Talk about Ableism: “What CAN You Do?”

Excerpt from the book “To Be Interrupted: One Mama’s Journey to Bring her Daughter Back from Traumatic Brain Injury”

I wrote this some time ago, but it’s about time it saw daylight. Thanks to my writing group for helping me with this piece!

World, meet Moon Dancer. Moon Dancer, world.

Can you see “The Price is Right” in this parking job?

I vividly remember my occasional (read: normal) childhood sick days in front of 1970s daytime TV, announcer Johnny Olson cheerfully burning the value of the “braaand neeew CAR!” into my bored child brain - bored, but lacking for nothing material. How much more keenly I would empathize with those ecstatic game show contestants now! 

Well, pictured is OUR brand new car, today - only one year newer than my trade-in - but with a moon roof, a demonstrably doting first-and-only owner, and our local Toyota dealer’s expert detailing, it might as well be brand new. Glittery “Dark Forest” green - it even matches our home. Funny, Rav4s didn’t register with me in recent months of casual car-hoping. Now, she’s all I can see. Moon Dancer is her name. I peek at her through the living-room window. I check the mail again, just to pet her as I walk by. There should be nothing negative about this boon. Yet … something unwelcome is rattling around in my brain. 

A lot can change in a week. 

A reliable car is probably the most valuable token in The Game of Capitalism we could score right now, but this time last week, I didn’t think winning one was in the cards. You see, for four years now, ever since two traumatic brain injuries (TBIs) in 2019, sick days have been the norm for my daughter, Elspeth, now 16. This is the kiddo who impatiently looked up from her cutout-and-color owl art project, gazed out the kindergarten classroom window and thought, “This is useless. I need to get a JOB.” This is the teen whose pre-teen calendar was (over!) filled with activities, goals and achievements - right up until March 16, 2019. Until that day, sick days everyday were anything but normal for Elspeth. 

In TBI and other complicated (under-researched!) conditions, the name of the game is “Get Well Before You Get Broke.” When Elspeth’s brother, Aslan, and I fell sick with LongCovid the very next year, in 2020, that game got tricky times three. Now we all three had POTS (postural orthostatic tachycardic syndrome – defined on MEPedia as “a condition in which a change from the supine … to an upright position causes an abnormally large increase in heart rate” with a host of symptoms – and (too much) more. 

This time last week, Elspeth and I were in Chicago for our second appointment with Dr. Deborah Zelinsky. Dr. Z is treating Elspeth’s TBI with special glasses designed just for her, glasses that re-route her brain off damaged pathways. 

We made it. Of course I included Sand Dancer in the portrait.

But, I digress. Last week, the day before Chicago, I was still getting over a li’l PTSD episode. The “maintenance required” light had come on in the periwinkle Scion we inherited from my late mom, Nana. The Scion endured significant appropriation and likely neglect from her son (can we say “her son,” not “my brother,” please? Yes? Good.). Nana’s Scion enjoyed regular maintenance in our several years with her, but suddenly the “check oil” light started illuminating on sharp turns. Then, after two quarts of oil added, this light. Uh oh. 

That time we lost our knight in The Game of Capitalism

But why the actual panic? Well, three months prior, our beloved, reliable sand-colored 2011 Prius, “Sand Dancer,” bravely saw us all the way across the country from Washington state to Chicago, to our first appointment with Dr. Z. Then, abruptly, it went into death throes the next morning: Downtown, on Chicago’s Miracle Mile, no less. Dirty sweet smoke, bodywide shakes, the whole shebang. We were two physically compromised women in an actively dying car in the third largest city in the US. 

Sand Dancer’s last flight, the night before she died in Chicago. But she got us there safely!!

That night, after I finally wound down enough to sleep, at 2 a.m. my body jerked out of my couch-bed at our Airbnb, thrusting my right eyebrow into the heavy wooden coffee table next to me: Concussion. How apropos, a mama suffering a concussion on her child’s TBI treatment trip. We came to the conclusion my body was saying “You are going to slow down. Now.” 

Obviously, my body didn’t get the memo about our car. 

Several thousand (more) on the credit card couldn’t save Sand Dancer. That first trip to Chicago, which we took by car to protect Elspeth from possible internal repercussions of airplane flight in her state of compromised health, included flurries of texts to my one friend who could give car advice: Josef, in Germany. Josef, our friend through Elspeth’s medical GoFundMe, just happened to be an aviation engineer. Handy! Car-savvy Josef coached nerve-wracked me on haggling with the Chicago Toyota dealer Sand Dancer had limped into. 

Chicago mural. I think we were probably jokingly rewriting this “Make NO Plans,” in those days!

Finally, after weighing and pricing our poor options with the dealer and rental cars, we risked a last-minute flight home - because, what else could we do? First, though, we dumped everything we couldn’t carry onto the plane into the dumpster behind Enterprise. Well. I put the sleeping bag, pillows and food next to the dumpster, hoping someone who could use them would see them. 

Elspeth hamming it up as we dump everything in our rental van before our flight home, and I try not to cry over Sand Dancer, an inanimate object.

Considering the thousands we’ve wracked up on the credit cards just since June, trying to get Elspeth, Aslan and I healthier, and stay safely fed and housed, a little “maintenance required”-light PTSD was understandable. So, before we left for this second trip to Chicago, I forgave myself the night of stress it caused, scheduled an appointment with our local Toyota service department, and put car trouble out of my mind until our return. 

And so, back in town last Friday, I’m sitting in our local Toyota dealership service department’s packed waiting room, Kpop tunes in my ears, FloMask on my face, hoping the oil change will do the trick, ‘cause I can’t afford the hourly mechanic charge to check for an internal oil leak. My phone rings. 

Graffiti detail, Chicago, 2023.

The relative comfort of isolation.

So much of this last four years has been endured within the walls of our house, unseen. Chronic illness has a way of clearing one’s life of everyone, at least if you’re not in the right tribe. Obviously, we weren’t - well, except for our own tribe of three. “Endure” is the right word, but I wouldn’t want to go through this with anyone but my two kids. If we could laugh, we did - about the LongCovid refrigerated deli items we inevitably “put away” in the kitchen “thing” drawer, only to find them later, warm; about the way we perfected the ableist-doctor appointment walkout; about living with daily pain, being relieved when it was below a level 6 (or 8, even). I’m only now actually trying to open up and find other people I know must exist - people who get it, and want to get it. 

Most of the entire chronic illness experience just does not compute for normies in our world. Traumatic brain injuries in my daughter in 2019 - twice, suffered at kids’ camps, no less - triggered a host of syndromes that sent her body into a downward spiral. A virus can do the same thing - and did, to her brother and I, one year later. I will spare you the technical explanations - and spare me the glazed eyes that inevitably stare back at me when I do try to explain. I get it; my wake-up call (fall) was waking up on the hallway floor, the kids’ guitar having broken my head’s fall upon my abruptly halted first attempt to rise out of bed. “Okay,” I thought. “POTS means no more skimping on water. Got it.” 

“They don’t exist,” is what most folks (and too many MDs!) say about our not-so-rare health conditions. “Got it?” 

And, by extension, if I won’t shut up about them (which I won’t), neither do I. 

I think about this stuff, about how I exist in orbit with my species, feeling like an alien as I do. Honestly, I haven’t spent enough time being the sun in my own galaxy. I’m thinking that might change my trajectory in a good way. 

Our beloved Chicago Nordstrom’s, where … Paco? Pablo? Gosh, I wish we could get back to him for a consult, he was so sweet. Anyway, he helped Elspeth choose the one souvenir she really wanted: A nice blush.

This time last week, I’d just finished lamenting over yet another chronic illness roadblock: Car maintenance. The reasonably priced, trustworthy, independent Toyota shop in town closed their waiting room “after” Covid, and refuses to open it for anything, my protests be damned. They are not in a safe neighborhood - no cozy coffee shops nearby - and with my PEM (post-exertion malaise), it could be dangerous for me to walk around waiting for my car. It could send me into a crash for weeks, or months, thereafter making even the slightest exertion leave me short of breath, limbs and brain slowed to moving like they’re slogging through marshmallows, for who knows how long. It’s wintertime now, no less. And Uber is not cheap. At this writing, we have about $27K in debt on our credit cards - so, $16K in credit left with which to try to heal - at a current interest of upwards of $180 per month. No bueno. 

The other affordable independent shop with a waiting room has served me well for simple oil changes, but their more-complex-jobs shop doesn’t enjoy the same good reviews, and now I’m concerned the Scion has an internal oil leak. That leaves The Dealership.  

Love that Chicago attitude.

A few years ago, before body-by-Covid, I went on one date with an evangelical Christian wolf in the sales department of The Dealership. If memory serves, I was even reading a copy of “The Book of Ruth” teachings by that preacher my late husband loved - that “Thru the Bible Network” guy, J. Vernon McGee - when he started circling me as prey. I’ve blocked out his name in my mind; still can’t recall it. That date should have ended with his nose bloody. So. I’ve avoided The Dealership until now, but Disability Rules force my hand. 

So here’s the deal. 

Back to Friday. I’m parked in the waiting area, happily masked, earphones in my ears, Kpoppin’ away when my cell phone rings. I don’t get many calls these days, so I’ve never talked on the phone using the earphones. I give it a try. It’s Toyota! Would I like to trade in my Prius? Oh, would I. If only. 

“It died three months ago, in Chicago,” I share, putting some emotion into the words. “I have a Scion in your shop right now, actually, but I don’t know if you’re interested in Scions.” 

She was. She offered to send a salesman over to talk to me. I told the caller about My Fateful Date that had kept me away from The Dealership until now. She offered to send a saleswoman. 

“What the hell, I’m here, why not try?” I thought to myself. 

At first I actually tried to un-sell myself as a potential customer to Ms. Toyota Sales. She was kind enough, but I didn’t want to waste anyone’s time. I described the mountain of medical debt sinking my credit - but she proceeded, so I did, too. After all, they’d hounded me for years to trade in my 2011 Prius for $5K, and look how that turned out. If I had a chance at offloading my ailing Scion, I should take it. 

Excusing myself to the restroom for a moment, I noted for the first time just how much lint was on ride-along with my casual black Chicago souvenir sweatshirt (“If our vacays have to be medical vacays, we will have souvenirs,” I’d declared). I sighed. I can afford no car less than I can afford a reliable car with a low payment, right? Enough has gone financially wrong in recent years that I oughta be due something going financially right. Wished I looked a little less the part that day, though. I tried in vain to unfuzz my clothes, donned my positive attitude and headed back out to the sales floor. 

The lines and the clouds … so beautiful.

“What do you like to drive?” Ms. Toyota Sales asked. 

“I’d like to drive a sunset-colored Dodge Charger with glowy orange headlights,” I thought, but I didn’t say that. 

“I’ve admired Subaru Outbacks.” I shared. I dream of a day when I can actually save enough not just for the kids’ colleges, but to treat myself to a Happier Camper (in “Mojave Sage” green).  I’ll need a ride that can tow her. The Subarus on their lot didn’t move me, but several Rav4s evoked the same rugged outdoorsy feel, and the price and condition were right. So, we test drove a few. 

In Rav4 #1, I decided to let my guard down a bit and try a little small talk - an act of bravery when you’ve entered the world of chronic illness, where nothing about daily life is small or easy, anymore. Ms. Toyota Sales quickly reminded me how fun small talk is, now. 

“What do you do?” she asked. Sigh. Here we go. 

I’m just now working to restart my photography business, I shared. I told her I used to shoot weddings and portraits, mostly outdoors, but I’m moving to an at-home photography studio. I had aspired to shoot destination weddings and engagements in places we’d hike to, but I couldn’t do that anymore. 

“What CAN you do?” she replied, too quickly. Tinge of impatience in her voice. 

My memory of this day is stuck on this moment. It’s rattling in my brain like the suit of armor bumped by Pippin in Lord of the Rings, clanging down, down, down the well in an echoing metallic cacophony - only instead of waking my inner-demon orc voices, it’s just pissing me off. 

Am I actually feeling wistful for this time in our news rotation? I would never have thunk it, but here we are.

In the moment, I willed myself to just move on, give the rote cheerful answer and focus on the goal. Think of all the smart questions, madly text Elspeth (TBI-sick, yes, but ever whip-smart and tech-savvy) to do a quick search on the make, model and year of each car I look at. Willed myself not to OCD-ly check out every car I could possibly swing and just go along for the car-sale ride, aware as I could stay with these salespeople, so slick in their work. Checked in with myself: “This is what I want, yes?” Kept coming back to “This is so much better than my ride now …” especially when Ms. Toyota Sales worked heated seats into the deal. 

Heated seats can mean a lot to POTS folks, whose bodies don’t regulate temperature right anymore. We three all have the signature red feet of POTS now, but Elspeth struggles the worst with POTS, every day. A normal winter car ride with Elspeth features her dressed light (in easily shed layers) on a below-freezing day, windows down, simultaneously goosebumped and sweating. She manages it as best as she can in the moment, and whoever accompanies her just has to roll with it. There’s not much rhyme or reason to her bodily temperature gauge, I’ve learned, but our rental van in Chicago had heated seats, and somehow they helped her greatly. 

More and more, in the hours it took to select a car and check credit and apply for a loan and fill and re-fill out paperwork, I grew to love that 2011 Dark Forest Rav4. Moon Dancer. Not done-me-wrong mom’s. Not even remotely done-me-wrong late hubby’s. And, reportedly, in excellent health. Mine. All mine. Well. The credit union’s and mine.  

That evening, I finally brought home a Game of Capitalism prize that made my kids ooh and ahh. Oh, how I soaked in those moments! Elspeth and Aslan bounded out from the house, climbing in and clambering around me as I sat beaming in the driver’s seat. They marveled at every detail of our new-to-us clean, waxy-shiny, moonroofed Moon Dancer. I could almost sense her puff out her stout metal chest and smile. 

But … that sentence. 

“What CAN you do?”

Cloud made the cut to fly back with us. Why that aged towel made the cut, but my favorite pillow did not, I could not tell you …

Here’s what I can do. 

Back home that night, I put Ms. Toyota Sales’ card by my computer, a temporary parking space while I gauged my feelings. I shot “Price is Right” photos of Moon Dancer … in the sunset light, then in the morning light. Reflecting the trees in our yard, picture perfect alongside our home. And then I put the card in the trash, and I started writing this. 

As I write, right now, I have friends in the chronic illness community - where virtually all my friends are, now - living in levels of desperation that normies can’t even comprehend. These are the people who guided us to Elspeth’s health answers, such as they are. Some are housebound. More are bedbound. Most are frantically trying to raise money through GoFundMes to afford the handful of treatments from a handful of doctors - most not covered by insurance - found to affect real change in our constellation of symptoms. Some have the money, but are giving up anyway, tired of years of pain, ready to exit. Yet many of them remain on our online patient groups, sharing their stories, trying to help others know they’re not alone, if not trying to help them heal. 

“What CAN you do?” 

My kids and I have reached levels of baseline that allow for basic activities of daily living and some fun, some joy. When you’ve been where we’ve been, that’s a huge victory - especially for Elspeth. It’s not nearly what we were, but life is redefined for us, now. Life is not about pushing and striving, but about pacing and patience, now. It has to be, because no doctor can tell us what we can do. There is no test to tell me how much activity is too much with LongCovid. Just two days ago, I dared to move two shovelfuls of dirt in the garden, and it left me crashed - brain fogged, short of breath. Two days later, I’m still recovering. 

While writing this essay, I took a moment to sign a petition sponsored by the National Disability Rights Network that crossed my social media radar. It’s to the Census Bureau, asking them not to water down their American Community Survey questions in a way that would devalue the disability of millions of folks just like my kids and I. Of course, we disabled would be a lot more affordable to support if we’d just stop talking about what we can’t do, and talk about what we can. We’d also be a lot more convenient if we just disappeared. Most of us do, anyway. 

While editing this essay, on their request, I listened to the appointment of one of my friends with one of the top craniocervical instability (CCI) surgeons in the world, shared with me and their select group of (also ill) advocates - because their family doesn’t believe they are sick. CCI is one of the more dreaded in our patient population’s constellation of syndromes. My friend is currently 98% bedbound, and is not yet 30 years old. 

It’s been one step forward, two steps back in this young lady’s health journey for some years at this point. TBI is heinous.

“What CAN you do?” 

It takes a damn good saleswoman to turn last Friday’s beater-car oil change into an exchange that not only keeps my little family safely in The Game of Capitalism, but makes us feel like royals. 

Maybe Ms. Toyota Sales didn’t mean her sentence the way I took it. Maybe. But still. It’s way past time for all of us, individuals and governments both, to mean to be inclusive; to intentionally be open to learning. To try to understand what we do not understand. 

Meanwhile … 

What can I do? In an industry driven by positive referrals, as a photographer and a writer naturally equipped to do some nice referring, I can say not one peep about arguably one of the very best sales experiences I’ve ever had. 

That’s what I can do. 

Learn more: Search up “#MillionsMissing” on any social media platform. 

Charity Feb lives and writes on The Herbalist’s Homestead, a progressive little hobby farm rebelliously tucked into the southwest hills of Camas, Washington, USA. She photographs portraits in her home studio under the business name Portraits of Connection by Charity Feb.

#Ableism #Disability #TBI #Capitalism