Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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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.

Great Escape

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As temperatures skyrocketed here and across much of the U.S. this weekend, we decided to flee the 90+ degree heat and 100+ degree heat index and head to our favorite beach escape, Block Island, an hour’s ferry ride from the Rhode Island coast. A wise move. As soon as we parked the car at Point Judith, I breathed in all the good salt air and sea breeze, and exhaled a sigh of relief.

The heat back home was bad enough, the humidity awful, so it was actually a pleasure to pull on a sweater for the windy ferry ride. After a light lunch at our favorite bagel cafe, we walked to the state beach and settled down with rented chairs, umbrella, and our books. Water temp was about 68 degrees F, not bath water, but not icy cold, either. As Al splashed in the surf, I waded up to my knees and was able to stand there for about 15 minutes. This, alone, was a major accomplishment. Usually all I can do is dip my toes for a few seconds to claim that I actually felt the Atlantic for another summer.

After a long walk up the beach and back, watching all the kids surfing on boogie boards and dogs catching balls and young engineers digging sand trenches or building castles, Al turned to me and said, “You coming in?” So I took his hand and allowed him to gently help me get a little further and a little further, up to my hips. Small waves rolled and splashed, and I shivered and jumped.

Years ago, when I was an avid ocean bather, I would just run right in, dive through a wave, then jump and float for as long as I could before I turned blue and my teeth wouldn’t stop chattering. I miss those days, but I’ve had to become extremely cautious about ocean swimming, both due to cold water temps here in New England and because of all my digital ulcers, which could get infected by the sea water.

On this particular hot, hot Sunday, however, with only two ulcers—one a perpetual scab on my left thumb and the other, an exposed piece of calcium lodged in my right thumb—I decided to take a chance. So I dived in. Then shrieked from the cold when I came up for air. But I did it. Two people nearby applauded. Al laughed. It’s been so long since we’ve been able to go into the ocean together. (Last time was three summers ago, in the warm Mediterranean waters along Elba, an island off the Italian coast. That time, I actually got to swim. Al got stung by a jellyfish.)

I didn’t last long. The water was just too cold for me to stay and play. It was refreshing. I remained mostly cool for the rest of the afternoon, aided by a steady sea breeze. By five, I had changed my bandages, we were back in our street clothes and heading up the beach, picking up sea glass on our way to dinner. We nosed around the little shops, caught up with our daughters by phone, and sailed back on the ferry beneath a stunning sunset. Traffic was heavy going home, but it didn’t spoil the day.

And I didn’t read the news. That was the greatest escape of all.

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.

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.

Summer Solstice

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At Stonehenge in England this past Friday, about 10,000 people gathered to watch the sun rise in perfect alignment with the entrance to the ancient stone circle. The summer solstice has come and gone in the Northern Hemisphere. Even as we mark the beginning of warm summer months, the days are now growing shorter once again.

Somehow, I wish the days could just stay longer for a little while. Even as we have months of (I hope) balmy weather ahead, there’s something that always makes me a little sad when the solstice passes, and our half of the Earth begins to tip every so slowly away from the sun for the next six months. It’s all in my head, I know. But still.

My hands and feet are just so much happier during the long days of summer. That is, of course, so long as I stay out of overly air-conditioned buildings. I took advantage of a sale this past week and got some new wrist warmers to add to my collection—as essential in the summer when stores and restaurants insist on maintaining arctic temperatures, as in the winter when arctic air blows into New England from Canada.

At least I can now take my neighborhood walks without a jacket or even a sweater. It’s easier to get out the door for appointments, too. Less stuff to put on.

Time to savor summer, even as daylight slowly dwindles.

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: Hello I’m Nik

Home Alone

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Al is away this week, in Israel, volunteering on an archeological dig. It’s a dream he’s had for at least a year, and he’s having the time of his life. It’s also an activity that I cannot share. We agreed that my hands are simply not capable of the sifting and digging involved. There’s a heat wave there, with temperatures over 100 degrees Fahrenheit by afternoon. The group has to get up by 4:00 in the morning to arrive at the dig site by 6:00. Work for the day finishes by noon, to avoid the worst of the brutal sun. Not my kind of schedule.

So I’m very glad that we were able to make this work for him. And fine being here on my own. But this is the longest stretch we’ve been apart—nine days—in six years, the last time involving another trip he made to Israel to visit our older daughter when she was living in Tel Aviv.

It’s an adjustment. I have good friends and neighbors that I know I can count on if I need any help. But I’m not about to call for assistance with all the little ways that Al fills in for my hands on a daily basis.

On Monday morning, for instance, the ants decided Memorial Day was the perfect time to march into my office, which is a renovated porch. The inner wall is the back of our chimney, and I noticed a tell-tale pile of fine dirt along one edge where the brick meets the carpet. A few industrious, tiny brown ants were scurrying hither and yon. There were also a few flying ants (not termites, I checked) that had chosen this very sunny day to flit about.

This is an annual spring phenomenon, so I was more annoyed than surprised. I brought up the portable vacuum from the basement, put the hose pieces together carefully so as not to bang my fingers, and sucked up the dirt (and a few ants, no doubt), then sprayed some Raid around the base of the brick wall.

The next problem, once the ants appeared vanquished (I won’t know for a few days if the swarm is over), was dealing with the fumes from the insecticide. I had a lot of writing to do, and I didn’t want to be forced out of my office by the smell (and sitting with those chemicals all day). Only problem is that the sliding door to our deck in my office is hard to open, but even harder for me to latch shut. Al always does this for me. So that option was out.

There is a bay window that has two panels you open with a crank. I never open them, because the cranks are not easy for me to manipulate. But I didn’t really have a choice. I cranked one window a few turns, only to realize that the top was stuck shut. So I cranked it closed and tried the other side. Same problem. The only other window in my office has no screen, and I couldn’t force it open, anyway.

As they say, necessity is the mother of invention. Out I went, into our side yard, armed with a tack hammer, planning to use its pronged end to leverage open the upper half of the window. I didn’t want to damage the vinyl frame, so I worked my tool carefully up the length of the stuck edge. It only took a few easy tugs, and the window opened its full length. I must admit, I was pretty proud of myself.

I spent the rest of the day writing, with plenty of fresh air and no more ant activity. The only problem with the open window on a sunny holiday was that my next-door neighbor, whom I rarely hear, was out gardening for several hours, chatting with some other folks who were helping or visiting, I couldn’t quite tell. Certainly her right, on a beautiful day, but (grumble, grumble) I would have preferred less of a distraction.

This is where working in a newsroom years ago comes in handy. I can still screen out other people’s conversations when I’m deep into my writing. And that’s basically what I did. By the time I came up for air, it was after 6:00 p.m. I made good progress. When I cranked the window, it closed easily.

I’m leaving the vacuum upstairs until I’m sure the ants are gone. I’m hoping that’s the worst of my problems this week. (Friday morning, the day before Al left, he discovered that our hot water tank in the basement was leaking, a problem that involved a seven hour plumber’s visit, a new tank, and a lot of money. Fortunately this happened while Al was still here, or I would have been a lot more upset.)

My next challenge: taking out the garbage without screwing up my hands or breaking the bag. I think I can handle it. But the recycling can wait until Al gets home.

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: Vlad Tchompalov