Royal Flush

As the late Joan Rivers would say, “Can we talk?”

I’m referring to bathroom hygiene.

5360420829_c2d1617f3b_bNow, before you say, “E-w-w-w-w-w-w-w,” I raise this because it’s one of those topics that no one wants to discuss in public, but that presents some very real challenges for those of us with scleroderma.

To wit, what do you do when your hands don’t work right—because you have digital ulcers, like me, and/or you have flexion contractures that freeze your fingers at right angles, and/or your wrists aren’t flexible and your skin is too tight and your fingers are sore or just not that strong anymore—and you have to clean your bum after taking a dump?

It’s not easy, and it can be downright frustrating.

I’ve discussed this with occupational therapists over the years and gotten a few helpful suggestions.

Here’s what I’ve found to be most effective. There are three essentials:

  1. Soft, strong toilet paper. Forget the one-ply stuff that supposedly saves money but disintegrates as soon as you tear it off the roll. You just need three times as much to do the job.
  2. Flushable toddler wipes. My favorites include aloe. You can buy these at any drugstore or Target, they’re inexpensive, and they make the whole process of cleaning yourself up much quicker and easier, especially if your fingers are weak or sore. Just be sure to check that the package says safe for sewers and septic systems. You don’t want to clog up your plumbing.
  3. Antibacterial hand sanitizer. These products have gotten a bad name, lately, because of worries that we use so much antibacterial soap and cleanser that we’re encouraging resistant strains of bacteria. But I’ve checked with my infectious disease doc, because I cannot use soap and water on my ulcer bandages without risking more damage to my skin beneath the dressings, and he assures me it’s fine. Hand sanitizer that I rub on and let air dry is a major part of my hygiene routine and a reliable defense against ulcer infections. Again, I favor products with aloe that don’t dry out my skin.

And here’s my method: Make a wad of toilet paper, large enough that you have a good grasp without exposing your fingers. This essentially provides padding for fingertips. Top it with a wipe. This gives you additional protection plus a gentle moisturizer for efficient clean-up. Swipe and flush. Repeat as needed. Then clean your hands with the sanitizer.

Sometimes, if you’re dealing with a bigger job, it helps to have some disposable vinyl gloves on hand, to be sure you keep your fingers clean.

If you have trouble pulling the wipes out of their plastic packaging, try cutting the package apart and placing the stack of wipes into a ziplock bag, the kind with a plastic slider at the top edge (I find these easier to open and close). This is also a good way to carry some wipes with you, in a purse or carryall, when you are out of the house.

If anyone out there has some additional tips, please share. I’m a fanatic about hand hygiene, because I’ve had far too many infections over the years. We all have to use the john, and those of us with scleroderma—or any other medical challenge that limits manual dexterity—have to be creative when it comes to bathroom habits. It’s not just a matter of staying healthy—it’s a matter of staying independent.

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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

Tale of the Tooth

I hate going to the dentist.

It’s not that I don’t like the professionals who take care of my teeth. They are all wonderful, dedicated people. It’s just that there is no easy way for anyone with adult-sized fingers to maneuver around my teeth and gums without painfully stretching my mouth. The skin around my lips is simply too tight for me to open wide.

So, this past week, I was not looking forward to the visit to my periodontist for an implant—the second step of three to replace a molar lost this past spring to root resorption, a rare and very frustrating, painful complication of scleroderma.

This is the second time I’ve had to have a tooth replaced because the root resorbed. The last episode occurred maybe five years ago, and the tooth came out easily because most of the root had dissolved. But drilling to create room for the post was awful—I apparently have a dense jaw, a good thing. However, it took what felt like an hour to drill deeply and widely enough to accommodate the post. Even my periodontist remembered the ordeal.

I prepared for the appointment by shoving it out of my mind. Extracting the tooth back in the spring was no fun at all. It took more than an hour of drilling, breaking the molar into segments to get it out, long roots and all (the root had resorbed sideways into the nerve, rather than lengthwise).

Tuesday arrived, and I was even a few minutes early for my appointment. But construction work in my periodontist’s office building over the Labor Day weekend (so much for Labor Day) had left the practice with no running water when they arrived in the morning, and resolving that issue delayed all appointments. So I buried my nose in a fashion magazine as a distraction.

An hour later, it was finally my turn. Time to lie back, with my head lower than my feet, stare at the ceiling and await Novocaine. Always at this point in any dentist visit, when I know they have to stick needles in my gums, I have to focus on my breathing to manage my panic impulse.

Fortunately, they used a topical anaesthetic, first, which reminded me of Smith Brother’s cherry cough drops (used to love those as a kid, but no more). It dripped into the back of my throat, giving me the icky sensation of not quite being able to swallow, but it successfully numbed my gums enough to reduce the bee-sting pain of the Novocaine shots. Soon the slicing and drilling began.

This is where things got dicey. My periodontist is a real pro, and he understands the constraints of my mouth, but there is just no way to avoid pulling at the corners. Between the tools and the drill and the suction and probing fingers, I was stretched to the max, with no give. It hurt, even with Vasoline on my lips to ease the strain.

Mercifully, this time the drilling went more easily, and the whole procedure, from shots to stitches, took about an hour. I drove myself home, my mouth still very numb, walked in the door, got changed into comfortable clothes, swallowed a Vicodin, got an icepack for my jaw (even with Raynaud’s, this felt good, surprisingly), and lay down on the couch for the rest of the afternoon.

By the next day, I was able to manage the pain with just Tylenol and Ibuprofin. A week later, the swelling is virtually gone, most of my stitches have dissolved, and the gum is healing well. The tears at the corners of my mouth have healed, and I feel almost back to normal.

So, I’m grateful. The procedure is costing a small fortune, because our dental insurance barely approaches the total, but I’d rather have a molar than a gap in my jaw. I’m glad I can have an implant and a crown (that step will wait another three to four months for total healing) rather than dentures, which would be a nightmare with Sjogren’s dry mouth.

A few other teeth are resorbing, but I hope they will take their own sweet time. Meanwhile, much as I hate going to the dentist, I’m sure glad I went.

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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.

Enter Autumn

The other day, as I was walking Ginger around the block, I heard a flock of Canada Geese honking overhead. I never saw them, but I envisioned them flying in V-formation, heading south.

August is over. I’m writing on the first day of September. Even though summer doesn’t officially end until later this month, Labor Day is always my turning point from the comfort of warm, long days of sunlight into the prospect of cooler, darker, busy fall.

Black-eyed Susans 9-1-14Sugar maple leaves are the first harbinger, speckling the sides of our street for the past few weeks with splashes of gold and tangerine. As the days grow shorter, the trees begin their annual rite of passage, hardening for winter. Today seems odd—it’s muggy, hot and very sunny. But the trees know better, what’s coming.

As I write, Emily and Al are packing a friend’s truck for the drive out to her new apartment. Grad school starts this week, both for her, as a first year master’s student, and for Mindi, entering her second and final year of her professional degree program. Closer to home, public schools began last week. Time, once again, to remember to avoid leaving the house mid-afternoon when school buses from nearby schools travel their routes.

I’ve spent much of my Labor Day weekend sewing. I’m nearly done with a new dress. But, of course, it’s a summery dress, not a fall outfit. For some reason, I am never able to sew ahead of the season. I bought the pattern in July. I’ve had the fabric, a beautiful fuchsia knit, for at least five years, purchased another summer with a different dress in mind.

Two weekends ago, I finally altered the pattern and cut out the pieces. I started sewing in the evenings, until our house was full with family, and I had to clear off the dining room table. So I dug in again yesterday, because I finally had time, and because I didn’t want the dress to wait another full year. I may still get some use out of it before the weather consistently cools off.

I am a slow sewer. I have to pace myself because of my hands, and I can’t manage the fabric as well as I once could, which is why I don’t sew often. Picking out seams when I mess up, which is more often than I’d like, is tricky and tedious. I’m more willing to live with mistakes that no one else will notice, given my limitations. The end result is still good enough, albeit not the perfection I’d prefer.

I would like to sew more. My favorite sewing magazine is full of luscious fall fabrics in autumnal hues. The dress pattern I’m using comes from a designer who creates lovely, easy-to-construct clothes. I hate shopping for ready-to-wear, and sewing is the perfect antidote—not only a way to create unique clothes that actually fit, but also a great meditation. Nonetheless, I have to respect my hands. And my energy. And the number of hours in the day.

Ahead lies a solid lineup of work and creative projects to take me well into the fall. Much as I love the summer months, it’s easier to concentrate as the weather cools and everyone else is back to work or school. The trees may shed their leaves and the geese fly south, the weather will inevitably make me long for warmer days and fewer layers, but I’m looking forward to the crisp crackle of new beginnings.

I just need to sew up that wonderful warm fabric I wove last winter into a jacket, before the days grow long again.

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.

To Treat or Not to Treat

Ah, the gift of late August heat in New England. After a week that felt more like September, I’m glad to be back in sandals, at least for the next few days.

I’m also grateful for warmer weather that helps my ulcers to heal. A week ago Sunday, I awoke with pain in my left thumb that I hoped was just an inflammation. The pad of this finger has an intransigent spot of abnormal skin that occasionally gets thick and painful and usually responds well to careful debridement. But not this time.

My thumb was achey as I commenced a six-hour round-trip drive to bring Emily home from her summer job at her college alma mater, and the discomfort was just barely manageable with over-the-counter painkillers that wouldn’t make me drowsy. I suspected an infection. But when I finally got home and took a closer look, I didn’t see any obvious symptoms. No foul odor. No oozing puss. No extreme redness. Maybe topical antibiotics, just to be safe, would do the trick overnight?

I hate starting oral antibiotics, even as I’m grateful always to have some available at home, thanks to a team of physicians who know me well enough to trust my judgment and my follow-up reporting. This is a privilege of living in a wealthy Western country with good health care (despite all the political wrangling). I am very much aware of the risks of unnecessarily treating with antibiotics—the evolution of antibiotic-resistant strains of bacteria—and that threat frightens me, since I’m so susceptible to infections.

So, I waited overnight to see if a more modest approach would work. It did not. Too early on Monday morning, I was roused by severe pain in my thumb. It had swollen just enough to feel trapped in too-snug skin. Basically, it felt like my thumb was stuck in a car door. That, or the stabbing sensation of an intermittent electric shock or an ice pick are the sure signs of a bacterial infection in one of my fingers.

Time to double-up on antibiotics—one pill for the morning, and one for the dose I should have taken the night before. Then I cut a Vicodin in half and swallowed that, too. I also hate, absolutely hate narcotic pain meds, because they make me feel like a space cadet, but sometimes there is just no other way to deal.

It took me a good 48 hours on the antibiotics to dispense with the Vicodin, and another day for the now obvious infection to begin to clear. Today, a week later, my thumb is healing well, along with my other three digital ulcers of the moment, which always clear up when I’m on oral antibiotics.

Thank goodness. But will it always be so?

In his 8-25-14 financial column in The New Yorker, James Surowiecki writes a clear and compelling analysis of why Big Pharma doesn’t invest in new drugs that don’t make a profit.

This is relevant in light of the Ebola crisis in West Africa—“Diseases that mostly affect poor people in poor countries aren’t a research priority, because it’s unlikely that those markets will ever produce a decent return” on R&D, writes Surowiecki—as well as the reason why there is so little research into new antibiotics to treat resistant strains of bacteria.

The reason for the lack of investment in discovering better antibiotics, Surowiecki explains, isn’t for lack of awareness of future need. It’s “the business model. If a drug company did invent a powerful new antibiotic, we wouldn’t want it to be widely prescribed, because the goal would be to delay resistance.” With the prospect of limited sales, Big Pharma doesn’t want to make the investment.

What’s the solution? Surowiecki floats the idea of prizes for new drugs that have a public health benefit. The idea isn’t new: government-funded incentives for innovative solutions have been used for centuries and have become common in recent decades. They are only awarded if the idea works. They help to correct market forces that work to the detriment of the public good.

So why haven’t we started down this path, already? Huge up-front costs. Surowiecki notes that “a recent report commissioned by the F.D.A. estimated that it would cost a billion dollars to get a great new antibiotic, factoring in tax credits.”

To put this in perspective, that’s equivalent to the cost of about 200 Predator Drones.

I hope and pray, before the inevitable crisis hits, that our government can stop the political infighting long enough to get its priorities straight and make a serious investment in the future of public health, both here and abroad.

God-willing, this will happen long before that bottle of antibiotics in my medicine drawer no longer provides relatively quick treatment and relief from an infection that could all too easily get out of hand.

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.

May I Have Your Attention?

If you spend any time on social media, watching TV or reading the newspaper, by now you’ve undoubtedly heard of the extraordinarily successful “Ice Bucket Challenge” that has raised record-breaking donations for ALS research.

It goes like this: You pour a bucket of ice water on your head while someone makes a video of your antics, upload it to social media, then challenge friends to do the same or make a $100 contribution to the ALS Foundation, which funds research to find a cure for amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. ALS afflicts about 30,000 Americans, attacking the nerve cells and eventually causing total paralysis, most often within two to five years of diagnosis. It is debilitating, terrifying and, ultimately, fatal.

Though dismissed by some critics as “slacktivism”—an all too easy, narcissistic and short-lived way to feel good about yourself for giving to a good cause, with no lasting impact—the Ice Bucket Challenge, as of this writing, has attracted support from celebrities ranging from the New England Patriots to Jimmy Fallon and raised more than $15.6 million for ALS this August, compared to $1.8 million during the same period last year. You read that correctly—a more than seven-fold increase. And that, my friends, is nothing to sneer at.

I’m thrilled for the ALS Foundation that they’ve been so successful. I have known good souls who died of this scourge, and a friend’s husband was just recently diagnosed. I hope and pray that all this money may somehow buy him and others like him some time and better quality of life.

But, of course, now I wonder . . . what would it take to draw that kind of attention and donations to scleroderma research for a cure?

A few folks in the online scleroderma community have been wondering the same thing. Suggestions range from sticking your hand in a bucket of ice water for a few hours to simulate severe Raynaud’s, to wearing a scuba diving suit that’s a few sizes too small to sample tight skin.

What about something more playful—a Mummy Wrap Challenge—you know, that silly game where you wrap up your partner in rolls and rolls of toilet paper to look like a mummy? At least it might get people to laugh, even as they developed some glimmer of what it feels like to be trapped in your own skin with this rotten disease. Maybe Scott Brands could be a corporate sponsor. (I’m kidding. Really.)

All of this copycat daydreaming begs the broader questions: How do you break through the clamor of fundraising demands for so many good causes to build lasting awareness and a solid donor base for scleroderma research? And how do you do it in a way that doesn’t trivialize the cause itself?

I can just imagine, on the heels of the Ice Bucket Challenge’s success, that we’ll soon be inundated with all kinds of attempts to be clever and cash in on self-perpetuating viral social media campaigns for various diseases. As it is, every single organization trying to raise disease awareness has a walk of some kind, including for scleroderma. These walks are successful, up to a point, raising needed funds. But they have also become so ubiquitous that they begin to merge into the white noise of our over-programmed lives, attracting mostly those who already know about the disease in question.

There are just so many, many ways that our bodies can break down. And there is a limit to our attention spans and compassion for so many illnesses. Which, ultimately, is why there’s so little government funding, relative to the need, for research into the so-called “orphan diseases” that afflict smaller numbers, compared to, say, cancer or diabetes.

If all of the foundations devoted to finding cures for obscure auto-immune diseases, including scleroderma, banded together, would we have a better chance of raising awareness and donations for cures? Is there research that cuts across all auto-immune diseases that could benefit those who suffer from the all-too-many variants? Would there be more cooperation and knowledge sharing among medical scientists? Would we have more clout in Congress?

I wonder. One thing is certain, though. The Ice Bucket Challenge proves that there are plenty of people out there with good intentions and money to give to find cures for terrible diseases. It’s just a matter of getting their attention and holding it long enough to dump out a bucket of ice water on a hot summer’s day.

In the meantime, please consider supporting one of these fine organizations that are working toward a cure for scleroderma:

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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.

Hidden Costs

Just over a month into our new health insurance policy, and, although it could be worse, the view is not pretty. When the hospital where Al works was bought out last year, I had misgivings. I am not paranoid.

Aside from a four-figure deductible, which, I understand, is becoming the industry standard, we are now dealing with much higher copays for prescription drugs. Much higher. As in double or quadruple what I was paying previously.

I have four medications that are classified as “Tier Three,” which means that the copay is $100. This past year, on a monthly basis, one cost $25, one cost $35, and two cost $50 each. The new system requires me to buy a 90-day supply of one of these drugs, for $200, which brings the monthly cost to about $67. The other three cannot be purchased in bulk, so it’s $100 every time I need a refill.

It all works out to about $5,000 annually for these four medications, none of which have generic substitutions, all of which I need to stay healthy. I even checked out pricing on Canadian drug websites, but because these are all brand name drugs, there is no savings to be found.

So we’re stuck. In addition to this discovery, we also have learned that because the new policy started in July, but the policy year starts in January, we will have to pay the full deductible once again, starting in 2015, before we get any benefits from the plan for medical expenses. This is on top of premiums taken out of Al’s paycheck. Originally we thought his premiums would be lower than last year, but that does not appear to be the case.

Oh, and did I mention? The prescription co-pays don’t count toward the deductible, and there is no cap.

When you add it all up, it appears that this new policy will cost us at least $10,000, probably more, each year—and that’s just for me.

But there’s another hidden cost to the plan—and that’s time. Al and I both have made numerous calls to the health plan and pharmacy plan, just trying to understand what is covered and what isn’t. Then there’s all the follow-up on medications. To give just one example:

I have one medication that I’ve been taking for several years, with no problem under our former plan, that now requires pre-authorization. Okay, fine. I’ve dealt with this before. But we found out about the problem when the prescription bounced back at the pharmacy. This required a follow-up call to the doctor, to be sure she received the FAX with the request to submit the pre-authorization. Then I called the pharmacy plan to find out how long it would take: 72 hours.

All right, but in the meantime, I was out of pills. I called my doc once again and asked if she might have samples. Fortunately, she was able to give me a month’s supply. Her office is at the hospital, so Al was able to pick them up while he was at work, saving me a trip.

I went out of town last week on business and asked Al to follow up with the pharmacy. When I got home, he told me that they had not filled the prescription, yet. So I called the pharmacy to find out what had happened. They said the scrip was still on hold because it required a pre-authorization. Once again, I called the doctor’s office. The nurse told me they had sent in the forms the day I requested them.

Then we checked the mail. There was a letter telling me the request had been declined, because this was a brand name drug and there were other, cheaper meds that could work just as well.

The only problem, and this is why I had been prescribed this particular medication in the first place, is that all the other related drugs cause dry mouth, and I have dry mouth aplenty already due to Sjögren’s syndrome. So I called the doc’s office once again, informed them of the letter and explained the situation about why I couldn’t take those other meds. The nurse checked the pre-authorization file, and, of course, it turned out that no-one had thought to include that fact in the paperwork. So they will resubmit.

That’s just one prescription.

And there is more time involved for determining what my BMC doc visits will cost (they are included in our plan, but there is a facilities fee charge because they all work in hospital settings, and we have to apply for a “gap exception,” which requires proving that there is no one nearby who can perform the same service).

And extra research involved anytime any of us needs to seek medical services away from home.

There’s more to this, but I’ll stop here. You get the idea. Suffice it to say that, although I know a private-pay plan would cost even more, from what self-insured friends have told me, the reality is that we are taking a significant pay cut in our family income with this policy. I’m hoping to make up the difference with additional clients, but there are no guarantees when you freelance. The fact that I work for myself makes it easier to make all the research phone calls, but that’s time spent not earning.

Anyone who thinks that private insurers are making our health care system more efficient, think again. They’re only passing along more costs to the consumer, regardless of ability to pay. And the more complicated your health issues, the more you have to spend, even if your medical condition reduces your earning power.

I won’t be eligible for Medicare for another six years. And by then, who knows what benefits will still be available? Bottom line: Neither of us will be retiring any time soon.

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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.

One More Thing

As my family well knows, I have a bad habit of trying to squeeze in as many items on my to-do list as possible before I head out the door. I get a lot done, but all too often I run late—not horribly late, and I manage to make most appointments on time, but when the deadline is less rigid, I can slide five, ten minutes behind.

The problem is that everything usually works out fine, anyway, which just reinforces my obsession with getting that One More Thing done.

Except for Monday morning, when I had to catch a train to Boston to catch the bus to Logan for a flight to Kansas City on business. (Fortunately, this has a happy ending, but this once again reinforces my bad habit, as you’ll see.)

I was well organized for my trip when I got up, relatively on time (mornings are always hard, as my body is sluggish). My bag was 99 percent packed. Did my exercises. So far, so good. Stopped myself from catching up on news and Facebook, so I wouldn’t waste precious minutes.

Then came the fateful decision to do One More Thing. I had a family project I wanted to finish before leaving the house, which I needed to complete online from our secure network, that I felt couldn’t wait until my return from my business trip later this week. It took about 15 minutes. I had just barely enough time to eat breakfast, finish packing, get dressed and race out the door with Al to get to the train station.

Challenging under even the best of circumstances. But I was also upset with myself, because in the midst of finishing my One More Thing project, I thought I’d messed up the online form because I was rushing and couldn’t backtrack. As I finished shoving the last few items into my suitcase, my hands started shaking. This always happens when I hurry and get stressed. Totally involuntary and very frustrating—my coordination just gets worse.

So I ranted to Al all the way to the train. Fortunately, he is very calm when I freak out. As we drove up to the station, I could see the train waiting at the platform. I jumped out of the car, Al grabbed my bag from the trunk, we said a quick goodbye, and I ran as best I could toward the platform . . . only to watch the train pull away. As one of the conductors, standing on a coach staircase, slid by me, he shook his head and shrugged. Just another late, would-be passenger.

At this point, I started crying. There are many things in this world worth crying about, and this wasn’t one of them, but I was just so frustrated with myself. Al to the rescue (fortunately, he had waited to be sure I got on) with a big hug. Rather than go home and come back in two hours to catch the next train, which would have risked a tight rush to the airport, he drove me in to Logan.

Now, here’s where my One More Thing habit gets reinforced. The ride into town had the advantage of saving my hands from dragging my carry-on from train through South Station to bus to airport. We said a real good-bye when Al dropped me off. I made it through security in 10 minutes, bought a bagel and found a table where I could write before every space was taken later in the morning. And, to top it off, I found out through an email exchange about my One More Thing project that I’d completed the online form correctly, after all. No problem!

Next time I miss a train because I’m trying to do too much, I still hope my loving husband will take pity on me once again and save the day. But I honestly don’t want to cut it so close to the wire, for myself (too much stress) or for him. (Hear that, Al? Thanks again! Love you!)

It’s comforting to know that life usually works out, even when you think you’ve messed up. But it’s also good to remember that One More Thing can usually wait. (Hear that, me?)

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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.

“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.