Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Smell

Here, But Not

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I’m writing Saturday night, as the parsnip-pear soup simmers on the stove for Rosh Hashanah dinner on Sunday. And when this post publishes Tuesday morning, I’ll be getting ready to go to synagogue for the second day of the Jewish New Year.

In our wired world, our words can travel to their appointed destination on schedule, no matter where we happen to be or what we happen to be doing. So even though I’ll refrain from work and not touch my computer for the length of the holiday, it will seem as though I’m online, doing business as usual.

Here, but not. The Internet, email, texting, smart phones—all create the aura of being there, regardless of whether we’re actually present.

The irony, of course, is the more we communicate through the electronic ether, the less we’re present in the world around us. Everywhere I go, I marvel (to put it politely) at how many people are constantly texting or talking on their cells, noses buried in those little screens, never noticing the sidewalk or the sunshine or the car that’s making a left-hand turn in front of them.

And I think about this often, because time takes on a different meaning when you are living with a chronic disease. Minutes, hours, days are more precious. With each passing year, I feel a greater need to experience each day fully and do something meaningful with my writing.

Staying present, really present for the people I love, appreciating whatever each day brings, even the difficult, annoying parts, takes focus and determination. I can multi-task as well as anyone, but I no longer think that’s a great way to work or live. Better to simplify and pay attention to what’s in front of me than to spread myself too thin by trying to do too much, which always leaves me worn out and aggravated and struggling to slow down my brain at night so I can sleep.

Case in point: This past Friday I planned to drive to a supermarket about 20 minutes from home because they have excellent produce and I needed a lot of fruits and vegetables for my holiday menus. I left later in the day than I’d intended, trying to finish one more thing before I quit working, and decided to take a different route that I thought would be faster in mid-afternoon traffic. But, of course, I got lost, had to ask for directions, and spent 45 minutes getting there, instead.

I was totally annoyed with myself. Then I decided to let it go. There was no point getting aggravated because I wasn’t going to get there any sooner. As I drove, just watching the road and surrounding scenery, I got an unexpected insight about work that never would have occurred to me if I had continued multi-tasking and forcing my brain to track too many details, as I had for most of the day.

I spent the next hour at the market, focused on picking the best parsnips and pears and other savory produce, weighing and labeling each bag with its price, and gave myself a pat on the back at the check-out line when I discovered I’d actually stayed within my budget.

Of course, now I’m back to multi-tasking, writing while the soup cools on the stove. But it’s filling the house with wonderful smells, and when I wrap up this post, I’m going to enjoy watching the food processor transform the chunks of cooked fruit and vegetables into a swirling, golden mass. Then I’m going to bake the challah that’s quietly rising. And then I’m going to get some sleep.

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.

A Little More Summer, Please

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How did it get to be September, already? It’s still in the ’70s, thank goodness, but the air is sharpening. Ginger tracked dried leaves into the kitchen yesterday. I’ve cracked the porch slider, but I’m wearing wrist warmers against the light breeze as I type.

I live in New England because I love the color and variety of all four season. But every year, I have a harder time letting go of summer. For months, I’ve been living in tank tops and shorts, walking everywhere in my sandals, rarely needing a sweater, even at night. After weeks of extreme heat, two of my finger ulcers finally healed, and I’m down to four bandages. Most Saturday nights, I’ve strolled with Al to the corner frozen yogurt stand for sundaes and savored the sweet-tart coldness.

It’s been many years since the girls were young and the coming of September meant the end of summer camp, no more punting for play dates or meaningful activities to fill all that free time.

The beginning of school was always a rush of excitement, new clothes, new notebooks and lunch bags, seeing friends and meeting teachers. I welcomed the return of structure and predictable schedules, the chance to clear my head and hear myself think once more.

Now, as the days grow noticeably shorter, September means I’m going to be cold again, soon. It’s an adjustment, as much psychological as physical. Back into sweaters and jeans, fleece and wool. Back into jackets and coats even while others are still in shirtsleeves. Back into gloves and hats. Back to numb fingers and hand warmers, too much time spent dressing to go out, too much time warming up when I come in.

September also means the approach of the Jewish New Year, a time of reflection and renewal. For this, I find the crisp air bracing, a source of energy and clarity as I review the year just past and start afresh. Here in Massachusetts, Rosh Hashanah, marked by apples and honey for a sweet New Year, always coincides with apple-picking season. It fits.

Still, I’m not quite ready to let go of summer. Leaves began falling from the Norway maples on our street a few weeks ago. I’m always surprised when I first notice, usually midway through August. It seems too early. So far, just a few leaves here and there, scattered across lawns like random shells washed up on shore. Most trees remain lush green, despite the lack of rain this summer and harsh heat waves of July.

But I saw someone using a leaf blower last week. Emily started classes as a college junior yesterday. Mindi is home for two more weeks before returning to Tel Aviv. Shadows lengthen as we spin on our elliptical path, farther from the sun.

Outside my home office’s bay window, the yews cast a prickled, shimmering silhouette on beige mini-blinds. A neighbor blasts hard rock out an open window. A small plane hums overhead. I’ll walk Ginger soon, wearing my jeans and a sweater. But still in sandals.

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.

Smelling in the Present Moment

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Our golden retriever, Ginger, may be going on 14, but her sense of smell is still in tact. Whenever we go for a walk, she leads with her snout close to the ground, sniffing every leaf and lamppost, inhaling dank secrets.

Which has me musing: How fascinating that we take in smells with every noseful of air. If we breathe through our mouths, we simply breathe. But through our noses, we get more than just essential oxygen—we get a world of sensation that resonates deep in our psyches. Smell, as any writer knows, is the strongest way to evoke memory. For a dog, olfactory memory is all the more powerful, I suppose.

And musing: How it is that our aging Ginger, who is nearly a centenarian in dog years, can still smell a whole lot better than I can? She has, of course, the canine advantage. But I’m also gradually losing my sense of smell.

Some of this is due to genetics. Both my parents began to lose olfactory acuity as they aged. This almost caused a calamity once, when my dad decided to cook sorbet from scratch and left the pan of boiling sugar on the stove unattended. The pan caught fire, igniting the cabinet above the stove. Fortunately, my parents called the fire department in time and their house didn’t go up in flames.

But some of the problem is due to scleroderma, as well. My nose has narrowed and tightened. In addition, Sjögren’s has significantly dried up my nasal passages. I irrigate my nose and sinuses twice daily with a saline solution, which helps my breathing and limits nosebleeds, a real problem in winter. But I still can’t smell as well as I once could.

Very frustrating. I used to have a really acute sense of smell—to the point that I would tell Al about some odd odor and he’d look at me as if I were crazy. This skill saved us some major kitchen disasters of our own. Years ago, in our first home, I began to notice a sour smell. After some investigation, we discovered that either mice or chipmunks had been storing dog food kibbles in the grid behind our refrigerator. Condensation had leaked over the kibbles, which began to mold. Not pleasant.

A few years ago, a plastic surgeon told me he could widen my nostrils to their original dimensions and “take a little off the top” of my rather prominent Herwitz nose to make it easier to breathe. I gave this some serious thought for a while. But so far, I’ve decided not to go the extreme makeover route. My nose may be big and narrow, but it’s mine, and I’m pretty attached to it.

Just recently, I’ve discovered another, much simpler strategy that appears to improve both my breathing and ability to smell—meditating. If I can settle into that quiet, still, contemplative place in my mind (not easy, but I’m working on it), slow down my breathing and just be present, my nasal passages widen, I can breathe deeper and smell more of the world around me again.

Ginger seems to know this, intuitively. Like all dogs, she lives in the present moment all the time. For me, walking her is a form of meditation itself (provided no other dog passes us in the opposite direction). So, I need to take my cue from her: Slow down, pay attention and smell the roses—or whatever else may line my path.

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.