There's No Extra Time in Life
I spent years believing I was the problem, until a diagnosis forced me to reconsider the story I had been told.
This essay is part of the Between Chapters project, inspired by the book. What chapters are you between? How did you get from one chapter to another? Share your story here.
What Chapter Are You…
Leaving:
Being sick (I had a 3-inch brain tumor surgically removed 9 years ago).
In:
Nearing the end of the chapter where I rebuild my life from scratch (jobs, graduate school, clinical hours, starting my own practice).
Entering:
The chapter where I gasp make my life whatever I want it to be.
It started when I was four: ear infections. Dozens of them, one after another, until my tiny, crayon-sized ear canals began closing in on themselves.
I had a procedure known as a tympanostomy, more commonly referred to as getting “tubes.” Even after the surgery, my speech didn’t develop properly.
I had to repeat second grade. My mom sat me down on my childhood bed and explained that I was young for my grade: a July birthday, with a September cutoff.
All I could think about was my second cousin, who was five months older than me. How people would compare us. How everyone would know.
“Know what?” my mom asked.
“Know that I’m not smart enough.”
“But you are smart,” my mom protested. “Hey, hey, hey, look at me. You’re smart.”
But I didn’t believe her.
In fourth grade, I was diagnosed with a learning disability: an auditory processing disorder with acute dyslexia. There was a name for it, and that name came with accommodations: time and a half on all in-class quizzes and tests.
“But what are you going to do in life?” my sixth-grade math teacher, Mr. S, whose very long last name wasn’t stracciatella or stromboli but lived somewhere in that neighborhood, asked as I handed in a test. “There’s no extra time in life.”
After college, I got a job at a PR agency, where I went in early and left late, convinced I was going to get fired.
Because Mr. S was right: there’s no extra time in life.
For years, I thought I couldn’t work a normal job. I thought I wasn’t normal.
So I created my own job: a custom accessories company. My main product was a Map Necklace, for which customers selected any address in the world, and I engraved it onto a piece of gold or silver, marking that location with a small diamond.
For the first time in my life, I felt like maybe I was worth something. Maybe I couldn’t work a normal job, but maybe I was creative. Maybe I was clever. Maybe I couldn’t do that thing over there, but I could do this thing over here.
Until I couldn’t.
The symptoms started slowly and then all at once: hair loss became balding, lower back pain became spasms, and slowly, I gave up everything I loved: my boyfriend, my job, my company, running, sugar, gluten, dairy, alcohol, friends. Then I went to the doctor.
“So, I don’t have a B-12 deficiency?” I asked my PCP, after my bloodwork revealed what looked like a perfect bill of health.
“No.”
“What about anemia?”
She shook her head. “I want you to see a neurologist.”
The neurologist did a battery of tests. She took a vibrating wand and pressed it against my left arm.
“Can you feel this?” she asked.
“Uh-huh.”
“How about that?”
My eyes shot open.
“Was that supposed to feel the same?” I asked, suddenly pleading.
She nodded.
She wrote a prescription for an MRI and called me two hours after I had it.
“I’m going to say a word, but you have to promise me that you will not Google it,” she said sternly. “You have a neurocytoma, pressing against…”
I knew that “neuro” meant brain and “cytoma” sounded like something I didn’t want to have. It sounded like the word “cyst.” I took the two pieces apart to put them together again, like a compound word: cupcake, sunflower, brain cyst, brain tumor.
Brain tumor.
“I’m going to give you one name. If he can’t see you, I have others, but this is the guy. Do you have a pen?”
She gave me the name of a neurosurgeon at Columbia Presbyterian, and in his mahogany office, with framed degrees adorning the walls, he asked what questions I had.
I asked him if I needed to shave my head; what the odds of paralysis were; if I’d be able to walk again, run again, talk again; if the feeling in my hand and foot would ever come back; and how long I had had this.
“You’ve had this your entire life.”
He explained that it was a slow-growing tumor. A tumor that size didn’t appear overnight. It had been growing for the better part of thirty years.
But if that was true, if I had had a brain tumor my entire life, did that mean I didn’t have a learning disability? I didn’t have an auditory processing disorder? I didn’t have dyslexia? And if I didn’t have those limitations, what did that mean for my life?
I spent the first thirty years of my life believing that I wasn’t good enough, and I’ve spent the past nine years trying to unlearn those beliefs and rebuild my life. I just needed extra time to do it.
Follow Katie Schloss, AM, LCSW on Substack and Instagram.
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