Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

Ethical Dilemma

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It’s Monday evening. About nine hours ago, as I was preparing for a video conference with clients, I noticed a swollen gland in my neck. By mid-afternoon, my throat was gucky. By dinner time, I had chills. Now my head is getting stuffy and my right nostril is clogging.

A rotten old cold. Haven’t had one in months.

Illustrations of Ventilation by Lewis W. LeedsSo what’s the big deal? I have plans for Tuesday afternoon to meet up with an old friend whom I haven’t seen in well over a decade. She’s in Boston for a conference. We’ve been planning this get-together for more than a month. Do I stay home or do I go?

Colds—really, respiratory viruses—present an ethical dilemma. Are you actually so sick that you risk getting worse by going out, or giving it to someone else (your good friend from childhood)? Or do you just power through it and take your chances (for yourself and everyone else with whom you come in contact)?

Most people tend to favor the latter approach. Do what you want to do because, well, you want to. Go to work even if you’re under the weather because, well, you have to. It’s “only a cold,” after all. Everyone gets them. If you stay home whenever you have a little sniffle, you’re considered a hypochondriac or a baby.

But that is why colds are so ubiquitous. Respiratory viruses are highly contagious. Untreated, they can develop into much more serious, chronic health challenges, such as bronchitis or pneumonia, or trigger asthma. Your little sniffle can make someone else really sick.

When I ran a marketing department at a small New England college, I always used to tell my staff to go home if they were sneezing and coughing, even if it was “just a cold,” so they’d get better faster and not infect the rest of us. They appreciated it (most of them, anyway—some worried about using up sick time), and I believe our department was healthier and more productive as a result.

My natural tendency is to favor the ounce-of-prevention-is-worth-a-pound-of-cure approach, just because my own health requires careful management. I also think it really matters to take others’ health and feelings into account when weighing the should-I-go-or-stay decision. And yet—my friend and I haven’t seen each other in ages, and I don’t know when we’ll have another chance to get together anytime soon.

Complicating all this: It’s supposed to be a chilly, rainy day in Boston. Not my kind of weather under any circumstances.

What to do? After dinner, I emailed my friend and told her what was up. I don’t want to impose my germs on her, but I also don’t want to cancel our date without letting her weigh in. I said I’d let her know how I was doing in the morning. Then I loaded up on fish oil and Vitamin C.

Now I need to get a good night’s sleep. Maybe I’ll get lucky. This is a fast moving cold, and it could be resolved by morning (possible but unlikely). Or maybe I won’t feel all that bad, and we can just be careful. Worst case scenario: we can always Skype.

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.

Image Credit: Illustrations of Ventilation, from Lectures on Ventilation (1869) by Lewis W. Leeds. Courtesy of Public Domain Review.

Swell

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I turned 62 on Monday, one of those in-between birthdays that aren’t a major milestone. But this time around, instead of wrestling with the feeling that I’m just getting older, I decided to do something I’d never done before. Every year is a chance to experience new things. Despite living an hour’s drive from the Atlantic, I’ve never been whale watching, and I’ve always been curious to see live whales in their ocean habitat.

The season opened this past weekend, so we planned a trip for Sunday. I found a great company, a family owned business in Gloucester that has a marine biologist as a tour guide and that participates in whale conservation efforts. I found a discount coupon online. I found a nice restaurant nearby. The weather looked promising.

Only one glitch—when I called about reservations, I learned that there were going to be gale force winds off the coast on Saturday (despite great weather here), so it was best to check back on Sunday morning to find out if the waves had eased. Fortunately, the report was promising on Sunday—still swells, but okay for sailing—so we set out for Gloucester.

We made it with minutes to spare before departure, after getting lost along the way. But the sun was shining, everyone was helpful and friendly, and we found a good seat along the starboard side of the ship. I came prepared with all my winter gear—warmest coat, hat, mittens, leg warmers—to beat the sea breeze chill. As our ship powered beyond calm Gloucester Harbor and began to hit some swells, I was fine, enjoying the ride, like a kiddie rollercoaster.

It took about 45 minutes to arrive at the edge of the Stellwagen Bank National Marine Sanctuary, where we had a good chance of seeing humpback whales feeding. Sure enough, as we drew closer, our guide informed us that there were at least two humpbacks off the port bow at about 11 o’clock. But when I got up with Al to move around and take a look, all of a sudden I felt terribly dizzy. I immediately sat back down and tried to regain my bearings, but the ship was dipping and swaying. I felt just awful.

Fortunately, one of the crew saw me and offered to help me walk to the stern, which was more stable, and sit down. She brought me a small cup of ginger ale, half a Saltine and a plastic bag, just in case. Al was right by my side. To my surprise, the food actually helped a bit (neither of us had eaten more than breakfast, and the fact that we’d arrived so late precluded any lunch—a good thing, as it turned out).

But I was still very dizzy, so we found a space on the starboard bench, and I lay down with my head in Al’s lap. The whales, however, remained on the port side. Not an auspicious beginning to our expedition. Then they swam under the boat and began to spout near enough so I could lift my head and see. With a graceful flip of their flukes, they slipped beneath the waves. We were able to note the distinctive black-and-white patterns on the flukes’ undersides, which, our guide explained, is as unique to each humpback as a human fingerprint. These two he recognized from file photos as Mend and Evolution, familiar visitors to the Stellwagen Bank.

I felt badly about depriving Al from seeing the activity on the port side, but he reassured me we didn’t want to try to move over there. Two big, beefy guys were losing their lunches. Later, we learned that we had been in the midst of eight foot swells. Lots of people got sick. So I actually held my own better than I’d thought.

As our ship motored to a better viewing location, our guide explained more fascinating facts about humpback whales—including that it’s the males who sing, and that their songs are unique to each breeding ground. One whale will start singing, and then another picks up the melody and modifies it a bit, to demonstrate his prowess to the females. This continues throughout the breeding season like a game of telephone, so by the end of the season, the whale song is completely different.

I closed my eyes (which helped my dizziness) and did my best to relax with the boat’s rocking, which also helped, and listened to the guide’s narration. Then, our tour group got lucky. A juvenile humpback breached halfway out of the water and flopped back. Of course, it was on the port side. But then the whale (we dubbed it Hubert Humpry in honor of this presidential election season—yes, we’re dating ourselves) swam toward the bow and breeched again. This time, I managed to stand up on tiptoes, hugging Al tightly to steady myself, to see the action.

Our guide explained that humpbacks breach for four reasons: to rid themselves of parasites, like barnacles; to help their digestion; to signal other whales with the sound of their hitting the waves (sound travels farther under water); and to play. Hubert, I decided, was definitely playing, because he was putting on quite a show, smacking the waves with his huge flipper and breaching at least a half dozen times, all around the ship. Magnificent.

Between the two of us, we managed to capture it on video. I include the edited version, above, for your enjoyment. (If you can’t see the embedded video, click here for another view.) But there is nothing like seeing these extraordinary creatures in person—even risking motion sickness to get there.

There is so much to learn, to see, to do. I’m 62.

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.

Too Late

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I hate waiting in doctor’s waiting rooms. If I were to add up all the time I’ve sat around over the past thirty-odd years because my docs were running behind, it would probably add up to at least a few months.

traffic-jam-1549835-639x478So I very rarely arrive the prescribed 15 minutes early. Rather, I’ve cultivated the fine art of arriving just on time, to minimize any additional wait because of inevitable delays.

This gets a bit tricky when I have appointments in Boston. Traffic can be unpredictable. My strategy is to schedule my appointments in the late morning or early afternoon, avoiding rush hour.

Usually this works. Not so on Monday. I was cruising along, right on schedule to arrive in my Boston Medical rheumatologist’s office at 1:00, when I hit a long line of traffic trying to exit the Mass Pike at the Prudential Center. This means nothing to anyone who doesn’t know Boston’s spaghetti noodle road system; basically, it’s a really long exit from a tunnel. You can’t see anything ahead of you but the few cars in front.

Forty-five minutes later, I finally arrived at my doctor’s office, a full half-hour late. The grace period is 15 minutes. I had called, twice, to let the office know I was running behind. As I entered the hospital parking garage, I got a call: my doc could fit me in at 3:40—only because someone had cancelled out. Nothing earlier available.

I was not happy. But there was nothing to be done. To turn around after driving more than an hour-and-a-half would have been a total waste of time. Throwing a tantrum wouldn’t change the situation. Why should others have to wait for me, if there really was an option to jump the queue, because I got stuck in traffic? Not their fault any more than it was mine.

At least I had some reading material with me. Might as well get lunch and then sit in the lobby, which has a great view, and read. So that’s what I did.

Fortunately, my rheumatologist was running on time. We had a good talk, I took care of some diagnostics afterward, and I beat it out of Boston just as the Red Sox opening game was ending and Fenway crowds were walking across the bridge that spans the Pike Extension.

It was too late to get to my Pilates class. But other than that, I accomplished everything I needed to. It was actually a pleasure to sit and read. I’d been trying to get to this book for weeks to check some historical details for my novel.

Lessons learned: It’s wise to allow more commuting time for Boston appointments so I don’t get stuck again. Always bring my laptop, just in case, to have the option to write. And as long as I have some interesting reading or writing to do, any big delay won’t really matter, after all. Getting upset about stuff outside my control is the biggest time-waster of 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.

Image Credit: Niall Crotty

Season’s Greetings

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IMG_0491 3Punxsutawney Phil is a liar. The prognosticating ground hog promised a short winter when he failed to see his shadow back in February.

Well, it’s the first week of April, and it snowed here Sunday and Monday. Today’s low is in the teens. My Pilates class was canceled last night because the roads were a mess.

Saturday afternoon when I took my walk, I was marveling at the green lawns, the daffodils and hyacinths in bloom, budding leaves. All that is blanketed in white, now. And even though I know the snow will melt in a few days and be forgotten soon enough, I’m just sick and tired of winter weather.

I’m tired of wearing layers of sweaters.

I’m tired of mittens.

I’m tired of leg warmers.

I’m tired of wool hats, chap stick and full-length down coats.

I’m tired of my hands turning blue and my digital ulcers smarting if I don’t pile on all that stuff.

Yup, I’m more than ready for consistently warm weather. (Hear that, Phil? The key concept is consistent.) We’ve had some crazy fluctuations lately, from balmy teases to frigid temps, sometimes within a period of hours.

I know, I know. It’s New England. “Wait a minute and the weather will change,” and all that. April here is finicky. I still have snow tires on my Prius (thank goodness).

But, come on. It’s enough already. You’ve had your turn, Old Man Winter. Give spring a chance. Is it really too much to ask for enough warm afternoons to unfurl leaves and unleash the smell of freshly turned soil? Do you have to freeze the tulips before they’ve flowered?

I’m not the only one asking. After such a long, dark season of too much political angst and bad news, we could all use a boost.

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.

Just Living

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rain-1199464-639x425It’s raining today as I write, a chilly, damp, late March Monday. I’m still in layers of sweaters. The heat is on. I’m wearing my spring green wrist warmers to thaw out my fingers and remind myself that warmer weather is on the way. Really.

But this is not what’s preoccupying me this morning. Nor are my latest episodes of living with scleroderma. (Should I write about the odd tic in my left eye? my search for adaptive tools? the challenges of getting dressed?) No. What’s on my mind is just living, right now, right here, wrestling with all that’s at risk around us.

There is the U.S. presidential election, which has me profoundly worried. I have no intent of turning this blog into a political platform for my personal views (or anyone else’s, for that matter). But I have become a political junkie, reading, watching and listening to the best news analysis I can find to stay on top of developments. I also am inexorably drawn to fiction and histories about the rise of demagogues and Fascism. And I am struggling with my own role: What should I be saying, writing, doing in response?

There are other issues that weigh heavily on my mind—not only the proliferation of terrorism, once again making headlines with last week’s attack in Brussels, but the insidious cultural conflicts fueling this evil; the growing disparities between the haves and have-nots of this world and where that will lead as our planet becomes more crowded (which is intrinsically connected to the rise of terrorism); the existential threat of global warming. And, again, I struggle with my response. What will I be able to say, at the end of my life, that I did to help set things right?

I am not one who can easily compartmentalize and shove all this to the back of my mind. In some ways, I envy those who can. I always have to catch myself from spinning in my head about all the what-ifs, whatever is making me feel vulnerable. These days, however, I feel like I’m in a constant state of orange alert. (Obviously, this is not good for my health—physical, mental or spiritual.)

By comparison, my scleroderma and the challenges it presents are just a lot of white noise. I’m confronted by it every minute of every day—how to pick up a cup, handle a pen, turn a key in a lock, put on a sock, brush my teeth. It is frustrating, angering, time-consuming, exhausting, sometimes painful, often a real nuisance. But it is not what concerns me most in my life.

What concerns me are my family, my art, my work, my friends, my community, my country, our planet. What truly preoccupies me is how to live a meaningful life, how to make my small corner of the world a better place. And this is the real point of writing this blog. Living with a chronic disease can absorb a lot of physical, mental and emotional energy—for many good reasons. But it simply is not and cannot be all that we are about. Scleroderma is only a piece of me. It is far from all of me.

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.

Image Credit: Griszka Niewiadomski