A while ago I got a message from my Wahington University Physicians patient portal that they were switching over to a new system and that I should make copies of any documents in there I wanted to keep.
It took me a few weeks, but I finally got around to saving some of those documents. I put the MRI, cytology, and surgical pathology notes in a folder on my laptop, skipping over the dozens and dozens of blood lab reports.
The new files from Wash U now live with a shitload of other visit summaries and procedural notes I collected from years of trying to find out what was wrong with me.
Halfway through this monumental task, I came across the report from my very first MRI on February 2, 2017. The title of the report read: “MRI Cervical Spine and Brain With and Without Contrast”. A few lines down it said “INDICATION: Weakness, clonus, abnormal gait.”
I started crying.
It’s hard to put my finger on exactly why the tears started flowing, but it’s a little bit relief that someone finally figured out was wrong with me, a little bit gratitude that I was still alive, a little bit revisiting the trauma of being told I had a brain tumor, and a whole lot of emotional damage from being treated like an attention seeking liar.
I am two different people now. There’s before-diagnosis Emily and there’s after-diagnosis Emily, and after-diagnosis Emily is very, very protective of before-diagnosis Emily. She is frustrated that she can’t reach out and console the woman who was brushed off by doctors for years.
If I could, I’d give BDE a big hug and say, “Prepare yourself. That physician’s assistant is going to roll her eyes at you because you asked about the possibility of a seronegative condition. And the implication will be that you don’t have the proper medical training to use the word seronegative—not like she does. And when you burst into toddler-like sobs because you can no longer help your husband with household chores, she won’t get it. She will mistake your grief over your accumulating disabilities as a cry for help. ‘Are you safe at home?’ she’ll ask.”
I’d also tell her about the doctor that was going to gaslight her over her weight gain. “Cymbalta adds three, maybe five pounds at most.”
“Another will ask you to explain why you don’t walk right, even though he has the fancy tests and the training to find the answers.
Another doctor would attribute one of BDE’s abnormal test results to an issue with a device and never tell her about it. “You’ll overhear her tell the technician ‘That can’t be right’ and nothing more will be done until you can’t walk and have to be wheeled into the doctor’s office.”
“You’re going to be so angry and hurt,” I’d tell BDE. “You’re going to want to sue the worst of the people that failed you. But you’ll be too tired, too emotionally depleted, too financially strapped to even ask a lawyer if you have a case.”
I can’t finish this post right now, but I feel like it should end with someone shouting LISTEN TO WOMEN.
Sit back. I’m going to tell you guys a little story about my youth.
It’s 1992. I am in sixth grade Sunday School class in a small town (population 7,000) Baptist church. The class consists of one sweet and mild-mannered teacher, a half dozen run-of-the-mill tweenage kids dragged to church by their parents, one folding table, twelve metal folding chairs, a corner cabinet with a few Bibles stuffed in it, and one Certifiable Asshole.
The certifiable asshole—CA, we’ll call him—was a towheaded brat who enjoyed a certain level of popularity at our public school during the week. A friend of mine once asked if she could sleep over at my house and go to church with me in the morning “because [CA] goes to your church and he’s really cute.” I think he played soccer or baseball or maybe both.
He was the adolescent equivalent of the guy at the office who “well actually”s all the women in a meeting and then repeats what they said verbatim.
Yeah, I know.
CA didn’t come from an Every Sunday™ kind of family like I did. He was in attendance at Sunday School, if I’m being generous, maybe 60% of the time. He was an entitled young man, prone to blurting rude, hurtful things at his peers. Whether to get a reaction or just make himself feel superior, I can’t say. What I can say, is that as a quiet, pimply, awkward 12-year-old girl, I preferred the 40% of Sundays I didn’t have to look at his smug-ass face.
“Your dad’s sermons are soooooo boring,” he once told the preacher’s kid, apropos of nothing.
“When are you bringing doughnuts and chocolate milk again,” he asked our teacher another morning. She had provided them as a treat once, and he either didn’t know or didn’t care that he was being rude.
“That dress is ugly,” he greeted me one rare Sunday morning when I was feeling particularly well put together.
See what I mean? Cer. Ti. Fi. A. Ble. ASSHOLE.
Our church used to have fifth Sunday dinners, a church-wide potluck held in the Family Life Center after the sermon every time there were five Sundays in a month. It happened a few times a year.
There was one lady who showed up without fail on every fifth Sunday. She was elderly and quiet and black. She dressed nicely, but you could tell she didn’t have a lot of money for clothes or anything. She didn’t appear to be close with anyone in the congregation. I mean, I never noticed anyone saying anything more than a polite good morning to her, but maybe someone did. It’s not like I was watching her closely, knowing I’d be writing this blog post 26 years later.
“Mrs. M is here for lunch,” CA said to our teacher one fifth Sunday. “She only shows up for the food, why doesn’t she ever come to church any other time?”
I waited for the teacher to say something about how Jesus told us to be kind to everybody. How maybe if CA wanted her to be at church every Sunday he should bring her something to eat instead of demanding she be at church every Sunday just to be deemed worthy of food three or four times a year.
The teacher took a book out of her tote bag and told us where we could find the scripture for the lesson if we wanted to follow along in our Bibles.
It’s been ten years since I’ve put even my big toe inside a church. Twenty since I’ve wanted to. It’s not because I turned bitter, either. It’s because Christians have gotten worse. Immigrant-hating, child-caging kind of worse.
Y’all m*****f****** need Jesus.
The trip to Milwaukee turned out to be loads of fun. The party to celebrate Dan and his twin brother Dave on Saturday included family and friends and plenty of food and cake and beer.
The birthday boys.
Family. (All at various points of inebriation. Ha!)
On Sunday, we scooted around South Milwaukee, Dan’s hometown. We drove through Grant Park to gawk at the beauty of Lake Michigan and grab a few small rocks from the beach to put in our landscaping, drove by the house Dan grew up in, shopped the local grocery stores for some favorite eats we can’t find where we live, and picked up a coffee table—a family heirloom—that his niece had been holding onto for us.
It was a busier day than I had anticipated, but the cooler temps and the fresh air were great. I was feeling pretty good (even though neither of us slept particularly well).
So when we got home yesterday, the first thing I did was take a two-hour nap. There’s just nothing like your own bed!
Once we’re fully recovered, we’ve got more projects to complete around the house. It’s shaping up to be a great summer. I am so glad.
All of my favorite places in the world serve ice cream. Union Dairy in Freeport, Illinois is probably my all-time favorite. But, luckily for me there’s a close by close second.
The Sidney Dairy Barn in Sidney, Illinois.
Sure, there are even closer places for us to get ice cream, but proximity isn’t my priority. I can get a Blizzard anywhere. But where else are you going to get an ice cream cone so brightly colored it turns your teeth and lips unnatural colors?
Sidney is a tiny town (population of about 1,300) 10-ish miles southeast of Urbana. Google says it takes us 14 minutes to get there, but the drive honestly doesn’t feel that long to me, especially on a day like today. The clouds were poofy, the sky was blue, the wind was warm, and the fields of corn on highway 130 were shiny and green after last night’s rain.
Dan and I were on a mission to try the Dairy Barn’s wild cherry soft serve ice cream. (Last week’s limited run of Blue Moon ice cream hooked us, and we vowed to try as many flavors as possible this summer.) I got a regular cone; he got a large, chocolate-dipped waffle cone. We sat at a picnic table trying to eat our confections fast enough that they weren’t melting all over us but slow enough that we didn’t give ourselves headaches.
Dan wore some of his. I got brain freeze. And our lips turned red from the “vitamin red”—that’s what Dan calls red food coloring—while Janet Jackson’s “Escapade” played on the radio.
It’s one of the happiest places on earth. In fact, I’m pretty sure cancer has to shut up and take a seat at the Sidney Dairy Barn. At least until you finish your dessert.
Mom and Dad gave me money for my birthday, which was almost two weeks ago. The present I bought with that money arrived today: a Bissell SpotBot Pet carpet and upholstery cleaning machine.
I had one of these SpotBots with my first dog.
Taubensee was a great dog, but sometimes prone to eating things he shouldn’t. Like an entire batch of homemade pumpkin chocolate chip cookies that I’d left on the counter to cool.
(SIDE NOTE: After cleaning up the cookie barf that day some 11 years ago, I still can’t stand the sight or smell of pumpkin chip cookies.)
Anyway, I loved my dog AND this machine. But then my beloved dog died. And then a few weeks later my husband and I moved to Urbana from Indianapolis. So the SpotBot was sold in a different sort of purge—the one I dubbed The Great Purge™. It took place when we moved into temporary housing that didn’t allow us to get another pet. And then our “temporary” housing turned into OMG-how-are-we-still-in-this-tiny-apartment-two-years-later housing.
You know how some women of a certain age get kid crazy? Well, in the two years I lived without a dog, I got pet crazy. All I could talk about how was how I wanted a puppy and kitty and I wanted them to be BFFs.
In 2015, on the day we moved into our very own house and out of that one-bedroom apartment, we signed adoption papers at the Champaign County Humane Society. We have a puppy and a kitty and they are BFFs.
Both of these critters are pukers, but especially Boomer the lab mix. He pukes when he gets too excited, he pukes when he eats ice cubes, he pukes after a long day at the dog park, he pukes in the car on the way back from my check ups at Siteman Cancer Center in St. Louis, and he pukes because that’s just what labs do—puke.
He pukes more than me on chemo. That’s something.
So this little machine has been on my wishlist for a while now, because you just put the thing over the messy spot after you’ve cleaned the debris, push a button, and walk away while it scrubs and sanitizes and deodorizes and whatnot. Its little wand attachment works on upholstery too, so the whole car’s getting a shampoo.
Sorry if I’m getting commercial-y, but I’m geeked. Happy birthday to me.
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This is the earliest I remember being held accountable for something boys did.
Imagine, if you will, a Sunday School room in a Baptist church basement circa 1990. Pale blue cinder block walls and hideous multi-colored commercial carpet. A tack strip holding up a poster of a young girl, her hands in the air, her feet off the ground. At the top are the words “Forgiven and Free!” (Which for weeks I misread as saying “Foreign and Free” and I was so, so confused. Lolz. But that has nothing to do with this post.)
For this particular Sunday School lesson there are four people gathered around two folding tables pushed together. I, two male peers, and the teacher are all sitting in cold, metal folding chairs.
“Emily, will you read aloud for the lesson?”
“Sure.” I grab one of the church-provided KJV bibles on the table and read the passage—I don’t recall the exact chapter and verse. What I do remember, vividly, is that the passage contained the word “ass.” So, I dunno, Jesus might’ve been riding into Jerusalem or something.
I read “ass” out loud when I come to it, and the two boys just go into fits, giggling and snickering because “Emily said a cuss word.” And in church no less.
I say to myself, “Verily, God is gonna smite me.”
The teacher doesn’t address the boys for being disruptive or for being immature twits; instead she turns to me. “Emily, next time we come across that word, we’ll just say ‘donkey’, okay?” She’s firm in the way adults are when giving children a warning not to do a thing again. Using her next-time-there-will-be-consequences voice.
The boys straighten their faces and I nod. My cheeks are hot with embarrassment and I feel ashamed for having sworn in church. I wonder whether the teacher is going to tell my parents what I did.
I held on to the shame for some time—years even. Deep down knowing that there was something unjust about what had happened but unable to name it. I mean, I was reading the section my teacher asked me to read…from a bible the church bought!
But now I know that boys will be boys and some people will let them.