Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

Mercurial

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As I write on Monday, Mercury is making history for us Earthlings by revealing its silhouette while passing between us and the sun. The next Mercury transit won’t occur until 2032. Pretty cool (or hot, depending on which side of the planet we’re talking about—day side temps go up to 800 degrees Fahrenheit, while the dark side can drop to minus 290 F). You can watch a short NASA video of the phenomenon here.

Then there’s the fact that Mercury has been in retrograde for the third time in 2019, from October 31 to November 20. That means the first planet in our solar system appears to go backwards in its orbit, an optical illusion. According to astrologists (as opposed to astronomers), this explains any mishaps you’ve been having lately with technology or relationships, since Mercury, named for the Roman messenger god, governs communications.

Certainly, there’s no rigorous scientific evidence to back up that belief, but Mercury in retrograde sure makes a convenient scapegoat for all the stuff that’s seemed out of whack in my life, of late. These episodes include my recent fall (knee is still healing, although X-rays on Friday reassured me that nothing was broken), the disappearance of my very talented hair stylist (she left her salon and has dropped out of contact, to my great dismay), getting a really nasty cold for the past week (now in remission), and missing a significant typo on a printing job (expensive fix).

What next? Given all the bad news here on Earth these days, it’s easy to get paranoid. Or blame another planet.

Of course, none of my problems are truly earth-shattering. My body can still heal itself, thank goodness, my hair will grow back after the poor haircut I got last week from a less experienced stylist, and the print job was salvaged. The stories we tell ourselves to explain frustrating, annoying, stupid, upsetting events often don’t make much more sense, when held up to the light, than the notion that a planet controls our lives.

Time slips through our fingers like mercury—or quicksilver, if you prefer. Mishaps pass. Misfortunes change. The next time Mercury transits across the sun, I hope all of us will be in a much better place.

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.

Image: Hermes and Athena, fresco by Bartholomeus Spranger, circa 1585, Prague Castle, via Wikimedia Commons.

Best Laid Plans

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A week ago Monday, I was on my way home from a two-day philanthropy board meeting in New Jersey, and I had a plan. My German language class meets in Boston on Monday nights, and I didn’t want to miss it, so I had booked roundtrip flights (plus carbon offsets) from Boston to Newark far enough in advance to get a good price (usually, when we meet, I drive to New Haven and take the train). My afternoon flight back to Boston was due in around 3:30, giving me plenty of time to retrieve my car from long-term parking, drive into the city and park, then get some dinner and be at class for 6:15.

As I said, I had a plan. Air traffic in Boston, however, was in no mood to cooperate. Despite good weather, our flight was delayed in Newark by about an hour due to a busy day at Logan. Still, I figured when we landed after 4:00, I had plenty of time to get dinner. The van to the parking lot arrived right away . . . but as soon as we left the airport, we got stuck in traffic. Why? Because the Chelsea drawbridge was open. Maybe twenty minutes passed until we finally got up to the bridge and . . . the gates went down and the bridge began to rise again because another ship was sailing through. Our driver turned around and drove the back route to the lot, earning a round of applause from all of us passengers. Still, this jaunt had now taken as long as my flight.

I got to my car, it turned on (thankfully), and I started to navigate my way into Boston in what was now high rush hour traffic, but WAZE was not really clear on where to turn, so it took a bit of intuition to find my way downtown. By now it was about 5:45, still enough time to park, grab some takeout, and get to class.

However . . . when I finally reached the garage where I’d reserved a space, the entrance was blocked (are you kidding me?) due to construction. A sign said to take three left turns to get to the alternate entrance, but I was pretty frazzled and hungry at this point, it was drizzling and getting dark, one way streets in Boston can be confusing, and I couldn’t find the other entrance, so I ended up parking on the street.

Usually, street parking in Boston uses an app. Not this space. It required putting a credit card in a meter. I tried dipping my card three times, with my fingers getting numb from the cold, but couldn’t grasp the card and retrieve it fast enough. Aargh!!! I stopped a trustworthy-looking young man who was walking by and asked if he could help, which he did, and I was able to pay.

Now it was after 6:00. And I was disoriented. How do I get to class from here? Trying to figure it out from Google Maps took a few false starts, but ultimately, I found the building, got through the reception desk security and up the elevator to our meeting place at WeWorks, which is shared office space. Our class meets in one of the conference rooms, but you need a key to get in (which our instructor has). And, as I scanned the lounge, no classmates were to be found, which meant they’d already gone to the room.

As I was looking to see if I’d missed someone, I took a step . . . and tripped over a stuffed ottoman near a couch. Wham! I landed on hands and especially on my right knee. It hurt. A lot. A fellow sitting nearby asked if I was okay (“No!” I cried) and helped me up. I could still walk, fortunately, and a woman who was cleaning the kitchen area let me into the locked section of the office space. She also, at my request, kindly filled a bag of ice, which I used to reduce swelling in my knee for the next couple of hours.

No way I was going to skip class after overcoming all those obstacles! But I did leave an hour early, because I was quite hungry, tired, and still had an hour’s drive home. Al met me with a big hug and bowl of warm soup, which was exactly what I needed.

A week later, my right knee remains a bit black-and-blue and is not quite back to normal. If I continue having issues later this week, I’ll go for an X-ray to be sure I didn’t do anything other than sprain it. The rest of my fall-related aches and pains have resolved. Most importantly, I did not hurt my hands. This is the real miracle of the whole episode.

The older I get, the more the idea of falling scares me. If I can find any silver lining in this escapade, it’s the fact that my hands are unharmed, and I don’t seem to have broken anything. I didn’t give up and still attended most of the class. It was an important reminder to be mindful of where I’m stepping. And my husband gives the best hugs in the world.

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.

Image: Alexander Schimmeck

Trousers Rolled

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My grandmother, who was a stylish woman into her 90s, did not like growing old. “These aren’t the golden years,” she’d say. “They’re copper.”

Now that I’m 65, I have a lot more empathy for her sentiments. I don’t feel old, and I don’t think she ever did, either. But our bodies have a way of refuting that belief. All the more so with a disease like scleroderma.

I was in my late twenties when I first began to experience mysterious symptoms of arthralgia and swollen fingers, plus Raynaud’s and fatigue. When I was diagnosed in my early thirties, I quickly realized that what should have been a decade of coming into my own was, instead, a time of aging prematurely. My friends all had kids, already. Everyone else was full of energy and plans for the future. By contrast, Al and I were struggling with infertility, and I was always cold, achey, tired, stiff, losing the use of my hands, watching my face become more narrow and tight, and constantly experiencing strange symptoms, like painful breathing that turned out to be a bout of pleurisy.

It was hard to share with anyone but Al. I didn’t like going to the local scleroderma support group, because the vibe was all about how bad everyone felt. My doctors were supportive and knowledgeable, and physician friends provided some comfort. But, basically, I just kept my feelings to myself.

As my health began to improve (due to Penicillamine, which has since been discredited in the medical literature as a treatment for scleroderma, due to small research sample sizes, but which I believe saved my life), and our two wonderful daughters arrived—one by adoption and the other, by birth—I regained some dexterity and most of my energy. I went on to have a very full and active life. Thankfully, I still do.

But I also was always aware that my body was still aging faster than most of my peers’. Now that we’re all in our ’60s and early ’70s, however, that comparative trajectory has evened out. Our bodies fail, one way or another, at some point or another. All those years of dealing with limitations have given me one strange advantage—I’ve been managing with less for so long, that the inevitable losses of dexterity, mobility, and energy, as well as accompanying discomforts, just aren’t that upsetting. They’re simply familiar.

Not that I would wish scleroderma or any other long-term chronic illness on anyone at a young age—or any age, for that matter. But learning to cope with physical limits over decades has certainly made this transition somewhat easier. Or, perhaps, more silver than copper.

P.S. If you’re wondering about the title for this post, it’s drawn from The Love Song of J. Alfred Prufrock, by T.S.Eliot, a poem that takes on new depth for me with each passing year.

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.

Image: Pineapple Supply Co.

Best Stress Antidote

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With all the turmoil in our nation and the world, I’ve been feeling a bit overwhelmed this past week. So it’s worth the time to pause and just take stock of what is going well. Even living with scleroderma, I actually feel relatively healthy and have a lot to be grateful for:

  • Since I had my hand surgery two years ago this fall, I have had minimal digital ulcers. Most of the time, I just have bandages on both thumbs, due to all the calcium deposits in each. But that’s it. Pretty amazing after so many years of multiple ulcers. My hand surgeon essentially removed all the tissue that had the worst circulation. Even if my hands look odd, what’s left is pretty healthy.
  • Despite all the hassles of switching to Medicare, especially Part D drug co-pays, a significant portion of my health expenses are still covered—and I have a good, affordable Medex Plan that includes my long-time team of doctors.
  • Although my lead rheumatologist recently told me he is retiring this February, he has been mentoring a replacement. It will be an adjustment, but I won’t have to go searching for someone knowledgeable or have to worry about a long wait for getting into a new practice.
  • We have the resources to pay for complications like my tooth extraction and implant, as well as for routine medical care.
  • I have energy and strength to lead an active life, run my own consulting practice, take hikes, participate in exercise classes, and keep up my daily routine.
  • I live in a time and place where there are excellent medical professionals who understand this complicated disease, who take me seriously, and who give me good advice that I can trust.
  • Because I work for myself, I can set my own schedule. On days when I’m more tired, I can cut back. On days when I have more energy, I can do more projects. It evens out over the long run, and I always hit my deadlines.
  • It’s fall. The days are getting shorter and colder. But my house is warm, and my husband never complains about setting the thermostat for my needs.
  • Even as my dexterity is limited, I can still cook a gourmet meal for company, weave beautiful textiles, sew a garment, draw, write.
  • I have the loving support of my daughters, other family, and friends. Most especially, I have Al, who has never babied me with this disease, but always given me the care and encouragement that I’ve needed, when I’ve needed it.

Okay, now I feel better. Those are my top ten. How about yours?

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.

Image: Ricardo Gomez

Stone Walls

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I’m posting a day late, again, because of Jewish holidays, again—this time, the Festival of Sukkot, which began on a Monday and Tuesday this year. Al always builds our sukkah on our back deck. It’s a three-sided booth with pine boughs for a roof, where we eat our meals and visit with friends during the holiday. You have to be able to see the stars through the roof at night. Among many concepts, Sukkot is about recognizing the transience of life, our connection to the natural world, and gratitude.

On both afternoons, in sunny fall weather, we took long walks in the woods, savoring the light illuminating brilliant foliage as maples and birches flamed red and orange and gold. As we walked trails, leaves floated down like so many graceful hang gliders, en route to the forest floor.

The air smelled moist and rich. I picked my way carefully over gnarled tree roots and rocks, along pine-needle-carpeted trails that wound around old stone walls. Ever a feature of New England forests, these tumbled grids mark long abandoned pastures, hard to imagine now in such a well-established woods. But they got me to thinking about walls, so intensely referenced these days.

Which led me to reread Robert Frost’s Mending Wall, a poem with timeless resonance. A few verses (you can read the full poem here):

Something there is that doesn’t love a wall,
That sends the frozen-ground-swell under it,
And spills the upper boulders in the sun;
And makes gaps even two can pass abreast. . . .

I let my neighbor know beyond the hill;
And on a day we meet to walk the line
And set the wall between us once again.
We keep the wall between us as we go. . . .

One on a side. It comes to little more:
There where it is we do not need the wall:
He is all pine and I am apple orchard.
My apple trees will never get across
And eat the cones under his pines, I tell him.
He only says, ‘Good fences make good neighbors.’ . . .

Before I built a wall I’d ask to know
What I was walling in or walling out,
And to whom I was like to give offense.
Something there is that doesn’t love a wall,
That wants it down. I could say ‘Elves’ to him,
But it’s not elves exactly, and I’d rather
He said it for himself. . . . .

The stone walls we passed in the woods, what was left of them, were dark as the surrounding trees, speckled with golden leaves. No one has mended them for at least a century, maybe more. And no one has minded. What once was essential matters no more. Unseen, leaves drift to the forest floor.

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.