Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

Spring Tease

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I bought a bouquet of Irish daffodils on Friday, three bunches of slender stalks with buds barely open. By Sunday, they had bloomed, a vase of sunshine in our dining room. Outside, snow still covered the ground. I bundled up in my long winter coat, wool hat, scarf and mittens to brave the damp chill for a half-hour walk around the neighborhood. Winter is clinging, white-knuckled, to Central New England. It’s high time to let go.

In some ways, the spring-masquerading-like-February makes me feel like a bear that is groggy, awakening from a long winter’s hybernation. My finger ulcers are simply not healing, and they smart when I change bandages twice a day. My metabolism feels sluggish from the cold. It’s hard for me to get going in the morning, when the sunlight spells spring but the temperature remains in denial. I really had to force myself out the door on Sunday, but I was glad for the reward of a cleared mind.

But winter cannot supress spring forever. As I walked, I noticed a misting of pale green about some trees. The Callery pear in front of our house has white buds, too. Near the melting edges of snow, tender green blades of grass poke skyward. The earth smells muddy and ripe.

There is birdsong, too. On Sunday, beneath overcast skies, the crows dominated. But the day before, as I walked up the street, dozens of melodies filled the air. Exuberant birds trilled, tweeted, cooed. I wondered what they were saying to one another, and I was glad for their company.

So, I await warmer weather with impatience, yet reassured that nature’s rhythms prevail. Until the snow melts, I’ll fill my vases with daffodils and let the sunshine in.

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.

Small Courtesies

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Amidst the chaos of wire tapping accusations, North Korean ballistic missile tests, proposed budget cuts to so many important federal programs—including the National Institutes of Health, which fund, among other things, research for cures to diseases like scleroderma—amidst all that and more, plus the minor annoyances of daily life, such as discovering that this blog did not publish properly last week (apologies if you subscribe and received a duplicate of last week’s post), I am trying to focus on something positive to keep my blood pressure from spiking.

Like the fact that the guy behind me in the supermarket check-out line smiled and nodded thanks when I placed the metal spacer bar after my food on the conveyer belt, to make room for his groceries.

Or the way that people I don’t know held a door open for me as I was leaving a building this the weekend.

Or how someone graciously allowed me to make a left hand turn from a side street, across busy city traffic, to get in line in front of him for a stoplight.

Small courtesies, the ways that we acknowledge each other’s needs and feelings without fanfare, are essential to keeping sane. More than that, little acts of consideration are the warp and weft of a civil society. When leaders flaunt basic social norms—like honesty and respect for others with different points of view—it falls to the rest of us to strive even harder to be, yes, polite.

Maybe this sounds silly, trivial, like a schoolmarm’s chiding. Etiquette is one of those subjects that has been shoved into the back closet, mocked as an arcane, snobbish concern over which fork to use at a fancy dinner. Those rules are not my concern here. Rather, I’m referring to the deeper meaning of the word. At this time, in this country, with so much social strife and dissension, it’s well worth remembering the wisdom of etiquette maven Emily Post:

“Consideration for the rights and feelings of others is not merely a rule for behavior in public but the very foundation upon which social life is built.”

Amen to that.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Image Credit: Andrew Branch

Storm Tracking

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I’ve been staying indoors for much of the past few days. First, we were hit with single-digit, bitter cold and wind. It’s sunny out as I write on Monday afternoon, but still too cold for a much-needed walk. And by this time on Tuesday, I expect to be watching snow swirling and piling all around as a Nor’easter sweeps up the coast. We’re due for 12-18 inches, maybe more.

So much for gliding into spring.

My hands have certainly had enough. Four fingers on the right hand, three on the left, bandaged up because my ulcers and cracked skin won’t heal in cold, dry air, even with the heat on and plenty of clothing layers. I really wish I could use one of those Sick Bay gizmos on the original Star Trek, wave it over my hands and make the ulcers go away.

I wish I could do the same to solve the terrible discord in our country. I read and read and read, trying to stay on top of all the news without driving myself insane. Staying informed is the essential first step. Balancing how to manage my health and energy and anxiety level as I debate how to get involved in preserving our democracy has become a major preoccupation.

What to do? What to do? When we were kids, my older sister used to write comics with a stick figure girl (you could tell because she had a triangle for a skirt) who would ask that question and then, in a lightbulb flash, always declare I have it! with a ready solution to the dilemma. I can’t recall any more of the story lines, but they always made me laugh.

No quick solutions to our national crisis of conscience, no magic tricorder for my hands, no way to avoid a Nor’easter hurtling our way. Nothing to do but sit and watch the snow fall. I will remind myself to be grateful for our warm house and secure roof and full cupboards, for doctors who care about me and insurance to pay for it all. I will give myself permission to plan my personal political commitment in my own time, rather than over-reacting to the outrage du jour. And I will seek comic relief.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Image Credit: Jude Beck

Introducing Trumpcare

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Yesterday, House Republicans revealed their plans to replace Obamacare, otherwise known as the Affordable Care Act (ACA), with their own remedy, the American Health Care Act (AHCA), soon to be known as Trumpcare.

The good news: the AHCA still mandates that people with pre-existing medical conditions cannot be denied insurance coverage, and that insurers cannot charge them more due to their health. The bad news: It may become more difficult to find robust policies that offer the comprehensive coverage needed by people with chronic health concerns.

Some of the proposed provisions of the new legislation do not go into effect until 2018 (after the mid-term elections) or 2020 (after the next presidential election). Here’s a round-up of some of the best reporting and analysis I’ve found so far:

Washington Post  House Republicans release long-awaited plan to replace Obamacare  3-6-17

New York Times   The Parts of Obamacare Republicans Will Keep, Change or Discard  3-6-17

CNN Money   Republicans’ Obamacare replacement bill: The winners and losers  3-6-17

Forbes   Republican Health Care Plan’s Continuous Coverage Idea Needs a Redraft 3-6-17

We have a long way to go before this issue is resolved. Four Republican Senators have already expressed their concerns about the House proposal, and the Democrats are promising a fight. Somehow, someway, I sincerely hope we can get past the partisan wrangling to come up with a solution that truly works for all Americans. It’s not going to be easy, and it certainly is not going to be quick.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Image Credit: Motion Studios

Parallel Universe

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About thirty years ago, when we had our first dog and no children, in our first home, we were robbed.

We didn’t actually know it until a police officer came to the door that evening. Earlier in the day, the thief had shown up at our bank with a forged check he’d snitched from the middle of our checkbook. Unfortunately for him, but fortunately for us, an off-duty cop was at the bank when he pulled his stunt—and recognized him.

We were shocked. Sukki, our lab-springer-golden mix, had apparently welcomed him with a friendly wag of her black-and-white tail as he went through our desk drawers and my jewelry box. Not only did he steal the check; he also fenced some of my jewelry, a pearl necklace from Al and a gold charm bracelet that my grandmother had given me. But at least he didn’t steal our bank balance.

Maybe a year later, we went to the county courthouse as witnesses in his trial. Let’s call him M. We met a few other victims. To the best of my recollection, one of them told us that M had stolen a TV set and then called a cab to take him home. Needless to say the guy had bad judgment. He was a crack addict. We waited around for hours, only to learn that the case had been plea-bargained, and M would soon be sentenced.

Since that time, every so often, we receive letters under the Commonwealth’s witness protection program about M’s whereabouts in the correctional system. He would move from minimum security to medium security and back again, fail to achieve parole over and over. For three decades. About a month ago, M came up for parole and actually made the cut. I have to admit, I was both astonished and a bit glad for him. Thirty years is a long, long time to be in prison. But I was not optimistic. (I am not in the least concerned that he would reappear at our door since we moved so many years ago.)

Sure enough, on Monday I got another letter from the Massachusetts Executive Office of Public Safety and Security. M was back in temporary custody “due to a possible violation of the conditions of parole.” I’m guessing that he must have sabotaged himself. Think of all that has changed in the past three decades. How would any of us be able to adjust to the outside world after spending all that time in the structured, restricted, but in-its-own-way-predictable prison system?

In some ways, I measure my life against M’s. Since he’s been behind bars, I’ve lived with my own sentence of scleroderma, which emerged a few years before the robbery. But I’ve been fortunate—with excellent medical care, a supportive family and a lot of luck, I’m living a fairly healthy life, all things considered. I’ve raised two daughters, built a successful career, pushed the envelope on discovering what I can still do despite medical constraints.

M remains mired in a dismal life. Some of that is surely his own doing. I wonder, however, what real support he’s had in trying to turn himself around. I think he was about my age when he went to prison. He’d be in his 60s now.

I don’t have an easy conclusion for this one. It would be too facile to say that we each make choices in how we meet life’s challenges. I know nothing of M, other than the occasional progress reports (or lack thereof) that we receive in the mail. We never saw him at the courthouse all those years ago. Suffice it to say that incarceration is as much a state of mind as a prison is a fortress of cement and stone and barbed wire.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Image Credit: Christian Bardenhorst