Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

One Small Step

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I’ve written a number of posts over the years about decluttering—my office, my home, my head. But this past Sunday, I actually did something about it. I Marie Kondoed my closet.

For those who may not have heard of the cultural phenom, Marie Kondo, she is the bestselling author of The Life-changing Magic of Tidying Up and star of a Netflix series, in which she helps people with far too much stuff to pare down to what they really love and need. There are plenty of memes and jokes and cynicism about her key question for each item, “Does it spark joy?” But after my younger daughter encouraged me to watch her show, it only took a few episodes to convince me that Marie Kondo is onto something simple and seemingly obvious, but profound when you put it into practice. When you clear out the clutter, you make room in your mind and life for what truly matters. That, and those of us living in the richest country in the world have far more stuff than we will ever really need in our lifetimes.

It took me about three hours to go through all my clothes. Kondo’s method is to pile everything on your bed and assess it piece by piece. Keep what gives your pleasure and give away the rest, with appreciation for the role it played in your life. Some of the decisions were easy. There were clothes I haven’t touched in years taking up space; clothes that no longer fit; and clothes that I really didn’t like but had kept because they might come in handy some day.

There were also clothes that I really love, and kept. And there were some items, particularly some of my warmer winter clothes, that I’m a bit tired of but can’t afford to replace quite yet, so I hung onto them out of pragmatism. The best finds were two timeless evening dresses that I had worn for each of my daughter’s bat mitzvah celebrations—that still fit. This was quite the miracle, especially because I love those dresses, not only for their style, but also for the memories.

Then there were the shoes. I ended up bagging about a dozen pairs, acquired over the years. Shoe shopping is always a struggle, not only to find the right fit in the store, but also to find shoes that won’t trigger the neuropathy in my feet, due to thinned fat pads from scleroderma. This is an attribute that I can only determine after wearing the shoes for a while, and since most stores only let you try them out around the house, I can’t always assess them until I wear them outside. If they don’t work out, it’s too late. Someone will benefit from my mistakes.

In the end, I brought six garbage bags of clothes to Goodwill, plus a shopping bag full of hangers. It felt good. I gave away some nice things that I hope many someones out there will enjoy. My closet is organized, and I don’t have to struggle to pull a hanger from an overcrowded rod, or dig through piles of unworn sweaters on the shelf. I can see everything, and everything is in its place. It looks pretty, inviting.

Best of all, I feel like I’ve made room in my brain. It’s an aaahhh sensation, like there’s more space to breathe. Less clutter means clearer focus.

Now, it’s time to tackle my office.

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.

View from the Acropolis

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Two days ago, I awoke at five to the sound of roosters crowing. It was our last day of vacation in Greece, at our last destination, the isle of Hydra (the ‘h’ is silent), and time to finish packing before our early morning ferry back to Athens. We had made a grand tour over two weeks, starting in the nation’s capital, then on to the island of Crete, then north to Thessaloniki, back down the peninsula to Delphi, landing on this Aegean jewel for our final weekend.

Neither Al nor I had ever been to Greece. I’d always wanted to see the Parthenon, the ruins of the ancient temple to the goddess Athena, atop the Acropolis of Athens. More than that, though, now seemed the appropriate time to visit the birthplace of democracy. With so much at stake here and abroad, I needed perspective and inspiration.

We found both. As one of our tour guides explained, democracy only succeeds when everyone participates. When citizens choose not to vote, not to be invested in the business of government, that is when demagogues step in to fill the vacuum. In fact, the ancient Greeks had a word for people who preferred not to be involved in public affairs: the transliteration is idiotes, which is the etymological root of idiot.

Make of that what you will. For me, walking through ancient ruins, contemplating the great civilizations that have come and gone, it became clear as the crystal turquoise waters of this stunningly beautiful country that we can’t take anything for granted. It’s up to each and every one of us to ensure that our democracy survives and thrives in these very challenging times.

Here are a few of my favorite images from our travels. Enjoy.

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.

A Sliver of Moon

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Saturday night, we were sitting with friends by a fire pit, near a pond, watching the flames, watching a sliver of moon sink beyond the trees. The same moon sinking beyond the horizon, two hours later, in El Paso. The same moon that would be absent from the sky, early Sunday morning, in Dayton.

In the U.S., in 2019, so far, there have been 255 verified mass shootings. Nearly 8,800 people have died from guns. That total just increased by 31 souls.

There’s a lot I can do to increase my odds of living a long life with scleroderma. I’ve managed it for nearly four decades, now. Some of my resilience is genetic. I’m fortunate to have access to quality health care. But I’m also vigilant and diligent about making healthy choices.

None of us can control whether an active shooter with a semiautomatic weapon of war decides to show up at a Walmart, or a bar—or a school, a church, a mosque, a synagogue, a movie theatre, a festival—and spray the crowd with deadly fire. But we can make our voices heard. And we can vote to end this madness.

The Earth turns, unceasing, on its axis. Nothing in life ever remains the same. We cannot control the world around us, only our response.

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: Terry Richmond

Implanted

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Three-and-a-half months have passed since my latest resorbed molar was extracted, and Monday was the big day for the next step: drilling a hole in my healed jaw and screwing in the implant. When I had my checkup with my periodontist two weeks ago and he proclaimed me ready, his receptionist joked, “Want to come back this afternoon?” Most certainly, not.

I did my best not to dwell on the pending procedure. On Sunday, we got to the beach once again, this time on Boston’s North Shore, for a beautiful afternoon of perfect sunshine, light sea breeze, and warm enough water for me to wade up to my waist several times. Just the right distraction.

I busied myself with writing Monday morning, but as the hour grew near to go, I briefly imagined just staying home and not being my normal Do Bee self. The Do Bee won out. On the 45-minute drive to my periodontist, at least the WGBH radio hosts were talking about something amusing: what listeners watch on TV to ease the stress of the daily news cycle. (Marie Kondo was a favorite.)

Then came waiting for the procedure to start. When I’m anticipating dental work, I really have to force myself to stay in the moment and not get overwhelmed. Sitting in the reclining dental chair, covered by paper drapes, I studied the art on the wall (an interesting abstract painting, not your typical bland office art), the plastic wrapping around the overhead exam light’s handles (why does it need extra covering when they’re wearing gloves, anyway?), and contemplated how much plastic waste that medical providers generate in the interest of sterility. (Literally, tons. According the Journal of the American Medical Association, health care facilities are the second largest generators of waste in the U.S., producing 4 billion tons annually. That’s a lot of disposables, including a lot of plastic.)

Fortunately, my periodontist and I enjoy similar music during these procedures, which are strenuous for both of us. As he injected local anesthetic into my gums, I focused on Vivaldi. This was especially helpful as he prepared my jaw for the implant, which involved a lot of scraping and pressure and pulling my tight mouth into very uncomfortable distortions. The selection was Vivaldi’s Violin Concerto in A Minor, which I played years ago in high school, and I could still remember some of the bowing.

Then came the drilling. This drowned out all the music, causing my entire skull to vibrate. The hardest part was getting the drill and suction and other tools into my mouth. But he managed, thank goodness, and the worst was over in about twenty (long) minutes. Screwing in the implant took some manipulation, but at least I could rest my mouth in-between the different steps. As he’d predicted, we were finished in under an hour. Definitely easier than the extraction, which took twice as long. He was pleased with the result, and I finally relaxed.

After a 45-minute drive, plus waiting at the pharmacy for antibiotics (always a necessary precaution for me), it was a relief to get home. Another three months of healing and trying not to chew on the right side of my jaw, and then it will be time for my dentist to put in the crown. Much as I dread this procedure, I’m glad I took care of it sooner than later. Being a Do Bee—on my own behalf— paid off. (And for those of you who remember Romper Room, here’s the official Do Bee song.)

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: Jenna Lee

Curios

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It took me twenty years, but I finally set up my collection of curios this past Sunday. We had packed up my lovely figurines when we moved to our current home in June of 1999, and they had remained boxed ever since.

It’s not that I didn’t care about them anymore. Quite the contrary, each piece is quite special. But I kept putting off the task, and putting it off, and putting it off—because I was afraid I wouldn’t be able to do it without dropping and breaking them. My fingers just aren’t that nimble anymore.

I began collecting glass animals when I was a kid. Every summer, our family would vacation on Cape Cod, and one of the highlights of the trip was a visit to a store in Hyannis where an artist would manipulate sticks of glass over a bunsen burner to create whimsical creatures. If my parents had let me, I would have watched him for hours. Among my favorite purchases with allowance saved for weeks were a white horse rearing on its hind legs, a pair of pink elephants, a tiny red hippo, a dove, a turquoise dolphin.

At some point along the way, I was given my paternal grandfather’s collection of miniatures. These included two painted metal orchestras—one made up of frogs, and the other of monkeys, elephants, foxes and a devilish conductor. There were some carved wooden figurines, and some of carved ivory, as well. Eventually I found an enclosed glass curio box and displayed them in the living room of our prior home for many years.

I missed them. But with all the bandages and ulcers and Raynaud’s and hand surgery, I just couldn’t get myself to risk displaying them again. That is, until this past year, when I began keeping a Bullet Journal, which is a great system for keeping track of just about anything you need to get done. For my list of things I wanted to accomplish around the house, I added in setting up my curio collection.

Now, you can keep pushing off items in a Bullet Journal and rewriting them in the next week’s or month’s to-do list. But after rewriting an item enough times, you realize that either you should take it off the list, or just do it, already. Given that June marked the twentieth anniversary of our move, it really was high time to take care of it.

So last week, I found the box with my collection, marked “fragile,” on the top shelf of my closet. It was filled with plastic ziplock bags, each containing about ten figurines, carefully wrapped in tissues. But where was the curio display box? Upstairs, downstairs, in the basement I searched, to no avail. Then Al came home, and within a half-hour, found it in the basement—in a box marked “glass box.” Well.

The glass box was in perfect shape, cushioned by yellowed newspapers from June 1999. I figured out a good spot to hang it in the living room, measured the box and marked the wall, and tried to hammer a picture hook at the correct spot. It slipped and dropped to the floor. I tried again, using a pair of needle-nosed pliers to hold the nail. This time I was able to start it, but the angle was wrong as I tapped with a tack hammer. Time to ask for help if I wanted to finish before dark. Al took care of the hooks and hanging the box.

Now it was time to place the figurines. As I unwrapped each one, it was like meeting old friends. Using a pair of round-nosed pliers from my jewelry-making supplies, I was able to place them without too much trouble. That is, until one piece, a green glass octopus, slipped, bounced on the floor and disappeared. I stopped myself from trying to move things around to find it, since I didn’t want to cause any more damage or knock another figurine out of the box. The whole process took several hours. Finally, when everything was in place, I poked around on the floor. There was the octopus, lodged between some CDs in Al’s music collection—in tact!

So, now all my little friends are back on display. I took my time, worked my way around the dexterity issue with the right tools, and didn’t break anything. And I can finally take that task off my list.

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.