Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

Slip Sliding Away

· · 1 Comment

November disappeared at midnight, slipping out the back door. No snow here yet, but the trees are mostly bare now, except for the oaks that hang onto their shriveled brown leaves well into winter. Temperatures have dropped, and I have to propel myself out of the house for my afternoon walk, bundled in my long down coat and warmest hat. Even wearing insulated gloves, my fingertips burn from the cold.

fallen-leaf-2-1504246-639x425But walk I must, or I get far too stiff working at my computer much of the day. The fresh air clears my head and the exercise gets my heart pumping and blood circulating. It also helps me to remember what I need to do next.

All of my friends in their sixties joke and commiserate about our less-than-sharp memories. There are the words that won’t come when beckoned, the names that elude recall, the purposeful trips to one room or another—punctuated by the inability to remember why it was necessary to go there in the first place.

It’s reassuring to know I’m not alone in this, but I find it disconcerting, nonetheless. All too often, I’ve been misplacing things—my cell phone, or keys, or a book that I was sure I had in one room that seems to have walked to another all by itself. I’ve left the house, certain that I had everything I needed for the day, only to realize when I’m too far from home that I forgot something. I should use a pill minder to be sure I’ve taken all my meds on schedule, even as I hate to admit I need it.

I don’t know if this is simply due to the natural aging process or the fact that I need more sleep or some combination thereof. Hormonal changes since menopause certainly muddied the waters. I feel like my memory gets worse when the days grow short and it gets too dark, too early—it’s time to hibernate, and I just can’t hold as much information in my head.

I keep a detailed journal, files of correspondence and spread sheets to track my work for my clients. I’d be lost without those records. I maintain similar files for family business and long to-do lists. I have a notebook that I carry with me to all my doctor’s appointments, or I’d never remember our conversations. But I used to be able to manage all the day’s details without writing everything down. No longer.

I also can’t remember all the details of family history the way I once could. I used to have vivid memories of my childhood and our early years with our own children. Now, my younger daughter will mention an event that’s as clear as day to her, but I have to dig deep to picture it. Very frustrating.

I suppose that as the layers of memories accumulate over decades, there’s just that much more to sift through. But I want to be able to remember everything the way I used to. Ironic that I can remember how I used to remember. It’s just the what that’s acquired a mind of its own. I keep wondering if this is just a temporary state of affairs, or if I’ve reached some kind of tipping point that requires acceptance of the inevitable: the older I get, everything just takes longer, including memory recall. At least I have all my journals—a trunkful—to fall back on. And all of my other writing.

As for the immediate challenge of memory lapses, it’s time to develop some new strategies. I’m sure there are plenty of apps to help, although keeping a small notepad with me at all times is probably the best, most obvious, low-tech solution. As long as I can remember where I put my pen.

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: fabrizio turco

What Really Matters

· · Leave a Comment

At some point in the blur of my Facebook feed this past week, someone posted a cartoon that resonated. Two women are walking down a sidewalk, commiserating. One says to the other, “I want to stay informed, but I also want to keep my sanity.”

OLYMPUS DIGITAL CAMERAThat is exactly how I’m feeling these days. I’ve had numerous conversations with friends about whether the news really is getting worse, or if we’re just hearing more bad news all the time because of social media.

It’s gotten to the point that I’ve had trouble falling asleep a few nights, overloaded by reports of terrorist attacks, backlash back home, predictions of how the U.S. electrical grid is vulnerable (Ted Koppel’s new book) and the hateful, xenophobic rhetoric of the GOP presidential campaign.

Not good for my health, or yours, or anyone’s. But how to strike the right balance? With so much at stake in this election year, I feel an obligation to keep on top of the news. But I really don’t need all the FB posts about the latest outrageous comments by Donald Trump.

I want to know what’s going on in the world, but there is only so much I can absorb about the latest terrorist attacks. Sadly, very sadly, some innocent people are killed every week, somewhere in the world, by terrorists. I’m struggling with this, but all the social media commentary and debate often do more to alarm than enlighten.

This past week, evil struck home with the death of an 18-year-old Massachusetts son, Ezra Schwartz, who was killed in a terror attack in Israel. He was an exemplary young men, and his death rocked the Jewish community here. My eldest attended his packed funeral on Sunday, because they shared the same summer camp. I woke up several mornings, thinking how his mother must be feeling. Heartbreaking. I can barely imagine what she is going through—and all the other mothers and fathers and sisters and brothers around the world who have lost loved ones to terror.

But at some point, I have to stop and just be here, in the present moment, grateful that I live on a safe, tree-lined street in a comfortable home. I need to focus on the gift of a loving, supportive husband and our two incredible daughters, each dedicating her career to helping others. I need to appreciate caring family and friends, a supportive community, my great consulting clients who enable me to work for myself successfully. I need to remember the blessing of an outstanding medical team that helps me to manage my scleroderma and stay as healthy as I am.

And I need to appreciate the fact that our country, with all of its serious problems, also protects freedom of speech—even if a lot of what I’m hearing these days is disturbing, to put it mildly. Staying informed is critical to our democratic process. I just don’t need to stay informed 24/7. Quality, not quantity of information is what really matters.

All that, and a sense of humor, and a good piece of dark chocolate are the only ways to stay sane.

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: John Nyberg

Fallout

· · 6 Comments

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

· · 4 Comments

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

· · 4 Comments

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