Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

A Matter of Trust

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For all the times I sit down at my computer with only an inkling of what this week’s post will be about, the universe always seems to hand me a story. Here’s what happened Monday morning . . .

Back in early April, I applied for my Social Security retirement benefits. I was to reach full retirement age at 66 a few weeks later, so it was high time to file. With the pandemic crashing life as we know it, I assumed it would take extra time for my claim to process, so I waited. And waited. And waited.

Around the end of April, I received two emails, sent within seconds of each other in the wee hours of the morning, informing me that there was a question about my claim. According to one of the emails, I had worked in a town called Reading and had a pension while employed there. The other didn’t mention the town, just the issue of a pension, which called my benefits into question. Both referred me to a Mr. Moore at the Social Security Administration and told me to call. Each email gave a different deadline in May, by which time I needed to respond or my benefits would be reduced.

I was immediately suspicious, not only because of the conflicting deadlines, but also because (a) I never worked in or for the town of Reading, Massachusetts, and (b) there are a lot of other towns named Reading across the country—and the state was not specified. My concern was amplified by the fact that the emails were “signed” as “Social Security Administration” (not by the mysterious Mr. Moore) using a typeface called Brush Script, which is a very dated style popular in 1950s advertisements. What government agency would use that typeface as its signature in an official email?

So, I did what any Internet savvy consumer would do, and I googled the phone number that I was supposed to use to contact Mr. Moore. Sure enough, there were a slew of reports that this number was a scam. There were other reports that it was legit. I checked the SSA website and found notices of many scams currently active, including some associated with COVID-19. I decided this was probably a way for the scammer to try to get my phone number, so I trashed the emails and wrote a complaint to the SSA Inspector General’s Office.

Meanwhile, my benefits application was still pending in my SSA online account. I planned to call this week to find out what was going on. Then Al brought in the mail on Monday. “Here may be the answer to your question about your benefits,” he said, handing me an official-looking envelope from the SSA. I opened it and was dismayed to find a hard copy of the exact same Mr. Moore letter, with the same Brush Script signature, a vague reference to a pension issue, and a new deadline of June 13. As had the previous emails, it included numbers for our local SSA office and the national office, too.

Not trusting anything, I looked up our local office online. The numbers matched. I called, and to my astonishment, was connected to a real human being within minutes. And, she confirmed that Mr. Moore was, indeed, real, there was a question about a pension from work in Reading, Mass., and I really needed to get in touch with him or my claim would be closed. I was so confused that I was beginning to wonder if this woman really worked for the SSA, whether I had somehow earned a pension in the past, and if I was at risk of giving up confidential information during the call.

But she was quite patient and even tried to connect me to Mr. Moore directly. As it turned out, he had picked up another call while I was on hold, so she said to call the number I’d previously assumed was suspect. I left a message for him and went down to our basement file cabinet to find the only information I could imagine had anything to do with this, my severance arrangement when I was laid off 10 years ago. I had paid into a retirement plan, but received the balance when my job ended and reinvested it.

Soon enough, Mr. Moore called back. He turned out to be a most pleasant guy, quite calm and understanding. The mistake had been his, to use the wrong town instead of my former employer, but only because they have been swamped since the pandemic struck and he’s been struggling to push out all the paperwork for many, many benefit claims. He took a closer look at my case and realized that the type of retirement plan I’d paid into was not an issue, immediately approved my claim, took care of tax withholding, told me what amount to expect, and said there was a good chance I’d get my first check by week’s end.

When I told him about the scam information I’d found online, he was quite familiar with it and said that there had been many attempts by Russian hackers to get into their system (none successful—sure hope he’s right), and that the phone number I’d found suspicious but had now used to reach him has sometimes even come up in Google searches as a Russian business. More evidence of trying to throw us into confusion and mistrust of government institutions. I thanked him for his help and wished him well. (I did not mention the typeface.) After I hung up, I checked my online account and saw that, indeed, my benefits had been approved.

We live in a time of deep distrust. So much that we’ve relied on to anchor our lives is now uncertain. The Internet is rife with 21st century snake oil peddlers, thieves, and propagandists. Conspiracy theories are tearing our country apart.

It’s essential to be vigilant. It’s also essential to do all your homework. I could have called the national SSA number right away, or our local office, verified or reported the emails I received, and resolved all of this much sooner.

Several weeks ago, I seriously considered writing a blog post about what I thought was a scam, as a warning. Today my message is different. Today my hope, Dear Reader, is that you will not let cynicism and skepticism keep you from getting the information and help you truly need. Let due diligence, not fear and suspicion, be your guide. Now, more than ever.

Be well.

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. Please view Privacy Policy here.

Image: Jamie Street

As the Rain Approaches

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The wind is blowing outside as I write on Monday afternoon. Yew boughs bounce and bend. A slight chill seeps through the floor of my converted-porch office. Beyond bay windows and walls, rushing air ebbs and flows with a whoosh and sigh, whoosh and sigh, like the sea, like a giant’s lungs.

The Earth breathes. I breathe. Every morning when I awake, I say a prayer of thanks that my lungs fill with ease. Each breath feels delicious, comforting, the most basic reassurance that I am alive and still healthy while mired in pandemic time. I meditate and follow my breath and observe how each inhalation and exhalation is so different and unique to that precise moment while at the same time so unremarkable as to be forgotten in the next.

Yews boughs bend and bounce. I watch for a cardinal or blue jay to brighten the branches that have turned gray-green in the pearly light of approaching rain. But they are wise to the weather, tucked into their nests or other hiding places to ride out the storm. Somewhere nearby, I can hear a bird singing, but don’t know enough to recognize the vocalist.

No bird answers. A car sweeps past. A siren wails in the distance. My ears ring with decades-old tinnitus that I usually ignore. It is a constant internal concert of rushing, high-pitched tintinnabulation on the right, countered by a deep, soft lowing on the left. It becomes more insistent in stillness, an irritant that I normally brush away with music or conversation or concentration.

On this pearl-gray afternoon, however, I don’t mind its reminder—that I am still here, sitting at my desk, pondering the next phrase, as the wind rushes outside, and the birds find refuge, and the rain approaches.

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. Please view Privacy Policy here.

Image: Mahkeo

Are We There, Yet?

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Yesterday I wrote to our Air BnB host that we were cancelling our June weekend trip to Block Island. I’d been looking forward to this family get-together for months at the perfect summer home in a remote part of our favorite place off the Rhode Island coast. But the state requires 14-day self-quarantine for travelers from out-of-state, the virus is still surging here in Massachusetts, and I cannot imagine that, even if restrictions are lifted in a month, it will really be safe to go there on the ferry.

Call me risk averse. I consider it an asset, these days. So far, as I write, I’m very grateful that our family remains healthy and safe in our respective homes. Others in our friendship circle are not so fortunate, which is both deeply concerning for their well-being and scary. I feel the virus encroaching and a need to be ever more vigilant.

Confinement, so necessary, is taking its toll. Some days it doesn’t bother me, and others, it feels like a blue funk that I can’t shake. Obviously, this is nothing compared to the terrible struggles others are facing, fighting the virus itself and the economic hardship it has wrought. But the feeling is still real, and, as Brené Brown points out in this episode of her thoughtful “Unlocking Us” podcast, denying your feelings because others are suffering more doesn’t really help anyone. Our capacity for empathy and supporting others is intricately linked to our capacity for self-care. So, I’m trying to give myself some space to feel what I’m feeling, without getting sucked into a black hole.

Connecting with family and friends certainly helps, but I am hitting my limit with Zoom get-togethers. I find them exhausting when there are a lot of people involved.  “Zoom fatigue” or “Zoom burnout” is real, a phenomenon triggered by the inability to read non-verbal cues on a video chat, as well as the need to be “on” for the whole call. I have used Zoom for years for business, and it’s a great tool that makes me feel closer to my clients. It saved our Passover seder and has enabled us to catch up with family long-distance. But I’m finding that I need to pace online group get-togethers so I don’t feel so drained. One-on-one is easier, and not an issue.

Getting outside whenever the weather is good is essential for me. We had another gorgeous weekend, and Al and I took advantage with another hike, this time to Purgatory Chasm State Reservation not far from home, so named because of its huge, tumbled boulders and rocky trails. I found the going tougher, and there were more hikers, so it was less relaxing. But it was still good to get out in the woods again (albeit necessary, now, to start checking for deer ticks).

Making stuff helps, too. I sewed three more masks on Sunday out of tea towels. Cleaning the house is a meditation, making order out of chaos. Keeping up with my German homework taps a completely different part of my brain and gives me a sense of accomplishment as I learn and remember more.

Most of all, however, what’s keeping me sane is writing. I finished the third draft of my novel last week (more rounds to go, but a milestone, nonetheless), and started a new short story. The act of writing completely transports me to a mental space where time dissolves, I’m  absorbed in my imagination and words, and I can call all the shots.

Real life is not so accommodating. “We’re all in this together” is beginning to wear thin, but is all the more true. I’m trying to do my part, even as I yearn for normal, whatever that will mean when we are truly able to resume work and socializing in person. And so I sit here and write to you, Dear Reader, and hope that you have found relief from your own cabin fever that is fulfilling, safe, and considerate of all those around you. We have a very long way to go and need all the resilience we can muster to get there.

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. Please view Privacy Policy here.

Image: Ryan McGuire

Into the Woods

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Last weekend, I was starting to go stir-crazy. I hadn’t been outside more than twice during the week to walk around the neighborhood, thanks to chilly rain, and, given the coronavirus surge in our region, I did not run any errands. So when the sun finally emerged and the temperature hit 60, we drove to a nature preserve about a half-hour south of home.

On the way, we passed electronic highways signs urging out-of-state visitors to Massachusetts to self-quarantine for 14 days. Necessary warning, but it made my heart heavy. Traffic was moderate, and the small parking lot for the preserve, Cormier Woods, was almost full. With no one nearby, yet, we looped our face masks around our ears and tucked the fabric under our chins.

As soon as we headed down the first trail, I began to relax. Just getting out in fresh air, in a sylvan setting, was a relief. Nature, which has brought us the deadly coronavirus (with all too much help from humans), also now brings life’s rebirth here in the Northern Hemisphere. Each emerald sprout, each hopeful pine sapling pushing through fallen leaves, reaching for light, promised that life still flourishes.

When other hikers passed us by, we all performed the new greeting ritual—pull up the mask over your nose and mouth, step to the side about six feet, and wish each other well. Everyone seemed in good spirits, and it was nice to see others in the flesh, rather than via computer pixels.

Here is a sampling of that lovely afternoon. I hope, Dear Reader, that you, too, are able to find some safe relief in whatever way Nature provides for you.

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. Please view Privacy Policy here.

66

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Celebrating my birthday this past weekend, in the midst of a pandemic, was different, to say the least. Not only were we stuck at home, but also it snowed. In April. I cannot recall this ever happening. Cold, yes. Snow, no.

So, I said to Al, “Let’s build a snowman!” He was surprised, because I never suggest anything that could make my hands cold, but he was also an enthusiastic participant.

When I was a kid, I loved making snowmen. I would stay outside in our front yard, rolling each ball of snow, arranging and decorating, until I was frozen myself. Back then, I didn’t care. I have a dim memory of doing this late one afternoon, the snow tinted blue as darkness fell, mittened fingers totally numb, but still feeling joyful in the act of creating.

Of course, the snow has to be just the right consistency for construction purposes, and we were in luck. Big, fat, pasty flakes had fallen all morning, a few inches worth, the kind of wet snow that gloms together into heavy blobs when you scoop up a handful. We headed out the front door and got to work.

With a shovel, Al created a mound for the base. We slapped on more snow globs to round it out a bit, and then I rolled two very heavy balls for the middle and head (needed Al’s help to stack them). We added stones for eyes and buttons. I found a couple of twigs from a fallen tree branch (very windy last week) for arms. Al added what was left of our horseradish from Passover for a nose, and contributed an old baseball cap. Together, we secured the finishing touch—a green bandana for a face mask. And so, in about twenty minutes, “Covie” was complete.

As we worked, a few neighbors walked by with their dog and voiced their approval. I took Covie’s portrait on my phone and headed inside. My mittens were soaked, just like that day long ago, and my fingers icy, but it was worth it.

Other birthday activities included reading a novel, listening to an inspiring podcast, enjoying birthday greetings from friends and family, catching up with my sister on the phone. In the afternoon, we had a Zoom party with my daughters, complete with a cake baked by Al, and an online card game that kept us laughing for a couple of hours. In the evening, we marked the occasion by making contributions to a variety of non-profits that are helping during the pandemic. This felt good. We capped off the day watching a movie online.

Throughout, I was in an upbeat mood. (This was helped by not reading any news.) For a cooped-up birthday during the scariest experience of my 66 years, it was lovely, memorable, and a good lesson in how much each moment is shaped by how we decide to approach it.

Now, if only the pandemic could end as quickly as Covie melted . . .

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. Please view Privacy Policy here.

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