Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

Fine Tuning

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During this past week, amidst so much bad news—the spread of Ebola in West Africa, the sudden eruption of Japan’s Mount Ontake that killed dozens of innocent hikers, the escalation of air strikes against ISIS in Syria, wildfires on the West Coast and more—I have been singing.

I highly recommend this as an antidote to scary headlines and other depressing thoughts.

In particular, I sang alto in a quartet accompanying our cantor and choir for Rosh Hashanah last Thursday and Friday. We’ll sing again this coming weekend, when Shabbat coincides with Yom Kippur. So we have another rehearsal this Thursday night.

This is a good thing. It’s wonderful to have the beautiful melodies of the High Holiday liturgy circling around in my head, blocking out all the bad stuff.

Services were lovely and uplifting, but it took quite a few rehearsals for me to feel really good about singing again. It’s been at least 10 years since I participated in a High Holiday choir, and I’ve never been part of the quartet. So it was a bit of a shock when we began rehearsals about six weeks ago to realize that I had gotten quite rusty. Despite more than a decade of playing instruments and singing in choirs, when I looked at the sheet music, I could not recall the names of all the notes.

Understand that I played violin for 11 years and was concert mistress in my high school orchestra.

What was happening to my brain? It actually scared me. Early signs of dementia? Age? Fatigue? Some crazy aspect of scleroderma? I didn’t know.

With practice, thank goodness, the notes came back, and by our second rehearsal, I began to regain my ability to sight-read.

A second challenge, however, was tied to scleroderma and its nasty partner, Sjögren’s Syndrome. Although I can still vocalize well, my range is more limited than in the past (I used to be able to sing second soprano as well as alto), and sometimes the notes come out warbled or off by a half-step, because my mouth is dry and I can’t always control my swallowing or how my throat opens.

I figured out how to compensate for some of this by remembering to breathe from my diaphragm, rather than straining my throat to sing louder. But I do have limits. I need to breathe more often, breaking phrases, because my lungs just won’t hold enough air. And if the group goes flat, I cannot hit the low G. Impossible.

I was feeling a bit awkward about all this, wanting to hold my own in the quartet. But then I realized that I had better fill in people, so they would understand and I could do my best for the group. Both the tenor and bass are physicians, and all are friends, so when I took the leap and explained about my health-related issues, everyone was quite supportive. This was a relief. I no longer felt self-conscious, and I certainly enjoyed singing all the more.

We received many compliments after services, how our voices enhanced the experience for the congregation. And we loved singing together. Once we learned the music, we enjoyed the added, serendipitous benefit that our four voices have natural resonance. Truly a delight to harmonize.

So I’m looking forward to our Thursday night rehearsal and to singing once again this weekend. And I hope our quartet will find more opportunities to sing together. The world is overflowing with bad news, and I don’t want to lose those notes again.

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.

Enter Autumn

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The other day, as I was walking Ginger around the block, I heard a flock of Canada Geese honking overhead. I never saw them, but I envisioned them flying in V-formation, heading south.

August is over. I’m writing on the first day of September. Even though summer doesn’t officially end until later this month, Labor Day is always my turning point from the comfort of warm, long days of sunlight into the prospect of cooler, darker, busy fall.

Black-eyed Susans 9-1-14Sugar maple leaves are the first harbinger, speckling the sides of our street for the past few weeks with splashes of gold and tangerine. As the days grow shorter, the trees begin their annual rite of passage, hardening for winter. Today seems odd—it’s muggy, hot and very sunny. But the trees know better, what’s coming.

As I write, Emily and Al are packing a friend’s truck for the drive out to her new apartment. Grad school starts this week, both for her, as a first year master’s student, and for Mindi, entering her second and final year of her professional degree program. Closer to home, public schools began last week. Time, once again, to remember to avoid leaving the house mid-afternoon when school buses from nearby schools travel their routes.

I’ve spent much of my Labor Day weekend sewing. I’m nearly done with a new dress. But, of course, it’s a summery dress, not a fall outfit. For some reason, I am never able to sew ahead of the season. I bought the pattern in July. I’ve had the fabric, a beautiful fuchsia knit, for at least five years, purchased another summer with a different dress in mind.

Two weekends ago, I finally altered the pattern and cut out the pieces. I started sewing in the evenings, until our house was full with family, and I had to clear off the dining room table. So I dug in again yesterday, because I finally had time, and because I didn’t want the dress to wait another full year. I may still get some use out of it before the weather consistently cools off.

I am a slow sewer. I have to pace myself because of my hands, and I can’t manage the fabric as well as I once could, which is why I don’t sew often. Picking out seams when I mess up, which is more often than I’d like, is tricky and tedious. I’m more willing to live with mistakes that no one else will notice, given my limitations. The end result is still good enough, albeit not the perfection I’d prefer.

I would like to sew more. My favorite sewing magazine is full of luscious fall fabrics in autumnal hues. The dress pattern I’m using comes from a designer who creates lovely, easy-to-construct clothes. I hate shopping for ready-to-wear, and sewing is the perfect antidote—not only a way to create unique clothes that actually fit, but also a great meditation. Nonetheless, I have to respect my hands. And my energy. And the number of hours in the day.

Ahead lies a solid lineup of work and creative projects to take me well into the fall. Much as I love the summer months, it’s easier to concentrate as the weather cools and everyone else is back to work or school. The trees may shed their leaves and the geese fly south, the weather will inevitably make me long for warmer days and fewer layers, but I’m looking forward to the crisp crackle of new beginnings.

I just need to sew up that wonderful warm fabric I wove last winter into a jacket, before the days grow long again.

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.

May I Have Your Attention?

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If you spend any time on social media, watching TV or reading the newspaper, by now you’ve undoubtedly heard of the extraordinarily successful “Ice Bucket Challenge” that has raised record-breaking donations for ALS research.

It goes like this: You pour a bucket of ice water on your head while someone makes a video of your antics, upload it to social media, then challenge friends to do the same or make a $100 contribution to the ALS Foundation, which funds research to find a cure for amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. ALS afflicts about 30,000 Americans, attacking the nerve cells and eventually causing total paralysis, most often within two to five years of diagnosis. It is debilitating, terrifying and, ultimately, fatal.

Though dismissed by some critics as “slacktivism”—an all too easy, narcissistic and short-lived way to feel good about yourself for giving to a good cause, with no lasting impact—the Ice Bucket Challenge, as of this writing, has attracted support from celebrities ranging from the New England Patriots to Jimmy Fallon and raised more than $15.6 million for ALS this August, compared to $1.8 million during the same period last year. You read that correctly—a more than seven-fold increase. And that, my friends, is nothing to sneer at.

I’m thrilled for the ALS Foundation that they’ve been so successful. I have known good souls who died of this scourge, and a friend’s husband was just recently diagnosed. I hope and pray that all this money may somehow buy him and others like him some time and better quality of life.

But, of course, now I wonder . . . what would it take to draw that kind of attention and donations to scleroderma research for a cure?

A few folks in the online scleroderma community have been wondering the same thing. Suggestions range from sticking your hand in a bucket of ice water for a few hours to simulate severe Raynaud’s, to wearing a scuba diving suit that’s a few sizes too small to sample tight skin.

What about something more playful—a Mummy Wrap Challenge—you know, that silly game where you wrap up your partner in rolls and rolls of toilet paper to look like a mummy? At least it might get people to laugh, even as they developed some glimmer of what it feels like to be trapped in your own skin with this rotten disease. Maybe Scott Brands could be a corporate sponsor. (I’m kidding. Really.)

All of this copycat daydreaming begs the broader questions: How do you break through the clamor of fundraising demands for so many good causes to build lasting awareness and a solid donor base for scleroderma research? And how do you do it in a way that doesn’t trivialize the cause itself?

I can just imagine, on the heels of the Ice Bucket Challenge’s success, that we’ll soon be inundated with all kinds of attempts to be clever and cash in on self-perpetuating viral social media campaigns for various diseases. As it is, every single organization trying to raise disease awareness has a walk of some kind, including for scleroderma. These walks are successful, up to a point, raising needed funds. But they have also become so ubiquitous that they begin to merge into the white noise of our over-programmed lives, attracting mostly those who already know about the disease in question.

There are just so many, many ways that our bodies can break down. And there is a limit to our attention spans and compassion for so many illnesses. Which, ultimately, is why there’s so little government funding, relative to the need, for research into the so-called “orphan diseases” that afflict smaller numbers, compared to, say, cancer or diabetes.

If all of the foundations devoted to finding cures for obscure auto-immune diseases, including scleroderma, banded together, would we have a better chance of raising awareness and donations for cures? Is there research that cuts across all auto-immune diseases that could benefit those who suffer from the all-too-many variants? Would there be more cooperation and knowledge sharing among medical scientists? Would we have more clout in Congress?

I wonder. One thing is certain, though. The Ice Bucket Challenge proves that there are plenty of people out there with good intentions and money to give to find cures for terrible diseases. It’s just a matter of getting their attention and holding it long enough to dump out a bucket of ice water on a hot summer’s day.

In the meantime, please consider supporting one of these fine organizations that are working toward a cure for scleroderma:

Photo Credit: gfred via Compfight cc

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.

State of Mind

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It’s finally here, a week when Al and I kick back and take advantage of all that New England has to offer in the summer, beautiful and fascinating places that other people travel miles and miles to visit, but just happen to be within a few hours’ drive of our home.

We got into summer day-tripping a few years ago to economize, and now it’s become a highlight of the year. We started off on Sunday with an afternoon in Boston’s South End, browsing stores and artist lofts and outdoor booths filled with all kinds of crafts, a massive indoor vintage market (read, upscale term for flea market), plus a farmer’s market.

Strawberry Banke 7-21-14On Monday, we drove up to Portsmouth, N.H., to Strawbery Banke, a living history museum covering four centuries of life in one of that city’s oldest communities. Period homes are surrounded by heritage gardens, including one with a children’s tea party set amidst fanciful fairy houses.

I wouldn’t mind living there for a while. In the fairy garden, I mean.

Even as I’m enjoying the break from routine, the glorious weather so far and discovering regional treasures, I’m having some trouble separating out from what else is going on in the world. When you leave your home for a period of days or weeks, it’s easier to take a complete mental break. This is essential to recharging and relaxing, so critical to maintaining health and well-being.

But I can’t seem to tear myself away from following news in the Middle East. Trying to set a limit, but I feel compelled to keep up, even as I find the developments so stressful. Too much is at stake.

So I was grateful to find an oasis of peace right here in our hometown Sunday night. A few years ago, Al and I decided to initiate an interfaith dialogue between our synagogue and a local mosque. Since that time, members of both our communities have studied texts together, broken bread and come to understand how much our faith traditions have in common.

Weeks before the most recent hostilities broke out between Israel and Hamas, our friends at the mosque had invited us to join them for a Ramadan break-fast. And so, this past Sunday evening, a group of our congregants and our rabbi went to the mosque and shared in a study session about the meaning of the Ramadan fast. We explained fasting in our Jewish tradition. We asked questions. And we learned, once again, how much we have in common.

What made the deepest impression on me, as I listened, was how both Ramadan and Yom Kippur are intended for introspection, self-improvement, mending relationships, bringing goodness into the world and drawing closer to God. Both faith traditions are deeply committed to peace.

I will carry that awareness with me as I follow the news and pray that the best in both sides will prevail. And I’ll try to create my own inner space of peace, appreciating what is good and beautiful all around me, as I take a break from headlines, deadlines and most of my responsibilities for a week. The alternative is to wear myself out, and that won’t do anyone any good, especially me.

After all, vacation, no matter where you are or how you do it, is really only a state of mind.

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.

And I Didn’t Get Sick

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Sitting in St. Louis’s Lambert Airport on Monday morning as I type on my laptop, watching fellow passengers gather at my gate. Surprisingly, some people are actually sitting and talking with their neighbors, rather than burying their noses in cell phones or tablets. One woman is reading a book. As in, the kind made out of paper.

photo-1But plenty of others are typing on laptops, like me, or talking business on smartphones (loudly—don’t they know others are listening?) or texting or checking emails or playing games on tablets. There are comfy armchairs next to electrical outlets to accommodate all our gizmos. I have managed to get everything into my carry-on and purse, so no worries ahead about losing luggage. I’m getting better at air travel since my trip here last year, when my return flight connected through JFK and my checked bag disappeared for 24 hours.

Despite Midwest heat and humidity, the sky is robin’s egg blue with puffy cumulous clouds. A pleasant end to a lovely weekend with my older sister and family, including a visit to the exquisite St.Louis Art Museum, great meals featuring my brother-in-law’s home-grown vegetables, an al fresco Italian dinner, Shabbat services at a local congregation that felt just like home, sharing the Cardinal’s ups and downs against the Pirates and the Brewers, a Sunday brunch with friends, the World Cup finale, and a drizzly performance of Gershwin’s Porgy and Bess at the outdoor Muny Opera (one hour rain delay halfway through Act 1, and the show was cancelled before the last three songs due to approaching thunderstorms, but even so, the music and acting were terrific).

The highlight of our weekend together was hearing my sister, a talented flutist, perform wonderful music with her woodwind quintet at a local bistro. That, and sharing old family stories. “Are you making that up?” she asked me, laughing, since I can always remember more about the past than she, even as we’re both getting a bit fuzzy about recent events. Ah, the power of longterm memory.

Travel remains a challenge—inevitably, the bandages on my finger ulcers get messy and loose, and I need to manage my energy and joints. Getting through security is exhausting, with all the lifting and sorting, organizing purse, shoes, laptop in gray rectangular buckets and then reorganizing everything quickly so as not hold up the person behind me. But fellow travelers have been very helpful, especially with hoisting my bag into the overhead storage bin and retrieving it. And so far, no one’s been too pushy or impatient.

I also decided to pay extra to fly direct this time, to save wear and tear on my body. Definitely the way to go, when possible. So much less stressful, all around.

Best of all (though perhaps I’m tempting fate, here), I have not gotten sick on this trip as on previous ventures in the recent past. No infected ulcers. No cellulitis. No cold virus. No eye infection. No rotten tooth. My worst physical ailment has been reduced hearing and stuffy ears for about 12 hours after landing. All good, and encouraging.

Travel doesn’t always have to mean setting myself back. It can just mean having a great visit with my Big Sis.

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.