RIP memorial demitasse, or the perils of living with autoimmune arthritis

Assessments used to measure the progression of autoimmune disease—like the one I live with—often include questions about how symptoms interfere with daily life. When arthritis afflicts the small joints of the hands, sufferers like myself experience the perils of managing common fragile objects.Starbucks wish you were here ornament demitasse - 3

Case in point: the demise of a demitasse cup I used every day.

This cup was a gift from my mother who passed away in 2019. Today, I fumbled it while loading the dishwasher. It cracked when it hit the counter, one corner crumbling to bits, then continued on to finish shattering against the tile floor.

R.I.P. Starbucks “You Are Here: Oregon” demitasse cup!

Starbucks wish you were here ornament demitasse - 1

My favorite vessel for my daily shot of espresso joy is hardly the first victim of my less-than-nimble MCP and PIP joints.

There’s a particular glass pitcher I use to refill my beloved Zojirushi countertop hot water boiler.

Because my hand slipped perfectly between the pitcher’s handle and body when my joints weren’t swollen, it was my yardstick for physical manifestations of arthritic flares. Swollen, the knuckles—where the base of my fingers meet my hand, or, less often, even the middle joints of my fingers—were too thick to slide into that same space. It made me feel less crazy to have confirmation that my symptoms were real,* physical, and not “all in my head.”

One clumsy morning, I bashed the handle off the pitcher as I maneuvered it between faucet and kettle. Somehow, I managed to rap the fragile handle against the edge of the counter as I lifted it out of the sink.

The result is a far less useful, slightly sharp nub on an otherwise pretty jug:Patterned clear glass water pitcher with top stub only of broken off handle

It was such a lovely pitcher, I still use it—though with even more care—for the same task. The vessel just can’t serve its secondary medical alert function anymore. Also, it is rather trickier to keep a hold of, so I tend not to fill it full to keep the weight manageable.

In the grand scheme of things, these are trivial losses. My hope in sharing this story of small failures is to illuminate—for those fortunate enough to enjoy fully able bodies—another of the small daily battles waged by someone living with even minor infirmities.

They take a toll. They have a cost.

Living in a world designed and built to be adequate to your needs—which is the happy reality healthy people inhabit—is extraordinarily convenient, yet easy to overlook until some change in one’s own status lays bare every discrepancy.

* For many patients with conditions that can’t be definitively diagnosed by simple tests like blood work—especially when the complainant is a woman or a person of color—it is common to feel, if not to be, dismissed as a mental patient instead of acknowledged as the unlucky sufferer of a valid physical ailment. A recent BBC story describes how even physicians with disabilities are greeted with suspicion by the medical establishment.

Phone a friend, if only to confess “I have no energy to talk”

An article* in the newspaper prompted me to reach out to a friend yesterday. It reminded me that we are all hopefully not sick but tired of the pandemic, and that perhaps our loved ones with small children are even more drained and hungry for a moment of adult contact.

It’s okay to reach out—a great idea, actually—even if your message is merely a confession that you’re too exhausted for a big, meaningful talk. What really matters is letting people know that you care. A text, a ping, a postcard: any of these is a whole lot better than nothing at all.

The article reminded me that my low energy might still be higher than someone else’s emotional charge.

Contact phoneLike many others, I’ve found the pandemic to be paradoxically physically isolating, yet discouraging to my tendency to reach out in other ways, even electronically. I may be the only person in America who has yet to join a Zoom meeting.

Perhaps because I’m an introvert, I’ve realized that stress tends to shut me up.

Though I never lack for opinions or the desire to share them, my mother’s death in 2019 made it very hard for me to post to Really Wonderful Things for a period of months. Similarly, while I think of many friends, often many times per day, the oppressive weight of living in a COVID-19 limited world often keeps me from calling or texting or even answering my phone when it rings with a call from someone I really miss.

I have no doubt that surviving a pandemic induces grief. As one bereaved just a year earlier, the parallels are plain to me.

Chatting with my friend—okay, it was texting—was a nice break from my current reality. She was the last person I saw socially before everyone sequestered at home. I met her still tiny baby that 2020 day over coffee at a shop near her house. NZ espresso Wildlife Refuge cafe

Already aware there was a mysterious virus swirling about the Earth, I didn’t ask to hold her little bundle of joy, but I did briefly get my freshly washed hands on one irresistible, itty bitty foot. Consider it the elbow bump version of appreciating a newborn as a pandemic loomed.

About a year has gone by since then. My friend’s baby is now a toddler with hair long enough to style in an up-do for a windy walk around a reservoir. I got to see a picture. I noted how the wee one’s hair favors the younger of her big brothers; my friend pointed out that her face is more like the elder sibling’s was in early childhood. Her eldest was about the age her baby is now when she and I first met!Woman hugs child

While joyful, the conversation was also full of pining for a return to our old kind of visits. I want hug her youngest urchin for the first time. She wishes she could help me fix what I’ve done to my poor sewing machine. We both miss those hours, here or there, that we used to steal for a cup of something and a chat while our kids were at school.

No wonder it’s so hard to catch up in the virtual realm. The act is such a stark reminder of all the real visiting that’s missing!

But we wandered, too, through the tentative plans our respective families are finally feeling free enough to make for the future. They’re thinking of moving for more yard space, or perhaps she’ll take a community garden plot to get her hands into the soil. I’m expecting that—come Hell or high water—I will find a way to get cross-country to see my father this summer. Both of us have begun pondering passports and international travel, but neither of us wants to board a long flight any time soon.

Her husband has always wanted to show their kids Niagara Falls; my family hopes to do a round trip cruise from Canada that circumnavigates Iceland from a port within driving distance in 2022.

It’s a bit like ordering seeds in January. It’s a lot like those longer, brighter New England days in early March when you can feel that spring really is a-comin’… while also remaining fully aware it would be unwise to put away the snow shovel just yet.purple and gold flowers blooming in Hafnarfjörður, Iceland

Reaching out and making contact—in even the tiniest way—plants another tiny grain of hope that we may all soon put this period of illness and extreme loneliness behind us. So phone a friend; nurture a bloom of camaraderie. They’ll understand if the best you’ve got to offer is, “I miss you, but I have no energy to talk.”

* “The parenting crisis without a vaccine: loneliness” by Boston Globe Correspondent Kara Baskin

Cheer a grumpy Christmas by stacking tiny bricks of gratitude

2020 hasn’t been a normal year. This won’t be an average Christmas.

Xmas tree - 1Many of us are heeding public health advice and avoiding travel. Some of us are still grieving lost loved ones whose presence defined* special holidays. Ignoring these very real sources of pain is neither healthy, nor possible in the long term.

But does acknowledging the bumps in life’s road mean choosing between being a humbug or a Grinch? I hope to prove otherwise.

I’m afraid I’m having a Very Grumpy Christmas. While I wish for better for every reader, I suspect my miseries enjoy plenty of company.

When I’m in this kind of snit—so easily degenerating into a full on funk—about the only remedy is the doing of good or the counting of blessings.

As I took advantage of an un-rushed school vacation week morning today by staying in bed for an extra hour with my book, I was grateful for not yet having reached the end of the last series of novels my mother will ever recommend to me.

She bugged me for months to pick up the first one. Why did I resist until after she was gone? I wish with every page that I could tell her how much I’m enjoying them…

Comforting myself with this small thing for which I could give thanks, I realized each little blessing is a brick. If I stack up enough of them, I’ll have built a sizable structure. One brick won’t do a person much good against an invading army, but enough humble chunks of masonry suffice for The Great Wall of China.

Thanksgiving give thanks - 1So perhaps I’m not playing so well with others, today. I’m hardly a Sugar Plum Fairy. I’ll be a builder, though, of my own Great Wall of Gratitude.

I think it will hold.

QC city walls

Here are a few more trivialities I’ve found to be thankful for today:

  • My husband went back to the too busy, too crowded day-before-holiday bakery when they forgot to include my favorite cinnamon buns in the pre-packed bag he went out for at dawn.
  • My teenager told me he loves me… without me prompting him by saying it first.
  • My younger one never hesitates to show me affection, not even when his friends can see him doing it.
  • My kids can collaborate on a project and produce something great without adult supervision.
  • My pantry is full; I’m not afraid for how I will feed my family.

Readers, please feel free to share in the comments what you can find to be grateful for this topsy-turvy holiday season. Your smallest joy would be a Really Wonderful gift to me.

* I can’t look at a Christmas decoration without being reminded of my mother, who died of cancer in 2019. On the other hand, to ignore her favorite holiday would be the most disrespectful possible thing as far as honoring her memory goes.

Today’s post is brought to you in memory of Mother Christmas.

Mom decorates Christmas tree with ornament

That would be the Chief Inspector Gamache series by Louise Penny. Find them listed in order here; I’ve made it to book 13, Glass Houses. You definitely do want to read these in chronological order if you opt to give them a try. They’re decorous enough for readers of cozy mysteries (Mom), but complex enough for those of us who like to pretend we’re exercising our minds with our choice of literature.

Be warned, however: If you get into these mid-pandemic, you’ll be cross that you can’t make a visit to Quebec, which Penny paints as paradise… if you can get past the political intrigues and frequent murders!

Mail a greeting card in 2020 to uplift lonely holidays

Even if you don’t usually send Christmas cards or other holiday greetings, this year might deserve to be an exception. So many people are lonely and missing far-flung families due to the pandemic; getting a hand-written note in the mail may be the most human connection in a person’s day. That is well worth 55 ¢ in postage and a few minutes of your time.

greeting cards on desk blotter with pen and stampsI send cards sometimes; other years, I don’t get around to it.

I have written Hanukkah greetings, Christmas cards, acknowledgements of the Winter Solstice, and best wishes for happy New Years. I send the message I think the recipient would most appreciate; my religion* in no way dictates the blessing I offer a friend of a different persuasion.

My family hung the same red felt banners on the entry hall wall every year of my life. They went up early in December, empty canvasses, ready to receive holiday missives as they arrived. The oldest was made by my mother’s mother and features pockets and a waving Santa at the top; Mom had to craft another when I was little to accommodate the deluge of communiques that her sociability and dedication to friendship and public service inspired. Cards were pinned or stapled to that display.

In 2019, my mother died.

Somehow, that year also saw a huge reduction in the number of Christmas cards my widowed father received. In years past, every inch of these many yards of felt was hidden by the volume of cards and letters; last year, only one banner ended up even partially covered.

Torn black felt heart pinned to garment to signify grief and k'riah

I don’t believe that people were intentionally ignoring my dad in the absence of Mom, though her enthusiasm** for Christmas did put that of other, mere mortals to shame. I received fewer cards last year, too. The dentist and the auto body shop we used only once historically sent pre-printed cards, untouched by even a secretary’s hand. A lot of that has stopped. I suppose it’s a sign of the growing reliance on electronic communication, and I don’t miss impersonal mailings from businesses too much.

Dad’s passing comment about getting so few cards, however, was like a punch in the gut to me. It was already such a hard year for him; I grieved again to see him feeling forgotten. What a dreadful time for the world to decide to save a tree and skip a mailed paper greeting!

I’m going to be sending at least a few cards this year, myself. I’m prioritizing older relatives, and those who live alone. Even if you never send cards, hate to write, or don’t celebrate any of the winter holidays, this may be a year to reach out in the spirit of warmth, light, and joy—just because.

There’s no real deadline, either, in case you’re worried about the already overburdened postal system. Send Warm Winter Wishes in January, if that feels more appropriate. After the happiest of holidays, that month can be a real let-down. After a grim, lonely season you believe should have been festive? January could be gruesome.

Our shared humanity is reason enough. Care for others is the animating gift of all societies. Winter is dark and feels too long in the good years; 2020 has not been a particularly good year for most. Pandemic winter is an enemy to us all, but a terrorizing monster to the isolated and the lonely.

Reach out, if you’ve got a few minutes, an envelope, a stamp. You’ll be making the world just that little bit better for someone else. I’m willing to bet it will brighten your day, too.

I might even argue that the very definition of faith makes the fear of someone else’s difference a rather fundamental failing of it…

** Mom liked to say that Christmas was the reason the rest of the year exists. She called herself Mother Christmas, and Dad had a song commissioned for her about that by a talented musician friend. My parents’ over-the-top outdoor decorations were so spectacular, their house was featured in a television public service announcement in the 1990’s. Mom had a unique holiday outfit for every day between Thanksgiving and Epiphany, reckoning the arrival of the Wise Men was the true end of the Christmas season.

I wouldn’t turn back the clock to more paper spam either. This is not an argument that we return to physical documents for conducting most business.

That said, I do notice, enjoy, and appreciate the personalized greetings sent by some institutions, such as my son’s school and my former personal trainer who takes the time to hand write all of his cards.

Wish You Were Here in a You Are Here demitasse

Starbucks packaging describes this little demitasse cup as an ornament, but it is food- and dishwasher- safe in addition to being tiny and adorable. Starbucks wish you were here ornament demitasse - 1

Part of the You Are Here collection, the box is dated 2016. It was a gift from my mom a few years ago, from one of her last Christmases.

Mom died in July 2019.

Being something of a sentimentalist, a pack rat, and terrible at imposing order on objects in general, I’d stuck the Starbucks ornament in the back of a kitchen cupboard that includes coffee stuff I use only for parties.

Unlike my mother, I never developed a proper holiday stashing system, nor do I tend to decorate seasonally. Unless we consider the accumulation of Amazon shipping boxes on the landing before a gift-giving holiday a form of décor?

For my autumnal birthday this year, my dear husband finally gave in to enabling my caffeine addiction and bought me an espresso machine of my very own. Due to the pandemic, I hadn’t enjoyed my favorite beverage since March 12.

Starbucks wish you were here ornament demitasse - 3That’s more than six months without tasting espresso!

A week or two later, I happened upon my You Are Here Oregon demitasse while putting away my thermal cooker. Since then, I’ve enjoyed my daily espresso or two—okay, yes, now that the machine is in my home, I’m drinking three single shots per day!—from Mom’s gift.

A year and a third since her death, that only brings me to tears once or twice a week.

Starbucks wish you were here ornament demitasse - 4Mom loved Starbucks, though my own espresso preferences are a bit more locally roasted and single origin.

Mom knew how much I miss the state of my birth, and the part of the United States that I still, deep down, consider Home.

Mom would’ve noticed this cup boasts lots of my favorite color.

Of course, to Mom, it was an ornament. To me, it’s a cup. We saw a lot of things differently, but, luckily, mostly we saw eye to eye on the things that really matter.

I can’t bring myself to recycle the little box where Mom hastily scratched through the price tag. She gave so many gifts, just wrapping them was a herculean task. She had to work fast to get it all done. Mom was a perky little dynamo. A half-obscured price tag feels like another spider silk thread from the ghost of her hand to mine when I hold it.

The collection is called You Are Here, but, for me, it’s a Wish You Were Here cup.