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Reflections on the Messy Complexity of Chronicity

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“You must do the thing you think you cannot do”

Evelyn Herwitz · July 29, 2014 · 2 Comments

At the FDR Museum and Library in Hyde Park, N.Y., there is a wooden box with a metal handle. You can pull up on the handle to lift the hidden weight inside. The weight is as heavy as the steel braces worn by Franklin Delano Roosevelt to support his body while standing and walking, after his legs were paralyzed by polio when he was 39. The handle is very hard to move.

Freedom from Fear Hyde Park 7-27-14Whatever your politics (the arguments that raged 80 years ago during FDR’s presidency about the role of government in our daily lives versus unfettered free market capitalism could be cut and pasted into today’s news reports), Roosevelt’s struggle to overcome polio is one of the most inspiring stories I’ve encountered about facing down a chronic illness.

We visited Hyde Park on Sunday, the last stop in our week of day trips that included beaches, dinosaur tracks, the Nathan Hale Homestead, country roads and villages, a woodland hike and Shakespeare al fresco. Though I was familiar with some of FDR’s history and had visited the Roosevelt family home when I was very young (to our daughter Emily’s amusement, I kept remarking that it all looked much smaller than I recalled, undoubtedly because I was about three at the time), I had never understood the full implications of FDR’s illness.

In the summer of 1921, Roosevelt, then a rising star in the Democratic Party who had already served two terms in the New York State Senate, three years as Assistant Secretary of the Navy under Woodrow Wilson, and had been nominated for Vice President on the 1920 Democratic ticket with James Cox, went to visit a New York Boy Scout camp prior to his vacation on Campobello Island, Canada. While sharing food and water with the campers, he was probably exposed to the polio virus.

Not long after, as he was sailing on the Bay of Fundy, FDR lost his balance and fell into the icy waters. The next day, he began to complain of back pain. Within hours of going for a swim, his legs weakened. Three days later, he could no longer stand. He was diagnosed with infantile paralysis, known as polio, on August 25.

The diagnosis was devastating to FDR and his family. He decided to remove himself from politics that fall in order to focus fully on his recovery, but it took another seven years—seven years—for him to regain enough strength and stamina to reenter the political arena. He filled those years with a rigorous regimen of exercise to strengthen his upper body, hot springs treatments and swimming.

By the spring of 1922, he had learned to use the heavy steel braces that stabilized both legs from hip to ankle, locking his knees so they wouldn’t buckle, and was able to walk with assistance. He devised a nimble wheelchair using a dining chair with bicycle-like wheels, a vast improvement over the cumbersome wheelchairs of the day. In the family Springwood estate in Hyde Park, he designed a wheelchair lift worked with hand-pulled ropes, like a large dumbwaiter, that he manipulated to hoist himself between floors. He invited friends and family to keep him company, laugh and joke as he did his exercises, to lift his spirits and normalize the experience for his children.

Two years later, FDR tested the political waters and the public’s reaction to his disability by introducing New York Governor Al Smith as candidate for president at the 1924 Democratic Convention. Walking to the podium with the aid of crutches, he was met with a three-minute ovation—a remarkable outburst of support at a time when people with disabilities were all too often treated as weak and mentally defective, marginalized by their families and isolated by society.

In 1928, FDR ran for governor of New York and won the first of two terms in office, during which he pushed a progressive agenda to aid individuals who suffered in the aftermath of the 1929 stock market crash—policies that helped him to win the presidency in 1932 as the Great Depression deepened.

While his political acumen was key to his political success, FDR’s battle with polio is also considered by historians to be one of the most critical factors in his ability to connect with average Americans struggling to survive during that dark period. His wife, Eleanor, often called his disability a “blessing in disguise”—a deep lesson in patience and persistence, qualities so essential for a President who led the country out of the Depression and through most of World War II.

In FDR’s own words: “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ . . . You must do the thing you think you cannot do.”

For more about FDR’s battle with polio, see this excellent article from the FDR Library.

Image: “BreakFree,” by Edwina Sandys, granddaughter of Winston Churchill, carved from segments of the Berlin Wall, outside the FDR Library in Hyde Park, N.Y.

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, Mind, Sight, Touch Tagged With: body-mind balance, FDR battle with polio, managing chronic disease, resilience, vacation

State of Mind

Evelyn Herwitz · July 22, 2014 · Leave a Comment

It’s finally here, a week when Al and I kick back and take advantage of all that New England has to offer in the summer, beautiful and fascinating places that other people travel miles and miles to visit, but just happen to be within a few hours’ drive of our home.

We got into summer day-tripping a few years ago to economize, and now it’s become a highlight of the year. We started off on Sunday with an afternoon in Boston’s South End, browsing stores and artist lofts and outdoor booths filled with all kinds of crafts, a massive indoor vintage market (read, upscale term for flea market), plus a farmer’s market.

Strawberry Banke 7-21-14On Monday, we drove up to Portsmouth, N.H., to Strawbery Banke, a living history museum covering four centuries of life in one of that city’s oldest communities. Period homes are surrounded by heritage gardens, including one with a children’s tea party set amidst fanciful fairy houses.

I wouldn’t mind living there for a while. In the fairy garden, I mean.

Even as I’m enjoying the break from routine, the glorious weather so far and discovering regional treasures, I’m having some trouble separating out from what else is going on in the world. When you leave your home for a period of days or weeks, it’s easier to take a complete mental break. This is essential to recharging and relaxing, so critical to maintaining health and well-being.

But I can’t seem to tear myself away from following news in the Middle East. Trying to set a limit, but I feel compelled to keep up, even as I find the developments so stressful. Too much is at stake.

So I was grateful to find an oasis of peace right here in our hometown Sunday night. A few years ago, Al and I decided to initiate an interfaith dialogue between our synagogue and a local mosque. Since that time, members of both our communities have studied texts together, broken bread and come to understand how much our faith traditions have in common.

Weeks before the most recent hostilities broke out between Israel and Hamas, our friends at the mosque had invited us to join them for a Ramadan break-fast. And so, this past Sunday evening, a group of our congregants and our rabbi went to the mosque and shared in a study session about the meaning of the Ramadan fast. We explained fasting in our Jewish tradition. We asked questions. And we learned, once again, how much we have in common.

What made the deepest impression on me, as I listened, was how both Ramadan and Yom Kippur are intended for introspection, self-improvement, mending relationships, bringing goodness into the world and drawing closer to God. Both faith traditions are deeply committed to peace.

I will carry that awareness with me as I follow the news and pray that the best in both sides will prevail. And I’ll try to create my own inner space of peace, appreciating what is good and beautiful all around me, as I take a break from headlines, deadlines and most of my responsibilities for a week. The alternative is to wear myself out, and that won’t do anyone any good, especially me.

After all, vacation, no matter where you are or how you do it, is really only a state of mind.

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, Taste Tagged With: body-mind balance, mindfulness, resilience, vacation

And I Didn’t Get Sick

Evelyn Herwitz · July 15, 2014 · 2 Comments

Sitting in St. Louis’s Lambert Airport on Monday morning as I type on my laptop, watching fellow passengers gather at my gate. Surprisingly, some people are actually sitting and talking with their neighbors, rather than burying their noses in cell phones or tablets. One woman is reading a book. As in, the kind made out of paper.

photo-1But plenty of others are typing on laptops, like me, or talking business on smartphones (loudly—don’t they know others are listening?) or texting or checking emails or playing games on tablets. There are comfy armchairs next to electrical outlets to accommodate all our gizmos. I have managed to get everything into my carry-on and purse, so no worries ahead about losing luggage. I’m getting better at air travel since my trip here last year, when my return flight connected through JFK and my checked bag disappeared for 24 hours.

Despite Midwest heat and humidity, the sky is robin’s egg blue with puffy cumulous clouds. A pleasant end to a lovely weekend with my older sister and family, including a visit to the exquisite St.Louis Art Museum, great meals featuring my brother-in-law’s home-grown vegetables, an al fresco Italian dinner, Shabbat services at a local congregation that felt just like home, sharing the Cardinal’s ups and downs against the Pirates and the Brewers, a Sunday brunch with friends, the World Cup finale, and a drizzly performance of Gershwin’s Porgy and Bess at the outdoor Muny Opera (one hour rain delay halfway through Act 1, and the show was cancelled before the last three songs due to approaching thunderstorms, but even so, the music and acting were terrific).

The highlight of our weekend together was hearing my sister, a talented flutist, perform wonderful music with her woodwind quintet at a local bistro. That, and sharing old family stories. “Are you making that up?” she asked me, laughing, since I can always remember more about the past than she, even as we’re both getting a bit fuzzy about recent events. Ah, the power of longterm memory.

Travel remains a challenge—inevitably, the bandages on my finger ulcers get messy and loose, and I need to manage my energy and joints. Getting through security is exhausting, with all the lifting and sorting, organizing purse, shoes, laptop in gray rectangular buckets and then reorganizing everything quickly so as not hold up the person behind me. But fellow travelers have been very helpful, especially with hoisting my bag into the overhead storage bin and retrieving it. And so far, no one’s been too pushy or impatient.

I also decided to pay extra to fly direct this time, to save wear and tear on my body. Definitely the way to go, when possible. So much less stressful, all around.

Best of all (though perhaps I’m tempting fate, here), I have not gotten sick on this trip as on previous ventures in the recent past. No infected ulcers. No cellulitis. No cold virus. No eye infection. No rotten tooth. My worst physical ailment has been reduced hearing and stuffy ears for about 12 hours after landing. All good, and encouraging.

Travel doesn’t always have to mean setting myself back. It can just mean having a great visit with my Big Sis.

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, Taste, Touch Tagged With: travel, vacation

For Better or Worse

Evelyn Herwitz · July 8, 2014 · 1 Comment

A week ago, July 1, our health insurance policy changed. I don’t know if it’s for better or worse, but it’s certainly going to be more expensive. The hospital where Al serves as a social worker changed corporate owners, and belt-tightening is their M.O. So now we have somewhat lower monthly premiums, but much higher out-of-pocket expenses.

As in a four-figure “deductible”—read, you have to pay this total for your health care appointments and treatments before the plan’s coverage kicks in. Then, once you hit that threshold, you pay a set percentage of the allowable cost (defined by the insurance company, as opposed to the medical provider) of care. But you have to pay close attention to who’s in the approved network, or your share goes from 20 percent of allowable cost to a whopping 75 percent.

Are you following me?

I have been reading through the online summaries, at least five pages of dense tables, that explain what you owe for which kind of service—regular appointments, preventive care, emergency care, in-hospital, out-patient procedures, on and on. But I’m going to have to call Member Services before my next appointment to be sure I understand what I’m supposed to do and not incur unnecessary expenses because I forgot to get pre-authorization or picked the wrong place to have a test.

Basically, I’ve concluded, we’ll be paying a lot up front within a few months, because I have a lot of expensive appointments. It may be fall or winter, even, before we begin to see the benefits of the insurance coverage. And that also depends on when the deductible year starts. Is it in July, when our new coverage began? Or is it in January, as the online tables states? In which case, we’ll be, basically, screwed.

And how do we cover that, I wonder? Work harder? Get more contracts? Al’s salary is fixed for the year. So it’s up to me to find additional income to pay for this up-front expense. Or we’ll have to borrow from our equity line. Or something.

I understand the drive to create incentives for medical consumers (i.e., patients) to choose doctors wisely and to be sure that any procedures are necessary and cost-effective. That’s good business and good medicine. I get it.

But it would be nice if the new, more expensive health insurance plan that is saving the employer plenty of dough would also be accompanied by some significant financial assistance for employees and their families to make the transition. Plans with large up-front deductibles penalize individuals like me, with complex, chronic medical conditions not of our own making or choosing, who may or may not have the ability to earn enough extra income to fill the gap.

I realize that I’m still fortunate to have comprehensive medical insurance through Al’s employer. I have not checked the Massachusetts health care exchange to see how much it would cost for my coverage if he didn’t have access to a good plan. I’m hoping and praying he has the energy and good health to keep working (not to mention, a good job) until I’m eligible for Medicare in a few years.

A friend who is an expert in health insurance, whom I consulted when we first learned about our options, tells me this kind of medical reimbursement insurance plan is just the latest trend. We’re catching up here in Massachusetts to what the rest of the country’s employers are already offering.

But it’s going to get more complicated, she says: Next up, narrow networks. That means, regardless of who your docs are, your health insurance carrier will limit the physicians they will reimburse to ones that they deem are providing the highest quality care for the least cost, based on a raft of comparative data. Again, from a global perspective, this makes sense. But if the physician you know and trust doesn’t make the cut, you’ll have some difficult choices to make.

For me, right now, no choice but to stay informed, ask a lot of questions ahead of time and keep close track of those invoices. One way or another, we’ll make this work. I just wish it were simpler to understand—and that I didn’t feel treated like it’s somehow my fault that I have this expensive-to-manage disease and have to shell out, regardless of ability to pay.

Photo Credit: Images_of_Money via Compfight cc

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, Mind Tagged With: health insurance

Long Shadows

Evelyn Herwitz · July 1, 2014 · 2 Comments

At last. Sitting on the beach, in the sun, watching the waves roll in. I’m wearing shorts and a tank top, lots of SPF 50 sunscreen to avoid getting a rash on my photo-sensitive skin. I won’t be swimming, because the Atlantic is far too cold this early in the season, and the waters off Block Island, R.I., are chilly, and I have ulcers on my fingers that I can’t risk immersing.

But it feels good to be here. Even if the breeze is stiff and I have to pull on extra layers as Sunday afternoon deepens. Even if I can’t swim like I used to as a kid, jumping over the waves and body surfing until I turned blue and my teeth wouldn’t stop chattering.

So I sit in my beach chair and read a novel, do a little of the Sunday New York Times crossword, watch Al swim and dive in the surf. I take a nap and work on my tan (have to be careful with this, not overdo, given skin sensitivity). I wonder why the people next to us on the beach, with very loud voices, don’t realize that everyone within 20 feet, at least, can hear every word of their conversation, including how one of the men and two of his friends each won $500 at a craps table in Montreal and other fascinating details (for them, not for the rest of us).

Fortunately, I’m able to screen out their conversation when I read. And no one really seems to mind. On the beach, on a sunny Sunday, it’s live and let live.

As shadows elongate, we walk up the shore, collecting pebbles and even a few bits of sea glass—unusual for this beach, which is usually picked clean. I sit on a large rock as Al explores farther, my arms wrapped around knees to stay warm in the cool breeze, and watch a dad and his three daughters, all in wet suits, play catch with a pink-and-yellow rubber ball in the surf.

On our walk back, we pass a black-and-white mutt worrying a piece of driftwood, barking at its owners as they play in the water, then barking at the driftwood, then shoving the driftwood around with its nose and barking at it again. Someone has made a terraced sandcastle with smooth, rectangular walls; another has created a castle of sand globs and drizzles.

We eat dinner al fresco, across the road from sand dunes, deep turquoise ocean just visible beyond. We stop for an ice cream cone for Al and poke around the little shops. I find a scarf the color of sunset. We check on the Red Sox v Yankees score as the ferry pulls away from the dock for the hour-long trip back to shore. Our boys are ahead.

The day is a welcome escape from work and responsibility and so much sad and disturbing news in the world. On Monday afternoon, headlines announce the tragic murder of the three Israeli teens who were kidnapped more than two weeks ago, hitching home from school, and I sit at my computer screen and cannot concentrate on my writing. Our sunny, relaxing beach trip seems far away. I grieve for the parents and pray that cooler heads prevail, on both sides of this intractable conflict that could erupt at any moment. No good will come of more bloodshed. I pray that my eldest, Mindi, stays safe as she spends the remainder of her vacation in Tel Aviv.

If only we could all just go to the beach and, together, enjoy the waves, and the sun and a long, relaxing stroll as shadows grow long. Naive, I know. If only.

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: finger ulcers, managing chronic disease, photosensitive skin, 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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