• Mind
  • Body
  • Sight
  • Hearing
  • Smell
  • Taste
  • Touch
  • Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar

Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

  • Home
  • About
    • Privacy Policy
  • What Is Scleroderma?
  • Resources
  • Show Search
Hide Search

Touch

In Transit

Evelyn Herwitz · March 25, 2014 · Leave a Comment

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

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Mind, Sight, Touch Tagged With: adaptive tools, finger ulcers, hands, managing chronic disease, resilience, travel

Hair Wars

Evelyn Herwitz · March 11, 2014 · 2 Comments

In the Department of Little Nuisances, I find myself in an ongoing battle with stray hairs. This may seem ridiculous to report, but it’s one of the odd things about dealing with personal hygiene that comes along with my experience of scleroderma.

To wit, every day or so, one or more stray hairs drops from my scalp onto my face. I can feel it on my skin, but I have a devil of a time removing it with my fingers. In part, this has to do with the fact that many of my fingertips, at present, are swathed in bandages for digital ulcers, so I can’t actually sense the hair with my fingers. It also has to do with the fact that my fingertip sensitivity has declined over years of Raynaud’s, ulcers and nerve damage, so even with exposed fingers, I can’t always feel the thing.

Very annoying. And frustrating. Especially if the hair has fallen on my lips, but I can’t successfully blow it out of the way. I’ll end up wiping my face with my hands or wrists to get rid of the strand, only to have it stick to my clothes, where I can’t pick it off, either.

On days when I have a sense of humor, the whole bit feels like one of those old-fashioned slapstick comedy routines with fly paper, when no matter which way the actor moves, he gets more and more tangled up in himself. I’m imagining Buster Keaton.

But lately, this is just plain annoying, probably because the air is so dry from cold wintery temperatures and my clothes crackle with static electricity. I try to keep a lint roller handy, but the problem with lint rollers is that it’s hard to peel off the dirty layer—just another reminder of my fingertips’ inadequate pincer capability.

While I’m on a roll, here, the other issue with stray hairs involves my bandages. No matter how good a job I do every day to neatly wrap my fingers in clean dressings, within minutes, some hair from somewhere gets stuck to the edge of adhesive and becomes impossible to remove. Often, I have to resort to scissors to nip off the offending hair strand.

Now, admittedly, when dealing with a disease as complicated as scleroderma, this is a pretty minor issue. It’s not life threatening. It doesn’t keep me from doing what I need to do or love to do each day. One way or another, I manage to groom myself and not walk out of the house with a lot of stray hairs hanging all over the place.

But my hair wars are a constant, niggling reminder that there are a lot of things, even the most simple things, that this disease makes ridiculously complicated.

Our skin, the largest organ in our bodies, is an amazingly facile interface with the surrounding world—protector against infection, moderator of temperature, sensor of stimuli, transmitter of information to our brains. When our skin is damaged by scleroderma, our ways of perceiving and interacting with the world change permanently.

No easy solutions to all this. Patience, persistence, creative problem solving and a sense of humor are the best tools, I’ve found. But some days, I still get really annoyed about it all. And that’s okay, too. Anger has its place in dealing with chronic illness, as long as you don’t take it out on someone else or yourself. So I share this rant with you, dear reader, in hopes that you find a constructive way to vent your own frustrations about picayune problems of disease management. More power to us all.

And if you’re having a bad day, here’s Buster Keaton in The General, to give you a lift!

Video Credit: Internet Archive

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

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Mind, Sight, Touch Tagged With: body image, body-mind balance, finger ulcers, hands, managing chronic disease, personal hygiene, Raynaud's, resilience

“How Is Your Heart?”

Evelyn Herwitz · February 25, 2014 · 4 Comments

Sometimes, a chronic medical condition can save your life.

It is February 15, 1916. My maternal grandfather, Max Kronenberg, age 21, is heading to the Russian Front aboard a train with fellow German soldiers, destination unknown.

Max_Kronenberg_1914He has been assigned to a unit responsible for field communications, stringing telephone lines and monitoring messages between command posts and troops in the trenches. “Who knows whether that’s good or bad,” he writes to his parents, back in Berlin. “I did not make a special effort for it but don’t want to change it either. . . .”

I am sitting in bed late Saturday night, a huge black binder on my lap, reading my mother’s translation of Max’s wartime correspondence. This and other binders of family memorabilia have been collecting dust for more than a decade on the bottom shelf of our bedroom bookcase. 

The collection is just one of those things I’ve always meant to read, but never gotten around to until a few months ago, when I was contacted by faculty of the Technische Universität Berlin who are writing my grandfather’s biography. A professor at the TU until he lost his job when Hitler came to power, my grandfather wrote seminal texts for the field of machining science, a precise engineering specialty. I’ve sent a photo and some family stories to help with the book. Now I’m digging deeper to learn about this man who was responsible for enabling my grandmother and mother to leave Germany in 1936, before it was too late for Jews to escape.

Ten days later, February 25. Max’s train departs from Vietz, carriages and guns decorated with pine branches and flags. He is an artilleryman in the Bavarian Cavalry Division of the 824th Field Artillery Battalion, 10th Army of the German Empire. Food is plentiful, the compartments comfortable—they travel on an express train where each soldier has a bench to himself and two blankets. “Could you obtain two cat pelts for me?” he writes. “They are supposed to be the best prevention for cold feet. Our tailor makes slippers to measure.”

Comforts are fleeting, bravado short-lived. Traveling by train through Poland, then on foot, the battalion marches over many kilometers of deep snow and ice to their position, 8 km from the front. Max’s unit is stationed near Lake Narach, in present-day Belarus.

Food grows scarce. As snow melts, the ground turns to mud. The Russians, prompted by French allies who want to deflect German forces from Verdun, agree to launch an offensive against the Germans in the Lakes region. The Russian artillery bombardment lasts two days, but then they make the mistake of crossing no-man’s land between trenches in groups and are massacred by German machine gunners.

“It was worst on March 18/19,” writes Max. “Today it is rather quiet again. . . . Three days ago . . . one could hear an 18 hour bombardment from there. It should be over soon. In the first place they are getting their heads bloodied, and secondly, it is thawing now and therefore difficulties in transporting grow to undesirable proportions.”

He writes as he tries to dry out his soaking clothes before a smoky oven, after falling hip-deep in a water-filled ditch, en route to setting up new telephone poles: “Could you send me some canned vegetables? The only packages that arrive quickly are those weighing 1 lb. But you make several small packages. One depends on these packages. I don’t manage very well with the rye bread because I am always extremely hungry.” My mother adds a translator’s note: “extremely was crossed out and ‘very’ substituted.”

There is no great love of country or the German cause in these letters. He is a resolute soldier on the wrong side of history, doing his duty. Mostly, Max writes about the daily grind of army life and asks about the packages his mother sends, filled with chocolate, sausages, pies, cigarettes, butter, even raw eggs, that arrive too far apart, often with goodies missing.

In turn, my great grandmother Ella frets about not hearing from him for weeks at a time. His account of his fall into the ditch frightens her when the letter finally arrives. Max’s younger brother, Walter, has also been conscripted and not heard from for weeks. “Nothing much is happening here, it is so terribly quiet at home as you can imagine, the two of you so far, sometimes I feel so wretched and no prospect of peace according to the last speech of the Reich Chancellor,” she writes. “Write immediately and daily you know how I/we wait for news. How is your heart?”

This is the first mention of Max’s heart problem. As the months grow longer and conditions harder, he describes palpitations, although his telephone unit remains a safe distance behind the riflemen’s trenches. Sometime during the spring, he sends a note:

“So that you won’t get a shock when you see battery 824 mentioned in the casualty lists. Our half battery stationed farther south than we are incurred some casualties the other day. One dead and three injured. The guys were in high spirits and were showing off within site of the enemy. An artillery salvo found its target. Too bad about the guy who was killed, he was nice. The others were slightly wounded. So, no reason to fear.”

Long, tedious days are spent cutting trees for log roads to enable troop movements over soggy ground. Every evening, the soldiers hope for letters and packages from home to supplement their meagre rations, share photos of loved ones that arrive in the mail and debate the war’s end. Max receives an occasional newspaper.

“Then comes always the question: Kronenberg, is there nothing about peace in the paper?” he writes in late April. “The smallest phrase is analyzed, debated. Then there are long debates about peace, each one says something whether optimist or pessimist. The most important question is the order in which troops might be discharged.”

On April 28, he writes of a close call. While stringing more telephone wires, Max and a few comrades cross an open field and hear some artillery fire. At first they don’t realize they are the targets, but then “we hear shrapnel balls striking into the field about 50 m in front of us. We used the interval between loading to run to the log cabin approximately 200 m away.”

After an hour’s wait, the men go back to retrieve the roll of wire and attract more enemy fire. “There is a tree shortly before the cabin and I wanted to throw the wire across it—yea—that’s a laugh—an asshole (excuse me) of a Siberian sharpshooter shot at me about 2 m above my head. At that I removed myself. No one is going to hit me.”

Following this episode, which terrifies his parents, Max’s letters become more crisp, annoyed, bitter. He spends long days in the trenches, manning the telephone. He anxiously awaits packages from home. On May 9 he writes, “Today I feel miserable again especially because the lice are plaguing me terribly. If only this thing would come to an end—or that I would be promoted. As a NCO life is better, that’s the deciding point in the matter of promotion. I hope I will get leave soon. My heart isn’t doing too well, either, but it’s useless to go on sick call here.”

A week later, he chides his parents about their concerns: “If you are going to get so upset about 3 errant bullets then I won’t write anything about the war anymore. There’s no point to it! Being here in the East is simply life insurance against Verdun. It’s completely quiet here right now, since our lines are intact and I don’t go past them anymore and reckless I am not. But perhaps I will soon be transferred from the battery. There’s supposed to be a new artillery company being formed and they’re looking for student and graduate engineers from the Institute of Technology. If the battery would let me go, I’d be in fine shape.”

Soon, Max gains permission to apply to the new unit. After three days in the trenches, he returns to quarters and is ecstatic to receive letters and three packages from home, including zweiback, clean underwear, canned goods, hard candy, sugar, peppermint, sausage and a tin of herrings, as well as 20 marks to pay for supplies at the overpriced canteen.

He asks for soap and a copy of Kant’s Critique of Pure Reason to be sent, as well as some math textbooks from home. “Send the books as quickly as possible because when I have telephone watch at night from 12 to 4 I have a lot of time to read. Otherwise I feel pretty well. My heart acts up a bit, quite frequently, especially when I walk a lot, but there is no use going on sick call here.”

In June comes a promotion to Lance Corporal. His application is accepted to the new unit, a Sound Measurement Troop that monitors enemy positions. He longs for socks from home. His new unit is quartered far back from the front. “Today a personal miracle occurred,” he writes sardonically on June 22. “After a rest cure of 4 months in the Russian forests, meadows and fields I took a shower and deloused myself and my ‘rags.’ The bath house and delousing station were donated by a national association of pious maiden ladies from Silesia—I think—as a gift of love (pardon the crude soldier’s joke) . . . .that’s where I discovered what I looked like under all the dirt.”

More trees are felled as Observer Post 3 builds new quarters. Other than mosquitos, Max enjoys his forays into the forests. “The trees are gigantic and give wonderful shade. The birds don’t think about the war and I don’t either. . . . A little brook flanked by tall shade trees gurgles peacefully. Unfortunately the peace is disturbed by the boom boom of the anti aircraft batteries shooting at airplanes. One can’t see them but hears their buzzing. Little white cloud dots of shrapnel mark their path.”

Weeks pass. By the banks of the Svilka, Max celebrates his 22nd birthday with his comrades on July 8 with three bottles of Bordeaux purchased at the canteen and cigarettes. The unit of engineers builds a sturdy cabin for shelter that is the envy of other troops. He takes shifts monitoring sounds of enemy artillery from a booth hidden in the forest. Compared to the trenches, the daily routine is more relaxing. But stress never lifts. “Sometimes one is happy, sometimes one is wrapped in depression,” he writes to his preteen sister, Tutti, “because as nice as it sounds it’s different at home, to be in Germany is something completely different and to be a civilian!”

To his mother, as the summer heat intensifies, he writes: “I can’t exactly aver that I am on summer vacation. I am left with pretty severe rheumatism from the winter and frequently become aware of my heart in this heat. When there is a sudden rain storm, it’s the well know soldier’s complaint: Kidney pains. Now you must not think that I’m a walking corpse. Washed out, yes. But the others aren’t any better off.”

There are 12-hour rotations in the hidden booth, where the soldiers take turns at 4-hour shifts, watching and listening for enemy activity. If anything happens, “the measuring starts.” They nap when action quiets. Each rotation is followed by a 24-hour respite. Then, on August 7, at 11:00 p.m., the unit is roused with shouts. Quickly they pack up and begin a long trek by foot, truck and train to the southwest, by Max’s compass. As they travel across the Russian border into Austria-Hungary, they are passed by an express train headed to Vienna. “Strange sight. Women who look elegant and clean observe this military swarm with curiosity,” Max writes his parents.

Once in Austria, they head east, again, still with no information about their destination, and stop at a town he identifies as S. “We meet train after train with wounded, munitions trains, military personnel trains are back and forth. We await new orders in S. It takes a long time and we help load the many wounded on trains. A terrible picture: Moaning, sighing, wild hallucinations, smell of blood and carbolic acid and in between the trucks bringing more wounded.”

They move on, to be stationed in Galicia. Food is in ample supply. Meat every night, potatoes, vegetables harvested from the gardens left behind by former inhabitants who fled from the invading forces. The unit settles into new quarters—a former pig sty with a straw roof and walls. ”I am fine, just very homesick,” Max writes.

On a late night, 8 km trip on August 29 with a comrade to fetch mail from the army post office, Max gets drenched in a downpour and falls in the puddled streets, soaking through all his clothes. They bring the heavy load of mail and packages back to their new observer post in an oak forest. Rain pours through cracks in the structure. He finds a bottle of cognac in a package from home.

“In two gulps it is half empty! Did that feel good!” he writes. “Huddled in a wet blanket and sitting on the backpack while it continues to pour without pause to accompaniment of infantry fire. Sleep is a figment of one’s imagination. Another swig of cognac! I am curious whether I caught cold. Up to now I just noticed increased heart activity.”

Two weeks later, he is transferred to a field hospital “for heart and nervous disorders.” By winter, he has returned to Berlin, working with factory administration, back where he had been before the war.

Max_KronenbergSo ends my grandfather’s World War I odyssey. Max lost most of his hair during his tour of duty. When my grandparents would visit us as children, my sister and I used to love standing behind him as he sat in a chair and dance our fingers atop his very bald pate. He would pretend we were flies and swat his head with a newspaper, to our delighted giggles. 

But I did not know him well. A modest, remote, serious man, he never shared all that he had experienced in the war or during the years after Hitler came to power. We never discussed what it took for him to leave his homeland, come to the United States and save many family members in the process—though not his parents, who refused to leave Germany and died in Theresienstadt. 

If it weren’t for his heart problems, Max Kronenberg may never have made it back from the Eastern Front and on to become a path-breaking mechanical engineer, who, among other accomplishments, consulted to the U.S. Secretary of War during World War II and the United Nations. If it weren’t for his courageous heart, I would never have existed. May his memory be for a blessing.

Image Notes: The top photo was taken of Max in 1914. I believe he is wearing the uniform of his student fraternity, since he was not conscripted until 1916. The bottom photo is of my grandfather as I remember him. This was taken at a professional conference or an awards ceremony when he was in his 70s, to the best of my recollection. Some of his professional papers are housed in the Smithsonian Institution.

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.

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: Max Kronenberg, resilience

Flying Lesson

Evelyn Herwitz · February 4, 2014 · 4 Comments

Last Thursday night, Al and I stayed up way too late watching a Batman movie. I was sitting on the bed, changing my bandages—a half-hour process these days, with so many finger ulcers—and he was relaxing, not yet asleep, but tired enough to skip channel surfing.

Somehow, we got hooked on Batman Begins, with Christian Bale as the Dark Knight. It wasn’t the plot—you know from the start how it will end. There were far too many commercials, and if we’d really wanted to watch the movie, we could have streamed it on Al’s computer with Netflix.

There was just something mesmerizing about the telling of the story, which revolves around Bruce Wayne’s struggle to overcome his childhood fears and the loss of his parents, and his quest to save Gotham City from the forces of evil.

I guess I’m a sucker for heroics, imagined and otherwise.

Plus, he could do all those neat tricks with zooming upside-down, snatching up the baddies from their lairs.

And he could fly.

When I was a kid, I used to wonder aloud what it would feel like to be a bird—to have wings and be able to soar around in the sky and land on a delicate branch, way up in a tree.

But much as I wondered about this, I was also afraid of heights. Sitting in a balcony at a theatre would make me anxious, that somehow I would fall over the edge. I was terrified of ferris wheels and roller coasters. When our family visited the top of the Empire State Building, I hugged the outer walls, not trusting the sturdy iron railings to hold (this was back in the day when the 102nd floor observatory was still open to the public).

So it was, nearly 20 years ago, when Al bought me a one-hour flying lesson at a synagogue fundraiser for my 40th birthday, that I thought he was out of his mind. I had certainly flown many miles in commercial airliners by then, but the idea of piloting a private plane was about the last thing I’d choose to do in my free time.

His inspiration for this gift was to give me a bird’s eye view of local landscape, to help my research for the book I was writing about the history of Worcester’s urban forest. I had been telling him all about regional geology and topography, my most recent fascination. I didn’t want to hurt his feelings, so I reluctantly accepted.

The day of my lesson that summer dawned sunny and clear. We met my instructor, a local DJ who went by the handle of Roger X, at the airfield, next to his yellow Cessna. He was jocular and confident, very reassuring as I nervously settled into the pilot’s seat, with him as co-pilot. Within minutes, we were taxiing for take-off. As we rose into the air, Roger let go of the dual controls. I was flying the plane on my own. I began to perspire.

Roger instructed me how to pull back gently on the controls to keep climbing. He told me that flying a plane was as safe as driving a car—the air pressure differential over and under the wings pushes you up. I knew this, I understood the physics, but my heart was slamming in my chest.

And yet. The view was spectacular. I had chosen to fly north, tracing the pattern of Central New England mountains. There were Wachusett, Monadnock, Tecumsah, plopped like dollops of pistachio ice cream, separated by many miles, but aligned. The glacial patterns I had researched suddenly made sense.

I banked the plane in a U-turn, following Roger’s calm instructions, and we headed back. He spoke to the control tower as we approached the airfield. He told me what to do, and to my total amazement, I landed the plane safely. I peeled my sweat-soaked shirt from the seat-back and climbed out on shaky legs.

Relaxing into Al’s congratulatory embrace, I thanked him. Sincerely. It had been, ultimately, exhilarating, one of the best birthday presents ever.

I haven’t flown a plane since (expensive hobby). But I still cherish the memory of that lesson. We each have our own reasons to be fearful, some grounded in stark reality and some imagined, but angst-producing, nonetheless.

When I get stuck, I try to remember: You never know what fears can be overcome, or what you’re capable of, until you try. Sometimes it just takes the push of the one who knows you best to get there. Especially when, in spite of yourself, you really do want to fly.

Photo Credit: Skyhawk4Life 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.

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Mind, Sight, Touch Tagged With: finger ulcers, managing chronic disease, resilience

Hamster Wheel

Evelyn Herwitz · January 21, 2014 · Leave a Comment

Monday morning, 4:18.

Rolling over to adjust my pillow, I hope I can get back to sleep. If I wake anytime between 2:30 and 4:30 a.m., that’s often a futile quest. Tonight is no exception, thanks to a dying battery in our smoke detector that prompts intermittent chirps—undoubtedly the reason I woke in the first place.

With Al’s help, the battery is disconnected and the house, peaceful once again. He falls back to sleep within minutes. But the dark side of my mind is on full alert.

As I lie in bed, I tell myself to stop worrying about a fire, now that the smoke detector is disarmed. This takes a while. I know it’s ridiculous, but it’s the anxiety witching hour.

My mind reviews the past day’s events. I had spent much of Sunday afternoon cooking a dinner that Al and I delivered and shared with friends, a couple we hadn’t seen in a long time. We’d been meaning to visit for months. The husband is a physician, recently returned home after spending many weeks in rehab after a freak accident damaged his spinal chord, leaving him mostly paralyzed from the shoulders, down.

Sharp as ever, he is reflective, soft-spoken, pragmatic. He can maneuver his electric wheelchair with a joystick and use a tablet and computer with adaptive tech tools. He intends to return, eventually, to teaching and practicing medicine. The couple’s courage, humor, strength and resilience are inspiring. We left feeling hopeful.

But as I lie in bed, trying to sleep, all I can think about is, What if?  What if I could no longer take care of myself? What if I could no longer get around on my own? What if that happened to Al? How would we cope?

I try to talk myself off the hamster wheel, but my mind won’t settle. Prayers, meditation, nothing works. I’m just too rattled. I think about how I’ve had the advantage of a slowly progressing chronic disease, which has enabled me to learn gradually how to readjust. Our friends’ lives were undone in an instant. Life is fragile. Change is the only certainty.

Hours later, after I finally get just enough sleep to be able to function, I discover a well-timed blog post in my email about the importance of living each day fully. It’s the obvious answer to the night’s fears.

Terrible things happen to good people who don’t deserve it—accidents, disease, loss, trauma. We can anticipate, maybe prevent, maybe avoid some of the worst; but, ultimately, there is no way to predict the bad stuff. The only way to contend with life’s inevitable risks is to live each day well.

Sunday evening, after our friend’s aide finished feeding him the spinach cheese casserole I’d baked, he turned his head to me and said, “That was wonderful.” Whatever fatigue and hand soreness I’d felt from working in the kitchen evaporated in that instant.

I share this not to brag, but to emphasize the point: The only way to contend with life’s inevitable risks is to live each day well. Sometimes that means just appreciating the fact that you can get up on your own in the morning, even when you haven’t slept soundly. Other times it means cooking a meal for friends who are going through a really rough time, even if your own hands don’t work the way you want them to—or simply savoring the food on your tongue, however you’re able to eat. Ultimately, it means being fully present, in your own life and for others, making the most of each moment, each hour.

I’ll try to remember that, next time I can’t sleep.

Photo Credit: Lewaedd-Q 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.

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Mind, Taste, Touch Tagged With: hands, insomnia, managing chronic disease, mindfulness, resilience

  • « Go to Previous Page
  • Page 1
  • Interim pages omitted …
  • Page 72
  • Page 73
  • Page 74
  • Page 75
  • Page 76
  • Interim pages omitted …
  • Page 86
  • Go to Next Page »

Primary Sidebar

Subscribe via Email

Enter your email address to subscribe to Living With Scleroderma and receive new posts by email. Subscriptions are free and I never share your address.

About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

Blog Archive

Recent Posts

  • Gutsy
  • What Happened to Your Hands?
  • Drips and Drops
  • Out of Focus
  • Bandage Break

I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

Copyright © 2025 · Daily Dish Pro on Genesis Framework · WordPress · Log in