Stardust

In his new book, Astrophysics for People in a Hurry, Neil deGrasse Tyson makes this stunning observation:

The universe continues to evolve. And yes, every one of our body’s atoms is traceable to the big bang and to the thermonuclear furnaces within high-mass stars that exploded more than 5 billion years ago.

We are stardust brought to life, then empowered by the universe to figure itself out—and we have only just begun.

This is a very elegant way of saying, yes, we are all interconnected, here on Earth and, in ways we do not yet understand, to the entire Universe. It’s a Big Concept, mind-blowing.

I had a tiny taste of that interconnectedness last week when I picked up a voicemail. The message was from a woman who identified herself as living in New York City. She had found my number through an Internet search (which was a little creepy, I have to admit—am I really that easy to find?) because she was in possession of a wedding scrapbook that belonged to my parents.

The date on the album was July 1, 1949—their wedding day.  She explained in the voicemail that she had acquired the album through an antique store in Beacon, N.Y., a town on the Hudson River about an hour north of where my parents used to live. She left a number and hoped I would call back.

To say I was shocked is an understatement. My mother died in 1999. A couple of years later, my father’s health began to decline, and we needed to move him into an independent living community. When we sold the house, there was an estate sale. I wasn’t present, but my older sister and my father were. Dealers came before the sale was open to the general public, looking for items to buy and resell. Later, when I was helping my father move into his new apartment, I realized that the wedding album had disappeared. All these years, I’ve wondered what happened to it.

Given the uncanny accuracy of the date on the album and location of the antique store, plus the friendly tone of the woman’s voice, I decided to respond. I also looked her up on the Internet and found that she had a studio in Manhattan. Her recording on her phone sounded legit, so I left a message. A couple of hours later, she called me back.

It turns out that she is an artist (hence the studio) and an aficionado of 1950’s ephemera. The scrapbook apparently contained all sorts of correspondence, including telegrams, congratulatory cards, newspaper clippings and more. About 15 years ago, she and family members had been nosing around the antique store, when she was drawn to my parents’ album. Although she didn’t purchase it, her family saw how much she liked it and bought it for her as a gift.

Much as she enjoyed it, early on, she considered trying to return it to a family member. But this was before the Internet was so robust. Recent events in her personal life compelled her to try again. And that’s when she found me.

(Mystery solved at last, it boggles my mind to think that the dealer who bought the album in the estate sale never bothered to check with my father and sister, sitting right there, to be sure that such a personal item really was for sale. But I digress.)

A couple of days after the artist and I spoke, a large package arrived via FedEx. It was the long lost wedding scrapbook, a revelation to me, because my memory was of a photo album, rather than such a rich compendium. Not only does it include a page from my mother’s diary on the day she got engaged to my father; it also includes many personal letters, such as my grandparents’ ecstatic correspondence when they learned that my mother was pregnant with my older sister. In the center of the album are my parents’ wedding portraits, plus two wonderful photos of my grandmothers in their elegant hats, holding glasses of champagne. I thought these images were lost forever.

The Internet is a source of so much that is vile in this world—and so much that is magnificent. Through the ether of cyberspace, empathy can spread. My deepest gratitude to the artist who thought enough to consider how much it would mean for our family to recover this lost treasure and took the risk to find me. Stardust, indeed.

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.

Adaptations

Last week, I met with a wonderful occupational therapist about how to better manage tasks I do with my hands while my ulcers heal. She was a great listener, compassionate and insightful. And I learned a thing or two.

Adaptive tools have come a long way in the decades since I last had a consult of this type. I’m still skimming the catalog she gave me to figure out what will be most useful.  Already on order: a tool to help with personal hygiene, which is one of my biggest challenges right now.

In addition, I cut a piece of the foam tubing she gave me to slip on my computer stylus, and now I can use it in my right hand for typing along with two fingers on my left hand. The dictation software is good, but it does not allow for fluid writing for my more creative projects. So this is a stopgap.

And now for a really neat trick that she taught me — a new and improved way to tie my sneakers. There are plenty of gadgets, including elastic laces, that can make this easier. But this trick is just too cool, so I pass along to you:

Step 1: Tie lace left over right.

Step 2: Tie lace right over left. (If you sail or were a scout, you’ll recognize this as the beginning of a square knot. And, yes, you can also do it right-over-left and then left-over-right!)

Step 3: Insert the two ends of the laces through the center of the knot, leaving a loop on either side to form a loose bow.

Step 4: Pull each loop evenly at the same time to either side, and, voila, you have a neatly tied shoe! You may have to play with the size of the knot opening to make it work; a little practice makes perfect.

You can easily tie a double knot to secure it. Whoever was the genius who figured this out, my heartfelt thanks. May the adaptive force be with you!

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.

By Way of Explanation

Just over a month ago, I received a comment from a disgruntled reader. She chose to unsubscribe from this blog because she felt I was dwelling too much on politics and religion, and not enough on issues related to the scleroderma community. That’s fine. She was certainly entitled to her opinion.

Ironically, in the weeks since, as I’ve slogged along with finger ulcers et al, I’ve been writing about nothing but micro-level health challenges that are the daily wear and tear of this disease. My fingers will be a long time healing, still (saw a vascular surgeon/wound care specialist recently who confirmed [a] the ulcers will need months of patient tending, [b] debridement is neither required nor recommended at this point, thank goodness and [c] I’m doing everything right), and I’m tired of writing about them.

The way I see it, if all I focus on are the minutiae of how I feel every day about my health, then the scleroderma has won. The healing process is so slow with these ulcers that if I keep reporting about it, the time seems to drag even more. My big victory of the week is I can now type again, with three fingers—two on the left, one on the right—as long as I don’t overdo. That means I can use my laptop and even write lying down on the couch, as I am right now, to rest my back (which is also healing slowly).

But there is much more to life than all this. There are big, troubling issues affecting our country and our world, challenging all of us. There are happy events (I had a great visit with my sister Memorial Day weekend; our younger daughter just landed a wonderful job), sad events (the recent death of a mentor of mine), and everything in-between.

Ultimately, living with scleroderma is about living. I don’t want to be reduced to writing only about this disease, even as it plays an outsized role in my world. I am more than the sum of all my doctor’s appointments and health challenges, and so are you, Dear Reader. That’s what I intend to keep writing about, and I hope you’ll stick around.

P.S. Apologies if you received a duplicate email of last week’s post—the blog misfired.

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: Dawid Zawila

En Route

Traveling always involves a lot of logistics. Last week, all the more so. Months ago, I had planned a three-day, Sunday-through-Tuesday business trip to NYC. The first two days were devoted to board meetings for a philanthropy of which I am a trustee, including a day of strategic planning that I had helped to organize. The third was a full day meeting with clients. I had piggy-backed that third day onto the first two in order to save myself physical wear and tear from traveling to Manhattan twice in one month.

What I had not been able to anticipate, however, was the state of my hands and my back (of which I have written a lot in recent posts). What to do? I couldn’t/didn’t want to cancel out, but I wasn’t sure how to manage. Would I be able to handle my luggage? How would I keep my hands from getting more damaged or protect myself from picking up yet another infection?

My initial plan to protect my hands from lugging a suitcase on and off trains and through subways—use a backpack—was unworkable. With all the supplies I needed to bring for hand maintenance, personal hygiene, medications, etcetera, even packing very lightly for clothing and using Al’s nylon backpack, the thing was way too heavy and unwieldy for my slow-healing, strained back. So I switched over to my wheeling carry-on. But what to do about getting around?

Aha! Obviously, I had to rethink ground transportation. Time to rely on taxis or Lyft or other options. Saving money was not as important as saving my health. And if I did use the subway, I decided I’d only do it if there was elevator access or easily walkable ramps.

As for pulling my bag along Manhattan sidewalks, I planned to keep that to a minimum, not only because of the crowds, but also because many of the streets and sidewalks in Midtown are either under construction or aging and in need of repair.

Sometimes I improvised. When one of the trains I took had split upper and lower deck seating, I stayed in the middle on a jump seat to avoid lugging my luggage and made friends with the conductor, who helped take my bag off the train to a lower platform.

Everything worked out better than expected. From my Monday meeting, located at a Wall Street law firm, I was able to get a courtesy car ride to my Midtown hotel. On Tuesday, I simply checked my bag at the hotel, went to my meeting in Chelsea, and picked it up on my way back to Grand Central, which was a five minute walk down Park Avenue. Train transfers were relatively easy. The one time I used the subway, I only had to carry my bag up and down about six steps.

As for my back, I wore a thermal heat pack all three days and brought my deflatable back pillow to every meeting. I made sure to keep up with regular doses of acetaminophen and ibuprofen. And I took meticulous care of my hands.

It was a long trip on my own when I wasn’t feeling my best, but successful in the end. As my train pulled into New Haven, where I had parked in the overnight garage, I was exhausted and relieved. I couldn’t wait to get in my car and drive home. But. The one thing I hadn’t planned for, the inevitable travel glitch that had nothing to do with my health issues and everything to do with mindfulness or the lack thereof was this: I’d left an interior light on in my car when I’d parked three days prior, and the battery was dead. An hour later, AAA arrived and charged it right up, thank goodness, but I was not a happy camper during the wait.

Successful travel, especially when you deal with chronic health issues, requires a lot of advance planning. But the unexpected is inevitable. You can be certain I will always check interior light status whenever I leave my car from now on. But the other lesson reinforced from my trip was that I can’t anticipate everything. Nonetheless, when traveling alone, I can trust myself to solve it.

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.

Fault Lines

This past week brought more doctor’s appointments. The culture on my ankle ulcer came back positive for a rare gamma-negative bacteria. And, of course, I’m allergic to the sulfa antibiotic that is the treatment of choice.

So it was time to see my infectious disease specialist. And, of course, he was not available. Another very experienced specialist was covering for him, but when I asked for an appointment, I was told that his next available was in three weeks.

Now, I don’t know if the receptionist really understood what the doctor’s specialty is all about. But I wasn’t about to take no for an answer.

“This is an active infection,” I said. “I have to see him this week.”

She took my phone number and told me someone would get back to me. Soon after, I got a call from one of the nurses, who said the doctor had reviewed my test results and wanted to see me that day. Which I did. He gave me a prescription for a different class of antibiotics, and so far, it seems to be working.

It pays to be assertive, especially when dealing with the medical profession. Over the past three-plus decades, I’ve learned that you have to advocate for yourself. I don’t mean being obnoxious or yelling at hapless appointment secretaries. But medicine involves a lot of gatekeepers, some of whom insist on sticking to rigid rules of access. I do my best to be firm, polite, yet clear about what I need. That requires a willingness to push the envelope.

It also requires creative problem-solving. The other appointment that I needed was to see a wound care specialist. Several of my digital ulcers are somewhere on the skin damage continuum between second and third degree burns. I know they are going to take months more to heal. This is the worst they’ve ever been, and I need some serious advice.

When I saw my podiatrist about my ankle ulcer, he had referred me to the wound care specialist at his hospital, an hour-and-a-half from home. This physician is very good. But when I called for an appointment, I was informed that one of my other doctors, who is familiar with my digital ulcers, would have to send some medical notes.

Enter the world of HIPAA releases. I had two choices: to send records from my Boston Medical Center rheumatologist or from my rheumatologist at home. BMC, I soon discovered, would take 7 to 10 business days to process the written and faxed request. If I went through my local medical center, the request would only take a few days. But there was still the matter of then getting an appointment. All told, I estimated it would be a good month before I could actually be seen. Too long.

So, when I saw the infectious disease specialist last Wednesday, I asked his advice for a wound care specialist at my local hospital. He gave me the name of a vascular surgeon, and I then asked Al, who works at the hospital, to find out what he could. One of his colleagues, another social worker who knows this doctor’s work with patients, gave a sterling recommendation. I called the wound clinic and immediately got an appointment for this coming Thursday.

I’ve learned a great deal from living with scleroderma for three-plus decades about how to get the right care. You have to be tenacious, no matter how lousy you may be feeling that day. You have to understand the complexity of your disease, research about treatments, what’s covered under your insurance, what isn’t, how to find the right physicians, and how to get the answers that will really help you to heal.

And that’s just for starters. At the granular level, managing a chronic “pre-existing condition” is a whole lot more complicated—and stressful, and exhausting (not to mention expensive and time-consuming)—than soundbites or political slogans can ever convey.

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: Zoshua Colah

A Little Progress

I took a walk around the block Monday afternoon, my first such excursion in three weeks. The weather is starting to clear, and so are my back pain and the sore ulcer on my left ankle. All the leaves have unfurled, and the streets are cloaked in green. Crabapple petals scatter like pink snow on neatly trimmed lawns. The red tulips in our rock garden have bloomed, and the blue hydrangea that Al gave me for my birthday is taking root.

It’s a relief to begin to feel like myself again. Over the past couple of weeks, I was able to rule out a compression fracture in my spine and see a physical therapist who did a thorough evaluation. She confirmed my sense that I had sprained my back. No nerve damage, thank goodness. Heat treatment, the right set of stretching exercises, and a better mix of acetaminophen and ibuprofen are helping me to heal.

As for the ulcers on my ankle and fingers, I received some very good advice from my excellent podiatrist, who also knows a great deal about wound care. Among other things, he gave me some Lidocaine gel that has made a huge difference in my ability to tolerate my ulcer dressings while I wait out the healing process. He also gave me a special mesh infused with silver that is helping my ankle. Silver has natural antibiotic properties, and the results so far are promising. I’m awaiting the outcome of a culture to see if I need additional oral antibiotics.

I plan to get a consult with a wound care specialist sometime in the not-too-distant future for advice about better ways to manage my ulcers. I’ve been using the same approach for decades, and there are new techniques and treatment options that I hope to discover so that my skin doesn’t break down as badly again. No guarantees, of course, but this has really been a siege that I don’t want to repeat, if at all possible.

Meanwhile, the gloomy rain and chilly weather that have encased New England for the past few weeks are about to end. We’re expecting temperatures in the 80s by midweek. It can’t come too soon!

So, here’s to the end of a downright nasty spring. Summer doesn’t officially start for another month or so, but I’m looking forward to Memorial Day. If you’re going through a rough patch yourself, I hope you find the good medical care and healing that you need, too.

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.

Feed the Dragon

This is an experiment. I am dictating this blog post with voice activation software. I’ve considered making this investment for some time, but my digital ulcers finally made the decision for me. My fingers have been so sore over the past few weeks that the only way to help them heal is to stop typing. And I can’t stop. Writing is my livelihood and lifeblood.

The investment, even in the first few hours of learning how to use my new Dragon software, is already paying off. This is an absolutely amazing experience. The transcription is quite accurate. I still have a lot to learn and, to some extent, I’m mixing keyboard corrections with dictation. But 99 percent of what I am writing here is voice dictation. And that’s just with the limited skills I’ve learned in a basic tutorial.

One of the great things about dictating is that the words appear on the screen faster than I can possibly type. At the same time, the process of translating thoughts to a sequence of spoken words is going to take some getting used to. Even as I hear the words in my head whenever I type, there is a seamless mental process that translates those words through my fingers to the keyboard and onto the screen. In speaking those words to the dictation software, I almost have to ignore the sound of my voice in order to focus solely on the words before me.

That said, I am thrilled to have such a powerful alternative to typing with my fingers. I’ve been playing with emails and text messages, and this blog post is my first attempt at writing something longer.

There are, of course, some amusing aspects to the software. Think AutoCorrect on steroids. There is a whole lexicon of commands to learn. For example, if you mess up what you just dictated, you say “scratch that.” However, I actually had to type that phrase just now, because the software thought I was giving a command. So, there’s a lot to learn.

I also wonder how dictation will affect the way I hear the music of words, phrases and sentences. Will my writing become more conversational just because I’m speaking to my computer? Or will it sound more stilted to my ear because I have to speak in phrases . . . at least for now.

My new Dragon has little wings. It needs nourishment and attention. We must exercise together before it will really be able to fly. I can’t wait to see the view.

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: Dragon Medallion, Ming dynasty (1368-1644), silk and metallic thread tapestry, Metropolitan Museum of Art.

Routine Maintenance

On Monday, I saw my rheumatologist at Boston Medical Center—regular appointment, well-timed. It’s been a tough couple of weeks, pain-wise, between my back issues and very irritated digital ulcers. So there was a lot to discuss, first with the Fellow, and then my doc.

But, in the end, it all came down to basics: Yes, I have a muscle spasm in my back that will take more time to heal on its own. And, yes, my seven finger ulcers and left ankle ulcer are taking forever to heal, per usual. No real options but to be fastidious in my care and wait for warmer weather. My infected knuckle has cleared, and I can stop the antibiotics. An X-ray of my left thumb revealed a galaxy of calcium deposits. At present, they don’t hurt, and it doesn’t make sense to undergo more hand surgery to remove them, because the trauma caused by the surgery would probably be worse than just letting them float for now.

My right eardrum is not vibrating properly according to a hearing test I had recently, due to an inflamed eustachian tube for the past year. But my doc agreed with my assessment that the procedure recommended by the ENT—which involves inflating the eustachian tube with a tiny balloon—is not worth pursuing because the research I dug up stated that it probably requires a general anesthetic, given my very narrow nasal passages, and is only successful 30 percent of the time, with no proof of lasting effects.

I decided to pass on a back X-ray recommended by the Fellow to check for any skeletal issues, because I’d already had one X-ray that afternoon of my hand (enough radiation exposure for one day) and there wasn’t any real indication of bone issues with my back pain. I accepted a prescription for medication to relieve the muscle spasm. Can’t hurt to try it overnight and see what happens. It only cost $1.42. I picked it up on my way home, along with a couple more thermal packs for my back. (Thank goodness for those thermal packs—only way my lower back could withstand the 100 mile round trip drive.)

The best thing I did for my back last week was to get a good electric heating pad, rest, read and do stretching exercises. The best thing I did for my sore fingers was to stop typing. There is no magic pill for any of this stuff. Only a boatload of patience, common sense and determination to keep on going.

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.

Flat Out

I’ve been writing lying down all day. For some crazy reason that I cannot pinpoint, I screwed up my back over the weekend. Did I sneeze the wrong way? Did my cough cause a muscle spasm? Whatever the explanation, I find myself unable to sit or stand for long stretches. I can’t lift a pot of water or a platter of pasta.

Ridiculous.

This follows at least a week of managing digital ulcer pain with a combination of antibiotics to control an infection, over-the-counter pain meds and my slew of bandages, dressings and ointments. Not to mention fighting a respiratory virus. Which is why I was coughing and sneezing.

Pain is exhausting. It interrupts sleep and demands attention. It voids concentration. It gnaws at your moods and throws obstacles in your path.

Most of all, it slows you down. There’s writing I’ve postponed because I need to rest my fingers. There are errands I want to do and places I want to be that must wait until I feel up to driving. Nothing to do but stretch and wait and rest and respect my body’s need to heal.

It could be much worse, I know. But it’s enough, already. I want to get back to my regular state of quasi-normal. Maybe I’ll get lucky and sleep it off. More likely, I’ll just need to dig deep for more patience and wait it out.

Aaargh!

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: Aimee Vogelsang

In-between

On Tuesday, I turn 63. It’s one of those in-between birthdays, halfway from the momentous 60th to the liberating 65th (assuming Medicare doesn’t disappear in the meantime). The forsythias are in full bloom, at last, and the maples lining our street have flowered—prompting my annual early spring allergies or a cold, I’m not sure which.

Even still, I’m grateful for the trees’ chartreuse tinge, the daffodils in our neighbors’ yards, the violets, the tulips reaching skyward. My birthday falls on the last day of Passover this year, and I’m looking forward to some real cake when we go out for dinner in the evening to celebrate.

These are small pleasures. It’s essential to savor them when headlines blast bellicosity. Anticipating my birthday a year ago, I could have never imagined we would be wondering if North Korea really intends to fire nukes at Seattle, or whether the U.S. successfully sabotaged Pyongyang’s missile test this past weekend.

If history is any teacher, much as I would like to ignore the news, we need to pay attention. I have spent much of the Passover holiday reading the haunting memoir of Stefan Zweig, a Jewish Austrian playwright, novelist, poet and essayist who chronicled the destruction of Europe during the two World Wars in The World of Yesterday. (That 1942 memoir and some of Zweig’s stories inspired Wes Anderson’s 2014 film, The Grand Budapest Hotel.)

One of the most famous writers of the 1920s and 1930s, until his literary career was destroyed by the Nazis and he was forced into exile, Zweig struggled deeply with the role of the artist in response to the politics of his day, when dreams of a better world crumbled into ashes. His questioning parallels my own internal monologue as our nation wrestles with the meaning and value of our democracy. He provides no easy answers, even as he strives to remain true to his principles of the uniting humanism of artistic endeavor.

Among many striking passages, Zweig recalls a mixed sense of calm and foreboding on his 50th birthday. The year is 1931. Having survived the Great War and ensuing impoverishment of Austria, Zweig describes contentment with his rebuilt life. He has achieved literary fame and comforts in his home in Salzburg. He has been inundated with gifts from his friends, who include many of Europe’s leading writers, artists and musicians. But something eats at his consciousness:

Strange to say, the very fact that I could think of nothing to wish for at that moment made me feel mysteriously uneasy. Would it really be a good thing, some impulse in me asked—not really my conscious self—for life to go on like this, so calm, well-regulated, financially profitable and comfortable, without any more tensions or trials? Isn’t it, I asked myself, wrong for your real self to be living this secure, privileged life? . . . Wouldn’t it be better for me—so I went on daydreaming—if something else happened, something new, something that would make me feel more restless, younger, bringing new tension by challenging me to a new and perhaps more dangerous battle? (Translated by Anthea Bell, University of Nebraska Press, 2009)

The tragedy and irony of that premonition is not lost on Zweig, who, by decade’s end, was forced to reclaim “a harsher, harder life from its ruins and rebuild it from the ground up.” I read these words, and I wonder, too, what’s in store.

The world feels fundamentally different to me on my 63rd birthday. I am grateful for so much—family, friends, home, community, creature comforts. Yet the accelerating pace of disruption overwhelms. Some days it’s hard not to get caught up in dark predictions. I struggle to find the balance between staying informed and staying sane. As Zweig wryly notes toward the end of his memoir (alluding to radio and the speed of news transmission), “The greatest curse brought down on us by technology is that it prevents us from escaping the present even for a brief time.”

Nonetheless, as Zweig speculated on his birthday 86 years ago, there is an immediacy and strengthened sense of purpose in a time like this. I feel as if my words matter more, now, than a year ago. I’m still finding my voice. I completed the first draft of my novel, which I have been writing for two-and-a-half years, about a month ago. It’s set in World War I. The parallels resonate more strongly than ever. The year ahead will be devoted to revisions, and new words, and finding the courage to say them.

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: Portrait of Stefan Zweig, Austrian Cultural Forum