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

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.

State of Mind

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.

And I Didn’t Get Sick

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.

For Better or Worse

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.

 

Long Shadows

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.

Violet Thread

Just three bandaged fingers. That’s all. Pretty good for June, before the weather gets really hot. And only one fingertip has a persistent ulcer that’s taken months to begin closing. The other two, my thumbs, need extra protection for sensitive skin that I hope will heal as temperatures finally rise here in New England.

I’m sure I’ll be griping along with the rest of my neighbors when we hit the inevitable mid-summer muggy heat wave. But for now, the prospect of 80 degree temps this week sounds grand.

My gums are also healing from last month’s emergency tooth extraction, the tissues filling in over the bone graft where my resorbing, sore molar once resided. In a couple more months, it will be time for the implant. By Thanksgiving, I hope to have all my teeth again. And, hopefully, sometime between now and then, our dental insurance plan will find the paperwork from the periodontist’s office that justifies the bone graft as preparation for an implant, instead of informing us that it was not “dentally necessary” and refusing to send a reimbursement.

I’ve been sewing, too, mending clothes for my eldest, Mindi, before she left last week for Israel. I patched a favorite pair of jeans, even found matching fabric from a similar pair that belonged to her sister, after Em trimmed hers for summer cut-offs. With a few daubs of superglue, I mended a broken purse-strap. Next on the list: restitching a waistband. I just need to pick up the right shade of violet thread, which gives me a good excuse to go to the fabric store and peruse the sewing catalogues.

As I write on Sunday morning, Al is out back, clearing brush, weeding, puttering in the yard. I spoke to our arborist on Friday about tree maintenance, and we now have a pruning estimate for the overgrown Bradford pear, Japanese maple, Norway maple and yews, plus an environmentally friendly solution for the plant bugs (yup, that’s what they’re called) that have infested our boxwood hedges.

Halfway across the world, as Mindi co-leads a group on a whirlwind Israel tour, things are not as calm. A few days before she left, three Israeli teens were kidnapped by terrorists while hiking in the West Bank; tensions are mounting as Israeli forces search for the missing boys, arresting hundreds of Palestinian suspects. The leader of the Palestinian Authority has condemned the kidnappings and vowed cooperation. But retaliatory rockets were fired from Gaza into southern Israel over the weekend, not far from where her tour group was supposed to spend Shabbat, and intercepted. A few Palestinians have died; the IDF asserts self-defense. This will get worse before it gets resolved.

Mindi comes back to the States in early July. Meanwhile, Iraq is erupting in bloody sectarian civil war. I asked a friend who is a veteran of Iraq, Afghanistan and Vietnam for his assessment. The Iraqi government is totally corrupt, he says. Not even their own troops want to fight for them. I watch news reports and feel sorrow for the innocent citizens trapped in the middle and grateful that our country, for all its serious problems, is relatively peaceful and secure.

I am trying not to let all of this news make me crazy while Mindi is so near the action. We’ve been through tense times before when she lived in Tel Aviv during the rocket attacks in 2012. Life is never without risks. I remind myself that the odds of serious injury or worse are greater whenever I drive on the Mass Pike than when my adventurous daughter travels abroad.

And so, I focus on repairing what’s within my control. I tend my finger ulcers. I follow my periodontist’s directions to care for my healing gums. I plan a pruning schedule for overgrown trees. And I pull out my sewing machine and go to the fabric store for violet thread.

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.

Red Sandals

Right before Passover this past April, I went through my closet and gave away about a dozen pairs of shoes and sandals that I could no longer wear. I’d accumulated them over decades, and each set was a favorite.

But it was simply time to face the fact that the fat pads on my feet have thinned so much from scleroderma that I need a lot of cushioning, and my old favorites hurt. Most of them I hadn’t even considered wearing for years. I had just kept them because I liked them so much.

Hard to part with the shoes, and the idea they represented—that it’s still possible for me to walk with style. Recently, the only shoes I’ve been able to tolerate are two pairs of lightweight, fabric mesh Merrell clogs, navy and black, in which I can insert custom, full-sole orthotics. I’m grateful that these are so comfortable, but they really don’t go well with skirts and dresses.

Of all the shoes I gave away, the ones I parted with most reluctantly were a pair of red sandals with two-inch heels. Nothing like red sandals. They always used to give me a boost, height-wise and mood-wise.

So now, mid-June, it’s finally feeling summery for more than a day here in Central Massachusetts, and no red sandals, no walking sandals, no sandals I could count on for casual wear or work appointments.

I had scoured online shoe sites without seeing anything that seemed worth trying. So hard to tell, and with sandals, the foot sole is key because you obviously can’t insert orthotics.

The only real solution: Go to a shoe store where the staff still know how to fit your feet. This is not easy to find. But there is such a store about a 40 minute drive from home. I haven’t been there in years.

So, with an hour to spare between two appointments last week that took me in the right direction, I made a pilgrimage. The selection hadn’t changed much since my last visit. The show window and displays were full of all the predictable comfort brands, some attractive, some downright clunky.

One would think, with all of us baby-boomer women now at the age of sore feet, that someone out there would approach the question of how to design comfortable, stylish shoes with a bit more imagination. But apparently not.

Round and round the store I walked, picking up possible choices and pressing the foot beds with my thumb. Per usual, the nice-looking sandals didn’t have enough arch support or cushioning. The most comfortable walking sandals were $225 and really, really ugly—like a pair of shovels.

I was about ready to give up and leave when I circled around one more time. There, on the wall, was a pair of raspberry red Dansko sandals—two wide straps of faux snakeskin with silvery buckles on a cushioned, rubbery platform that was styled to look like carved wood, but much more shock-absorbent. Now, I had given away a similar, well-worn black pair, not as attractive, right before Passover, because the cushioning was just not thick enough and they were too loose and caused blisters (probably because my feet are much thinner than when I had purchased them at least five years ago, so they didn’t fit properly anymore, and the footbed was worn out).

But, on a whim, I tried on the sample. It fit. Perfectly. The salesclerk found the mate in the store window, and I took a walk up and down the aisle. No pain. The shoes rolled easily from heel to toe. Excellent arch support. Good cushioning. They even made me stand up straighter, something about the balance of the shoe.

And they were red. On sale.

So I bought them. The salesclerk assured me that I could bring them back within two weeks and get a refund if, after wearing them around the house (not outside), I had any problems.

Over the next few days, I tried them on at different times. Still comfortable. I could do stairs. I could walk on our wooden kitchen floor and on the concrete in the basement.

On Sunday, sunny, full of summer promise, I decided to commit. Out the door, with Ginger on her leash, around the block. Success! Then in the car, over to the art museum, on my feet walking around for an hour to view my favorite works. A little foot fatigue, but still good. No real soreness.

There are probably no ready-made sandals in the world that will ever solve all my issues, but this pair sure gets at thumbs-up for darn near perfect.

Oh, and did I mention? They’re red.

Image: June, 1975—Hydrangea by a Pond, Stencil-dyed paper calendar by Keizuke Serizawa (1895-1984), Worcester Art Museum

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.

Multitasking

Friday morning. While brushing my teeth, thinking through the day ahead (must leave the house by 10:00 to get to my 11:40 annual cardiology check-up in Boston, must take my laptop with access to work files for the inevitable waiting-room doldrums), I suddenly wonder: I see my rheumatologist in two weeks, but I know he ordered a pulmonary function test to be done prior to the visit. Is it today?

I check the calendar on my cellphone. Sure enough—PFT at 2:30. I never transferred it to my desk planner (yes, I prefer a paper calendar for a weekly overview, easier to get the gestalt).

My entire afternoon is now in flux. I had a lot of work planned for when I got home. Now I really need to be in full portable office mode. I check emails before I leave. One of my clients needs to discuss a consultant’s proposal. I suggest a 1:30 call. I should be out of my first appointment and waiting for the second by then, and I can park myself in the lobby outside the diagnostic lab for the conference call. Laptop, cellphone and charger stowed in my purse, I head out the door.

Fortunately, traffic is moving well, and I arrive for my first appointment ahead of time. My doc is running a bit behind. There’s an electrical outlet near one of the chairs in the waiting room. Perfect. I set up my laptop with the charger, so I won’t drain the battery later, and begin to work through emails. Of course, this magically conjures the cardiology tech, who calls me in for my appointment.

Juggling purse, coat, computer and cord, I make it through the preliminaries of weight check-in. As she records my blood pressure and oxygenation level, my mind is on my work. I sit on the edge of the exam chair, waiting for her to calibrate the EKG machine, and watch the black second-hand of the wall clock. Click-click-click-click-click.

EKG recorded, I set up my laptop and log into the WIFI. I’m about to start up with the emails, but stop myself. Oh, right. The reason I’m here is to see my cardiologist. Better make some notes about issues to discuss. I jot these down in a small notebook and go back to work. I finish typing as my cardiologist enters the room. Switch gears. This is about my health, now.

Ok, focus. The main issue of concern is a recent episode of shortness of breath. At a party in March, I had been dancing vigorously and then stopped because my knees were getting tired. As soon as I sat down, I had trouble catching my breath. This is why I have the PFT scheduled at 2:30, to get a current reading on my diffusion rate. My cardiologist reviews the details carefully. We have been working with a hypothesis of exercise-induced pulmonary hypertension, a variant of late-stage complications of scleroderma, for several years, now. It could be that, it could be something else. But the episodes are infrequent (fortunately), my echocardiogram history is consistent and my meds are all in order, so for now, he tells me, just avoid sudden, strenuous exertion, which seems to be the trigger. Keep on exercising, though. And if it happens spontaneously or more frequently, call him. He schedules a follow-up in six months. I feel reassured.

Over the next hour, I fit in lunch and search for a quiet place to work with a WIFI signal. This takes persistence. The signal is inconsistent, depending on location. But by 1:30, I’m back online, in a lobby with hardly anyone around, and am able to speak for a half-hour with my clients in NYC. I follow up with some other business, plus texts and emails with my eldest daughter. I make it to the pulmonary function lab at exactly 2:30.

More waiting. The lab tech needs to make a call, so I squeeze in another text response. Now for the tests. She reviews the procedure, which I’ve done many times, and begins instructing me to first breathe normally into the tubing attached to diagnostic equipment, then take a big breath in, push it all out and another big breathe in. It’s physically challenging for me, and requires mindful awareness of what constitutes a full breath in and a full breath out. As we’re running the test, she chats with another tech who is making a phone call.

Then a doctor—I assume, he’s wearing a white lab coat and the techs wear blue scrubs—steps into the open doorway. We’re repeating the test, the tech is waving her hand in a sine curve to indicate I should continue normal breathing, I’m trying to focus on what I’m supposed to be doing, and he’s telling her that there’s an issue with her quality scores for some research study that they’re involved in. He continues to discuss this with her as she defends herself and interjects verbal and visual cues to me—when to push out, when to breathe in.

Finally he leaves. Time for a break between tests. She realizes she forgot to set up the next test correctly and needs to recalibrate the equipment. She’s obviously flustered. I try to say something reassuring. I field another text from my daughter as we wait. We talk about our children, about texting, about staying in touch. I feel awkward for her. How humiliating, that her superior would give her critical feedback while I’m sitting there. And how uneasy it makes me feel, wondering if she knows what she’s doing, though she certainly seems to. And how ridiculous, to be conducting that conversation while we’re engaged in a diagnostic that requires concentration.

But of course, we all multitask. It’s a given, right?

Later, much later, after I’ve driven home through Friday afternoon traffic and have finished all the record-keeping, follow-up emails and return phone calls, and I can finally forget about work and relax over Shabbat dinner, I pause and notice—the pink peonies and purple irises in a blue ceramic vase, the white candles flickering, Ginger’s steady panting under the table, the smell of warm challah and sweet potatoes and baked cod. So good to slow down and just be. So good.

Photo Credit: mr.beaver 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.

Pillar of Salt

Surrounding Israel’s Dead Sea, spires of salt tower like sentinels, guarding barren hillsides. In bright, humid heat, they shimmer, casting craggy shadows on salt-infused sand. These ancient formations no doubt inspired the biblical story of Lot’s wife, who, fleeing from God’s destruction of Sodom and Gemorrah, made the fatal error of pausing to look back and was frozen into a pillar of salt. Indeed, a salt formation near the Dead Sea is named for her.

I once read somewhere that Lot’s wife’s plight was a metaphor for scleroderma. In its most virulent form, this deforming disease locks the body inside hardened skin, from which there is no escape. But scleroderma takes many forms, unique to each individual. And those of us who live with this disease in no way brought it upon ourselves. So the metaphor, while dramatic, breaks down for me.

Nonetheless, scleroderma has been known since ancient times. The Greek physician Hippocrates first described it as thickened skin, around 400 BCE. Carlo Curzio, an 18th century Italian physician and dermatologist, gave the first detailed description of the disease in 1753. His monograph, published in Naples, presented the case of a 17-year-old woman named Patrizia Galiera, suffering from hardened skin that varied in thickness, tightening around her mouth and neck. He noted that her skin lacked warmth, but that her pulse, respiration and digestion appeared normal.

Over the course of 11 months, her treatments consisted of warm milk, vapor baths, leeched blood and small doses of quicksilver. Miraculously, at least according to Curzio’s report, Patrizia’s skin softened and she fully recovered. (However, we will never know if she eventually experienced symptoms of mercury poisoning from the quicksilver.)

During the 19th century, physicians began to differentiate the variations within the broad disease category, including localized scleroderma and en coup de sabre (morphea), the latter so-named because it dents the forehead like a sword blow and then deforms the skin on only one side of the face. Scleroderma also found its way into fiction, afflicting a character in a Sherlock Holmes story by Sir Arthur Conan Doyle, “The Case of the Blanched Soldier.”

The connection between scleroderma and abnormal vasoconstriction was documented by the French physician Maurice Raynaud in 1863. He described the case of a farmer whose arms became numb in winter, and whose hands gradually hardened and darkened. Well-known to many of us who suffer from numb, tri-colored hands, this condition is named for him—Raynaud’s Syndrome or Disease, depending on whether it accompanies a disease like scleroderma or is free standing.

Six years after Raynaud’s discovery, the American Journal of Medicine published the first American report of scleroderma, with a history of three patients. More about the history of scleroderma can be found here.

Today, knowledge of the many variants of scleroderma is deeper and broader than at any other time in history. Research into all aspects of the disease progresses, although a cure has yet to be found. But the rarity of scleroderma—afflicting a median of only 15 individuals per million each year, worldwide—makes it all the more elusive.

Last week, a post I wrote two years ago about a recent breakthrough in scleroderma research found its way around the Internet. Several readers shared poignant stories about experiences with the disease and the loss of loved ones to the most deadly variant. All shared hopes that a cure will soon be found. I was struck, however, by another common thread: Scleroderma is so rare, and so varied in its presentation, that a number of patients suffered all the more because they were misdiagnosed at early stages of the disease. We do not all present as obvious scleroderma patients, with hardened, mask-like faces and clawed hands.

As important as finding a cure, it is essential that physicians in the field, especially those who live and work far from urban centers, with less access to current research, learn to recognize scleroderma and know about available treatments. I applaud the work of the Scleroderma Foundation, which has begun to offer online CME/CNE training for physicians and nurses, in tandem with the Postgraduate Institute for Medicine, to reach out in this regard.

Every step helps—whether in the lab or in medical school classrooms—to ease the path of those with scleroderma throughout the world. We are not pillars of salt. We are not responsible for our illness, helpless or hopeless. We need to support those who are working for a cure, and those who are educating physicians to recognize and properly treat scleroderma. June 29 is World Scleroderma Day. Make your mark.

You can find more information about current research and education efforts here:

Photo Credit: M Disdero 25/02/2007, Pilastro di sale sul Mar Morto, indicato dalle guide turistiche come la moglie di Lot trasformata in statua di sale durante la distruzione di Sodoma. Wikimedia Commons

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.

Commencing

Polliwogs dart in the reflecting pool like animated apostrophes, their slender tails whipping water, propelling bulbous black heads. Within a few weeks, they will sprout legs and become tadpoles, then absorb their tails to grow into froglets, and, finally, full-fledged frogs.

I watch them zig-zag in their search for algae, blissful, I imagine, ignored by the goldfish who share the pool and travel in schools. A red-winged blackbird lands at the water’s edge and splashes, cleansing its wings, then flies to a nearby tree to dry in the sun. A boy skips rocks across the water, but the polliwogs seem undisturbed, flitting beneath mirrored clouds.

Al and I are sitting by the pool on Sunday afternoon, waiting for Emily, who is waiting for the residents of her dorm to pack up all their belongings and leave campus. This is her final resident adviser responsibility on the very last day of her senior year of college. This time yesterday, she graduated, walking proudly in black cap and gown with her classmates up the hill, in the welcomed sun, following the path to the huge, white commencement tent—a tent as large, one parent quipped, as an airplane hanger.

I study the pool’s inhabitants and replay Saturday’s ceremony. The class of 2014 leaves this bucolic campus for a troubled world. The Commencement Speaker urges graduates to employ their proven imagination to help solve the seemingly intractable conflicts and challenges facing our nation and planet. The College President provides the context: This August marks the 100th anniversary of the outbreak of World War I. So much progress, so much bloodshed, so much discovery and retrenchment in the century that has followed. Creativity, optimism in defiance of cynicism, the power of the individual to make a difference, reasoned debate to resolve conflict, empathy for the other rather than obsession with material success—these are the values he charges the graduates to take with them.

The greatest ovation comes for a tall man who walks jauntily across the dais after receiving his diploma—a former prison inmate who served time earning his bachelor’s from this rigorous college. Recidivism rates for graduates of the college’s prison outreach program are very low, proof of the power of serious education to enable a fresh start, with promise. We all stand, cheer and cheer, our hope for the future renewed.

Hugs, photos, receptions. The sun defies rainy predictions, and the light breeze refreshes. Mindi, our eldest, serves as family photographer and Facebook chronicler, so much more adept than I, and her real-time posts prompt kudos from relatives and friends around the country.

The celebration ends with a barbecue overlooking the Hudson River and spectacular fireworks that echo off hillsides. I have looked forward to this event since Emily first arrived on campus. Her college education, formal and informal, has exceeded all our expectations, and this day is a glorious conclusion.

By the reflecting pool, shadows grow longer, and a breeze stirs the water on a clockwise course. With staccato rhythm, a pond skater on delicate, hinged legs hops across the surface. Polliwogs swim beneath it, oblivious, but when they become frogs, they will consider the insect a delicacy. I marvel at its amazing ability to walk on water. What inventions will someone yet discover, adapting its evolved mastery of surface tension to maneuver in new realms? And what predators will swoop down and gobble up the polliwogs before they are full grown and able to devour the pond skater?

The pool surface ripples from the boy’s skipped stones, briefly shattering the reflection of cumulous clouds above trees in full leaf. Then all is stillness, apparent stillness, though the water is always moving, the goldfish and polliwogs and pond skaters in their endless dance, searching for sustenance.

Emily is home for only a week, than returns to her alma mater for the summer, to help with preparations for the intensive orientation program that will greet the incoming class of 2018 in August. This makes our leave-taking a bit easier. She will deeply miss it here, even as she knows her next move—on to graduate school, to prepare for a career in higher education administration. She has blossomed in so many ways, found her voice, found her direction, made lasting friendships. But new challenges await. The next transition begins.

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.