Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

resilience

Fallout

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IMG_0121When I was in grammar school, in the mid ‘60s, we used to have air raid drills. We would file out of our classrooms, line up along the hallway, crouch down facing the walls and place one arm under our foreheads and the other over the backs of our heads.

We had to stay there, silently, for a few minutes, until our principal gave the all clear. Someone would inevitably get a nose bleed, and someone else would be reprimanded for talking, but most of us did as we were told, without questioning. When it was over, we’d troop back to our desks to practice cursive writing on blue lined paper or recite multiplication tables, not giving it much more thought.

For our teachers and parents, of course, these drills were deadly serious—albeit a totally ineffective effort to protect us children if the H-bomb ever dropped on New York City, just an hour to the south, or on the nearby ConEd nuclear power plant at Indian Point on the Hudson.

One neighbor down the street built a fallout shelter and proudly gave us a tour. I thought it looked like a fun adventure to live there, in the well-equipped underground room, with its bunk beds and stocks of canned food. It inspired me, for a class project, to build a model fallout shelter out of sugar cubes and Elmer’s glue, with furniture made out of colorful construction paper. This was how I processed the insanity of those times, not understanding the implications—and, very, very fortunately, never having to come to grips with the reality that the fallout shelter represented.

Our neighbors were the only ones to go to those extremes. I don’t recall their names, but the parents were from France. It was a mere 20 years since World War II had ended.

Wars, fear of wars, now the brutal face of terrorism, haunt each generation. It is a disease we cannot seem to escape, this instinct to destroy, to dehumanize and crush “the other” to gain power, control. Last week’s horrific attacks on innocents in Paris capped a week of bloodshed around the world, including a bombing in Beirut and a slaughter of university students in Nairobi. It seems endless, and the threat that the Islamic State now poses to the world weighs heavily on my mind, as I am sure the threat of Mutually Assured Destruction kept my mother awake at night.

The Parisian attacks feel particularly close, because the targeted restaurants and concert hall are only a ten minute walk from the apartment where Al and I stayed on our trip in July. I have written to our Air B&B hostess, to express our support and best wishes, but have yet to hear back. I hope her silence is only because she missed my email.

I try to reassure myself that, ultimately, over the course of history, the perpetrators of evil  are undone. But it will take cooperation, shared intelligence and resources, strategic force, justice, courage and a commitment to the greater good of all humanity to cure our global society of this terrible terrorist scourge. Xenophobia has no place here—it only accelerates the spread of the disease. Refugees from terror need asylum, not blame for perpetrating the very horrors they are fleeing.

Eradicating terrorism will require decades of patience and determination. There are no quick, facile solutions, as some of our politicians would have us believe during this season of presidential so-called debates. To fall prey to that delusional thinking is akin to believing that crouching in a school corridor is adequate protection against a nuclear attack.

In response to all the cynicism and bellicosity that pervades the news in the wake of the attacks, I draw on our European travels this summer for an antidote. Everywhere we went, strangers helped us. Just as we thought we were lost, someone would point us in the right direction or give us a lift. When we were tired, someone would offer to carry our bags. Most people are basically goodhearted. Dark as the world feels today, the odds for defeating this latest face of evil are in our favor.

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.

Civics Lesson

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9262539322_19fce888d4_zLast Wednesday, a member of our synagogue congregation died. Mel was 88, a soft-spoken man who never boasted of his distinguished academic career as a science professor at a local university, or of the science text he wrote that was used by thousands of college students nationwide.

A popular teacher, he was also a quiet and dedicated community volunteer, who could be relied upon for keeping meticulous minutes as secretary for several boards. He loved to hike and play tennis and be surrounded by his large extended family.

In recent years, his health had declined. He was reliant on oxygen and rarely went out, except to see his physicians. Tuesday morning, Election Day, he had gone with his wife to the doctor’s. All seemed fine.

From the doctor’s, they planned to pick up the one fast food meal he loved and could still eat. But on the way, Mel asked his wife to stop at our synagogue, which is our ward’s polling place. He was too weak to enter the building, so the police officer on duty brought a ballot out to the car so he could still vote. Afterwards, the couple picked up his favorite meal and drove home. He struggled to get out of the car. Inside the house, he collapsed. Mel died the following day.

On Tuesday, I had almost skipped voting. I’d returned from a business trip to NYC late Monday and was exhausted. I nearly forgot it was Election Day, only realizing it when I saw the note on my calendar that morning. It was “just” a municipal election, and I still hadn’t figured out whom to vote for. I was juggling client work and other responsibilities. The temptation not to bother was strong.

But I forced myself. I would have felt guilty if I’d let it go. A half-hour before I had to leave the house for another commitment, I quickly searched the Internet for reliable information about the candidates, made some notes and ran to the polls. It was far too rushed. I should have been paying closer attention to the election all along. But I felt better for voting. The mayor was facing a serious challenge from another candidate whose views and style were divisive. Whatever the outcome, I’d done my part.

As it turned out, the mayor won. But he could have just as easily lost. Only about 21 percent of registered voters in the city bothered to go to the polls.

One of those voters was Mel. The man was weak and frail and his heart was giving out. But he cast his ballot. His last public act was his final important lesson—voting matters.

So despite how busy or tired I am, how crummy I may be feeling, or how minor the election may seem, I will always remember Mel’s example, come Election Day. The right to vote in free elections is precious—never to be taken for granted. And every vote counts, right to the end.

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: Ingmar Zahorsky

Status Report

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Al and I were catching up with friends recently, all of us in our 60s, when the conversation inevitably turned to everyone’s health and the aches and pains that have become all too common with age. I listened, but didn’t say much.

DCF 1.0Then one friend, whom we haven’t seen in quite a few years, turned to me and asked about my health. He remembered when I was first diagnosed, decades ago, and how I had no idea at the time which way it would go.

I explained how scleroderma affects everyone uniquely, and that, although it was complicated, mine was the slow-moving variant. “You seem to be doing really well,” he said. “I’m glad for you.”

He was, of course, being thoughtful. I appreciated his reflection that I look well. But the whole exchange caught me off guard. It surprised me that he remembered those early years, which are now such a distant memory for me—and that this remained how he thought about me.

Even as I deal with my scleroderma every day and write this blog every week, it is not top-of-mind when I describe what’s going on in my life, nor are the details of my symptoms conversation-starters, especially with people I haven’t seen in a long time. It’s there, in the background, ever-present, a force to be reckoned with—but not what defines me. Not by a long shot.

Thirty years ago, when I first became aware that I was dealing with some form of autoimmune disease, it was different. I was terrified and very anxious about what was wrong with my body and the prognosis. I remember cornering friends who were physicians and picking their brains. I’m sure I talked about my health to anyone who would listen. There was so much to process, and the information available at the time was quite limited to the most dire of outcomes.

Within the first year or so, however, I began to pull back. No one outside the medical profession knew anything about the disease, and most of our friends, then in their thirties, were healthy and could not relate to what it meant to have a chronic illness. So I kept to myself. Al was the only person who really knew what I was going through. I sought support and insight from therapists. I commiserated with a couple of friends with their own chronic health challenges, who understood. In fact, over the next few decades, I barely spoke at all about my scleroderma in public.

When I decided to write this blog, nearly four years ago, I realized that I had become so circumspect that it was difficult even to say the word “scleroderma” to anyone other than family, medical professionals and a very few close friends. I felt so self-conscious and awkward about it that when someone inquired about all the bandages on my fingers, I would just mutter something about having chronic ulcers. But I realized that I needed to come to terms with my disease, and the best way for me to do that was to write about it and share the experience with fellow travelers.

After writing thousands of words on the subject, I’m finding that living with scleroderma is no longer a threatening concept or something that I’m embarrassed to mention in a conversation or ashamed to identify as a significant part of my world. Rather, my scleroderma is just there. It’s not the totality of who I am or how I want to be remembered. I wish it would go away, but it won’t. So after three-plus decades, I’ve come to accept it as a part of me and what has made me who I am today. That’s all. Nothing more, and nothing less.

This is my 200th post. To those of you who have followed since the beginning, and to those who are newcomers, I’m sure you’ve noticed that I don’t strictly stick to the specifics of scleroderma—for all the reasons cited here. Living with scleroderma is not just about the details of a complex disease; it’s also about living fully. That’s my personal goal, and that’s what I hope to reflect on here. Thanks for listening.

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: José A. Warletta

Machu Picchu

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Ever since Al and I went to Europe this past summer, I’ve been dreaming of our next trip. No specifics, yet, just a yearning to see more of the world.

machu-picchu-1369310-640x480Like Machu Picchu in Peru. My podiatrist was telling me about his recent visit while he worked on my corns and calluses and ingrown toenail last week⎯a somewhat helpful distraction, as my feet are incredibly sensitive and this was otherwise not a fun appointment.

He described the ancient Incan ruins in a similar way that I’ve heard from others⎯a very spiritual space, beautiful, fascinating history (albeit tragic, given the fate of the Incas as a result of the Spanish Conquest). And he shared pictures on his iPhone, of extraordinary vistas and smiling llamas. Only a five-and-a-half hour flight from Miami.

Very intriguing. Except for one problem. The altitude is about 8,000 feet. My podiatrist is a big, muscular guy, and had no issues with altitude sickness (for which he was quite grateful). He said he was running around like a little kid, he was so excited to be there. But some people on the trip got very sick and needed oxygen.

How would I manage that altitude (assuming we could even afford the trip, which I haven’t bothered to check) with my scarred lungs? The highest mountain I have visited, as best I can recall, is Mount Washington in New Hampshire, just over 6,000 feet. The body begins to react to altitude right around 8,000 feet. Lack of oxygen can cause fatigue, loss of appetite, trouble sleeping and other issues.

There is also the risk of infection from water supplies that are not treated. I have enough issues with bacteria getting into my ulcers here at home, let alone in a place where you can’t drink the water. How would I keep my hands clean?

Right now, of course, this is all just a pipe dream. I know there are ways to acclimate your body to altitude, gradually, and there are medications that can help. I’m sure there are strategies for hand hygiene, if I were determined enough to figure it out.

But there is also the reality of scaling my travel ambitions to my body’s limitations. There are so many places I’d like to see, on every continent. Even Antarctica. In December, the temperature on the Antarctic Peninsula is about the same as it is here in New England (yes, I’ve checked). Going to Antarctica is the closest you can get to an experience akin to going to the Moon.

Not all of those dreams are possible, health-wise or financially. So, I’ll continue to explore options, right now from the safety of my computer screen. I don’t know where we’ll travel next, and it probably won’t be Machu Picchu. But it will be someplace exciting, inspiring and a push outside my comfort zone. Of that, I am determined. It’s the only way to keep growing.

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: Julio Sedano Acosta

Ghoulish

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It’s less than two weeks until Halloween, and my neighbors are ready. As I took my walk this weekend (no small feat, given that the temperature plummeted into the 40s and I really had to push myself out the door), it seemed as if holiday decorations had sprouted overnight.

OLYMPUS DIGITAL CAMERAThere were pumpkins, of course, and cornstalks and potted chrysanthemums in autumn hues, along with gauzy cobwebs wrapped around shrubs. But the big trend this year appears to be lawns planted with miniature tombstones. Forget the little orange lights. Mocking death is all the rage. One neighbor even had three human-size skeletons crawling up their house.

The ghoulishness is intentional, of course, and done in a playful spirit. Nonetheless, I find it ironic, to say the least. We as a society invest so much money and effort trying to avoid and hide the realities of illness, aging and death, that it’s startling to see homes decked out in ersatz graves. Perhaps it’s just one more form of denial. If you make death a joke, it can’t get you.

That impulse is as old as humankind. But as Halloween becomes more commercialized and deathly decorations become more ubiquitous, just another way to jumpstart the Christmas shopping season, the butt of the joke—our very mortal vulnerability—becomes trivialized.

We all live with numbered days, whether we want to admit it or not. Those of us who  live daily with chronic disease are significantly more aware of our mortality, often at a younger age, than those who have the good fortune of excellent health. It’s easy to make light of death when it still seems far off.

This is not to say that death is not fair game for humor and a sense of the absurd. Our ability to laugh at the things that frighten us the most is one of our greatest wells of resilience.

I simply don’t see the point of pretending there are dead bodies buried in your front lawn or some poor soul hanging from your maple tree. (I noticed the latter as we drove along a country road on Sunday, and for a split, horrified second, I thought the fake, stuffed body was real.) It not only fails to amuse me; I find it disquieting that someone would mount a skeleton on their house without thinking about what it really symbolizes.

Maybe I’m just getting crankier as I get older. Maybe it’s just getting too cold and too dark, too soon, as we head deeper into fall.

On the other hand, imagine what good could be accomplished if all that money spent on promoting and buying ridiculous Halloween decorations were invested into serious medical research to find cures for rare diseases like scleroderma. Now, that would be a reason to celebrate.

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: Cathy Smith