You know what it feels like when you can't identify a snail?
Before my stroke, I was a dot-comer with a hip job in a downtown office painted kindergarten colors. I wore vintage clothing and stompy boots. I was cute enough: small and wimpy, pale, with very dark hair and strong eyebrows. I lived in Washington, D.C.'s Adams Morgan neighborhood. Other generations were jealous of young professionals like me.
But when I was 26, I had a stroke. My mind went pop. I found myself in a D.C. hospital for the summer, a different person. My motor skills had been slammed. I couldn't really move my right arm at all, which was always folded tight against my chest, as if I was defending myself. My right hand clenched itself into an angry fist that I could not open. My trunk muscles and my right leg were a little better. I could get around, for short distances. But most of the time, maybe 20 hours a day, I was asleep, gone.
When I was awake, my speech felt the most broken. I wasn't making much sense. My words were coming out wrong, if at all. I would occasionally come up with sentences that were intact and appropriate. Hospital notes include me saying, "I like to go to obscure cultural events."
Other times it was like... oh... and nothing was coming out. I was particularly bad at naming things. Therapists would show me a picture -- a snail, a harp, a harmonica -- and ask me what it was. More than half the time, I shook my head. I would understand people without difficulty.
You know what it feels like when you can't identify a snail?
That's one useful thing about having brain surgery. You can play really dumb if you have to.
I had brain surgery that summer, which improved things. After surgery, I was awake during normal hours. I could walk more steadily and talk more completely. My surgeon had shaved off a portion of my hair, and opened a square door in my head, on the left side, behind my hairline. Now a nurse practitioner had taken out my stitches, and an attendant who doubled as a hair stylist had cut my hair in a comb-over style to hide my punk rock shave.
I wore only shorts and a t-shirt during the day now -- none of the pale pastel hospital gowns, the outfit of dependency. My hospital was worried about my circulation and leg clots so they had me wearing elastic thigh-highs. The medical stockings were white, with a horizontal weave that made me look like a mummy. I had lost nearly 20 pounds and was so skinny that the stockings wouldn't stay up and bunched up around my knees. This period was the closest I will ever come to supermodel thinness, but I was the opposite of sexy. Supermodels must find it difficult to sit; when you don't have any padding on your rear, it hurts.
My friends came to visit, but now that I wasn't asleep all the time, I was bored. I couldn't read. My mother had banned me from using my cell phone for fear that it had caused the stroke, even though my neurosurgeon said it wasn't my phone's fault. It took a couple of weeks for me to remember that I could dial into my cell phone from my bedside phone to pick up messages. Assuming that I remembered my own phone number. Problematic.
Toward the end of my hospital stay, I got word that I would be discharged on the following Tuesday, July 16, 2002. I would join a more active program, where I would live at home and come to the hospital during the day. This suited me fine, because I was already committing rebellious acts, like sneaking out of my bed and going to the bathroom by myself, instead of ringing for the attendant and waiting a very long time. I would hobble carefully to the bathroom, slinky as a cripple can be. I only fell once, sprawled out on the gray industrial bathroom tile, feeling sorry for myself.
Then I snuck out of the hospital and went to a party.
The Saturday before I was to be discharged was my friend Wendy's birthday party. Wendy was an entrepreneur, warm and comfortable. My friends who had come so faithfully to visit me in the hospital would be there. Earlier in the week, a friend had called my mother and asked if I could come. My mother said "no." She hung up the phone and sobbed. My friends decided not to tell me about the party, worried that I would be upset at missing it. Except no one bothered to tell my friend Aarti, who spilled the beans when she visited me that Saturday morning.
Thus when Wendy and another friend, Helen, visited me later that afternoon, I was indeed melancholy. "You're having a party? And I can't go?" Feeling my plight, Wendy and Helen, good friends that they are, suggested that I break out of the hospital for the evening. This had never occurred to me. Being a neuro inpatient for weeks on end makes you pliant, because you are constantly proving yourself wrong about everything.
"What if I get caught? What if I get into trouble?" I protested.
But, as they pointed out, what would the hospital do? They had to let me back in. Anyway, I was about to be discharged. How much trouble could there be?
They were persuasive.
After dinner, I put on my extra-fancy pair of sweatpants. Television no longer gave me headaches, so I watched an old James Bond movie, You Only Live Twice on TV, and grew more and more excited. As it got closer to the agreed-upon escape time, 8:50 p.m., I became nervous that Helen wouldn't make it. But there she was. As part of the plan, Helen had saved her afternoon visitor badge, which we affixed to my shirt.
Then, it was 9 p.m., the end of visitor hours, and a whole gaggle of guests were kicked out at the same time.
Cue the James Bond soundtrack.
Look right, look left, coast is clear, hobble hobble hobble...
We remained with the pack of departing visitors so as not to arouse suspicion. An ancient black Ford Festiva, was waiting at the curb, with Magda at the wheel. Magda has a slight Polish lilt from immigrating as a child, plus dramatic Slavic features and an angular haircut with sharp horizontal bangs. In short, she's an ideal person to drive a getaway car. She said she had never seen stroke me move so quickly, as Helen and I raced to her car. "Go, Go, Go..."
We sped off into the night. Magda says it's the only time in her driving career that she's actually burned rubber.
In the warm, clear night, we drove down the hill toward Logan Circle on 14th Street, picking up speed as we went. It was strange to be moving so fast. I had't been in a car for seven weeks. As we fled the hospital, I felt that I owned the city.
My friends stood on either side of me as I climbed the rickety metal stairway to my friend's apartment with my cane. I sat in the living room, with its white tiled floor, its fireplace, and abstract paintings. No one expected me, and I was the hit of the evening. I held court. I tried to answer everyone's questions. I couldn't talk much. I didn't eat much either. What I loved was how ordinary it was. Around me Wendy and Aarti entered into a spirited conversation about circumcision. Wendy was Jewish and had started dating a guy who wasn't.
My friends had baked a bright green birthday cake for Wendy in the shape of an armadillo. They had made the inside red, so that when you cut the cake, it would look authentically bloody. It was named Gus. I love my friends.
After about an hour, I grew anxious and felt I should go back to the hospital. I'm not a true rebel at heart. I rebel to make a point, and then I get a little nervous. I knew that the nurses would be looking for me eventually. So Magda drove me back.
Wendy and Helen's hospitalbreak plan was entirely focused on getting me out of the hospital. We hadn't thought one whit about how to get me back in. When we returned at 10:30 or so, Magda unknowingly parked dead in front of the hospital's security cameras. A guard nabbed me as I tried to sneak past the uninteresting landscaping and through the glass front doors.
He asked me where I'd been, who was driving the car. I quickly decided to pretend I didn't understand anything he said and that I couldn't talk at all. That's one useful thing about having brain surgery. You can play really dumb if you have to.
I didn't tell my parents about this episode until much later. They cringed. Doctor and lawyer friends looked askance. But one later stroke therapist said it was a sign that I was going to be fine. It would take years of rehabilitation to get there, but this was the first step to me getting my spirit back. Still working on it.