Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Aches and Pains

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It’s another beautiful fall day here in Central Massachusetts. I should go for a walk. But instead, I feel like complaining. My left thumb hurts. There is not just one pit of calcium starting to poke out of the inflamed ulcer. Now that the infection is clearing, I’ve discovered that there are actually two ulcers close together, each with a calcium pit at its center. And my eyes are glopping up with mucus because of Sjogrens and dry heat and possible allergies to leaf mold, of which there is plenty as our maples shed. And my right hip is bothering me for some reason.

Okay, that’s the list. Do I feel any better? Maybe.

When you live with a chronic disease like scleroderma, there is always plenty to complain about. The question is always how much to say, and to whom? I figure it’s okay to rant a bit here, Dear Reader, since you either live with all these issues yourself and get it, or you care about someone who does. But I have found over decades of living with scleroderma that most people, when they ask you how you’re doing, don’t really want a full inventory of your aches and pains. If you do share, then chances are that the listener will launch into all of their aches and pains or will tell you all about someone else they know with similar aches and pains. It inevitably turns into a game of can-you-top-this, which I do not care to play. So I usually keep my issues to myself.

When my sister and I were young, our family would visit our grandparents in Cincinnati for the holidays. As the only kids there (both our parents were only children, so no close cousins) we often ended up listening to our elders complain about all their aches and pains. Our running joke was to wonder when they would pass around their X-rays. (They never did.)

I have a lot more empathy for that crowd now that I’m their age. We all need to share what troubles or ails us. It’s a matter of determining which family and friends both truly care and know how to listen without competing for who has it worse. Finding those people is a great gift.

And so, Dear Reader, thank you for listening to all my rants and musings. I’m glad that you’re there. Be well.

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: Gratisography

After the Deluge

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It has been pouring rain here all weekend in an unusual early-fall Nor’easter. Lots of wind, especially along the coast. Fortunately, we’re an hour’s drive inland from Boston, so the impact wasn’t as severe here. On Nantucket, winds and surf were so intense that remains of an 1884 shipwreck washed ashore.

The storm arrived just in time for the Jewish holiday of Sukkot, an eight-day festival that follows the High Holidays. A special feature of the holiday is to erect a sukkah, which is an intentionally flimsy structure that has a roof made of plant material that enables you to see the stars at night. Al always cuts pine boughs for ours. One side of this rectangular “booth” is open, and the walls are made of fabric or tarps or other lightweight material.

You’re supposed to eat meals inside it, and some people even sleep in theirs. Sitting outside in the sukkah is like taking a camping trip in your back yard. The air is fresh and clean, and you still hear the crickets and other night critters this time of year in New England. It’s truly lovely.

But in a rain storm, not so lovely. We haven’t been able to eat outside yet. Al is waiting until the storm clears to decorate it with gourds.

Despite all the wind and rain, however, our sukkah is still standing. For many years, Al built and rebuilt our sukkah with old two-by-fours and sheets, but fortunately he finally agreed with me, after it nearly collapsed in the construction process last fall, that it was time to get a sukkah kit, which has a metal pole frame and, though impermanent, is a lot safer and easier to assemble. I used some bungee cords to anchor the bottom frame to the rail of our back deck. The pine boughs are drooping, saturated with water. But it’s all still there.

Nevertheless, the impermanence of the sukkah is the whole point. It’s a very tactile way to contemplate the impermanence of life and, for me, God’s protecting presence. We may think we have control in our safe, sturdy homes, with all of our belongings and tech gadgets and such, but the reality is that control is an illusion. Change is the only constant.

And so, this year, we’ve had to wait to spend time in our sukkah. Soon enough, Al will hang the gourds and we’ll enjoy eating inside it once 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. Please view Privacy Policy here.

At Summer’s End

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Labor Day has now passed, alas. The school year has already commenced in our fair city. Once again traffic is heavier on the Mass Pike when I drive into Boston for medical appointments and other events, always a sure sign that vacation season is over.

Time for sweaters and jackets and warm pants. I still leave the bedroom windows cracked at night, but not as wide open as in recent weeks. The heat has not switched on, yet, but it won’t be long before I’ll need it to get out of bed in the morning.

I won’t miss this summer’s sweltering heat and humidity. But I will, as always, miss the comfort of being able to walk outside without multiple layers of clothing. I won’t miss blasting air conditioning in public spaces that triggers my Raynaud’s and dries out my eyes. But I will, once again, miss the long hours of sunlight and the ease of wearing sandals.

New England has been my home for more than 40 years, now, and I still love living here, despite the prospect of another cold winter. I will adjust, as always, to the seasonal shift into fall. I always revel in October’s colors, the stark light of late November, and the pristine blanket of winter’s first snowfall.

In praise of temperate climates, here’s a link to a recording of Antonio Vivaldi’s The Four Seasons. Even as I’ll grumble as sunlight dwindles, there is still much to be grateful for.

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: zero take

As the Leaves Begin to Turn

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It always surprises me this time of year to see leaves already dropping from the trees on our street. I mean, come on, it’s still technically summer here in New England! But the days are growing noticeably short, and less sunlight means less photosynthesis. So, yes, the leaves and other green plants are shifting into autumnal mode.

Al and I took a short hike on Sunday afternoon along a trail by a mill pond for a long-abandoned cider mill not far from our home. It was a bit too buggy for my taste, but the foliage was lovely and the air was moist and rich with the scent of forest duff. Here are a few photos. Enjoy (without the mosquitoes)!

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.

The Best Medicine

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On Sunday, I got totally out of my comfort zone. I’ve been taking acting classes for several years, now, and over the past sic months, have also joined with some acting friends in an informal group working on scenes. This evolved into reading a play by Selina Fillinger, POTUS: Or, Behind Every Great Dumbass Are Seven Women Trying to Keep Him Alive.

And reading this very funny, raunchy play together led to a decision to do a staged reading of said play, directed by our wonderful teacher, on Sunday in a theater space. I played Stephanie, the President’s personal secretary, who is the comic foil, a role that included running around in a pink rubber ducky inner tube and rapping the introduction to the Declaration of Independence. Yes, you read that correctly.

I have never done anything like this before, and it was a hoot. I got a lot of laughs and had a blast. My acting friends were all terrific, our director was a dream, the audience totally enjoyed it, and we just had fun. Al smiled through the whole play.

There is a lot of stress in this world. There is nothing like joining with great, talented friends to put on a show and making others laugh for a few hours. The best medicine, indeed.

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: Caleb Woods