It’s me. Hi. I’m the problem, it’s me. I am the one who needs to calm down!
I remember the good old days when my concert ticket buying freakouts were limited to Barenaked Ladies shows. Their music has been my constant companion for more than half my life, which, based on the way my bones are aching these days, is quite a long time. *sprained ankle still smarts four years post, rotator cuff reminds me daily it’ll never fully cooperate again, knees screaming at me that running one more step in my life will occur only again if and only if I am actually on fire or being chased*
I’ve been fortunate to have had the best seats in the house for several of my favorite band’s concerts. I’d be a fool not to acknowledge that run of good luck. I’ve also spent a sizable chunks of change on those tickets–it’s not like the good seats come for free. Any concert is made up of more than the musicians singing and playing for you in that moment–sure, they’re performing, but they’re not doing it alone. Off-stage, it’s technicians and roadies, it’s hotels and merchandise managers, it’s logistics and tour managers, set design, dancers, lighting riggers, drivers, sound engineers, and a million more details concert-goers don’t think about when the artist steps into the spotlight. Then there’s f’ing Ticketmaster, monopoly overlord of all, whose fees add, oh I don’t know, 25% and up from the base ticket price?? Grrr. . . This is to say concerts don’t come cheap and I am willing to support the musicians that bring me happiness.
I need some happiness right now, but more than needing it for me, I desperately want it for my younger son. Maybe it’s closer to accurate to say that I need it for him. My baby doesn’t ask for a single thing. He’s not into clothes, he never goes out with friends, he can barely even accept new sports equipment when it’s needed, worrying over its cost, saying he doesn’t need it, whatever “it” is in a given situation. Listen, kid, we’re not so broke we can’t afford a baseball bat to replace the one you’ve had since seventh grade, OK? We can afford to buy you new jeans or a hoodie a couple times a year, geez.
Our family has been going through some stuff, a whole new shitstorm of stuff these last few months. My husband’s accident and his employer’s shocking cruelty in its aftermath have beaten us down. I will write about it when I can, but jumping the gun here before the lawyers sort it out is neither advantageous nor strategic. It is beyond my comprehension to say or write “our lawyer,” but that’s how far this has devolved. *ahem* My younger son, the only one home with my husband and me these days, hears and overhears a lot. Too much.
Taylor Swift is to my son what BNL is to me. I was shut out of the ticket-buying lottery when tickets for The Eras tour went on sale. I asked my kid if he wanted to go, and in typical fashion, he mumbled, “I don’t have to.”
“But do you want to go?”
Quietly, “Well, yeah.”
The years before and immediately following the accident were my kid’s travel baseball years. I hold close the fondest memories of my little one–he was actually still little(ish) then!–sitting shotgun, phone plugged into the car stereo, choosing that early morning’s pregame playlist. All Taylor. All the time. Naturally I’d become a fan too, though embarrassingly out of her target demographic! But a good song is a good song, and the woman can write a song! I admire Taylor Swift and I LOVE her for being part of my relationship and connection with my son. So TS ticketing has become a research project. It’s all I think about, getting my long-time Swiftie to one of Taylor Swift’s Midwest shows this summer.
This research project. . . It’s harder than graduate school, I swear! My research is layered–each week I’m monitoring multiple ticket outlets/secondary vendors the day of each show, seeking patterns in pricing in the various cities she’s performing, reading all kinds of online forums, following social media accounts about scammers, hoping against hope when I do click purchase–and that’s if I even can click purchase because right now, tickets are going for about a semester’s worth of college tuition!–I don’t get scammed. Like research papers did in grad school, my current research project is consuming my thoughts. Which honestly? Might provide a nice diversion from the everyday doom and gloom of my depressed brain. It’s why I had to write this post —I had to read my thoughts on paper, so to speak, see them to then organize them in my brain. Except. . .
I’ve joined a number of social media groups/pages geared to fans and ticket hopefuls and initially set up notifications because I didn’t want to miss an opportunity. I’ve come to learn however that these notifications, these frequent distractions are not good for my mental health. Because I want this so badly for my son, I’m checking and checking and checking and worrying and fearing and what-if-ing and what if NOT-ing. I have to stop–not the ticketing effort but the barrage of updates. It’s a weird and inappropriate kind of empathy I’ve got–I’m so there with these frustrated ticket-buyers, wanting a seat, fearing they’ve been scammed. I feel their anxiety in my bones. I do not need to be borrowing anyone else’s anxiety however. I could use a bump of their energy, but losing sleep over it this early in the game is not helpful for the cause or to myself. I’ll get tickets or I won’t.
My son knows his mom is nuts. He knows I desperately want this for him. He knows I GET how much he loves Taylor Swift, as you can see below even if he is giving his mama some shit (this kid is simply the best BEST!). And even though it evokes major cringe, he even knows I have my own favorite Taylor Swift song (Treacherous though that may be tied with Sparks Fly and I Did Something Bad) and album (Lover) apart from his. But he is also a realist and knows I’m more likely than not to fail in this endeavor, so I work not to reveal my ticket-buying obsession with him. If I fail, he will say it’s OK and won’t voice a whisper of disappointment to me, but I sure hope not to disappoint him. It IS me. I AM the problem!
Crying over concert ticket access and pricing is a first world kind of problem, yep. People have endured worse fates than not getting the hottest concert ticket in town and gone on to live fully productive lives. People receive terrible medical diagnoses, people sustain life-threatening injuries, ending up maimed and paralyzed under the wheels of their employer–these are real problems and I know from real problems. Maybe sitting out Taylor Swift’s The Eras tour isn’t one of them, but right now, today, it matters to me because it matters to my teenager.
Gotta keep my mouth shut and my fingers crossed. But maybe, maybe, maybe this time karma is MY boyfriend. . .
I’m writing a book. How do you like my working title? I bet you think that running a person over, leaving him bleeding out on the street, crushing his skull in three places and breaking six other bones, tearing off part of his face and one ear leaving him with a massive head injury, facial paralysis, and other sequelae is the worst thing your employer can do to you. You’d be wrong though.
You all know I’m a “Why use two words when sixty-two will do?” kind of writer, but even I understand that the title of my upcoming memoir could use some tidying up.
Obviously I’m not writing a book. I’m not even really writing a blog much anymore.
I can’t go into detail here (or anywhere right now) so the vehicle that had been driving my stress management and supporting my mental health–writing out my stories here on WordPress–is unavailable to me. Writing has been my lifelong companion, eons before the blog format came into being. Throughout my life, I’ve found comfort and clarity in writing. Writing the random thoughts pinging around my brain always helped me organize and label my feelings. Prior to the blog thing, I’d not been much for journaling and that has held. Never a diarist, I would instead write letters to other people. I’d never had intention to actually mail those letters, but the act of writing with a specific reader or listener in mind, of watching my jumbled thoughts coalesce into an organized narrative provided a finality of a sort. “Yes, this is how I feel.” And this is what propelled me into this blog in the first place. After my kid’s neurological disease diagnosis, I struggled with words in person. I cried a lot. Writing allowed me to say to my friends and family, “Here, read this” when I couldn’t express myself verbally.
These days in the real human interaction world, I’m expressing little other than rage. For everyone else’s benefit I’m keeping a little quieter than usual these days–no really, I am. When I’m outraged, I’m loud and rant-y, and I really dislike that when I’ve been wronged, I cry. Not sob-cry, but my eyes sting with bitter tears. I don’t like the idea that my tears are mistaken for sadness or considered a weakness. I am sad, but it’s more than that. Rage stemming from feeling wronged stars center stage these days but there’s no shortage of frustration, confusion, and shock in their supporting roles. I suppose I should be grateful that I’ve lived this many years before truly experiencing injustice firsthand and I am.
Aargh! I want not to be vague and veiled, but the time for me to hit publish on this chapter has yet to be determined. What I will say is this: Laws are written for the rich guys whose donations pad the pockets of politicians whose votes favor the employer, not the worker. There’s no room for the average Joe (or his wife) at the table. Your employer can create and enact policies designed to beat you down and knock you out and it’s perfectly within the law.
If you believe that institutions will necessarily act with fairness and compassion, take it from me and please stop believing it. Representatives of those institutions, even the really, really good ones, even the very best ones, will fall on the side of maintaining their status and pay grade, not yours. When the bad things happen, believe in your people, your people, the ones who have stuck and will stick with you even when you’re prickly and a little out of touch because being quiet is easier than talking about how exhausting and overwhelming everything feels right now. That’s where you place your faith. Thank you for sticking with me.
January 21 remains one of my least favorite calendar days. Eight years ago was my big kid’s d-day, diagnosis day. I thought I’d never be OK again after his appointment that morning, but reality is that time and life just keep marching. Eight years?? I still can’t rid myself of the dress I wore to the neurology clinic that day. That’s probably not healthy, right? Kinda weird, at any rate, I’ll grant that.
Great things happen. Terrible things happen. Most of what happens day to day though is mostly just noise, just a kid and his mom living their lives. We go to school and work, hurriedly wolf down meals before we shuttle from one rehearsal or sports practice to another. We celebrate birthdays, attend concerts, scrub the kitchen floor, walk the dog. Of course it’s not all bland and insignificant, but neither is it all supernovas and trenches. I’m glad to know this.
As it relates to his diagnosis and growth from a child to a young man with a degenerative neuromuscular disease, what I’ve come to believe is that now, it’s nothing to do with me. In the beginning it was ALL me, or at least that’s how I felt. For the first several years after THAT January 21, being an MD mom defined me. It ranked high on the list of descriptors I used to frame my identity anyway. I wrote these little stories that helped me fit MD into the vision I had for that once blue-eyed baby.
So many more great and terrible things have happened since that day. And of course, there’s been a lot of noise.
My kid eclipsed what I’d believed possible for him on that January 21. He, not I, must now shoulder responsibility for his self-care, medical care, physical fitness, nutrition, sleep, all of it. . . And that’s nothing to do with me. Maybe because he’s not living with me presently, this anniversary hits less directly. It’s not like I forgot–I mean, I’m writing this post, proof that my kid is on my mind–but the eighth anniversary, the bronze and pottery anniversary for the traditionalists, feels less paralyzing. Out of sight, out of mind? No, not that.
A different vision that matches the different stage of life he’s living and experiencing? Maybe that. Yeah, growth. That.
I’m not one to bury the lede, so I’m just gonna say it: 2022 wasn’t my favorite.
To be fair, 2022 wasn’t the worst either. Most of the world hates 2020 very most, but I’m still super pissed about what went down in 2019 and my outrage and shock (yes, accident-related things do still shock me) take up a lot of space and energy. I physically feel my creative juices shriveling up, more arid than the Atacama desert. Eight years running now, I’ve lacked the motivation even to create a Christmas card, and I used to loooooove sending Christmas cards. Used to, you’ll notice the past tense verb there. I do loooooove receiving them, so if you’ve sent me tidings of great joy, know that I love and appreciate being included in your holiday celebration.
I woke today with, I’m not sure what, besides a full body-wracking cough, I woke with. Guilt? Energy? Duty? Creativity? A desire to creep out from the hole where I’ve insulated myself this year?? Sure, that. OK, not really that–I think I’m well-suited to the life I’ve created living under my rock and acclimating to it better by the day.
Lots of people assemble year-end lists. Their best-of *insert city*, their successes, their collections of must-read, must-do, must-eat, must-see experiences. Me, I’m aiming at an arc much lower than the stars, muuuuuuch lower than the stars: my life. This year-end compendium contains a photo that captures a moment from each month of this year. It’s no best of show, more like a day in the life with a nod toward some pretty good days in the life.
I’m no ray of sunshine ever, but I’d be a fool not to acknowledge that the sun does shine upon my world, my family, my friends, and me. I took 1,081 photos in 2022. Here’s proof that even the Grinchiest, Scroogeiest of nay-sayers (she raises her hand) is able to acknowledge the gifts 2022 bestowed upon her.
January
My little guy got his braces off in January. I took a personal day from work and shopped while his orthodontist performed his magical finale. Little guy and I went out for lunch together to celebrate and he even allowed a photograph of said million dollar smile that evening. You can see how excited Caleb the Wonderdog, whose dental/oral hygiene needs far surpass my willingness to invest in them, was to share in the experience by his dignified stance here.
February
Winters are long, cold, and confusing here in Wisconsin. One day it’s skies are blue -8 degrees with a wind chill and “real feel” temperature of -40. One day it’s 42 degrees under a blanket of clouds. One day you barely notice is somewhere in the middle but you do notice you’ve been inside way too dang long so you drag your child to a nearby state park to hike in the snow and melty ice and he plays along for the selfie. Wow, that was a long sentence.
March
Thank stars some things approached semi-normal in 2022. My older son got to participate in his senior year Competition Drumline contest. The Huskies positively brought down the house in their second round, crushing perennial winner and cross-town rival, Rufus King High School. Much to everyone’s chagrin (well, not to King’s obviously), a mid-contest rules change, YES, MID-CONTEST, meant the Huskies came up short by less than one point overall, and brought home the second place trophy. Pro tip for the new district music coordinator: How about you announce rules changes before the competition? Whatever. Our kids were freakin’ amazing and deserved the win. Everyone knows it, and to quote someone in the know: Mistakes were made.
A spontaneous jam between our kids and the kids from Riverside High School was a moment I’m glad to have witnessed and heard after the trophies were awarded. Thanks to Diane for this fun March photo. I sure wish you could hear it. You can’t here, but you can view them crush their second round performance by clicking this link here.
April
Another piece of evidence proving the world was returning to normal-ish was the 2022 Reagan High School Junior/Senior Prom. Our district held out virtually and with greater, longer-standing COVID restrictions than almost every any other so prom itself wasn’t even a given. Once it was confirmed and with just a bit of prodding from the parents, my son and his dudes all got fitted for their tuxes for the late-April soiree. Prom night, afternoon actually, threatened significant rain that never materialized, so the kids gathered for photos indoors. I love ALL the photos that were taken, one especially that my kid would crucify me for if I shared, so I’ve settled on this one, taken prior to his leave. I thought my kid looked so handsome, clad in grey and blue (Go, Huskies!) and I cleaned up OK too, I think. We gave him the “good” car to drive and my son and his friends had an absolute blast at the event, held late after hours at the Milwaukee Public Museum.
May
I’ve written previously about my son’s high school graduation but it’s my year-end recognition so I elect to relive this moment. My kid looked so. dang. happy. during and after the ceremony and I, entirely convinced I’d sob from the opening note of Pomp and Circumstance all the way through to the last chord of the recessional couldn’t have been more wrong. I was prepared for a somber evening but got instead a street party in downtown Milwaukee. As the kids recessed from the Arena and onto Kilbourn Avenue, it truly felt like a party, families literally hanging out in the streets downtown. It was physically impossible to cry amid the celebratory atmosphere–nothing but happiness and light emanated from those 300+ kids who marched across the stage that evening. It was his moment but I felt I had a hand in making something special happen as well.
June
Baseball season began in the snow and culminated on a college diamond on one of the most perfect early summer evenings. My #16 had himself a season! The quietest kid in the dugout found himself atop his team’s offensive statistics consistently throughout the spring. He had the highest batting average going into the last game (ended up second) and experienced his very own hero moment with a walk-off single late in the season. He was honored as a first team all-conference selection as a sophomore. It was my great joy to watch him play and to talk with him about not only the game, but his game. Photo credit to Thomas Markowski, Milwaukee City Conference.
July
This front row center photo of my best friend and me was snapped July 1. Tickets for Barenaked Ladies’ Last Summer on Earth tour were purchased in 2019, long before anyone outside the CDC dreamt how our very existence could become closed off and isolated by the pandemic nightmare. Tour tickets got bumped for next year and again for the next which meant that I’d at last be able to stake my claim on the best seats in the house in 2022. I was only able to score second row for the Chicago show (sorry, Ann, I know it’s so hard to see from way back there) but with a little help from our friends, we both lucked into a place at the Chicago soundcheck and let me tell you how absolutely ridiculous your reaction is when your musical heroes call you out in the audience. It’s super, insanely ridiculous. Beyond happy ridiculous.
Given the span of years between the ticket purchase and actual concert, events in our real lives meant my BNL bestie Nikki couldn’t attend as we’d originally planned. The incredible good fortune/good travel gods smiled upon us, and Deb flew to MKE. We then road tripped it to Indianapolis for that 95-degree evening show. Deb’s not a BNL weirdo like I am and maybe flying somewhere to drive somewhere else sounds inconvenient and logistically nuts to you, but we had the best time. You could totally tell how much Tyler, Ed, Jim, and Kevin missed me. You know I had to say it. . . In seriousness, the temps dropped just before Barenaked Ladies took the stage and the concert was magic. Home.
Yeah, that dress got a lot of play last summer. Graduation AND concert wear. So very versatile.
Also July
It’s my story, so I’ll tell it in my usual don’t-stick-to-the-formula style. July was a month of reunions, the aforementioned road trip and the one featured below with my college friends.
In 2018, we five joined forces in New York City, for our kinda 50th birthday-ish celebrations. This summer we were a foursome, with Julie attending the birth of her first grandson, who arrived pretty much the moment she was to have arrived in Holland, Michigan with the rest of us. Because my friends are amazing, they’d accepted my trepidation related to traveling too far home in light of my husband’s accident and agreed to stay close to home. Well, close to MY home anyway, definitely not Sue’s. We spent three nights on the Lake Michigan shore opposite mine, walking, talking, sipping fine beverages, and dining from only the most beautiful charcuterie boards. The ladies of BS Travel never disappoint, and if you feel like you wish you had friends like mine, you totally do. Who’d have thought that a bunch of hard-working girls thrown together at Monitor Hall in 1985 would be hanging out still more than 30 years after graduation? Look at these beauties to my left, captured at the Red House last summer!
August
My older son matriculated at the University of Minnesota Twin Cities in August. Our leaving him at his dorm prompted the fastest I’ve almost-run in a decade–I could not get to my car fast enough after our goodbye. Abandoning him there at The U, believing I’d just committed a grave, grave error literally hurt my heart. Like most parents delivering their most precious cargo to their stinky college residence halls, I came to learn and even believe that my child would carve his path and make a way. He proved me right at parents’ weekend and again at Thanksgiving when he arranged transportation to and from Minneapolis, my credit card number being the only support he needed. I snapped this photo on Huron Street en route to the freeway entrance ramp as we headed out of town at the end of August. *sigh*
September
September sucked a real lot, but there was this radiant spot. My baby’s football season opened with a crushing loss then a dominating win, then he was sidelined for two games with COVID. Generous, sharing kind of kid he is, he shared the dreaded virus with me. The exhaustion and brain fog are for reals and 4 days off from work did not feel like enough! I believe that were it not for my vaccinations, I’d have been one of those individuals hospitalized or worse as a result of the coronavirus. Man, was I sick! Zero stars.
Anyway, this picture of my sweet/badass boy and his grandmas was taken right after the Huskies’ homecoming victory. Shortly after this W, he sustained a season-ending injury, tearing his left labrum in two places. He was somehow able to avoid surgery and is recovering through physical therapy and youth and vigor. He missed half the season, but was still recognized as a second team all-conference outside linebacker! When he asked his coach how the hell that happened, his coach replied, “They know who you are.” If my heart could have melted, it would have.
October
My hubby couldn’t have scripted a more picture-perfect day for our now-annual circumnavigation of Geneva Lake. This was our group early in the AM and five of us were still in the picture around 5:30 in the evening as we closed the circle of approximately 23 miles. When you consider that my husband almost died three years ago, this is a pretty remarkable feat. When you consider how stinking old I feel most days, 23 or so miles is a pretty remarkable feat.
November
I chose this Snap to represent November because my part-time employer required I submit a photo for their tracking and payroll, I had a sufficiently good hair day, and to showcase the magic of Snapchat filters. I haven’t looked this good since, well, really ever, but I tend not to think terribly well about what I see in the mirror. I’ll take this graphically-altered one. This year I took on a side hustle, working for a local company that coordinates land logistics for cruise lines sailing the Great Lakes and assembling/shipping Advent boxes representing specialty snacks from a number of Midwestern states. It’s fun work with fun coworkers and I almost never get yelled at or take work home with me.
December
It’s the phone call you never want to receive: “Mom, I was in a car accident.”
I’m not gonna make you wait around for it, yes, my son is OK. He walked away with some abrasions, a couple cuts and bumps, and an intriguing puncture wound. But that was it. Somehow, those minor contusions were the extent of his injuries. The car is totaled.
When he initially called, I didn’t hear my son’s voice, but I heard in the background a woman shouting “Are you a student at Reagan? Get out of the intersection, honey.” Words like that anyway. Once I got as much of the story as I needed to know I had to get there immediately, I bolted from my office, racing (as safely as I could possibly drive) across town, my mind whirring exactly as I remembered it feeling immediately after my husband’s accident.
Driving back to the south side, I was able to connect with my kid’s best friend. His mom, my friend Moriah, relieved the mom whose name I’ll never know, the Reagan High School mom who stayed with my boy in the immediate aftermath. Moriah took over and stayed with my boy until I got there. Actually she stayed with us both until the police arrived because apparently I was trembling pretty significantly and probably didn’t seem to have my shit together, which makes sense because I definitely did not have my shit together.
The car was stranded in the middle of the major intersection nearest his high school and I went jelly seeing it. But then I saw my son and my friend together on 20th Street. Moriah hugged us both and I strung together a lot of words that may or may not have made too much sense. I cannot say enough in gratitude and thanks to her for dropping her agenda to sit with my son. She and I joke about being the other’s baby daddy and she was that and more for me that morning. With the few details my kid recalled from his conversation with the first mom on the scene, I hit up the school office asking if they might know who this student was. I wanted to relay a message of thanks to that mom, who did for my kid what I’d have done for hers or any other child who’d just been clipped by a large, flatbed truck. Thanks to Reagan’s head secretary, I was able to thank Mystery Mom.
I learned from my son’s MD diagnosis, later from the aftermath of my husband’s accident, and again from my son’s car accident experience that people show up with their best when you’re at your worst. This mom. Moriah. The random guy who stopped to put orange cones around my kid’s car and sweep debris from the intersection while we waited for the police. The officers on-site. They all helped when they wouldn’t have had to. The Best. Man, am I tired of being at my worst though!
December had already been a major B-word with some major BS-word related to my husband’s injury and workers compensation. If you think an accident ends with hospital discharge, you are woefully and naively mistaken. That’s all I can say about that situation. I will add however, that if I seem distant or distracted or just not as nice as I used to be, I am, I am, and I’m not. Your observations are accurate. I want to be better, and I’ve got a plan to start feeling better. Maybe it’s more like a plan to plan to start feeling better, but that gossamer thread is more than nothing at all.
Vince Lombardi said something like it doesn’t matter how many times you get knocked down, but how many times you get back up. 2022 is closing with me coughing nonstop and violently, so maybe I’ll lean into the Lombardi logic as we cross the threshold of a new year. Happy 2023 to you all. Sorry I didn’t send a card. May your random collection of photographic moments evoke the contentment (most of) mine have brought me.
Some months ago I shared a booze-fueled, rant-y post about how the workers compensation insurer managing my husband’s injury case mandated an independent evaluation of his hearing. They had previously questioned his need for bilateral hearing aids given that only one ear was torn from his head. How do these people live with themselves?
I didn’t make it to med school, but massive head trauma is kind of a global thing as are its effects; though it can result in specific loss, its path may be less predictable than say a stroke or aneurysm. My husband can get real ornery at accident-related doctor visits, and this independent hearing evaluation and ENT consultation brought out the flattest of affects in him. I won’t say he was rude because I have a pretty good idea how he felt, but I’m sure he was perceived as rude. Anyway.
We received our copy of the doc’s independent evaluation in the mail this week therein stating his belief that hearing loss was secondary to a medical history significant for an 8-inch open flap injury to the right lateral side of the head with exposed skull. The right ear was almost completely avulsed. . . complex multidirectional fractureof three segments of the temporal bone, hemorrhagic debris in the middle ear cavity. . . a large degloving scalp laceration to involve nearly the entire scalp with retained foreign bodies. . .right pulmonary contusion, left pulmonary contusion, left 3-4 rib fracture, right 8-10 rib fractures, occipital skull base fracture. . . liver contusion, left scapular body fracture, C6-7 spinal fracture. . . and facial nerve paralysis.. . no history of previous hearing loss. . .
Yet somehow he lived.
To have to endure treatment like this? This is what this insurance company questioned?? To what, not pay for hearing aids?
Reading his history again slammed me right back to that Emergency Department. Why is this set of memories so relentlessly specific and vivid? I am not the same person I was before his accident. Expressly revisiting it again rips off the band-aid and immerses me into a brine bath every single time. I just don’t think I’ll ever get over it. I miss pre-May, 2019 me.
Cocktail Hour
The details are irrelevant, but my mama heart broke a little bit last week when someone approached me to say I needed to teach my son how to hold a wine glass (obviously it was filled with WATER because he’s still too young to drink legally. . .). This person, I believe in good faith and without malice, relayed his observation that my kid’s death grip cracked him up, how he laughed at the way my son held onto the entire stem of the glass like his life depended on it. That’s pretty close to verbatim.
I quietly responded that because of his muscular dystrophy, his grip strength is poor. That I think he holds on tightly because he knows he drops a lot of things and this is how he compensates. An apology followed. To be clear, I truly believe he thought he was helping, maybe so that other people wouldn’t tease my kid in the future. Not tease him about the MD, but about the way he apparently looked like a clod in the way he held the glass. The “clod” part’s not verbatim, that’s mine–what’s a good word for that?
But it stung. If someone who knows my kid feels comfortable to call that out, it made me wonder what other people who maybe aren’t so nice notice, think, or say to and/or about him. In the grand scheme of life it wasn’t a huge deal but provided that view from the outside that I’d forgotten. Maybe tell him gently but directly or maybe just who cares about the way another person holds onto a glass?
Ableism
I recently presented to my Speech-Language Pathologist colleagues on the topic of ableism in stuttering. I didn’t love my Google Slides theme, but by the time I got most of the meat in my presentation, I didn’t feel much like reformatting, so cutesy quotation marks and stupid font theme won by default.
Check that definition though.
In it, I admitted to being an abelist parent. Intellectually I understand my son’s disease process but I can’t help believe and feel inside that things would be better for him, tasks of everyday living would be easier for him without muscular dystrophy. The wine glass incident shed light on the differences and challenges MD presents. Yes, my son HAS been provided support and summer camp opportunities because of this dreadful diagnosis and for that I’m sincerely and will be eternally grateful. I don’t view my child as less than, his way of being isn’t wrong or bad or unfortunate, and holy crap has he grown up since heading off to college!! But any day you give me the choice of does he have MD or doesn’t he? It’s a hard no. The hardest of passes.
I guess I’ve got some work to do. The whole time I was prepping my presentation, I was avoiding looking in the mirror about my ableist beliefs about my own child and I knew it.
Go Away!
One of the bakers at our grocery store told me to “go away” the other day as I grabbed a cake from the bakery case. For once in my life I didn’t stand agape in stunned silence or skulk off muttering WTF-y kinds of comments. I looked her in the eye and asked “Did you just tell me to go away?” which was apparently the exact right thing to say. She stood there, kind of staring at me, not knowing what to say then asked me how the weather was. It was a lovely November afternoon, in case you were wondering.
My initial reaction was pretty much WTF?? Can’t lie–I thought about speaking to a manager or emailing the store later. I reran that exchange in my head on a loop til the next morning, still measuring the degree to which I’d felt insulted and then I talked to my friend Nicole who has the BEST laugh and we laughed and laughed! In the end, I did nothing but share my story with my coworkers and later on social media. It WAS funny. She busted herself out saying something out loud that I’ve managed to keep in my head for years. I mean, she knew she screwed up and I got a big laugh out of it. And let’s be honest, ALL OF US have at some time in our work lives, almost said that out loud ourselves.
The Free Turkeys of the University of Minnesota
To my American friends, Happy Thanksgiving. To my friends and readers outside the US, have a great Thursday. I’m thankful for the generosity of your time over these years. I’m thankful I can still put on a decent spread for Thanksgiving dinner. I’m thankful for incredible friends across the globe and across town. I’m thankful my children are safe and cared-for. I’m thankful we won this round with the insurance company. I’m thankful I have enough.
And I’m thankful I’m not a wild turkey in late November! This rafter of turkeys hangs outside my son’s dorm–I swear I am not making this up. Turkeys are neither intelligent nor regal creatures, but if you’re roasting one tomorrow, I hope yours is delicious.
I did all the right stuff for 2-1/2 years. I stayed home. I wore a mask. I cleansed and sanitized my hands so often they cracked and bled. I even somehow managed to evade COVID when my husband, with whom I shared a bed right up til his diagnosis day, succumbed back in June.
Testing my little guy proved a bridge too far.
We returned from the Twin Cities late August having delivered Child #1 to The U. To say that my immune system and every other element involving my body, heart, and soul had been taxed and tested to its limit is underselling the emotional wringer that dropping your firstborn at college is. I was trashed. I was vulnerable. Little did we know upon our homecoming that our younger son had been exposed–of course, he didn’t know he’d been exposed until he came home from school, utter garbage on Thursday that week and by then, well, this is why COVID is still a thing. He tested positive Friday morning. The boy lit up that test strip like a Christmas tree! By Sunday evening I was achy and my throat began to tickle.
With the hubris of well, the hubris of the comically uninformed and willfully ignorant, I became convinced I would be impervious to COVID. I hadn’t endured even the faintest hint of a sniffle since my husband’s accident and I wore that badge like it had been an Olympic medal hung around my neck. Simply put, I (not really but a little) believed I was just never, ever, ever going to be sick again. I figured the universe was like, “Girl, you’ve been through a real lot the last couple years and you’ve got a metric ton to manage as a result of that never-ending shitstorm, so we’re just gonna give you a pass on the common cold, the flu, and oooooooooobviously you’re never gonna get COVID. You’re gonna be one of those people who participate in some ‘how’d they never get it?’ study” fifteen years from now.
I kinda actually believed it. Well, I wanted to believe it anyway.
Twenty-one days past my positive test result and twelve past my negative, I remain bone weary. A slight dry cough rears its ugly head a few times a day, but that, with the help of an industrial size bag of cough drops is manageable. It’s the tired that’s killing me. I. Am. So. Tired. And I miss my grey matter firing on all cylinders. The brain fog is real and I think a person can’t really understand what that means until it’s experienced. You wouldn’t believe me, but then you would.
I don’t *think* I’m a long-hauler, but my bounce-back trajectory is a long, minimally arcing up line, not the spike I’d expected and (damn you, hubris) assumed would be my fate.
On the bright side? I can stay awake all day long now! I went to yoga class, and met my intention to finish class. Twice! I ran two meetings where I was the one in the front of the room and probably provided clear information and correct answers, buffered by my ace comedic asides. Probably.
I didn’t talk much about getting got. I didn’t bring anything new to the discussion really, but I’ll say this—to those of you still holding tight to your anti-vaccine/COVID is a hoax stance, please consider science. I was knocked out by my vaccines and booster, for which I felt extremely grateful (having access to the vaccine, not the ague, though compared to death is a TOTAL WIN). I don’t know if this necessarily follows, but I think if I’d contracted COVID prior to the vaccines, I’d have been in a real bad way.
If I had to cave to the corona, my timing was good and my timing in this world sucks about 98% of the time, y’all. Maybe I should buy a lottery ticket? Maybe I should be quietly thankful I reached retirement age in otherwise good shape and good health.
I can retire, it’s official. I can’t retire for reals because I like to do things like eat and pay my mortgage, but it’s pretty sweet knowing that my career days are numbered. It makes the days I think about work-crying less tearful. It makes the frustrations less frustrating. It makes quarantining away from work five days a less devastating hole from which to claw my way out. It’s the light at the end of that COVID recovery slope.
It’s the 21st night of September and if you don’t immediately bust out singing Earth Wind and Fire’s September when you hear those words, are we even friends??
Just prior to giving birth to my second child I distinctly remember reflecting that those moments early in my labor were the last moments we would share as a family of three. I had no idea how bringing home a new life would completely alter the dynamic my husband, toddler, and I had created, but I felt that with this incredible addition there also would come an ending of sorts.
Nearly seventeen years after my second baby completed our family, we loaded up our Honda with most of our firstborn‘s belongings, prepared for the six-hour trip to his dorm at the University. My husband, doubter of the Tetris acumen I developed in the late-1990s, questioned whether all our kid’s stuff would fit in our mid-size SUV. He questioned it to the point of a friendly little cash wager (which, OK, fine we share a bank account so it’s not like I actually won $50 but I TOTALLY won the $50!).
His dorm at The U is 299 miles from our home, 299 being an important distinction for me as being definitely not 300 miles from home, but only 299. It’s my mama’s brain version of the game every retailer at which you’ve ever shopped plays with our collective minds: Oh, this sweater costs $54.99, such a bargain at that, no? This sweater won’t set you back a whole $55, no, no. It’s perfectly priced for you at a mere $54.99. You see where I’m going with this. My kid now lives 299 miles from home.
My baby posted this on his Instagram story the night prior to his bro’s departure and it nearly wrecked me.
Standing outside my big kid’s bedroom door the morning of, eavesdropping on my sons’ final goodbye and doing everything within my power to mind my own damn business, which I DID, mind my own damn business that is, nearly wrecked me.
Watching my big kid hug our idiot dog goodbye nearly wrecked me as did watching him take the deepest of deep breaths as he took his last look around the house before closing the door one last time. Ooof, Monday morning was a tough one.
Tuesday was worse. Monday night’s dreadfully inadequate period of sleep (Hilton, your pillows were bricks that only 50% of Room 517’s inhabitants enjoyed) left me more fragile than I’d like to leave on display. Early Tuesday, we picked up a few last minute items for my son’s dorm, then delivered and set them up in his room. Too soon it was time for the REALLY big goodbye–the goodbye parenting websites write so achingly beautifully about, the goodbye over which flowery memes using cute fonts are created and shared across parents-of-kids-going-to-college pages, and you know what? It’s every bit the beautiful and terrible moment you’re told to expect.
I made our kid walk us out via the front lobby of his dorm, ostensibly to give us a tour of the building, but more so that my kid wouldn’t have to hide from his new roommate in horrified embarrassment at his mom’s inevitable fit of tears. Everyone–everyone–knows I’m a cryer. Whether I’m happy, angry even, touched, flattered, when I’m witness to the tears of another person, and especially when I’m this once-in-a-lifetime jumble of undefinable emotions, I fully expect to cry. A total game-day decision it was exiting out the front door, but we made our leave, to me surprisingly quickly, leaving no room for maudlin in the dormitory lobby. Hug-hug, hug-hug, we love you, we’re proud of you, this is gonna be so great, blah, blah, blah, and we turned our backs.
His dorm is near the parking structure and we could not reach our car fast enough for me. I’m not sure, but I am guessing to passersby I looked like a participant in one of those weird race-walking events. I couldn’t get out of there fast enough. What my mama heart wanted was to turn around and go back, which is exactly the opposite of how this goes. So we took the elevator up, not back, returning to our now-empty car parked atop six floors. I wanted to peel out of there, but my husband, thank stars, encouraged me (us) to take a moment before zipping off, suggesting maybe we just sit and breathe and wait and talk/not talk for a few minutes. I don’t know, I have no idea which words he actually used. I just know that I cried while I envisioned every worst case scenario event, big and small, coming at me/him at once and at a hundred million miles per hour. I’d never felt so scared for my child in his life–and let’s be honest here, he’s had some pretty rare and scary things happen to him in his eighteen short years.
I took this photo of his dorm from the top of the structure. I don’t think my husband was truly worried for my sanity or physical safety, but when I walked to the edge of the structure, he did kinda give me the, “What are you doing???” tone. It’s the stupidest non-photo photo ever, but this is where my not-baby lives now and at that moment, I needed a picture of it. I didn’t say it made sense!
Because even when it’s the absolute right thing for your kid, make no mistake people, it is hard as hell to turn your back and hop onto that entrance ramp to I-94 East. My child gives little away emotionally, but I know he was feeling some kind of way he’ll never share with me. Maybe college freshmen have their own version of the big parental goodbye memes and blog posts? I kinda doubt that actually, but I do believe this goodbye represented a significant, recognition-worthy shift for him too.
A few days later and he’s fully engrossed in Welcome Week activities, Snapchatting the squirrel on the field at the football game, sharing buckets of cookies at the State Fair (thanks for the pro-tip, Cousin Lauren, whom I love to the ends of the earth). Heck, he’s even texted me about laundry (and a lost debit card. . .). He did laundry, you guys!! He still needs his mama, but he is figuring it out. Scratch that–he still needs his mama, AND he is figuring it out. I read something on one of The U’s social media feeds last Thursday, and went downstairs to ask my kid about how his day was. At The U. 299 miles from home. . . Weird how stuff hits you. I am figuring it out too.
I miss my big kid. I’m immensely proud of him for getting there and while I believe he is where he is meant to be right now, that doesn’t mean I don’t miss him being here. I realized in making dinner that first night back, that I probably wouldn’t need to continue to make double rice portions, and probably could buy only one gallon of milk a week now. It’s weird how stuff like doing less laundry sneaks up on you to punch you in the gut.
I revisited some of the “words of wisdom” (read wisdom with heavy tone. . .) I wrote to my son at graduation and it turns out I mean them just as much now as I did then: I don’t expect you to have all the answers as you head off to college, but I hope you keep asking questions. I can’t wait to find out what it is that lights the fire for you as you move forward in this world. I’ve got this feeling that you are exactly where you are meant to be as you head to a university 299 miles away from home. I can’t imagine how quiet our house will be while you’re at school, but I know that you’ll be forging YOUR path, the path you’re meant to make and follow.
We’re back to being a family of three here (not really but you know what I mean). It’s gonna take some getting used to. Maybe collecting my $50 will be a good start to that adjustment, huh?
Is what I said to my husband just now after sifting through the day’s mail.
Actually what I said was, “I’m gonna go sit outside til my head doesn’t feel like it’ll fucking explode and I might get a little drunk, not gonna lie.” But obviously that is too cumbersome a blog post title.
My delicious Blue Crush is already (and quickly) half empty. I can’t possibly refer to it or my attitude as can half full after today’s not- very-special delivery.
More BS from the insurer representing my husband’s employer arrived in today’s mail. He’s being sent for an independent evaluation of one of his many mangled body parts. Apparently having his ear and part of his face traumatically removed from his skull did not provide compelling evidence as being causative for the disability he has incurred, so the insurer has summoned an outside evaluator apart from my husband’s sizable medical team.
I began this blog writing about my experience as a confused, saddened parent of a child newly diagnosed with a progressive neuromuscular disease. Writing provided a desperately needed outlet for the fears and crush of emotions that diagnosis created. Never would or could I have imagined that then-11-year-old heading off to a Big Ten University. You’d think THAT would make a super great and timely post one week before launch, wouldn’t ya?
Instead it’s me feeling manipulated and cheated by the insurance company for my other disabled family member. AGAIN. STILL. It’s supremely shitty to continue to force disabled people (and trust me, my child would have chosen MD no more than my husband would’ve chosen his buddy run him under that truck) to PROVE their disabilities. It’s cruel and sadistic and just a part of everyday fucking life for us.
Respectfully, I ask: Are. You. Fucking. Kidding. Me?
(OK, perhaps not too respectfully. Fine.)
In case you wondered, the can is now empty. Not half empty: drained. The Blue Crush is crushed. Cheers to the maladaptive coping mechanism I needed to continue fighting the good fight!
My younger son’s football team got crushed in their season opener last night. Not in the little “yeah, they got beat” kind of way, but in the “they got their asses handed to them” kind of way. After a good defensive first quarter, it was a pile-on the rest of the way.
Somewhere in the mid-second quarter, the kids behind us started screaming (and yes, I mean high school freshman maturity level SCREAMING) about how bad their own team was and how they should have gone to a different high school because the other school has better sports teams. After a point, a member of the school coaching staff actually herded these and other students over to create an impromptu “student section.” This is purely my assumption here of course, but I’m guessing she may have been motivated by these kids’ volume and profanity-to-meaningful-nouns-and-verbs ratio. It was shameful, really, the behavior of some of the students. Prior to the coach’s moving scheme, I actually moved away from these students to sit elsewhere, so annoyed and ashamed was I.
I knew it would be a quiet ride home once we picked up our son. My boy takes on the weight of the world, strong and silent kid he is, and I felt pretty sure he’d absorb more than his proper share of the loss. He didn’t play a great game, but this wasn’t a one-blown-play kind of game. We advised him to feel bad for as long as he needed to that night, to consider what lessons might be drawn from his play, and come up with a plan to improve. OK, first actually was to feel bad as long as he needed to, then OMG take a shower, then consider what he’d learned.
Not long after his shower, which is where all my best ideas are incubated, my kid recognized a few ways he got beat by his opposing linemen. He understood what made them better last night and identified moves he needed to add to his practice. After dinner, he created a Snapchat group with the guys (not sure which guys, which positions, but guys he felt he needed to communicate with) and shared with them his observations. THAT, my friends, is leadership. THAT is character.
My kid attends high school in the most highly impoverished district in our state. He isn’t the kid attending football camps or mental toughness seminars all summer long or playing on a team clearly violating the state athletic association rules about when kids are allowed to practice. They don’t have a $6 million locker room–they don’t even have a football field on which to practice! He wasn’t the only one doing so, but watching my kid prop up one of his teammates when he himself was taking a beating AND getting screamed at by his own “fans,” says everything you need to know about my kid.
If he never makes another tackle in his life (he will), if they lose out the entire season (they won’t), he can walk off that gridiron late in October with his head held high. Character doesn’t show up in the W-L column, but no matter what he does in this life, this kid will always get the win.
Second row is not the front row, but the second row wasn’t too terrible either.
Actually, I won’t. Or more likely can’t. Nearly three years after purchasing them, my Last Summer on Earth 20202021 2022 ticket barcodes were finally scanned last Monday night. After their tour had been delayed twice, my Barenaked Ladies, et al. took the Chicago stage. I spent Canada Day evening at their Indianapolis concert, and NO, two concerts in one week is not too many. It’s not enough, frankly, so back off, man.
The tour went on sale in the fall of 2019. If you’ve been following my story for any length of time, you’ll remember that 2019 wasn’t exactly a banner year at Chez Weir. The accident remains one of those “just yesterday and also a million lifetimes ago” deals. For most of modern humanity, 2020 stands alone as being the worst year on record, but for me 2019 will likely always sit atop the podium of personal disaster. Please, please, please let it be our worst year–it HAS to be! I’m not so narcissistic a human that I view my own period of devastation/change/sadness as worse than the suffering of the global pandemic and the loss of millions of lives. Jaysus, even I am not that selfish! It’s just that 2019 was really, really, really tough for my family and me, and I’m still in recovery. 2019 was not the year for me to be buying big time concert tickets, and it’s good to get a little help from your friends is what I’m saying.
The pandemic has illuminated to me just how much a glass half empty gal I am. I’ve begun to expect disappointment so that I don’t much expect good things to happen. But they do, good things do happen. And even in a world where women’s rights have been stripped, separation of church and state has apparently left the building, mass shootings are de rigueur, and war atrocities barely earn a passing glance anymore, good stuff can and does happen.
Being at a concert allows me to forget the rest of the mess for a while. When you’re up front, being up front is all you can do. There’s no multi-tasking when your favorite musicians are bringin’ it seven feet away from you! There’s nothing that can’t wait for those 90 or so minutes when you’re fully immersed in the lyrics and melodies that define most of your adulthood. During the shows, no one needs me to do a thing or play a role, or help them in some way. There is nothing to do except dissolve into the music. And I did.
When the band plays the Big Bang Theory, those in the know understand the concert to be winding down. It’s about that time my pre-sad-that-it’s-going-to-be-over despondency begins to wash over me–it’s the windup to the it’s gonna be over too soon pitch, and yes, it’s a sad moment in the midst of joy (see, I told you I was glass half empty. . .). My hardcore BNL friends and I experience Post-Barenaked Ladies Syndrome after the shows we attend. PBNLS is real, yo, and you know it. Maybe your PBNLS is spelled differently, but you know that feeling of letdown after you get to experience something you’d much anticipated and looked forward to, right?
But for the first time in maybe ever, I’m not sad my shows are over–I’m grateful to the ends of the earth they happened. Spending an overnight in Chicago (soundcheck!!!! OMG, thank you Adrea and Leslie) with Ann was magic, even more magical than the miracle of NO traffic getting into the Loop. Getting in a road trip before she moves out of my time zone again next month with my BFF Deb, was a gift (Nikki, I’m sorry you couldn’t go and #ketchupandmustard forever, but thank you!!!!).
There are wrongs that must be righted and fights I’m going to have to fight in the days and weeks to come. But not last week.
Last week I didn’t have to plan or get my son to his university orientation five hours from home. Last week I didn’t have to worry about my husband’s COVID status (he endured mild cold-like symptoms and is since decidedly negative) or my brother’s, whose run with COVID is no walk in the park. Last week I didn’t have to work either of my side jobs. Last week I didn’t have to drive anyone anywhere–OK, well technically I did drive us to Chicago and Indianapolis, but I didn’t have to chauffeur anyone to the local hospital for post-surgical follow-ups or arrive hours early for baseball warm-ups. Last week was all about the return to semi-normal with my Canadian musical heroes, these four incredible talents who have carved out the brain space to remember me and show me, some rando weirdo fan, kindness, humor, and concern. Being at a show made me feel a bit less broken.
I’m finding it hard to give voice to my inner voice–I can’t find the right words and string them in the right order. Last week reminded me that even though I paste a smile on my face, performing the role of functionalmiddle-aged woman and mostly failing at it, indeed I am one of the lucky ones.
I’m paraphrasing generously, but my favorite singer spoke about music being an outlet to channel feelings. I don’t write songs, but I concur with complete certainty that writing (in my case, here in this silly online forum) has helped me work through my feelings. Talk to someone, Ed implored, introducing Live Well. He bared all in sharing how his therapist provided the perspective and words that changed his life. I talk to you here, and it’s not enough exactly. But it’s not nothing.
It’s inconsistent to feel happy in a world that’s on fire. I’ve been fighting on many fronts hard and long, yet still I feel I’ve done nothing near enough. But I’m exhausted mentally, emotionally, and yes, even physically. There is an emerging body of research recognizing good and fun as a necessary alternatives and coping strategies to maneuver this scary world and accompanying barrage of doom-scrolling. I’ve got lots of studying to do, but I definitely earned a 4.0 GPA for my efforts last week.
Last week? It was pretty good. In a word, how I feel about the tour? To steal a word from Tyler: grateful.
Greater Than Gravity 