever seen the classic Twilight Zone episode, “The Odyssey of Flight 33,” in which a jet mysteriously travels back in time, never to return to the right era.

Our United Flight 3791 time warp lasted until 7:00 p.m., when we finally arrived at Logan. I bade my seat mate farewell (her friend had booked a hotel room in Boston and they were going out for a good meal and stiff drinks). While collecting my green-tagged bag, I caught up with the bridesmaid, whose parents were picking her up and bringing her to the wedding, where hors d’oeuvres were just being served, so she was still going to make the ceremony.

Within another 45 minutes, I was in my car, driving west on the Mass Pike. I’d missed rush hour. The highway was dry from rain earlier in the day. My forehead swelling had receded. Hugs and a delayed Shabbat dinner awaited me.

Yes. Very glad to be back home.

Photo Credit: By Maarten Visser from Capelle aan den IJssel, Nederland (srapyard 01  Uploaded by russavia) [CC-BY-SA-2.0 (http://creativecommons.org/licenses/by-sa/2.0)], via Wikimedia Commons

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

In Transit

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I’m heading to Chicago today, my first long distance business trip since I started my consulting practice just over four years ago. The sun is out, the skies are clear, at least for now, and it looks like I’m going to make it out of Logan before a Nor’easter barrels up the coast this evening.

After all, it is officially spring in New England. Why not more snow?

I’m looking forward to the trip and meeting my clients in person. Wonderful as it is to talk over FaceTime and Skype and GoToMeeting, there is a limit to how much you can pick up from an image on a slice of computer screen. So now we’re going to spend two days digging into content and messaging for a revitalized corporate website. It’s a puzzle that I love to solve, for some great people working to improve the quality of healthcare outcomes.

Four years ago, as I searched for job openings after I had to shut down my marketing department of a dozen-plus years because the college where I worked was in dire financial straits, I had no clue where I was headed. It’s been a long, slow haul, starting up a consultancy, and this is a very sweet watershed moment.

But before I get too comfortable savoring my progress, there is the bigger problem to solve: how finally to join the carry-on luggage club.

Up to now, I have always checked my bags on flights. I am very wary of straining my hands when I travel, lugging a suitcase, even on wheels, lifting, pulling, hoisting. But the last time I flew, my luggage got lost at JFK and took nearly a day to arrive on my doorstep. Plus, there is the added $25 luggage fee, both ways. And the time factor.

So I’m taking the plunge. On Sunday, I spent the afternoon searching for the right 9” x 14” x 22” suitcase that I actually can manage. I researched on the Internet. I tried various bags, testing zippers, pull handles, interior pockets and overall touch and feel.

With luck, I found the perfect suitcase, olive green, with sturdy construction, padded straps, full swivel wheels so I can pull it sideways as well as behind me, and a handle that lifts with the lightest touch of my thumb. All the zipper pulls are either flexible or have comfortable, soft tabs. It was an investment, but for my hands’ well being, worth the money.

Then there was the issue of all the creams and ointments that I need to manage my finger ulcers and skin. This led me to the discovery of GoTubes, which are squishy, washable plastic tubes in 1.5 and 3.0 oz. sizes that meet FAA 3-1-1 standards for carry-on. The tubes have wide mouths, so it’s easy to scoop in the creams and squeeze them out. No waste.

My third find was a soft, large purse with magnetic clasps, so I don’t have to use zippers to remove all the stuff you need at the last minute to get through security clearance. It has a center, flat zippered pocket (only one zipper to deal with) for my laptop and deep side pockets on either side, so I don’t damage my hands when digging around. The straps are soft and wide enough to stay put on my narrow shoulders. All essential criteria for ease of travel and minimal skin strain.

It’s been a scramble to get everything together in time and finish all my work before departing. Last night I was cursing at a pair of black wool crepe trousers, another great find but two inches too long. Nothing like fumbling with a needle and black-on-black thread that you can barely see because your reading glasses need a stronger prescription and your fingers can’t feel the thread as you hem. The evening was saved by my local public radio station, playing an hour of Aretha Franklin’s best hits, because today is her 72nd birthday.

So, happy birthday, Aretha. I’m off to Chicago. Have a great week, 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

Sister Act

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“Remember, with the slurs, keep the notes nice and light. Let’s pick up at measure 69.”

The conductor taps his baton on the black music stand, and the St. Louis Wind Symphony breaks into John Williams’s Midway March, with the flute section playing brightly above the lush harmonies. This is the group’s first of only two rehearsals before next Sunday’s concert, a week from today. All are experienced musicians. My older sister plays piccolo and flute, first chair.

3320572325_f56c081618It’s been decades since I’ve heard her perform. During this two-hour afternoon session, the group is spot-rehearsing summer show-stoppers like the Candide overture, a Gershwin medley, The Magic of Andrew Lloyd Webber, Big Band Bash. It’s up to each musician to practice and learn or review whatever needs polishing before next Sunday. My sister makes the syncopated piccolo riffs in Bernstein’s Candide sound easy.

Today is the last of my three day visit, my first trip out here in seven years. Far too long. But something always seemed to get in the way of travel—tight budgets, busy schedules, the fact that she made a number of trips east while our father was ailing from Parkinson’s, the fact that flying by myself is exhausting. We’ve kept in touch by occasional phone calls, Facebook and email. Weeks, months, years, have slipped by.

So many years that when I checked my bag at the Delta counter at Logan last Thursday afrernoon, I was shocked that I had to pay $25 for the privilege. “We’ve been doing that for years,” snapped the ticket agent. Well, sorry, I didn’t know—and, by the way, if you didn’t charge so much per bag, maybe there would actually be room in the overhead compartments for everyone’s carry-on luggage. But I digress.

I’d love to carry on my bag. But I can’t lift it overhead or pull it down, and I don’t want to have to ask for help all the time. Getting through security with just my small shoulder bag was exhausting, enough—pulling out my boarding passes, juggling my photo ID, removing and replacing my laptop, taking off my coat, shoes.

Other than being squished like a sardine in my window seat and partially losing my hearing in my right ear due to shifting air pressure on the descent into St. Louis (it cleared by the next morning), the trip was blessedly uneventful. It was a relief to see my sister waving at the edge of the security barrier when I arrived.

Over the past few days, we’ve gone shoe shopping (she helped me find a great pair of Naot sandals that are both elegant and comfortable for my difficult-to-fit feet), walked through the stunning Missouri Botanical Garden in 90-plus heat and humidity, attended the St. Louis Fringe Festival, had lunch with friends I haven’t seen in decades, played Scrabble (no chance of winning against my sister, who has become a Scrabble online maven) and watched a hilarious performance of Spamalot at the outdoor Muny Opera. I’ve shared my new weather spotting fascination with my brother-in-law, had wonderful conversations about favorite writers with my younger niece and enjoyed our joint interpretation of what Tarot cards have to say about my business prospects (trust your intuition).

But sitting in on the Wind Symphony practice is the highlight. Music was a big part of our childhood. My sister was always the lead flutist in our school orchestras and bands. I played first violin and was concert mistress as a high school senior. I also played alto, bass and contrabass clarinet in our wind ensemble. It’s been nearly 35 years since I’ve been part, albeit vicariously, of a band rehearsal.

As the musicians wander into the music department practice room at Missouri U-St. Louis, I try to guess what instruments they play from the shape of the cases slung over their backs and shoulders. No more of those heavy black fiberglass cases that I remembered from high school—everything is lightweight, durable mesh fabric.

Watching one of the clarinetists assemble his instrument, plucking black and silver sections from their blue-velvet lining, I’m surprised as my throat clutches and eyes tear. I miss this. I miss the tangy smell of oiled wood and the bitter-sweet taste of reed on my tongue. I miss being able to make music myself. I can’t play clarinet anymore, because I can’t tighten my lips around the mouthpiece or manage the keys. It’s been decades since I could play my violin—an impossibility with my damaged hands. Octave spreads on the piano are beyond me, now.

So, instead, I write on my laptop as I listen. Composing sentences, capturing rhythms in words, is my music making. I sway to Gershwin and big band hits as I type, stopping to focus on my sister’s flute solos. I enjoy the stop-and-start practice to refine phrasing, the conductor’s bop-a-dah-be-dah-ba-dat-dat explanations of how the music should sound, the group’s wonderful sight reading, the great arrangements, my sister’s fluid notes.

Monday morning, she will drive me to the airport. But the music will linger, long after. And I won’t let another seven years drift past before I return.

Photo Credit: dongga BS 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.

Road Trip

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Hello, I love you, won’t you tell me your name?
Hello, I love you, let me jump in your game.

Taconic ParkwayI’m singing with Jim Morrison’s husky baritone, cruising west on the Mass Pike. It’s Sunday of Memorial Day weekend, drizzling, then raining, then sunny with patches of azure flashing behind wooly clouds, then pouring again, as I head toward the Hudson Valley to help Emily move home from college for a couple of weeks before she leaves for her summer internship.

Driving long distance is a meditation for me. As long as traffic isn’t onerous, I can focus on the present moment of the road before me while allowing the back of my mind to wander. Often, the answer to a problem I’m trying to solve will pop out of nowhere. During the dozen years that I used to commute 100 miles round-trip to Boston daily, I would do some of my best thinking during rush hour traffic jams.

But today, I’m just enjoying the classic rock road trip medley playing on my satellite radio and trying to keep my joints from locking up. I didn’t sleep well the night before, so singing words to old favorites is the best way to stay alert, and bopping to the beat helps me shift my weight so my back and hips don’t get sore.

If I ever get out of here…if I ever get out of here.

Wings will never rival the Beatles, but I still like McCartney. Most of the traffic, heavier than usual for a Sunday, drifts off the Pike at the exit to Interstate 84, heading, no doubt, for New York City and environs. Not yet few enough cars and trucks to set the cruise control, but easier from this point west.

Now that I don’t have to drive daily into Boston, I enjoy the road more. But commuting forced me to be a better driver. I had always been intimidated by heavy highway traffic, especially in and around a major cities, until about 17 years ago, when I agreed to participate in a study for new medication to treat Raynaud’s at Boston Medical Center. I had to drive into Boston once a month for a check-up as part of the study and realized the commute was not only doable, but I reveled in the sense of independence it gave me and the discovery that the city was more accessible than I’d thought. That led to the decision to seek a better-paying salary in Boston and twelve-and-a-half years as a marketing director in higher education. I had some hairy trips in bad traffic and nasty weather, but I never had an accident.

Working for myself now, I don’t miss the commute one bit. But on a day like today, I enjoy the feel of the road, the lush green landscape, the ever-changing sky. I just wish I weren’t quite as tired. Time to make a rest stop and stretch my legs.

Layla, you’ve got me on my knees.
Layla, I’m begging, darling please.
Layla, darling won’t you ease my worried mi-i-i-i-i-i-i-nd. . . . .

Thank you, Eric Clapton. Thank you Duane Allman. Thank you, Derek and the Dominos. No better song for driving, ever. More sun than rain, now, as I cross the New York border and head down the Taconic State Parkway.

I grew up farther south, along the Hudson, and there is something about the rolling landscape, the view of majestic blue Adirondacks on the horizon, the Dutch and Indian names for creeks and towns that feels comforting, familiar. I set my cruise control close to the 55 mph speed limit, sit back and glide up and down the hills. The Taconic is notorious for speed traps and deer. I will be glad to get out of the car soon.

Does anyone really know what time it is?
Does anyone really care about t-i-i-i-m-e?

Belting it out with Chicago, I finally reach the quaint Hudson River town near Emily’s college. Just a few more miles to go. The sun is out, it’s cool and windy. Rainbow pinwheels spin in a bakery’s front yard. The farm stand near the college is open for the season. I have figured out the structure for this week’s blog post.

I park behind the row of dorms near a few other parents, their cars crammed with luggage and boxes. Em arrives, smiling, with her bike and a few other items that we need to fit into my Prius. She’s already packed everything else into her sister’s Elantra that she’s borrowed for the year while Mindi is living in Tel Aviv.

The wind feels refreshing, now. It’s so good to stretch. We visit with a friend, drop off Em’s keys to the dorm that she’s overseen as a peer counselor (otherwise known as an RA) for the year, and go out for a late lunch at the local diner. The fish burger, sweet potato fries and tea revive my brain, a good thing. We have a three hour drive home, with me in the lead.

I switch from classic rock to jazz. Is it really possible that Em has just completed her junior year of college? Is it really possible that summer is almost here?

As we cross the Massachusetts border, the bottom arc of a huge rainbow bends from massive, scudding clouds to the Berkshires, below. I call Em, following several car lengths behind, on my cell. “Welcome back,” I say. “That rainbow is just for you.”

Photo Credit: PR’s photo goodness 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.

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.