Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

stress

Sleep Tight

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Cold weather makes me want to hibernate. Four days from the winter solstice, I start yawning by mid-afternoon as the sun slips past the trees beyond our home.

Fortunately, the cold weather also makes it easier for me to fall asleep and stay asleep most of the night. I may be jinxing myself by writing this. I sure hope not. Sleep is what’s saving me these days.

I’m also having a lot of very strange dreams. These usually surface just before dawn, when I have to make the inevitable trek to the bathroom. But I’ve been able to drop off again, because it just feels so good to get warm under the covers. And the strange dreams typically dissipate soon after I wake for the day. Which is a good thing. Because they are really strange.

In about a month, daylight will feel longer once more. It will get easier to drive home from Boston on the Mass Pike in the afternoon by late February, when the solar glare going west is less severe. I’ve been noticing buds on the trees and shrubs around our home, always an encouraging sign of new life to come.

And, if I’m lucky, I’ll continue to sleep soundly, regardless of the onslaught of bad news that floods our world. It’s essential to my health and well being, to my resilience and ability to cope. All the more so in such stressful times.

I hope, Dear Reader, that you are sleeping well, too. If you’re struggling, here are some helpful tips from the Mayo Clinic.

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: Daniele Levis Pelusi

Interior Monologue

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In less than a month, 25 days, to be exact, the winter solstice arrives here in the Northern Hemisphere. Which means that in just about two months, even as the sun will be visible about the same lenth of time as it is today, it will seem a little brighter because we’ll be gaining, instead of losing, a few seconds of daylight every day.

I always feel better when we finally reach the first day of winter. Even when it’s cold in January (though that is a relative concept these days) and I have to layer up to keep warm, even as our heating bill balloons, I feel a bit more optimistic, knowing that each day the sun will be shining a bit longer.

But, of course, this is all in my head.

So much of how we experience the world depends on the stories we tell ourselves. They can be empowering. For decades I have told myself that my scleroderma may limit me in certain ways that I need to respect, but it does not define who I am. That story has become my reality, and it’s enabled me to keep going.

But those self narratives, which are often not obvious when deeply entrenched, can also be the source of much pain. When we filter our lived experience through old, worn-out stories that were birthed in childhood, we get mired in doubts and fears and anxiety.

There are a lot of real reasons for doubts and fears and anxieties right now, but I am trying my best not to allow myself to get stuck in old, worn-out narratives that cramp my ability to see clearly how best to respond. It’s hard. Then I remember the natural cycle of the sun, admire November’s sharp shadows, and ground myself, once again. And if the prospect of lengthening days gives me a boost, even if it’s just in my head, I’ll take it.

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.

Coping Strategy

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Stress is contagious this Election Day. If you google “how to avoid election anxiety,” you’ll find a plethora of articles with titles like “Last-minute tips for coping with election stress and anxiety” or “Don’t let election anxiety get you down” or even “I’m a Therapist: Here’s How I’m Coping With Election Anxiety.”

Most of the tips are common sense:

  • Be mindful. Focus on the present moment.
  • Limit your intake of political news, polls, and social media.
  • Practice self-care. Pursue activities that give you joy.
  • Worry less. Do more to support your candidate in constructive ways that work for you.
  • Breathe.

I’m trying to do all these things. But I am also a political news junkie. For me, being as informed as possible via a range of trusted sources helps me to feel ready for whatever comes next. This is not for everyone. But it’s just the way I’m wired.

At the same time, I am also doing my best to focus on what’s in front of me. Editing for my clients is a great meditation. Working on Novel 2 is a dive into the world of my imagination, where time is suspended. Cleaning the house brings the satisfaction of putting things in order that are within my control. Taking walks clears my head. Watching anything that makes me laugh refreshes my heart. Reading great novels is an essential escape, as well as an immersion in another writer’s art. On Monday nights, I’m back to my acting class, which is wonderful.

Hugs help, too.

So, Dear Reader, sending you good karma and serenity for today and whatever comes next. If you haven’t yet, be sure to vote. See you on the other side.

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: Phil Hearing

Seeking Serenity

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We’re enjoying a short spate of glorious weather here in Central Massachusetts—lots of sunshine, azure skies, trees cloaked in flaming colors, comfortable days and crisp nights. A few days ago, I woke early and noticed that the moon had not yet set in the west. It glowed like a golden spotlight in the soft dawn, before the sun had risen. Just beautiful.

I’m trying to stay focused on these daily wonders and not go down the rabbit hole of my iPhone—all too tempting during this fraught run-up to the presidential election on November 5. I find it hard not to read everything I can about the potential outcome, all the twists and turns of the final weeks of campaigning, in a vain hope of divining the result ahead of time. It’s ridiculous, I know. Still, I scroll.

I am deeply, deeply worried about the outcome.

And so, I pray every day to find the calm in the eye of the storm. Maintaining serenity is the only way for me to think clearly. Not easy to do right now. But it’s also the only way to keep myself healthy. Meditation helps. So does taking walks in beautiful weather. And reminding myself of all the many, small miracles of existence that are so easy to take for granted.

So I pass this along to you, Dear Reader, in hopes that it will help you to find your own peace of mind in these complex and chaotic times. 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.

Choose Humanity

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I am writing on Monday afternoon, October 7, the dark one-year anniversary of the terror attack by Hamas in Israel that launched what now seems like a never-ending war. Twelve-hundred people, mostly Israelis, were slaughtered that day and hundreds taken hostage. There remain 101 hostages in captivity in Gaza, tens of thousands of innocents in Gaza killed as terrorists hide behind civilians, and now the growing risk of regional war in the Middle East.

In September, Al and I traveled to Israel to visit family and also to participate in a peace mission organized by MEJDI, a touring company founded 20 years ago by two friends, an Israeli and a Palestinian. They specialize in dual-narrative tours in conflict zones. Over five intense days, we met with people across the political spectrum to hear their stories, engage in dialogue, and explore paths to a just peace. I am still processing all that I learned and heard.

Among those we met were family members of Israeli hostages, a former Gaza resident, an Arab Israeli journalist for Ha’aretz, members of the Druze and Bedouin communities, a Palestinian Christian minister, a Palestinian bookstore owner in East Jerusalem, refugee advocates, IDF soldiers, and many dedicated peace activists. We visited guests in Tel Aviv, Jerusalem, near Haifa in the north and in the Negev in the south. We attended a massive rally in Tel Aviv to bring the hostages home and achieve a cease fire. We had long and meaningful conversations with our fellow tour members of all faiths, as well as our two guides—one, an Israeli whose cousin had been killed on October 7 and whose body is still held hostage in Gaza, and the other, a Palestinian from East Jerusalem who is a medic and was a first responder at the attacked kibbutzim.

There were many points of view, much grief and angst. But the message that resonated across all of our discussions was this: There are two peoples with legitimate claims to the same land, who must find a way to live in peace together. The journey is long and hard. Don’t pick sides. Choose humanity.

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.