Score One For The Good Guys
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, it’s 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 fracture of 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.
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?
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 an 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.
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.
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.