Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

lungs

Spotlight

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This past Sunday, I sang a solo. Our congregation was celebrating our beautifully renovated synagogue. I’m the alto in a quintet that sings on the High Holidays and for special occasions. One of our numbers was a barbershop mix set to the tune of Billy Joel’s “For the Longest Time.” I had the lead.

What a great piece to sing! And it’s rare for an alto to have the main melody. We’ve been practicing for weeks.

But, of course, despite all that preparation and encouragement from my fellow singers, I was nervous. Not just the typical oh-my-gosh-I’m-performing-in-front-of-hundreds-of-people nervous. It was scleroderma-related.

Years of lung scarring have made it harder for me to inhale a full breath, and it definitely affects my ability to hold notes and breathe with appropriate phrasing when I sing. I also have dry mouth from Sjögrens, and when I sing, I never know if I’ll either (a) have to cough at an inopportune moment or (b) collect so much saliva in my mouth that I can’t pronounce clearly. On Sunday, I was constantly clearing my throat before it was our turn—just this side of feeling like my throat would guck up.

Then there was the senior-moment-side of nervous. As many times as I’d reviewed my words, I was afraid my mind would freeze and I’d forget. Since the words were in Hebrew, they were harder to remember, even as the phrases were familiar (the opening prayer of the blessings after meals). Lately, I find that when I’m more self-conscious, my brain can go on the fritz for word recall, as if a file drawer gets stuck and refuses to open until I relax.

As a fallback, I had my music in front of me. But I wanted to make eye-contact with the audience.

Finally, it was our turn to sing. Two of the other members of the group are experienced barbershop singers, which was a good thing, since we were performing a capella. My nerves eased as we swung through the tune. In fact, our voices blended beautifully. I had enough breath, I didn’t cough, and I didn’t lose my place. A good sound system really helped. I felt great. We received many compliments afterward.

Most importantly, we had a wonderful time and added just the right bounce to an already upbeat morning. Music has a way of bringing joy into the world. I may not be able to play an instrument any more, but I’m so grateful I can still sing.

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 Credit: Israel Palacio

Excavations

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Decluttering the house remains high on my list of things I want to accomplish this year. So last Thursday, Al and I agreed to take time out from work responsibilities to once again tackle the basement family room.

recycling-1239302-639x426It’s really a family room in name only, now. Both of our daughters are grown and living on their own, and neither of us spends any time in that space anymore.

The television is huge and old and no longer attached to our cable, because we would have had to pay for an extra signal conversion box. The DVD player stopped functioning at some point. Toys and games from the girls’ childhood gather dust.

We had started the decluttering project last fall, but stalled when we discovered a major plumbing leak, fixed soon after. The room needed to dry out and, well, we got busy. Not that I didn’t think about it every time I went down to the laundry room on the other side of the basement.

But one of my greatest frustrations with my hands is that I cannot take on any part of major cleaning and organizing on my own. If I try to dust or vacuum, I inevitably smash my fingertips, which are severely resorbed and very painful when banged. Same goes for when I pull old papers out of boxes or move cartons or sort through books.

Fortunately, Al gets it and knows how to help me. He pulls stuff out of boxes and off the shelves, reviews it with me, and then we make a decision about what to do with it: donate, recycle or toss.

We must have sorted, stacked and bundled for at least four, maybe five hours. In the process, we filled several cartons and bags with print materials from my years working in higher ed marketing (I saved my favorites and sent the rest to recycling). I fished through a carton of old sewing patterns, many of which were decades old, and relinquished them for recycling, finally admitting to myself that they were really too dated to ever reconsider making. (The only ones I did save were patterns for a teddy bear, a timeless summer dress and my wedding gown.)

Of the toys, we saved the classics—LEGO sets, wooden Lincoln Logs, blocks, a box of flocked horses, jacks, marbles, a traveling backgammon board that I thought we had lost, a magnetic Scrabble game, jigsaw puzzles and the like. The rest of the old board games, baby puzzles and toys, we donated to a city neighborhood center. The spare office chair went to Goodwill. We pulled together family videotapes to digitize on DVDs. I wound balls of yarn from half-finished knitting projects to bring to my weaving class.

So, we made progress. But there is still a lot more to do. And it’s dusty down there. It took me at least a day to feel like my lungs were clear. I may just have to hire some help to get that under control before we excavate some more.

We are fortunate, I know, to have had the resources to acquire all this stuff over the years—and a home to fill. But the older I get, the less I want to keep. The most precious finds in our family room didn’t take much space at all: a few loose photographs of family events long forgotten, memories of the tapes we used to watch together when the girls were young, a little wooden toy village small enough to fit in a matchbox that had once been my mother’s.

Ultimately, the best way for me to preserve what I really care about, in the least space, with no cleaning or dusting or other maintenance required, is simply to write about it. Thank goodness, I can still rely on my hands for that.

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: Griszka Niewiadomski