Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Anniversary Waltz

· · 2 Comments

Last week, Al and I celebrated our 31st wedding anniversary. We agreed that we wouldn’t buy gifts. More important just to spend quality time together, a welcome break from the usual hectic midweek schedule.

OLYMPUS DIGITAL CAMERAWe shared a quiet, delicious meal and a bottle of wine at our favorite Afghan restaurant. Then, on Saturday night, we enjoyed an extraordinary performance by Cirque de Soleil. And we began to plan our next trip for this coming summer—another special adventure to look forward to.

All of this was good and lovely and memorable.

But it was a very different kind of sharing on Sunday night that once again impressed upon me the blessings of our three-decades-plus marriage.

I was in the process of cooking dinner, when I reached out to open my small Cuisinart to chop up some parsley—and smashed the tip of my still-healing, infected digital ulcer on the gadget’s plastic top. It really, really hurt. Like slamming your finger in a car door.

I yelled and cursed as I walked in circles around the kitchen, trying to breathe my way through the sharp wave of pain. Usually this passes within a minute or so, but this time I really did a number on myself. The pain would not quit.

Al had been reading in the living room. In the midst of my outburst, he walked into the kitchen, opened his arms and gave me a big, soothing hug. It didn’t take the pain away, but it did help me to relax a little, the first step in gaining control of acute pain.

During the course of our meal, he proceeded to distract me, since I was still pretty uncomfortable. By the time we finished, with the help of some Tylenol, I was doing a bit better.

As Al washed the dishes, I reached into the cabinet near the sink for a mini Three Musketeers, left over from Halloween.

“You deserve that!” he said. I laughed, and agreed.

Just another episode of managing my scleroderma. We’ve been through this many times. He knows what to do, without my asking. And he never, ever complains about all the mishegas that this disease has brought to our marriage over these many years.

That is something worth celebrating. Love you, Al.

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: Naama y.m.

Outside In

· · Leave a Comment

It’s that time of year when my digital ulcers flare up as the weather gets colder and drier. So, sure enough, a couple of weeks ago, the tip of my middle left finger got infected. Right on schedule. At least it’s been more than four months since I had to go on antibiotics. And I caught it soon enough so the pain didn’t wake me in the middle of the night.

tree-1-1498002-640x480Now, about ten days since I started oral antibiotics, after the topical version failed to work, I’m beginning to see improvement. Over decades of dealing with this problem hundreds of times, I’ve noticed that the turning point is when the outer perimeter of the ulcer begins to heal. The damaged skin slowly repairs itself from the outside in.

Not unlike a tree. When bark is damaged, especially when there’s a big gash, the tree will compartmentalize the wound by forming a callus layer of bark that looks like a thick ring. Gradually, the ring grows inward, sealing off the decayed tissue and preventing the spread of pathogens throughout the tree.

It makes sense, when you think about it. The worst part of any wound is at the center. The healthier cells are around the perimeter. So any healing would have to start where the tissue has the best circulation and access to nutrients and medications and other healing mechanisms.

Which brings me, in a roundabout way, to this past week of more horrible news here in the U.S., with the mass shooting in San Bernadino. Our nation is in great need of healing. And it certainly won’t come from the fear mongerers at the center of the public debate.

The healing will only come when people of good will speak up from the periphery and insist on sane, safe solutions to the proliferation of weapons of war in this country. We are facing not only a threat to national security, but also a public health crisis.

To those of you who are wondering why I’m writing about this instead of sticking to living with scleroderma, I can only say that it’s weighing heavily on my mind. I feel stressed every time I watch the news. That stress affects my body’s ability to heal.

Each of us has a part to play in helping our country to heal. None of us can stand at the edges and simply watch. I’m trying to sort out my own piece, as I write to you here.

With that in mind, I leave you, Dear Reader, with John Donne’s famous words, written originally in the form of a meditation in 1624:

No man is an iland, intire of it selfe; every man is a peece of the Continent, a part of the maine; if a clod bee washed away by the Sea, Europe is the lesse, as well as if a Promontorie were, as well as if a Mannor of thy friends or of thine owne were; any mans death diminishes me, because I am involved in Mankinde; And therefore never send to know for whom the bell tolls; It tolls for thee. . .

Meditation 17, Devotions upon Emergent Occasions

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: Rene Cerney

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.