Hearing

Storm Tracking

Evelyn Herwitz · March 14, 2017 · Leave a Comment

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

Evelyn Herwitz · March 7, 2017 · 2 Comments

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.

Image Credit: Motion Studios

Parallel Universe

Evelyn Herwitz · February 14, 2017 · Leave a Comment

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.

Image Credit: Christian Bardenhorst

In 3-2-1

Evelyn Herwitz · February 7, 2017 · 2 Comments

I stay up way too late most nights watching late night comedians. Since we live on the East Coast, this means I’m getting to bed around midnight. My evening routine is prolonged by tending to all the bandages on my fingers—up to six ulcers at present, plus one on my left ankle—so my excuse is that the shows keep me company while I’m taking care of my hands. But in all honesty, I rely on satire to keep my sanity.

My favorite is Stephen Colbert. Al’s, too. So when Al suggested that we mark our anniversary this year by a trip to NYC to see a live taping of The Late Show, I readily agreed. We were married in December 32 years ago, but due to scheduling conflicts, our first opportunity to go was last week.

And go, we did. We decided to make a mini vacation of it, booking a four star hotel on Park Avenue at a January discount, scoring half-price tickets to a Sunday afternoon off-Broadway show, enjoying great food and wonderful art museums on Monday and Tuesday. But the highlight of the trip was our pilgrimage to the Ed Sullivan Theatre for Colbert on Monday afternoon.

Now, as children of the ’60s, it was exciting enough to be at the very spot where the Beatles made their American debut. The theatre features architectural filagree that gives it a period flare. It’s located on Broadway between West 53rd and 54th Streets–the latter also designated as Señor Wences Way, a throwback to that wonderful, corny feature act on the Ed Sullivan Show that we loved as kids.

But it was also fun just to be with other Colbert fans as we waited outside, joking and speculating about the program as we stamped our feet and huddled against the cold. The priority ticket line formed at 3:00 p.m. We arrived shortly after and quickly made our way through the check-in, staffed by friendly red-jacketed twenty-somethings armed with iPads and headphones, who made occasional announcements about what to do and where to go. A nice couple offered to take our picture in front of the marquee, and we returned the favor.

By 3:45, rehearsal was over and we were finally allowed to enter the warm theatre lobby. More waiting and waiting in a long, snaking line beneath large TV monitors playing excerpts from previous shows, though the sound was muted. From time to time, one of the staff would fill us in on next steps and rules: turn off all cell phones, no food allowed in the studio theatre, and—around 4:30—now’s the time to use the bathroom, because once you’re seated, there are no bathroom breaks.

Wait, what? I’d figured that, if I had to go, I’d be able to do so during a commercial. But, no, only if it was an emergency—and no guarantee you could be reseated. Now, this was potentially a major issue for me. I can no longer go long stretches without a trip to the bathroom. My bladder just doesn’t empty efficiently. So I joined a line of other women, waiting for a stall in the Ladies’ Room, and hoped I could squeeze out the last drop. Fortunately, we’d eaten lunch about two hours earlier, and I hadn’t had much to drink.

Back in line, I distracted myself by chatting with some of our neighbors, flexing my ankles and feeling grateful that I was wearing compression knee socks, so that my feet wouldn’t swell from all the standing around. Finally, shortly after 5:00, it was time to be seated. The red jackets were very experienced at crowd control, and we efficiently filed into the main floor. Lo and behold, the center section was full, so Al and I found ourselves guided toward the third row of the right-hand section, directly in front of Jon Batiste’s Steinway concert grand piano. Al was in heaven.

Here we were, with a great view of the Late Show set, so familiar from our TV at home. We gawked and chatted with our seat mates (mine was a Lutheran pastor from Saskatchewan, here with friends for her first visit to NYC), listened to more instructions about our role as audience (enthusiasm and energy are essential for the performers as well as the 2.5 million folks watching later tonight), practiced standing and cheering, warmed up to the warm-up comic, clapped and bopped to the outstanding jazz of Jon Batiste and Stay Human, and then, finally, screamed our heads off, just like those Beatles fans fifty years ago, when Stephen Colbert ran out on stage to greet us.

He was genuinely warm in person, very down-to-earth, as he fielded a few questions from the audience with his quick, dry wit. Then it was time for the taping to begin. We could watch the cold open on the video monitors, then Colbert ran out on stage again, this time as part of the show. The boom camera swept the audience, and we were off to the races.

Time zipped by. There was a surreal quality to the experience, watching Colbert perform for the four cameras that surrounded him in his opening monologue, even as he fed off our energy. There was a pause for him to switch from his suit jacket to a Dad sweater for a skit with guest Leslie Mann, another pause because one of the lights wasn’t working properly, casting a shadow on the couch where they were to sit. “The Russians must have hacked our set,” he quipped.

The band played on during commercial breaks (how I wish that were the case when you watch on television–they are such amazing talents). Lewis Black and Dan Levy rounded out the program. We stood and cheered on cue (when the stage manager waved his rolled-up script in the air). Colbert’s wife made a surprise appearance to roars of approval.

And then it was over. I’d been so absorbed, I’d forgotten all about any bathroom jitters. Al and I looked at each other. We didn’t want it to end. Despite the cold, we walked all the way from Times Square back to a little Italian restaurant near our hotel, where we enjoyed a fine dinner and live piano music. Later, we watched the show again in our hotel room, to see how it was edited and, of course, to see if we made it onto the tape. And there we stood, cheering in the crowd after one of the early commercial breaks! I finished bandaging my fingers, and we went soundly to sleep.

All in all, it was a wonderful anniversary celebration—a great break, a much-needed chance to recharge, a gift of resilience. And, oh, did I mention? The Colbert tickets were free.

Oasis

Evelyn Herwitz · January 31, 2017 · 2 Comments

I’m finding it difficult to write about anything other than the chaos in the world, in our country, in my heart. So what I’m sharing today may seem odd. But we chose to immerse ourselves in art and floral arrangements at the Worcester Art Museum’s annual Flora in Winter exhibit this weekend. I’m grateful that I have the opportunity to do so. It is, indeed, a privilege.

Inspiration, courage, solutions, just finding the next step can become clearer when you give yourself the chance to find beauty in the world. I share these with you, Dear Reader, in hopes that you will find inspiration, too.

Hearing

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