Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

3-2-1

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The house is very quiet again. Over the weekend, Al helped Emily, our youngest, move to a new apartment in a new city. She had started her new job a few weeks ago, and come home for a quick visit to collect her furniture and pack up the rest of her belongings. This, following a year-plus search for the right first step in a career in higher education, working with students with disabilities. She found the perfect fit, and we couldn’t be happier for her.

But I will admit, as the U-Haul pulled out of our driveway, I got teary. This was it. She’s launched. Our eldest, Mindi, has been working for almost two years as an early intervention social worker in Greater Boston. So now, both of our daughters, very capable and dedicated young women, are on their own.

It’s one of the big goals of parenthood. We made it.

And the house is very quiet again. I find myself at a bit of a loss for how to fill the silence. It’s different this time from when our daughters were in college and then graduate school. Our home was still the common ground, the place everyone would always return to. Now, for both of them, it will be the place to visit. This is as it should be, but it still feels strange.

Some of this emptiness also derives from the fact that I cannot use my hands in the way I’m used to. My go-to instinct when I’m alone is always to make things, whether it be my writing or sewing or weaving or cooking up something special for dinner. Writing is now much slower with dictation software. The other activities must wait until my digital ulcers make more progress toward healing. I’m relying on Al for a lot of help to do the most basic tasks, from chopping vegetables to opening all sorts of containers. He has been a wonderful support, and I am very grateful for his willingness to do whatever I ask, but I wish I didn’t have to.

I started new medication to ease nerve pain, and it’s taking a bit of adjusting—finding the right dose and adapting to the side effects. The healing process is complicated. I’m back on antibiotics, once again. All of this and the need to constantly problem-solve simple tasks is tiring and leaves me feeling more vulnerable.

On the plus side, it’s finally summer. We ate our first meal on the deck Monday night. The oppressive humidity of the past few days has finally eased, and it will be a comfortable night for sleeping. My bandages have stopped glomming to my fingers as the air has dried out. This evening, as I write, I think (I hope) that my new medication is beginning to take the edge off the neuropathy in my hands.

On to the next chapter.

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.

Stardust

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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

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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.

A Little Progress

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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

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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.