Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

COVID-19

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

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.

Mask-maker, Mask-maker, Make Me a Mask

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More than half-way through Passover now, I’m finding the holiday’s food and kitchen restrictions (no leavening, separate dishes and utensils) a fitting metaphor for our new reality. That, and the spread of matzah crumbs throughout our home. I’m also finding the rituals and rules about what and how to cook strangely comforting. Having our mini Seder last Wednesday night via Zoom with two dozen family and friends from across the country was wonderfully uplifting. Sticking with our Passover observance feels like an act of defiance in the face of this pandemic, that it can’t uproot everything we hold dear.

But there is still a lot to contend with, of course. Here in Massachusetts, we are being told to wear fabric face masks when going anywhere that makes physical distancing difficult, like grocery shopping. So, on Sunday, I pulled out my trusty 35-year-old Viking sewing machine and experimented with making masks out of old pillow cases.

I still love sewing, but it has become much more challenging since I had my hand surgery several years ago. Tweezers are an essential tool for threading the needle. I have to constantly be mindful not to reach quickly as I adjust the sewing foot, thread the bobbin or change stitch settings, or I’ll mash what’s left of my fingertips on metal. Then there’s the nuisance of cut threads sticking to my bandages.

Nevertheless, I persisted, using a pattern I’d found online, one magenta-and-pink and one cobalt-blue pillow case, and a few pieces of quarter-inch elastic from my five-decades-old sewing stash. I cut out enough fabric for several masks, but only finished two—in part, because I skillfully managed to sew the second one together wrong side out and had to pull all the stitches, a real challenge for my hands. I made an opening in the back for an insert. From what I’ve read online, coffee filters are considered one of the best options.

Along the way, I discovered a couple of mistakes in the directions. The biggest issue is how long to make the elastic loops to go over ears. The pattern said seven inches, which seems to be standard advice, but that’s way too big for my narrow face. So, a word to the wise: If you decide to sew your own mask, plan on the first one being a prototype that needs adjusting.

Here is a good article from The New York Times that includes everything you need to knows about wearing and making your own mask.

I hope, Dear Reader, that whatever your circumstance, whatever holiday you may have been celebrating or will be, soon, that you are staying safe and well. And if you can’t sew, here’s how to make a mask from a teeshirt that requires no stitching.

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.

Order Out of Chaos

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As the pandemic surge approaches, we have been preparing for Passover—a deep and bitter irony, given the role that the Ten Plagues play in the Exodus story, the Seder’s focal point. Over the weekend, I wrote a condensed version of the Passover narrative that we’ll share with family and friends across the country Wednesday night via Zoom, in place of our traditional festive gathering. Certainly not the same as being together, but making the best of the situation.

And so, we’ve been cleaning the house, Al and I. We had to pause our biweekly cleaning service, given the risks of sharing unwanted germs, and sent them a check to help tide them over. Al’s done the heavy work, and I’m in charge of dusting. So long as I’m very careful and wear cotton gloves, I can avoid damaging my fingers. But I’m slow, as a result, and we have a lot of tchatchkies.

Still, there is something about revisiting all those little statues and knickknacks, remembering where we got them and when, and arranging them exactly as I want. The house looks clean and orderly, more so than usual, because we’re the ones doing the work and paying attention to dust hiding in nooks and crannies. We finally put away all the books that had been cluttering the living room coffee table, leaving a manageable stack to be read. I shipped a box full of electronic cords, cables, CDs, and DVDs to a recycling center in Washington State that was still taking donations.

It feels good to get ready for the holiday, not the usual dreaded chore. Life is so strange right now, seemingly normal in some ways and totally upside down in others. Cleaning and organizing our home is one way to regain at least some sense of control, and keeping our religious traditions means that COVID-19 is not in charge of what we do. It’s also a wonderful way to connect with those we love, even if we can’t see them in person this year.

All this is all the more important as the number of cases here in Massachusetts increases exponentially. Our city is well prepared, and the Commonwealth is undertaking a first-in-the-nation initiative with the global NGO Partners in Health to track contacts of people who test positive for COVID-19, in an effort to detect infection hot spots and contain the virus. I find this reassuring.

And yet. A couple of weeks ago, when I took my walk around the neighborhood, I overheard folks chatting about someone who knew someone who got the virus when their kid came home from Spain. A few days later, I passed by a group discussing personal experience with having had it and gotten over it (fortunately for the couple, it sounded as if they’d had a mild case). Yesterday, on my walk, for the first time I saw an ambulance outside someone’s house. I haven’t heard sirens in the neighborhood, but I know that’s inevitable.

The weather as I write is sunny and mild. Forsythias are blooming, leaves on the trees are just barely visible, and miniature daffodils brighten our rock garden with a splash of gold. Pandemic or not, spring is here. For that, for every morning that I awake with an easy, deep breath and know my family and friends are well, I am grateful. I hope you are safe and well, too.

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.