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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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memory

Dated

Evelyn Herwitz · July 26, 2022 · 4 Comments

Several weeks ago, after a heavy rain, I discovered that water had seeped into our basement and damaged a couple of cardboard boxes that had been lying around for far too long. So on Sunday, Al and I finally got around to sorting through the contents, to see what, if anything, was worth salvaging.

Now, of the two of us, I tend to be the one who wants to get rid of stuff that we no longer need. But one of the boxes contained items I was loathe to part with: all my old calendars and planners. Fortunately, my husband humored me, especially since I was able to find a place to store them, in chronological order—half a drawer in an old filing cabinet in the basement.

Why bother? you may well ask. The thing is, those calendars are a record of my life. Even as I have kept journals on and off over the years, I have always kept calendars. And this batch dates back to my freshman year in college. There are notes about deadlines for college papers, the weekend I almost broke up with my high school boyfriend (that happened a month later), searching for my first apartment in grad school, interviews I did while working as a journalist, preparing for my wedding to Al. There are also cryptic entries about the time, right after Thanksgiving the first year we were married, that Al had to have emergency surgery because his spleen ruptured from mono. These are landmarks of a lifetime.

At some point, I know I’ll need to part with them. When we finally downsize someday, there will not be room for all the memorabilia. As it is, I have my old college footlocker filled with journals dating back to sixth grade. And more journals on shelves in my office. Plus all my bullet journals of the past several years. Every so often, I’ll have a reason to dig back into them, to find when I did what.

All the more so, as my memory is not as sharp as it once was. My rheumatologists tell me that scleroderma can cause brain fog (beyond the aging process) and I definitely feel it settling in, a very unwelcome guest.

Do all the details really matter? I don’t know. Writing things down has always been my way to preserve the present and plan for the future. Now, all those notes, accumulated over decades, are my keys to recalling my past. And I’m just not ready to throw them away.

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. Please view Privacy Policy here.

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Filed Under: Body, Mind, Sight Tagged With: body-mind balance, managing chronic disease, memory, resilience

Musical Interlude

Evelyn Herwitz · June 7, 2022 · 4 Comments

As I write, Al is playing the piano. After a few bars, I recognize the tune, “Sixteen Tons,” which was written, I discover with a quick Internet search, by Merle Travis about life in Kentucky coal mines and first released by Capital Records in 1947.

You load sixteen tons and what do you get?
Another day older and deeper in debt.
Saint Peter don’t you call me, ’cause I can’t go.
I owe my soul to the company store.

The song was made famous, though, by Tennessee Ernie Ford in 1955, the year I turned one. Five years later, for my first grade play created by our teacher, Miss Kelly, we mimed and acted out a set of popular tunes. The Tennessee Ernie Ford version of “Sixteen Tons” was one of them, and we pretended to be shoveling coal over our shoulders.

Another song was “Whistle a Happy Tune,” from the Rogers and Hammerstein musical The King and I, which was popularized in a film in 1956 starring Yul Brynner and Deborah Kerr. For that one, we had partners, and one sat on the floor facing the other, who pretended to whistle. We were first graders, after all. My partner wore glasses and sported suspenders and a bow tie. Everyone thought we were adorable.

Whenever I feel afraid, I hold my head erect,
and whistle a happy tune, so no one will suspect
I’m afraid.

It’s one of the strange things about memory, how songs can truly bring you back. That, and the fact that I can still recall those lyrics as well as the nervous excitement of being on stage in front of all the other students and our parents. I can still see the beige backdrop curtain and the little boy who was my partner, pretending to whistle as he rocked side to side in time to the song.

And it’s odd, too, how those two songs, the only ones I recall from the play, resonate with our current moment. The world feels heavy, the news drags us down, and for so many it’s truly a struggle to pay down debt and stay afloat. And we need to find ways to stay brave, dig deep for courage to face the challenges, when every day seems to bring another “unprecedented” outrage.

Make believe you’re brave, and the truth will take you far.
You may be as brave as you make believe you are.

To that end, I share this blog post by Angel Chernoff, “5 Painfully Obvious Truths We Tend to Forget in Hard Times.” It gave me some needed perspective last week. I hope it does for you, 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. Please view Privacy Policy here.

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Filed Under: Body, Hearing, Mind, Sight Tagged With: memory, mindfulness, stress

Slip Sliding Away

Evelyn Herwitz · December 1, 2015 · 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

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Filed Under: Body, Mind, Touch Tagged With: hands, managing chronic disease, memory, Raynaud's, resilience

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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