Body

Gold Standard

Evelyn Herwitz · August 16, 2016 · 2 Comments

All those perfect bodies. It’s impossible to watch the Olympics without marveling. Sculpted muscles, tight abs, toned thighs—these premier athletes look every bit like the marble statues we saw everywhere in Italy this summer—except, of course, they are living, breathing humans who accomplish seemingly superhuman feats of strength, coordination, balance, speed, grace.

The Summer Olympics, especially, always set me daydreaming—what would it have been like if I’d had the ability and training to compete as a gymnast when I was that young and healthy? What does it feel like to be Simone Biles, dancing, bounding and twirling through the air, always landing soundly on her feet?

The gold medalists, especially those who’ve distinguished themselves as Biles has in gymnastics with her extraordinary athletic prowess, are walking Rorschach tests for our imaginations—as well as our biases.

There has been plenty of press regarding the ignorant comments by NBC sportscaster Al Trautwig about Biles’s parents—her biological grandparents, who adopted Simone and her sister when they were very young. “They may be mom and dad but they are NOT her parents,” he tweeted last Sunday. Those comments raised a huge furor, rightly so. As an adoptive parent of our older daughter, I found the initial reporting offensive and appalling. I was very glad that Trautwig not only retracted his statements eventually, but also apologized. Shared DNA is not the defining ingredient of parenthood.

But there is another bias projected onto Biles that has not been flagged—and that involves how she is described in terms of height. Like many female gymnasts, Simone Biles is petite. She stands 4-feet-8-inches tall.

For some reason, however, the sportscasters are compelled to describe her as a “4-foot-8-inch giant.” This is intended as high praise—small in stature, but a huge presence. I get it.

However, my younger daughter stands 4-feet-7-inches tall, and over many years, we have discussed the challenges of living in a society that tends to be dismissive of individuals who are shorter than average. Short stature is associated with being childlike, being “cute” (as in not taken seriously), being less capable of leadership. It’s an insidious stereotype that has no more to do with what an individual is capable of than the color of her skin, religion, gender identity, physical limitations or any other distinguishing characteristic.

By describing Biles as a giant, the sports world is underscoring the perceived irony of such a small woman looming so large over other gymnasts. The implied assumption: better-than equals bigger-than. But why isn’t it enough for Simone Biles to be the world’s greatest female gymnast—period? Why does her height have to figure into her sobriquet? Does anyone dwell on swimmer Michael Phelps’s height when describing his amazing 23 gold medal record? Of course not. He’s 6-feet-4-inches tall.

The Olympics are all about achieving athletic perfection. Wouldn’t it be wonderful if those who set the bar for how we talk about these breathtaking accomplishments strived to set a gold-medal standard for appreciating the precious uniqueness of each individual—rather than marveling at how they’ve defied expectations based on stereotypes. Imagine how that might shift dialogue and perception far beyond two weeks every other Olympic year.

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.

Image Credit: Oliver Gruener

Forgetful

Evelyn Herwitz · August 9, 2016 · Leave a Comment

It was 9:30 this morning when I suddenly realized that I’d forgotten to write my blog for today. This has only happened a few times in the four-and-a-half years that I’ve been posting, and those other times, I caught it earlier in the morning so there was no apparent lapse.

I’m getting older. And memory lapses are becoming more frequent.

I’m well past the stage when it felt novel to walk into a room and not recall what I was trying to find. The only reason I can locate my keys before I leave the house is that I force myself to put them in my purse or on the kitchen table when I come home—and I don’t always remember to do so.

Last Friday I went grocery shopping and wandered around the parking lot for what felt like a good 10 minutes before I located my car. For a fleeting few seconds, I wondered if it had been stolen.

I’m getting worse at recalling names—occasionally, even of people I know well. It’s as if a curtain goes down in my brain, hiding the information. The more I strain to remember so as not to embarrass myself, the thicker the curtain becomes. Over the weekend I read an article that explained why our brains aren’t wired to remember names as well as faces—which provided some relief, or, at least, a good excuse.

Amidst the flurry of preparations for our recent trip to Italy, I tried doing a load of laundry and was completely bewildered by the fact that our reliable washing machine refused to start properly. Why? Because I was pushing the power button instead of the start button. (This I figured out after I read the trouble-shooting section of the user manual, which, fortunately, I keep on top of the washer.)

Then there is the challenge of taking all my medications on time. I know, I know, I should use a pill minder. I hate them. I don’t know why. Maybe because they are a reminder that I can’t remember. It’s an act of defiance (or sheer ego) to take my pills morning and night without having to rely on some device other than my brain. But there have been far too many times when I can’t recall if I took them or not, and I realize, much as I don’t want to admit it, that timely medications are too important to mess with.

I was discussing this with a friend last week who is also in his early 60s, and we agreed that the real issue is too much multitasking. I forget when I’m not paying attention—to where I left my keys or parked my car, or how many cups of flour I poured into the food processor to start the bread dough, or whether I actually told Al about my schedule or just thought about it, or when I took my pills. So much of the time, I’m doing one task on autopilot while my mind is in a totally different space.

There are apps for that, of course. We can do a lot more these days because we can offload so much to our smartphones—medication reminders, parked car locators, key finders and more. But that requires remembering where the smartphone is. (Try calling it when you’ve forgotten that you left it on silent from the night before.)

The only lasting answer: Slow down, do one thing at a time, be mindful. And, above all, accept the fact that aging is inevitable.

Image Credit: Szilard Gabor Fulop

Immersion

Evelyn Herwitz · August 2, 2016 · 6 Comments

Could it really be that Al and I were in Pisa, Italy, on Sunday? And in Venice, Florence and the Isle of Elba over the preceding two-and-a-half weeks? Air travel makes it possible to be halfway around the world in the morning and back home late the same night (depending on which direction you’re traveling). But my mind is somewhere in-between. And I want to hold onto the memories of our journey for as long as I can.

Venice has been a lifelong dream—ever since my father showed me a series of small, black-and-white photos of the canals from his military service in Italy during World War II. Those images made a big impression on me as a little girl. So much so that in first grade, when I had to answer a test question, “True or False, All cities have streets,” I marked it false. My teacher, Miss Kelly, called me up to her desk and asked me why. I explained that Venice has canals. She laughed, and she didn’t mark my answer wrong.

Whatever I imagined as a child, however, could not compare to the wonder of Venice—a magic puzzle box of winding pedestrian passageways, bridges and canals. Around each corner is yet another stunning, surprising view. We heard jazz and Vivaldi, saw fireworks and Kandinsky, ate delicious meals, drank wonderful wines, and continually got lost and found. We stayed six days, and it wasn’t enough.

For four days in Florence, we marveled at art, ancient to modern. I could have stared at Botticelli’s The Birth of Venus for hours, were it not for the crowds in the Uffizi—for all the images I’ve seen, and the memes, there is nothing like witnessing a major art work in person. Michelangelo’s David, too, is breathtaking. So is the view of the city and Tuscan hills from Forte di Belevedere, across the Arno, and so much more.

Our final stop, Pisa, has also been a source of intrigue since childhood. My sister and I had a wall map of the ancient world when we were young, which included a small drawing of the Leaning Tower to indicate where Pisa is located in Italy. How could a building lean like that and still stand? I wondered.

Well, now I’ve seen it with my own eyes. It does lean and stay standing (thanks to some extraordinary feats of engineering), and the architecture is exquisite. There is much more to the city, of course, which is full of surprises—from the serene Botanical Garden of the University of Pisa to an exhibition of book illustrations by Roberto Innocenti at the Palazzo Blu.

But our favorite adventure was our four days on Elba, an island off the west coast of Italy, part of the Tuscan Archipelago. Truly, one of the most, if not the most beautiful place I have ever seen. Panoramic mountain views overlooking azure seas, crystal clear water, beautiful hiking trails, salmon sunsets. It was a vacation in the midst of our vacation—calming, quiet, a time to get away from the crowds and contemplate.

And, best of all, I went swimming in the Mediterranean—the first time I have been able to swim in at least a decade. The water was warm and so clear and clean that, for once, I was not worried about risking an infection in my fingers. Indeed, the salt water seemed actually to help my ulcers to heal.

All of this, plus the fact that I was able to tolerate the long plane rides, walk and walk in intense heat (high 90s most of the trip), eat new foods, get enough sleep most nights, and avoid any scleroderma complications—all of this, on top of being able to swing the trip in the first place, was a great gift.

I’m glad to be back home, where the scenery is familiar. I know where to find just about everything in our house. Family and friends are close by. It was very good to sleep in our own bed once again. But there is so much more of the world to see. As long as we both are healthy enough and able, we hope to keep on traveling. My “Next Trip” list is already in the works.

Vacation Override

Evelyn Herwitz · July 12, 2016 · Leave a Comment

It’s been a very busy few weeks since the beginning of July. Al and I leave soon for our first-ever trip to Italy, and to prepare, I’ve been drilling through a month’s work of client projects in 10 days. Usually I pace myself very carefully and keep most evenings and weekends free of work—to manage my energy and keep a good work-life balance. But freelancers don’t get paid vacations, so late hours were necessary to make sure I met my clients’ needs and our family budget for the rest of July.

Now it’s done, and I have to concentrate on final trip preparations. (It’s probably been good to have had so much work to do—a distraction from inevitable nervousness about how I’ll hold up during a long haul trip.) Tops on the priority list is making sure I have enough of my prescription medication to last the journey.

Only one problem: the timing of my most recent refills works out to being a few pills short for when we’re out of the country. Three prescriptions were affected. So last Friday, I went to my pharmacy and asked what to do. They advised me to call my health plan’s pharmacy and ask about a vacation override. Since we would be abroad, there was a good chance I could get the refills authorized.

Monday morning I called CVS Caremark and explained the situation. The helpful person on the other end of the line told me to submit the refills at the pharmacy, which would be rejected as a premature request, and then have the pharmacy call them for the override, which, fortunately, our plan covers. So after I finally finished all my work, I went down to my local CVS on Monday afternoon.

And here’s where the situation got complicated. Two of the three scrips got through the process without a hitch. But a third hit a snag. For whatever reason, the insurer suddenly decided I needed a prior authorization for this particular medication, not only to get the vacation override, but also to get any refill for a med I’ve had authorized for years. It made absolutely no sense.

But this is how health insurance works these days.

So back home I went and wrote an email to my BMC rheumatologist’s nurse who handles refills and rescued me from yet another refill emergency last week—when I tried to refill an essential medication, I was suddenly told that I was correct that refills remained on the scrip, but, unbeknownst to me, despite checking last month, the scrip had expired. Unbelievable. She worked her magic and the prescription was on its way from a specialty pharmacy that afternoon. It arrived on time on Saturday.

No way to know if we’ll be able to get through the prior authorization process for this med before we leave, but if anyone can make it happen, she can. And if it takes longer than I can wait, I’ll just have to skip a few doses every other day at the end of the trip. Certainly not ideal, but not life threatening, either. Fortunately. This is a pill that helps my hand circulation, but we’ll be in a warm climate, anyway.

Time to get packing. I’ll be taking a vacation from this blog for a few weeks, too. I wish you, Dear Reader, a lovely, restful deep summer (north of the equator—to those of you down under, I hope your winter isn’t harsh). Be well.

Image Credit: Cathy Kaplan

Declaration of Independence

Evelyn Herwitz · July 5, 2016 · Leave a Comment

Now that the fireworks are over and the grills are stilled, school is out and vacations are in, I want to pause for a few minutes to consider the word at the center of all our July 4th festivities: independence.

Not the politically-charged nuances—that’s for another kind of blog. Rather, I’ve been thinking lately about what it means to be independent as an individual living with a disease that challenges your ability to do for yourself—and whether that really matters as much as it seems.

Independence is certainly central to our nation’s psyche. Our country was born by breaking away from colonial rule under a tyrannical king. The rugged individualist, the cowboy, the inventor, the explorer—these were America’s formative heroes.

Today the self-made entrepreneur, the start-up genius who becomes a multimillionaire is idolized. Star athletes, whose success depend on teammates, are singled out and lauded for exceptional skill; they may credit the team, but their own names become national brands. The mark of adulthood in our culture is making it “on your own.”

But what does that really mean? I’m as driven as the next American to be self-sufficient, to support myself and those I love, to get around on my own in my car, to manage my finances and run my own business.

And yet, none of that would be possible without many, many interconnected relationships with others. There is not one thing that I do all day that does not depend on some form of collaboration—from staying safe on the highway because others around me obey (mostly) the rules of the road, to taking my daily doses of medication because I’ve received good advice from my team of physicians and I can afford the drugs with my husband’s employee health insurance.

Unless you’re a survivalist or a hermit, being independent is really all about holding up your end of the bargain with all the other members of your family, friendship circle, community, nation—and, most broadly, the planet.

It does not mean doing everything yourself, without any help. It doesn’t mean not asking for help when you need it. Indeed, asking for help, which can make you feel childlike or weak or less-than in a culture that so prides itself on the appearance of self-sufficiency, is often an act of courage.

Here is how I think about independence, after more than three decades of living with scleroderma: It mean doing the best you can, within the breadth and limits of your own capabilities, while recognizing—no, honoring—your interdependent connections in the web of life. It means helping others when they need the support that only you can provide. It means standing up for yourself when you need to speak up—and speak out—to set things right, for yourself and others.

Our nation turned 240 years old on Monday. In these tumultuous times, each and every one of us is needed, each has something to offer for the greater good of all. The next time you know you must ask for help, go ahead—there will be more than enough opportunities to extend a hand in return.

Image Credit: Thad Zajdowicz

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