Only after my son’s muscular dystrophy diagnosis did I come to find out that Rare Disease Day is a thing.
Which I guess is the point, right? Rare means these many diseases are so low in prevalence, receiving so little press that they don’t get their own day or ribbon color or rubber bracelet to recognize them and “raise awareness” as these things go.
Scrolling through my social media this morning, I came up a meme celebrating Rare Disease Day and I kinda wanted to chuck my phone across the room. Celebrate? Ummmm, I’ll pass on that party. There isn’t one single thing about MD that I would don a party hat for. What is there to celebrate about progressive neuromuscular disease in any of its forms?
Since I’m not cutting celebratory cake today, I propose that rather than whooping it up (which, OK, I’m relatively sure isn’t what the meme’s original poster intended with her use of the term “celebrate”), we take a moment to educate ourselves. Rare disease isn’t limited to my corner of the world affected by neuromuscular disease; rare diseases affect all shapes and sizes of people and the internal systems that run those people. If you know someone who looks a little different than you do or behaves in a way that seems different than your behavior, or moves in a way that seems labored or off-center, take a moment to consider why that might be.
Rather than divert your gaze from what you observe as weird or different, instead maybe you do a quick little Google search. Maybe seek a smallest morsel of introductory knowledge and understanding. Knowledge and understanding are certainly entry points to empathy, the awareness of the feelings and emotions of other people. The world could stand a whole lot more empathy and human kindness these days. I’ll start: for information about muscular dystrophy, ALS, and related neuromuscular diseases, my launchpad is the Muscular Dystrophy Association.
I lied earlier when I said there was nothing to celebrate about MD. The faces of the MDA are worth celebrating. I’ve written time and again of the ways the Association has benefitted kids with neuromuscular disease in general and my son in particular. For my friends, family, blog readers, and even random strangers who’ve donated to our Muscle Walk team, YOU are definitely worth celebrating. For you, I’d definitely toss confetti! I’d even get balloons.
One of my sons had a friend over this week. The kids enjoyed an extended holiday weekend, and craved camaraderie to cap off their four-day furlough.
Before you jump ugly on me, this was not some super spreader event. Our family has observed quarantine and precautions as good as or better than many. I say this not in the way of the “We are COVID-safer than YOU, nanny-nanny boo-boo” martyrdom/shame posts I read all over social media (which occur with less frequency these days than the “COVID is a hoax and you masker snowflakes violate my ‘civil rights’ and I’m partying with ten thousand of my closest friends at the bar anyway” photos shared abundantly). I say it because my children share precious little time with their friends and the outside world, and need periodic face time vs. iPhone FaceTime these days. They continue to observe protocol.
So, friend dude comes over. Bearing gifts. For ME!
It was surprise enough that anyone showed up, given the massive dump of snow we got Monday night into Tuesday afternoon this week. When all was said and done, Mother Nature graced us with more than a foot of pristine, lake effect snow. I wasn’t driving out there, but an intrepid few did hit the road behind the wheel of their four-wheel drive SUVs. Fortunately for my kid, his buddy’s father was one of those intrepid motorists.
So this young man shows up, sheds his snow gear in the back hallway, and armed with a wrapped gift, thanks me for having him over. I accepted his lovely gift with a ridiculous smile, goofing “Get out of here!” in reply. We both laughed, and I’m at once touched and ashamed! I mean, I’ve sent my kid to friends’ houses with bags of chips, money for pizza, or dozens of donuts to help share the load of feeding teenage boys! But I’ve never sent a hostess gift for a child’s mother. This kid even hand-wrote a thank you note, and wished us a happy Valentine’s Day. Come ON! I joke about being constantly passed over for the Mother of the Year Award, and I think we can all agree I’m not even top 20,000 material. But this mom? *Ding, Ding, Ding* We have a winner!
I think the world of this kid, and even maybe a tad more, his mother, for making that happen. Good behavior and enviable etiquette don’t happen by accident. You can be full of all kinds of good character and goodwill through genetics, but not arriving empty-handed, complete with a handwritten note of thanks is a taught skill, not an innate one. The family’s thoughtful gesture warmed my heart and made me happy. More than that, it gave me hope. There are still parents teaching their kids to write notes of thanks. There are still parents who bestow gifts and other tokens of appreciation. It gives me hope because these parents are showing the next generation that being kind and expressing thanks matters.
Takeaway: That taking time to do something nice for the sake of doing something nice rewards on both sides.
I’m taking a sabbatical from Facebook. Since joining in 2009, I’ve mostly enjoyed social media. I mean, social media did give me THIS blog platform and you beautiful people who check in, so there’s a love factor of a billion-and-three for what can happen online.
I’ve enjoyed catching up and keeping up with family far and wide, old friends as well as the new ones I’ve met online. This week I read a post written and responded to by some people from my distant past. The posts and comments read like they’re planning the next coup attempt, so I know they’re probs not the online crowd for me. I found the original poster’s opening comment fairly ludicrous in the way of his blatant entitlement, and the responses were peppered with messages of hate, racism, and falsehoods too numerous to list. I stopped reading. And I’m stopping reading for a while anyway. Gross.
On the opposite end of this creep’s entitlement comes an email from our school district. You may not know that public school districts do this, honestly I wouldn’t expect most people do. Most of you enjoy the great fortune not to need food assistance, so wouldn’t understand the genuine need of the 82.6% of the students in my school district identified as economically disadvantaged. This means that fewer than 20% of students’ families in our district make enough money not to qualify for free or reduced lunch. My children are eligible for free lunch, attending school in our resident district, so maybe reset your visual of free lunch recipients. As a parent, this email hit hard. We are off on Monday, and students continue their break through Tuesday, so our schools are offering three takeaway meals per student per day for three days.
I’ve never known hunger, and I’ve never been unable to provide food for my children, even when my husband had been unemployed for extended periods of time. For more than 80% of the kids and families in our district–my children’s classmates included–hunger is real. I’ve had Monday morning students tell me that they haven’t eaten since Friday school lunch; this is not an urban legend deal. I get a little snippy when my own kids bitch that the fridge is “kinda empty” or that the shelves are bare and they’re starving. Child, you are NOT starving. Their greatest hardship in this scenario is that I haven’t had the oomph to shake my butt to the grocery store.
Three meals a day for three days, and a pizza.
People rail against our district. We are an enormous urban district unlike any other system of schools in any geographic region in the state, and we get all the bad press. Now to be fair, I’m not in love with each and every decision the board makes. I’m not here to sell you the bill of goods that my employer is above reproach; when you mess up, there should follow the fix-up. My employer has done me wrong and done me wrong BAD, and y’all know I hold a grudge.
But NO ONE does what our district does in terms of meeting the most basic needs in Maslow’s pyramid: safety, shelter, and food, NO ONE. You can’t reach the top of Maslow’s pyramid–self-actualization, critical thinking, self-esteem–until the base layers are met first.
So when good press is deserved, and it is very much deserved, you won’t see this story lead the 5:00 local news broadcast, or maybe it was on Facebook, and I missed it in my absence. Go, public schools!
I “celebrated” six years on WordPress this week. Somehow I’ve written 347 posts prior to this one. Writing provided the cheapest form of therapy I never wanted to need. You don’t get to pick whether or not your child inherits a progressive neurological disease, and trust me, NO parent would pick that. Six years ago, that doctor looked me in the eye and told me that my son has muscular dystrophy. I thought I’d never recover from that shock, but here I am six years and 348 little stories later.
Today was my son’s last annual neurology check-in and check-up as a chronological child. His doctor today reminded me that should my son choose, I may not even be invited to this appointment next year! I can still see his eleven-year-old face as he underwent the first of those strength and resistance tests. I can see him sitting beside me, asking why my face looked funny, contorted in my futile attempt not to cry. I can see his little face, and brother’s even littler one, each asking if muscular dystrophy meant he was going to die soon.
Today, he is stable, and in this unstable world of ours, that is a celebration.
He keeps his diagnosis close. Since the first days post-diagnosis when he told a few of his middle school buddies, he’s told no one. No one. He rarely talks about it even to his dad or me, and I worry that the weight he carries inside takes a toll. Keeping a secret is exhausting work, but I don’t know his MD story; I can only know mine.
He shared with me that he “came out” to one of his closest friends this week, and relief is the only word I know to capture how I felt. Letting even one new person in, a person he trusts to keep his secret safe, is in line with an Everest summit bid. Maybe to you it seems like one step, but from my view, yeah, it’s that big a step for him.
Though today’s was a good one as they go, I hate these visits. As you’ve learned about me over these six years, I don’t manage anniversaries well. In my twisted, little mind, every significant calendar space is highlighted and circled, underlined and in bold with lights flashing around the date, and today felt no different to me. It hurts, still, just having to be there, knowing that something in the way my DNA combined with his dad’s at that burst of a microsecond in time resulted in my son having this rotten disease. Fate, genetics? Whatever it is, the story always ends with guilt.
Are there already six hundred blog posts connecting the rollout of the COVID vaccine and one of Hamilton’s most quotable, recognizable stage moments?
If memes are already in high circulation, or worse, the unforgivably “dead” meme, as the kids say, then you can be sure my title is not a terribly clever or innovative one, I know. I’ve been neither prolific nor creative much under COVID isolation, but maybe there’s reason for optimism. . .
Being a public school speech-language pathologist meant that I was identified as being a 1A. 1A is my state’s designation for those among the first eligible to receive the COVID vaccine here. My work group received a midafternoon Thursday email with a message and sign-up link inviting us to schedule our first appointment with the City Health Department. Turned out that email was mistakenly sent to all employees, not specifically to the ones meeting the select criteria, and there was something of an uproar as people attempted to schedule online. Only a fortunate few with the fastest of fingers were able to get in that first afternoon, and oooh-weee, a mild uproar ensued. Can an uproar be mild? Maybe it was more like a ballyhoo or a ruckus.
The erroneously sent email was retracted within minutes (do not envy that guy. . .), and not long thereafter, those appropriately identified and willing members of the target audience continued scheduling their first vaccines. I guess I shouldn’t have been, but I was surprised at the level of anger and disappointment expressed by those unable to score one of those coveted slots. Me? I’m your glass half-empty gal. To my way of thinking, we went from not knowing it was even the remotest of possibilities Wednesday to “Sign up RIGHT NOW” within the span of less than a day–I honestly could not believe we were even included as fast as we were. Plus, my lot of random luck dried up drier than the Sahara a long time ago, so I never expect something like this to go my way. WOW, that reads deeply pessimistic, but it is true: I don’t ever expect to be on the inside of any velvet rope kind of situation these days, I just don’t. And I don’t get worked up over it either like I once did. I think the word is resignation; I feel resigned to whatever crumbs and leftover morsels I do get, and it’s OK.
I interpreted the frustration of those not being able to schedule resultant to just how significantly COVID is affecting our resiliency. Memes about ours and our children’s resiliency abound these days. Another meme making the rounds reminds us how it’s OK not to be OK right now, and let me tell you from my own corner of the world how not OK I am. Actually, I won’t tell you. I suspect I’m among superb company, with a great many of us wishing and hoping for a quick return to our good old days.
I interpreted the frustration as indicative of how badly educators want to be back to work, back to work as we previously knew it anyway. We are working harder than ever under virtual instruction, but my unscientific data pool finds that only a select few prefer virtual speech therapy. We got into this job because we enjoy, maybe even crave, human interaction. You don’t get the incidentals teaching virtually–I miss the sound of laughter as kids mess with one another in the hallways, I miss high fives and hugs, and loud bursts of energy and sass. I miss those random conversations with staff and students in the hallway. I miss the kids’ faces when they GET IT! I miss talking to my coworkers who are also my friends and my coworkers who aren’t my friends, but are people I find interesting or challenging or entertaining. We want to get back to those incidental benefits implicit in our career and workplace choices.
But back to the optimism. . .
I got the first of my two vaccines Saturday. The process could not have been more professional, the City’s vaccine distribution management is surgical in its precision and execution. Trained staff at each waystation explained what you were to do and where you were to go next. Nurses ran through their interview protocols allowing plenty of time for questions in response. Medical assistants shepherded vaccine recipients according to the numerical sequence in which they arrived (because, and I do have a bit of insider info here, nothing incites bad behavior more than when people feel they have been skipped in line!).
The shot itself was no thing. In and out. Afterward, those who get vaccinated are required to wait fifteen minutes, in case side effects were to make themselves known. EMTs were at the ready. You EVEN got your parking validated on the way out! I mean!!
Afterward, I raved and rattled on for probably a couple hours about how great I felt and how encouraged I was by these first steps of an incredible coordinated effort to begin the return to our former lives. Me, woman of half-empty note, floated in the world of half-full, and it was a delight.
My neighbor, another early vaccine recipient, texted Saturday, asking how I felt. He admitted to having a mild headache and an early bedtime his vaccine day, but otherwise felt fine. I was skipping along, still ridin’ a giddy wave of “I am not throwing away my shot” pretty terrific, until I wasn’t. By late afternoon, I began to feel achy, and I wanted (though resisted) a nap. Just before my big-girl bedtime, my arm began to hurt. Like holy hell, my arm hurt at the injection site. I felt like I’d been slammed with a Louisville Slugger, and kept examining my arm in the mirror, convinced I’d find a stupendous bruise to match the physical insult I felt I’d had to have had. But no. Soon enough, like the injection itself, the pain in my arm was no thing and by Monday morning, it was but a memory.
As baffling as this sentence construction sounds, I cannot wait to get my second dose. I’ve been good about staying close to home, and limiting contact with the world, like I’ve been really goooooood. I’m so damn tired of being really good. I will gladly endure another meh kind of achy, need-a-nap kind of day if it means my tiny role in returning to the real world has been satisfied. I can’t even believe I have to say this, but the pain in my arm was not from the implantation of a tracker microchip certain fringe elements insist (via their smartphones, no less. . .) is part of this great vaccine conspiracy.
I’m not usually the type who looks forward to pain, but I am eagerly anticipating the next round. Batter up!
Two people, both of whom are very important to me, celebrate birthdays today.
Pre-pandemic, I felt lucky if I was able to see my dear friend, A, maybe twice per year. In lockdown, it’s less–it’s not at all, and I miss her. She is worth celebrating any (every) Thursday, but this Thursday birthday is a roundish one, and hers is a life to be celebrated. Her kindness, talent, and killer sense of humor are to be exalted from rooftops and mountaintops.
In addition to being among the best of women and friends, A is an artist. She’s an art teacher too, a committed educator at heart, so maybe she’s an art teacher who’s also an artist. I’ll have to think on that chicken-and-egg kind of scenario. Most Christmases, A creates a signature ornament for people in her inner circle, and these ornaments are true works of art. As I decorate our Christmas tree each year, I marvel at these pieces of art, pieces of my heart, and thank my lucky stars she is my friend.
2020 hadn’t been kind to the world, and 2021’s not exactly shaping up to be any kind par-tay yet either, so we are foregoing our annual birthday girls’ weekend until such a time when a par-tay can be a par-tay. And let’s be honest, when I say “par-tay” I mean a real dinner with high quality cocktails, maybe a movie, carb- and frosting-heavy bakery items with candles, and talking til the wee hours, laughing until it physically hurts. Happy birthday, sweet girl. I luh you.
Birthday Girl Number 2, the second A of note here, is one of the more badass women I’m lucky enough to call a friend. She is smart, SMART, funny, and compassionate. She has the same nose for bullshit and appreciation of sarcasm that I do, and she is one of the few people I can get real-real with when it comes to my professional practice. I distinctly recall her calling me up and calling me out for something I said during one of my presentations several years back. As I am wont to do, and honestly can’t save myself from myself sometimes, I made a flip comment to my audience. I knew my audience would get it, but I hadn’t considered that some outside our organization could find my words inflammatory. I hadn’t even given it another thought. Wise and experienced, A called me the next day to say that while she didn’t necessarily take exception to what I said, others could, maybe even should, and that I need to watch my tone and my words. I’ve never forgotten the lesson. A casual friend would dodge such hard conversations, but not A. I don’t think she enjoyed it, but she DID it. For me. And that says everything you need to know about her character.
I may win the prize for shitty 2019, but Birthday Girl Number 2 earned her spot on the podium for 2020. What could have been devastating health news for her wasn’t. No. That’s not accurate. The news was devastating, but she received and shared it with grace, humility, and a positive spirit. Me? I cried. As is her way, she fought, fought with the tenacity and grit I always expect from her. She won. Of course she won. She’s the picture of resilience and resistance, and I admire her enormously. Every so often, I get a random text message from her in which she gives me some terrifically unearned, undeserved compliment and it never fails to make my day. Happy birthday to you, A! I cannot wait to celebrate with a superb glass (OK, bottle) of red. Cheers to you, girlfriend!
A is for lots of other concepts too. Like abomination and anathema and antipathy and it’s almost time to inaugurate a new President. A is for 1A, as in being a speech-language pathologist, I’ve been identified to be among the first wave of citizens to receive the COVID vaccine. A is for adversity, and we’ve all faced adversity in the last days, weeks, months. . . But A is also for amity, which means a friendly relationship and abundance, which I hope to find in care, kindness, and caution in these days to come.
A is for á la mode, which literally means “fashionable, stylish” or “with ice cream.” Obviously we are going the ice cream route here. To go on top of the cake. It may not be my birthday, but I gotta get me some cake, the more á la mode, the better!
At the annual urging of my Goodreads app, I set a reading goal each year. One year ago today, I set what I’d considered the lofty goal of reading 30 books during 2020. I consider myself something of a bookworm, but consistent with most things in my life, my commitment to this or any leisure activity I pursue is governed by my real-life family/professional commitments. I love to read, but my responsibilities see to it that reading does not become an obsession. My literary commitment thus runs hot and cold. Add to that, if I don’t devour a book in three days, that book languishes on my nightstand for weeks before I dig in and commit myself. Thirty books sounded like a lot, but an attainable lot.
Like much of the rest of the world, I found myself with a bit more time on my hands in 2020 than I’d expected to have. Too, like much of the rest of the world, I needed an escape from the reality the earth’s circumstances foisted upon us. So I read. A lot. Sixty-two books, mostly novels with some non-fiction thrown in, filed under “attempts at being informed.”
I escaped to places and times I’ll never get to experience–World War II-era Poland, to Spain via Barcelona and Madrid, Sweden, and survival camp in northern Ontario. I canoed down the Mississippi River and partied with NYC socialites post-Depression. I hopped rail cars crossing the Mexico-US border fleeing certain death at the hands of drug cartels. People know I’m a bibliophile, and during the year I also received a number of “fill-in-the-blanks” books with titles such as It’s Your Weirdness that Makes You Wonderful, 642 Things to Write About,The Journal of Awesome, and Zen as F*ck (obviously the * character is legitimately in the title because if you know me at all, you know I’m not shy about expressing my feelings with a well-placed “fuck.” Reading a stable of authors whose command of language falls nothing short of majestic is why I read: their work takes me places. And I needed the change of scenery. Didn’t we all though?
I read much, but even with these thoughtful writing and reflection prompts to guide me, produced little. I know I am far from alone in that regard–the writing little part, that is.
Bereft of the words usually in abundant supply, I messed up a lot last year, and I passed on opportunities I regret having denied. I held a death-grip vise on words that others needed me to say, words others needed and deserved to hear. To have given them voice would have disclosed pieces of myself I didn’t know resided in me. Sharing them felt akin to exposing and hiding myself at once. You learn too late that you lose the right to say what you should have expressed all along. You want to make it right, but this time it’s you who is denied that opportunity.
I don’t ever make new year’s resolutions, but I hope to do what I didn’t and undo what I did during this atrocity of a year. New year’s optimism means that people are speaking as if the calendar flipping to January 1 is going to repair the insanity, but I know better. 2019 nearly took me out, and I naively believed that 2020 was coming to rescue this damsel in distress because a page had been turned. Spoiler alert: 2020 wasn’t the massive clean slate I’d dreamed about. Nor is this January 1 the panacea for the derailment we’re slogging through.
But you have to begin somewhere, right? So I begin by thanking my lucky stars I found even a particle of solace in the literary travels I took in 2020. As I tee up my 2021 reading goal, thirty-two books feels right–it’s more than a book every two weeks and so much better for my brain than Candy Crush. I am hoping against hope–though less naively than last year–that the new year brings something of a return to normal, that I’ll experience the world beyond the confines of my home office and dog-walking route. It seems the opposite of a goal to in fact, read fewer books than I did last year, but big picture?? It’s a good goal. To quote from the final of 2020’s sixty-two reads, The Labyrinth of the Spirits (The Cemetery of Forgotten Books, #4) by Carlos Ruiz Zafón: “Books taught me to think, to feel, and to live a thousand lives.”
Perhaps I’ll find my voice again, because again from Zafón: “One writes for oneself, and one rewrites for others.” Writing tells me how I feel–that’s my six-word memoir. Must it follow then that writing will help me identify what’s in my head and my heart? Will that create the spark I need to find and connect the words to construct the sentences that need to be spoken? Maybe?? I don’t know, maybe it doesn’t necessarily follow. But there is plenty of time for rewrites. Maybe I’ll get the narrative right this time.
To the year that has given the middle finger to pretty much each and every tradition I’ve held, I am inclined to give the finger right back. It’d be easy to itemize all that has gone wrong in 2020, but this is a blog post, not a tale voluminous along the lines of War and Peace. Most of you are sheltering in your bunker, waving at the outside world through your window these days. It’s in peculiar circumstances I find myself: I simultaneously crave connection and want to be left alone.
We intend to honor small group, social distance protocol for the holiday, gobbling up our turkey as a foursome rather than our usual twenty-foursome. How very cozy and 2020 a holiday we will have.
Since my son’s diagnosis in 2015, I’ve written an annual post of Fourth Thursday in November gratitude, but COVID renders me at something of a loss to create a list of what’s gone right this year. Scratch that–COVID has rendered me at something of a loss to create. Period. Full stop.
But I’m gonna try. ‘Cause tradition.
I’m grateful no one in my family has been horribly affected by COVID. The extended family has not escaped unscathed, but its effects seem neither to have been critical nor debilitating in the long term.
I’m grateful my son with muscular dystrophy has not complained that his physical condition has deteriorated this year.
In a related revelation, I’m grateful I’ve instituted a “You plan and cook one meal a week” night with each of my sons. It’s been both joyous (mostly) and exasperating (a little) watching them work really hard at kitchen skills that seem so obvious to an old woman like me. Watching my number one son physically struggle in his kitchen maneuvers has been eye-opening, but *sigh* it’s provided insight into some accommodations he may need. Forewarned is forearmed and all that. . .
I’m grateful that my sons have their own bedrooms and desks therein. You cannot fathom the noise levels I hear in the homes of some of my students. There is a level of privilege in having quiet work space and reliable Wi-Fi, which allows for, in my estimation, fewer distractions from learning. Despite never having set foot in his high school building, my number two son is crushing his freshman year. Number one son misses what he loves about school–playing music on the radio station, making music with mallets, and the company of classmates–a great deal, and though they both desperately want to be in school, they almost never complain. And they certainly could.
I’m grateful my younger child has that one friend he can see, and I’m grateful for his mom. Each of our sons is the other’s person, best friends from the first day they met at age four.
In a rare 2020 highlight, my favorite singer played my request on his Facebook live performance FOR ME and said I was awesome. Out LOUD! And if you don’t know how indescribably bonkers it made me, you’ve really not been paying attention here. And even if he was totally BS-ing I don’t even care. Damn, do I miss live music with my Ladies and my Ladies Ladies though.
I’m grateful for the new perspectives new people in my life have provided this year.
I superlove the birthday messages our children write for us. To have read “there is no other human being on planet Earth that I’d want to be my father, and I’m incredibly grateful for that” would melt even the iciest of hearts.
I’m grateful for the sliver of time in 2020 when elective surgeries were a thing. My husband had some facial reconstruction done a few months back. He’s not before-accident pretty, and his disappointment in that breaks my heart, but there’s improvement. And when dead seemed like the most likely outcome, anything not dead is pretty good.
I’m grateful for the opportunity to work from home. I do have to go in periodically, for my employer mandates certain activities be completed live and in-person, so I go. But mostly I work from my basement or dining room–it cuts both ways, because home/work boundaries are more difficult to establish and maintain when your commute is ten feet–and I like when my children visit me between their classes.
Working from home created the opportunity for my family to see the work I do. Literally, they can see and hear the work I do, and that helped deepen their understanding of what I do and why my work matters to me. And, frankly, why I’m nuts sometimes.
I’m grateful I’m in good enough physical condition to walk up and down a cliff. I visit a secret beach not too far from my home, and spied this rainbow leaf on my way down.
I know that many view Thanksgiving as a day of mourning, and I recognize that history is written by the side who wins. For me, Thanksgiving is synonymous with family. Though our 2020 Thanksgiving table will feature only four faces, faces extremely familiar to the others, I’m an above-average cook who will prepare an above-average, much-too-big dinner for my family, an event I’m anticipating happily. I am steadfast in my Christmas music can be played only after Thanksgiving Day practice, but I didn’t say the Christmas tree couldn’t go up earlier than ever. It’s 2020 after all.
I’m not superstitious–just a little stitious (that one is for fans of The Office), and actually, it’s Saturday the 14th now anyway. I’m able to mark myself safe from any catastrophic outcomes the second Friday the 13th in 2020 might have delivered. The first Friday the 13th was my last day at the office before the entire world shut down last March. I stopped to pick up PPE for testing on Thursday and felt a pang. Who knew? It’s possible to miss sitting at my cramped, utilitarian desk in my ancient, unattractive office building because of course, it’s not the physical space, but being apart from the people with whom it’s shared that knocks the wind out of me.
It’s 2020, which means that it’s perfectly acceptable to wear slippers when giving a presentation for my SLP colleagues. Normally I’m a heels kind of gal when I present, but what the hell? It’s not like anyone saw any of me further south than my clavicles.
Friday the 13th was just another workday in the bizarre string of everything-looks-and-feels-the-same days of virtual reality. I sat perched atop a yoga ball rather than standing at a podium for my presentation yesterday, and had to repeat the same info in two consecutive Google Meets. I’m much better in the “one and done” world of professional development, but hey, on the upside? I didn’t have to straight-up memorize 50 minutes of content material.
Though it’s cited as something feared more than death by many people, I discovered that I much prefer public speaking in public. Speaking into a webcam is shouting into the void, and I do better with the feedback of an audience. I was already working two screens and keyboards, and couldn’t manage a third to make the Google audience visible to me. I wanted at least to see who was tuned in, but all I heard was pure, absolute silence. Well, there was that one SLP who left herself unmuted. Her open mic sounded to me as if she were doing dishes, and it nearly drove me to distraction. This is the modern workplace, and hey, you got dishes needing a soak? Have at ‘em. I wouldn’t have enjoyed listening to me drone for an hour or so either, but probably I’d have been more discreet. ‘Cause, see, you don’t announce that you’re only minimally working-working, you mute yourself.
The activities on my calendar this week have unveiled to me a number of personal revelations. They don’t all land on the namaste-spirit “quest for personal improvement” pathway. Revelations don’t always or exclusively land in the positive column. Sometimes the light shines on the sunny side of the street, and sometimes it illuminates just how big a weirdo you actually are.
Politics and news were pummeling me, and I couldn’t both engage and remain not nuts. I felt quite a lot like heeding the words of David Rose, one of my favorite television characters of all time: trying very hard not to connect with people with right now.
Some of the revelations, revealed in no particular order:
I learned that my younger son has been paying attention. Kim Ng was named the first female GM in Major League Baseball this week, and he proclaimed it to be a “very powerful moment.” How I love this child.
Mine is not a book review blog, but I learned that it’s possible to love Fredrik Backman’s writing so much that I want to plow ahead at warp speed and devour his work because he is So. Damn. Good. But I also never want it to end, so I find I must pace myself. Anxious People is genius in the way Backman reveals the relationships between and connectedness of the characters. To date, I’ve read 53 books in 2020, a personal record.
My children are lonely, no real-life school, and no extra-curriculars, no social engagements. I suggested they read more than their required texts. I shared with them how books have always transported me, provided the needed getaways I could never make happen in my real world. That I’ve read so many volumes this year probably speaks to my desperate need to dwell in a reality other than my own. My own social engagements are few and far between, and I’ve never felt like more of a misanthrope. Is it even possible for a loud person to be both an extravert and an introvert? (Yes, yes, it is.)
Throwing caution and self-esteem to the wind, I found myself on my bathroom scale this week. I want to lose those last five pounds (again), but not as much as I want to enjoy nightly cocktails.
In related news, it’s November, the only 30 days that Kopps Frozen Custard makes available my favorite sundae, maybe my favorite food in all eternity, available. Two weeks into the month, two Almond Boy sundaes polished off. Two more pounds added to those five. . .
I LOVE loud music, but loathe loud television. Even in this world of isolation, I still seek quietude. It makes me fucking bonkers when my husband or sons walk into a room in which I’m reading or working or writing and blast on the television. I mean sure, my husband’s ear was ripped off his head, and hearing loss resulted from the neurological damage occurring with the crush, but jaysus, that’s loud. Remember, I didn’t say all the revelations were good ones.
Orange and fuchsia are my favorite colors, but I learned that the Milwaukee River, while not the cleanest body of water, sparkled in the most electric, hopeful shade of blue. That particular shade of hopeful blue is my interim favorite color.
I’ve discovered that denying myself something I want is both possible and crushing. I can want and want and not get and not get and that’s just the way life is. It’s a paradox of adulthood: what you want that’s wrong can seem perfectly justifiable, and what’s sensible and reserved can leave you feel like you’re missing something.
I want my children to visit their grandparents and my parents to see their grandchildren, but I am not prepared to carry the burden of the potential spread of the coronavirus to my parents if I arrange for the kids to visit.
My friend Dena, who is probably my biggest blog “fan” if my having a fan is even a thing, became a widow recently. Neil’s funeral was shared via Facebook Live because grieving the loss of friends and loved ones is yet one more human ritual affected by stupid COVID. His was a beautiful service, and I felt connected, however unconventionally, having been able to attend from a distance. I wanted to support my friend in a less tech-y way, so this week I delivered dinner. I see pretty much no one these days, still it was a stunner to realize as we chatted how my social skills have deteriorated.
Dena told me that she missed the frequency with which I had once written here in this blog, that she missed my voice, because reading what I wrote was like listening to me talk, which is about as nice a thing as you can say to someone. I wish I had more to say, I wish I had more to offer my fan (yes, fan, as in singular!)
I felt more clear-headed when I wrote more regularly. That’s the revelation on which I’ll close. Will I do something about it though? I mean, with all the drinking and frozen custard crowding my agenda, where will I find the time??
The forecast called for clear skies and sunshine here on Election Day. I rose before the sun, grabbing a front row seat to the sun breaking the horizon over Lake Michigan. As I headed out the door, I mumbled something to my husband about finding or creating some sort of metaphor, confirming that no matter what the day’s outcome, the sun still rises.
Tuesday was un-Wisconsin-like warm, mid-70s temperatures bliss, and I wasted not one moment. I completed a little yoga practice when I returned home from the lakefront. I assiduously avoided the television. Our Echo Show responded as commanded to, “Alexa, play ambient music” and I floated in its trance. I walked the dog. I took photos of this incredible display of urban art along with an incredible display of urban forestry in the form of the reddest maple leaves I’ve ever seen south of Canada’s flag. I muted all social media notifications on my phone. I texted a few people I don’t connect with often enough and love to bits to tell them I was thinking about them. My younger son and I walked for miles. I cracked the spine on Dan Rather’s What Unites Us, a collection of essays I cannot recommend highly enough. I prepared a complicated dinner. I even dusted the living room and Windex-ed up a few windows because Tuesday was a day for making good choices.