Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

Outside In

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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

What Really Matters

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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

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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.

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