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Reflections on the Messy Complexity of Chronicity

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how to stay warm

Don’t Do Anything Stupid

Evelyn Herwitz · October 2, 2012 · 2 Comments

It’s Sunday morning, overcast, nippy. I’m up at 6:00, most definitely not my favorite time to rise. But today’s the day that Al is running a 5K obstacle course race with his hospital co-workers at a track out in Western Massachusetts, and we need to be there by 8:30.

Al informed me about this a few months ago when he and his fellow social workers decided this would be a great team building activity, plus a good way to raise some money for a local charity, while they were at it. I didn’t give it much thought. As a marketing director, for years I would take my staff out to all kinds of unusual places—the Arnold Arboretum, a glass-blowing studio, a youth concert by the Boston Symphony—to strengthen us as a collaborative working group. So the basic idea sounded fine to me.

That is, until Emily came home for the summer from college and looked at the race track website. “Mom, have you seen what he’s supposed to do?” she asked, incredulous. I had to admit that I hadn’t bothered to look. I was in denial. But the man is going to be 62 at the end of October. He has a pacemaker. We agreed that she would urge him to do more than his usual morning workout to get in shape. “He’ll listen to you,” I said. “He’ll just ignore me.”

So she did. Al started swimming after work. Emily went back to school in early August.

A few weeks later, Mindi came home from Israel for a month’s visit. “Mom, have you seen what he’s supposed to do?” she asked, after checking out the website. We agreed that she would push the pace when they hiked up Mt. Monadnock that week. “He’ll listen to you,” I said. “He’ll just ignore me.”

So she did. They made it to the top of the mountain in good time. Al started running after work, and Mindi went back to Tel Aviv in mid-September.

The week before the race, he was running a full 5K around our neighborhood without stopping. I’d resigned myself to the fact that he was going to go through with it and that the weather forecast was crummy—chilly, with a chance of showers.

We’d discussed the possibility of my staying home, because we were both concerned I would get numb waiting for him to finish. So I decided to find a Starbucks nearest to the racetrack, in case it was raining or too cold for me to stand outside for hours. I finally checked out the website to get the address. And freaked out.

This was no ordinary obstacle course. You had to crawl in muddy water under strings of barbed wire. You had to hop from pylon to pylon over more muddy water. You had to squirm through dark, wet tunnels. You had to run up and down mucky terrain. You had to jump over a fire pit.

When Al came home Friday night, I said we needed to talk. We sat in the living room and I let loose.

“Have you looked at the 5-week training program they have on the website? This isn’t just about running. It’s cross-training! If I’ d realized what this was all about when the girls warned me, I would have tried to talk you out of it. You could really get hurt!”

Al said nothing. After nearly 28 years of marriage, he knew enough not to interrupt me when I was on a tear.

“I don’t care how cold or rainy it’s going to be on Sunday, I’m definitely coming with you. What if you sprain an ankle? What if you break a leg? What if you get a concussion, I thought. What if you have a heart attack? How will you get home?”

He kept listening, his face frozen in a tight grimace.

“I know how important it is for you to do this, I get it that you want to prove to yourself you can, and I know you’d never listen to me if I tried to talk you out of it. So I want to support you, but you have to promise me you will skip any of the obstacles that you can’t do. Don’t be a macho hero!”

“I won’t do anything stupid.”

“Okay, but what does that really mean?”

“It means I won’t do anything stupid!”

We went back and forth for a few more minutes. Al suggested that maybe I should stay home, because it was going to be too cold for me. No way.

“If you’re going to be stupid enough to do this, than I’m going to stupid enough to stand there in the rain and watch you and make sure you get home okay!” He agreed. Truce.

*       *      *

I take on the elements dressed in jeans and an old short-sleeved cashmere turtleneck, under an old long-sleeve cashmere v-neck, under a fleece vest, under my mid-weight down winter coat. I am armed with my fleece wrist warmers, gloves and a hat, and I have my umbrella. I look ridiculous, but I don’t care. I can’t take a chance on my Raynaud’s triggering for the next three hours.

As we drive out on the Mass Pike, the cloud cover is lifting. There are even a few patches of blue over Berkshire foothills spackled crimson and gold.

At the track, we find Al’s co-workers—three trim women, all at least half his age. Everyone‘s in high spirits as they don their purple tees with the hospital logo and their names on the back. A couple of athletic-looking boyfriends join the team, too.

Music pumps from two huge speakers. Other running teams sport everything from multi-colored unitards to chartreuse tutus, from Batman and Wonder Woman costumes to princess tiaras and centurion helmets.

To get to the starting gate for their 10:30 race, everyone has to climb over a four-foot-high plywood barrier. Al tells me later that he thinks the guys ahead of him are just showing off when they jump the wall. Then he realizes he actually has to get over the thing.

Smoke fills the air beyond the starting gate. An announcer juices the crowd. A siren blasts. And they’re off.

I find my way to a good vantage point midway through the course, a spaghetti-like dirt trail that winds up and down, back and forth through the muck. And wait. After about 20 minutes, I catch sight of part of the team running up the far side of the track. But no Al. A few more minutes pass. Then I see him, trudging slowly up the incline behind his young, spry supervisor. She pauses until he catches up. Okay, she’s making sure he’s doing all right. Good. I snap some pictures.

After another ten minutes or so, the team reaches the muddy sinkhole in front of me. I yell encouragement and snap some more shots. Al pumps his fist in the air as he wades through the guck. He looks exhausted, but he seems to be having a good time. I click away as they all hold hands down the giant slide into a mud hole, as they roll over red-and-white poles laid across muddy water, as they slog up and down.

When I can’t see them anymore, I head to what I think is the final obstacle, a huge pit of muddy water before a steep, gloppy incline. The sun comes out. I unzip my coat and vest and put on my sunglasses. Guys do cannon balls, flips, belly flops. Most of the gals just jump and wade through. One woman in a tutu drags herself to the side with an injured leg and is quickly picked up by the paramedic crew. But no Al and company. I keep watching and waiting.

Suddenly, there’s a hand on my shoulder. It’s Al, grimy and smiling. “We’ve been looking all over for you! We finished a while ago!” Oh no, how could I miss it! They crossed the finish line together, holding hands, he tells me. We head back over so I can take his triumphant portrait.

Al is ecstatic. “I really did it!” he beams. He gets his free beer and we grab some veggie burgers. We say our goodbyes and head to the car. On the way home, he tells me more about the obstacles. He did every one, except the pylons. Too much. So, he kept his promise.

“It was hard,” he admits as we drive back east on the Pike. “But the anticipation was worse than the actual race.” I agree. You never know what you’re capable of, even when your body doesn’t work so well anymore. Unless you try.

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.

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: body image, body-mind balance, finger ulcers, how to stay warm, life style, managing chronic disease, Raynaud's, resilience

Winter Cometh

Evelyn Herwitz · January 24, 2012 · 8 Comments

It’s been an unusually mild winter here in Massachusetts—not counting the freak snow storm we had back in October that damaged so many trees and knocked out power for days throughout the Northeast.

In fact, we’ve had a whole lot of weird weather this year—including a tornado, an earthquake and a hurricane-turned-tropical-storm. Anyone who doesn’t think there’s something strange and disturbing happening to the climate is either in deep denial or a Republican presidential candidate. But I digress.

Now it’s finally getting cold. We had about an inch of snow late last week and another four over the weekend. Temperatures are well below freezing at night and pretty brisk during the day. And I’m beginning to want to hibernate.

Going outside in New England winters is always an expedition for me. I need to bundle up big time to keep my Raynaud’s in check.

Every day I put on my leg warmers and wrist warmers and sweaters and fleece vest and whatever other layers I need to stay warm in the house, plus all the external layers when I venture outside. I end up looking like an eskimo half the time that other people are sporting mid-weight coats or jackets. I used to feel ridiculous, but now I don’t care what anyone thinks. It’s just what I have to do.

And all those layers can have unanticipated benefits. Last Friday afternoon, I had finished my work for clients and was wrapping up a first draft of this post when our 13-year-old golden, Ginger, insisted on nose-batting my hand away from the keyboard to tell me it was time to go for a walk. Since I’d been writing about contending with the cold, I decided she was right.

So I put on my deep-tread walking shoes, my warmest down coat, my shearling hat and my down mittens, and we headed outside. As we walked along our snow-packed street, a dozen high school girls from the nearby prep school jogged past, clad in thin black leggings and ski jackets, ponytails bobbing.

I pulled up my hood against the wind. Warmer now, I didn’t mind Ginger pausing to inspect each lamp pole on our leisurely trek around the block. As we rounded the corner back toward our house, we stopped to let the runners jog by again. A straggler ran past. Farther down the block, another labored to catch up.

Then Ginger skidded on some ice. My feet flew out from under me and I fell flat on my back, banging my left elbow and whacking the back of my head on the icy road.

The second straggler ran over and offered me a hand. I thanked her, got up on my own and walked, shaken, with Ginger back home. Nearly thirty hours later, I’m feeling mostly back to normal, no longer spacey, no more mild headache, just some strained muscles. And I’m sure I was spared a concussion by my thick hat and down hood. Not even a bruise on my elbow, thanks to all the padding.

One of my rheumatologists always used to ask me, only half-joking, why I wouldn’t move to San Diego. I’d quip that I wouldn’t be able to stand the air conditioning. After this weekend, and whenever I feel stuck in a January deep-freeze, I’ll admit the idea has some appeal. But.

This is my home. It’s been my home for more than 30 years, now. Yes, it gets too cold. But I have dear friends here, Al’s family within a hour’s drive and a tight-knit synagogue community. I have an outstanding team of physicians who know me and my history really, really well. I love the scenery and four seasons, even the snow. I love my home. Our daughters grew up here. My parents and Al’s parents are buried here. We have roots.

All of that is very hard to replace. And the stress of adjusting to a new community, the amount of time and effort involved in building new relationships, aren’t worth a warmer climate (especially given all the extreme weather of late—for all I know, if the oceans do rise, we may end up with beachfront property someday here in Central Massachusetts).

So, for now, I’ll continue to stay put. And buy a pair of ice cleats.

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.

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Filed Under: Body Tagged With: how to stay warm, Raynaud's

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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