I Had a Stroke at 33
On New Year's Eve 2007, a clot blocked one half of my brain from the other. My reality would never be the same again.
There was a cascade of input — triangles and sky and gravel sound and music on the radio and wind and the feeling of rough cloth near my hands. I could not make sense of it all; I did not know the small triangles were trees, the larger ones mountains, the sound tires crunching snow and Snow Patrol, the jacket Gore-Tex, and that my wrists were the things attached to things called my hands. They were colors and shapes and sound and touch and sensation and my brain was no longer sorting these things out. But when I saw the red snowblowers in the parking lot turned 90 degrees and doubled, I finally had a complete thought. I comprehended what I was seeing. Red snowblowers. Sideways. Strange.
That was what my stroke felt like: like I was separating from myself.
It was Dec. 31, 2006. I was 33. I did not yet know this, but a clot had traveled from my aorta into my brain, and made its way to my left thalamus. As a result, my left brain, the expert at numbers and language and logic and reasoning, a part of it suffocated and died. My right brain, the specialist with regard to color, music, creativity, intuition, and emotions, therefore could not talk to my left brain. Numbers became squiggles, colors lost their names, food lost flavor, music had no melody.
This is not normal; this is beautiful, I thought. But I am dizzy like I am on a boat. And my head hurts.
"I need to sit down," I managed to say. I had not yet lost my words. I was in the middle of a parking lot.
"I'll go inside, and you sit here," my then-husband said, telling me to sit on the curb outside the store. That he would be right back.
He disappeared and came out empty-handed because even he knew there was a problem. "Let’s head back," he said. "There’s no way I can buy filters while you’re out here. Something’s wrong."
And eventually, my thoughts subsided. My brain went dark. Dark. I cannot remember that ride back to the house as much as I try, years later.
I was tired, so I napped. (Sleeping is not recommended immediately after or during a stroke.) I dreamed about getting lost in the snowy mountains. I dreamed about walking a frozen Alpine lake. I dreamed about losing my shoes. I dreamed about losing my voice.
When I woke up hours later, I really believed I had been in those mountains hiking — that it was not a dream. And I really had lost my voice. I had lost my words. I was unable to say, "I am trapped in my brain" or, "My memories are mixing with imagination."
Our friends had arrived to celebrate New Year's and all I could do was smile and say, "Hello." Just, "hello." They were excited to join us, and in the hubbub, I was silent. I am never silent. I also never nap.
"Hi, I’m having a brain drain," I said. I watched myself struggle. Underneath what felt like 100 down blankets, what was left of the pre-stroke self said, "That is not what I meant to say. Something is wrong." But no one, not even I, could hear or understand.
I tried to join my friends’ conversation, but the words were too fast, the subject matter switching all the time. I opened my mouth to add something, but I couldn't form the words. We went out for fondue. I don’t remember if I ate the fondue.
This was what I blogged that evening in an attempt to communicate what I was experiencing:
I am feeling strange. My brain is in a weird state right now — a combination of short brain games and lack of memory. While taking on the concept of a brain game earlier today, I suffered a memory overhaul. Now I can’t say what I want to say or remember what I want to remember. It’s just a weird situation.
Just 17 hours earlier, pre-stroke, I’d written the following in my journal:
So this is how it feels to hole up somewhere: the snow has come on and off this week, the chilly air outside has the snap of a crisp spring peapod, and all is peaceful. There is no external stimulation; my life has turned inward this week. Reading books.
When I checked my blog much later, there were comments from 12 of my friends urging me to go to the hospital. "Something is very wrong," they said. "We are worried."
People have asked if anyone around me could tell I was having a stroke. "Weren't you acting weird?" they'd ask, and my husband’s mouth would turn into a thin line, and my friends who joined us for New Year's would lower their eyes. I was acting weird, yes. But it was New Year’s Eve. My friends and husband were drunk and jolly. I was not talking. They thought that was odd, but not cause for huge concern. They thought that perhaps I too was drunk.
Besides, I did not have the classic symptoms of a stroke. The Stroke Association uses the mnemonic device FAST:
Face: Ask the person to smile. Does one side of the face droop? Mine did not.
Arms: Ask the person to raise both arms. Does one arm drift downward? Mine did not.
Speech: Ask the person to repeat a simple phrase. Is their speech slurred or strange? My speech was not slurred.
Time: If you observe any of these signs, call 911 immediately. I did not.
Two days after the stroke, we returned home to Berkeley.
"I still don’t feel well," I told my husband. "I’m staying home from work."
Our fridge was empty. I went to Andronico’s grocery store and browsed the aisles, a blur of colors and letters and shapes. What was it we needed? I wondered. I could not figure out how the pieces fit together, that I would need onions because we used onions for everything, that I would need bread for sandwiches, that I would need meat for a possible entree. They were shapes and colors and textures. That fleshy pink package was a fleshy pink rectangle. The countless numbers of canned soup and canned vegetables were mere metal cylinders.
I emerged with one thing: a jar of Muir Glen spaghetti sauce. I grabbed it because I had seen it before, because I could read the label. If it was something I could understand, it must be something I needed. I did not need spaghetti sauce.
I still do not remember how it is I paid, whether by cash or by debit or credit card. I do not remember swiping or handing over bills. I just remember blinking in the cold winter sun at my car in the parking lot. Holding a jar of spaghetti sauce.
And wondering how to get home. I did not know how to get home.
I got in the car and started driving. If I just drove, I thought, I would somehow get home.
Each time I thought about whether I needed to make a left turn or right or stop or go, I felt lost. I had no idea. And so I pressed on without thinking, while relying on intuition. Each time I stopped, I recognized landmarks — a tree or a house or a store. I knew I was getting closer to home, but I did not know how to continue.
Intuition carried me when logic and memory failed.
I made it home.
And then I thought, I need to get to a hospital.
I picked up the phone and then I asked myself, What is the phone number for 911?
I looked at the numeric keypad, and I could not figure out what number each shape represented. And what is the number for 911?
I thought perhaps I should try calling my husband. I could not remember his phone number, either. It did not occur to me to look for it in the contacts list on my BlackBerry, either.
I finally decided I would mash a bunch of numbers on the keypad and talk to whomever it was I dialed on the landline. I did not think about the fact that I did not know where I lived, but I punched in a set of numbers anyway.
"Hello," a man said.
"Hi!" I said.
"Hi," he said.
"Who is this?" I asked.
"This is A—," he replied.
"Oh! I have been trying to reach you! I forgot your phone number and I didn’t know how to get ahold of you! I called this phone number, because it was in my fingers."
"I’m coming right home," he said.
We went to the emergency room where they gave me a CT scan to get an idea of what was going on in my head.
There’s a dark spot on the CT. "We think you have vasculitis," said the doctor. In my files, I later read the hospitalist’s dictation: "Patient has focal low attenuating area in anterior left thalamus." In other words, there was a scar in my brain.
At the time I said, "OK."
He continued, "We think it’s vasculitis and we need to admit you for more tests."
My husband joked, "We need Dr. House."
I loved the MRI the next morning. It was peaceful inside the tube with the thumping noises. I closed my eyes and imagined a beach, ocean waves crashing, a distant horizon. I wondered what kind of imagery that would produce on the MRI — if they would see that I was thinking of water. I wondered if my brain would light up like a beach at sunset.
And then a neurologist came to me with the results. "Hi, Christine, we have discovered you’ve had a stroke."
What did they think I had?
And what did I have?
"A left thalamic stroke."
OK. But — what did they think I had?
The thalamus is the hub of the brain, its traffic circle. Each side of the thalamus is the size and shape of a walnut, or the same size, weight, and shape of a marine iguana’s brain. It regulates sleep. It relays messages. Too much damage to the thalamus results in permanent coma.
I slept. And slept. And slept. I slept dreamless then, and dreamless for months. Or maybe I dreamt, but do not remember.
Awake I had a 15-minute short-term memory, like Dory the fish in Finding Nemo. My doctors instructed me to log happenings with timestamps in my Moleskine journal. That, they said, would be my working short-term memory. My memento to my mori.
I was the youngest person in the stroke unit by 40 years. The staff called me Forty-Seven — the last two digits of my room number. I only know this detail now because I re-read my journal, in which I recorded my entire experience, aphasia and all.
I wandered the halls of the hospital, wheeling my heart monitor and heparin on an IV pole. I lost track of time. I wandered outside the boundaries of telemetry. They lost my heartbeat. When I returned, they scolded me. "I won’t do it again," I said, but then I forgot and wandered again.
At one point during my hospital stay, my friends visited. They greeted me by saying, "You look completely normal!"
The neuropsychiatrist stepped in.
"Do you know who I am?"
"No, but it’s nice to meet you."
"Open up your journal." I did.
"What time is it now? What is the timestamp in the last entry?"
"It’s 10:35. Oh! I met you 20 minutes ago! Oh! You’re my neuropsychiatrist."
"Fuuuuck," said my friends. "Wow."
I enjoyed my 10 days in the hospital. They were peaceful. I savored the plain white walls and relative quiet. I slept. I was delighted by the toilet that slid out from under the sink. I had my favorite nurses. I do not remember their names because I forgot to write them down.
When I left, the world came at me bright and fast. I had to ask my husband to turn off the radio. I would not be able to drive with the radio on for the rest of the year. I kept my eyes shut all the way home. I could not handle the input. And then — then I slept for hours.
It was this way for weeks. For every 15 minutes of waking interaction, I slept for hours to recuperate.
I forgot to eat.
I didn’t know how to make a peanut butter and jelly sandwich.
One afternoon, I decided to make a pound cake. I used to be an avid baker. While the butter and sugar mixed, the phone rang. I answered the phone. I forgot about the cake. I hung up the phone. I sat down. I forgot the phone call. I turned on the television. I stood up, dizzy. Why was I dizzy, I wondered. And then I thought perhaps I hadn’t eaten. When had I last eaten? I didn’t remember. I went to the kitchen. There was a mixer running. Who on earth left it on? There was a cookbook with its page leafed open. Pound cake. Who was making pound cake? I turn the mixer off. I must have been making pound cake, I thought.
I banned myself from cooking after I put water to boil on the stove and returned to a smoking pot.
I was discharged on Lovenox and Coumadin. Blood thinners. And blood tests three times a week to monitor my INR, to measure the clotting tendency of my blood. The Lovenox shots went into my belly — they stung and left large bruises, big polka dots. Because my thalamus was damaged, I could not control my crying.
Each night, I took the box of Lovenox syringes and carried it to my husband, sobbing. "It’s time for my shot," I said, tears streaming down my face.
Each night, he pinched skin on my belly as I screamed like a toddler and he injected the medicine.
Each night, I said, "It stings, it stings!" And wept for half an hour.
I was not myself.
On Jan. 30, I withdrew from my MFA program. I ran into a friend on campus after, and told her the news. I could not read more than a paragraph.
"I’m taking a leave of absence," I said.
She replied, "I wish I had a stroke as an excuse for my short-term memory issues!"
The old me would have told her that was rude. Or that it hurt my feelings. The new me stood stunned, unable to come up with a quip. And then I got into my car and cried.
For a month, every moment of the day was like the moment upon wakening before you figure out where you are, what time it is. I was not completely aware of what had happened to me. I was not completely aware of my deficits, in an ignorance-is-bliss sort of way. I was unable to fret about the past, or the uncertainty of the future.
The sun is bright. The leaves rustle. This is the wind on my face. I am alive.
This is the thing: People pay a lot of money to live like that. To live in the present tense.
The clot reached my thalamus through a hole in my heart. The hole, or more accurately a flap, is called a patent foramen ovale, or PFO. All fetuses have a hole in their heart between the left and right chambers, to bypass the lungs as they take oxygen from their mother’s blood. Once born, that flap fuses. And once born, nearly a quarter of humans have holes in their hearts that don’t completely close. For some, the hole is severe and needs to be closed immediately. For many others, the hole is undetected. Maybe like I used to, you get migraine headaches, or have altitude sickness at 5,000 feet instead of 10,000 feet, or find yourself panting while doing a slow jog, no matter how often you train.
They discovered the hole, the cause of the stroke, with an echocardiogram and a bubble test. A doctor injected a bubbly sterile saline solution into my vein and watched the bubbles travel through my heart on a monitor. If there were no hole between the left and right atrium, the bubbles would be filtered out in the lungs (right atrium, lungs, left atrium). When bubbles appeared on the left side of my heart, we knew I had a PFO. My blood had not been fully oxygenated ever.
A month later, it happened again: Another clot went through the PFO in the back of my heart. It traveled up into my right eye, and then moved to my left. I went to my optometrist, who confirmed that I was visually impaired. "Go to the ER now," he said.
I called my neurologist, who told me he would meet me in the ER.
"Sorry for bothering you," I said.
In the ER, my neurologist put his hand on my shoulder and said, "Please don’t hesitate to come in. You’re not bothering me."
When I was admitted again to the stroke unit, the nurses remembered me. "Forty-seven!"
"Hi," I said. "I’m back."
They closed that hole a week later. They used an Amplatzer device, which is a teeny-tiny umbrella-like implant they snaked through my femoral vein in a catheter lab until it reached the heart. In the midst of the procedure, my cardiologist had to defibrillate me. My heart freaked out. My heart didn’t want to be closed. It didn’t want to be touched. I know this because my cardiologist told me this happened.
"Do you remember it at all?" he asked.
"No," I said. The Versed did its job. An anesthesiologist had once told me that anesthesia without Versed, without its amnesia-inducing qualities, would be cruel.
"But maybe," I joked, "I wouldn’t remember it anyway."
"Good," he said. "You were talking to me the whole time."
"Oh my god. What did I say?" I asked.
"Don’t worry about it," he said.
I wondered if I'd betrayed any secrets, but when I stopped to consider them, I couldn’t remember my secrets.
I stayed overnight in the hospital, flat on my back. I was not to move, not until the femoral vein closed. But I bled anyway. The nurses checked me every hour and found me soaked in blood in the middle of the night.
"Have you moved?" they asked.
"No," I said.
"Hold still," they said. And I felt a sickening pressure on my leg for the next hour as the nurses took turns exerting pressure on the seam where my leg joins my torso. But this — this was how I healed. This was how I never got a migraine again. I was instructed to keep my heart rate below 120 beats per minute, but once I started running a year later, this was how I became able to run. This was how lifting heavy objects no longer left me lightheaded to the point of nausea and fainting.
In this sense, the stroke saved my life.
I made progress, but if I pushed myself too hard, I regressed. I was always exhausted. I had to stay in bed for days to recover. My memory felt like a sieve; my brain wanted to shut down and made me sleep. When I met up with one of my best friends visiting from out of town, I stayed up late laughing. When she left town, I slept for four days.
No one saw this side of it: the sleep.
"You’re OK," friends said.
"No, I’m not."
"You’re OK," they said.
Other friends said I was overreacting. That they couldn't comprehend what I was going through. That I was too high-maintenance. People in their thirties worry about jobs and careers and relationships and car payments.
My thalamus was gone; I had no coping mechanisms. I replied, "Fuck you."
I sought out sexagenarians. I had tea with my friend and former professor who’d suffered a brain injury and was thinking of retirement. We commiserated. We joked about how we would not remember the conversations we had together. I had a meal with my friend who was a new grandmother and who had undergone knee replacement surgery. She said in her gentle voice, "Seek lessons throughout your recovery process."
"Find meaning," she said. "Find meaning."
In the beginning of my recovery, I could only read People magazine. And then a month later, I could read the newspaper. Six months later, I read a Murakami short story. Even when I could not remember, I read as much and for as long as I could. Sometimes this was 15 minutes before I became tired, and other days, an hour.
I wrote what I could. In the beginning, I blogged and wrote in my journal. I often flipped my homophones in my writing — pore and pour, hay and hey, real and reel, feat and feet, aisle and isle, for and four. I would reread and not see the errors.
And, I found, I could not lie. I could not write fiction. So instead I wrote the truth. I started an anonymous blog on which I chronicled my stroke recovery as a writer. It connected me to friends that I have to this day.
I became an introvert. I learned to protect my energy, something that now serves me well in midlife. I learned to take better care of myself. I learned to devote my time to things that reinvigorated me, to things that were important. Write a paragraph in my journal. This person, not that. A bath and not makeup.
My brain was changed forever. The dead spot never rejuvenated. But the brain was making new paths around the destruction. In this way, blood traveled in a new way around my heart. Also in this way, there are new neural pathways in my brain.
I re-enrolled in my MFA program that fall. I wanted to finish. I had one more class — a workshop and a thesis to finish. I had a novel-in-progress. My thesis adviser said, "Let’s get this done. Let’s gather up your short stories and submit a collection as your thesis. Your novel, your novel can wait."
I finished up my semester. I don’t remember any of it.
To this day, people from the workshop come up to me and recount conversations we had.
"Remember that awesome conversation we had about writing sex scenes in that workshop?"
I smile. "I don’t remember."
"We said some wicked things!"
Because the hole in my heart was closed, I was able to exercise. Because I was able to exercise, I started up running and yoga a few years later. Because I started up running and yoga, the other parts of my body, including my infertility issues, healed and resolved. I got in the best shape of my life, and then I became pregnant.
I had a baby and developed severe postpartum depression. My husband and I decided to get a divorce.
“I think in hindsight, it was your stroke that changed everything for me,” he said.
I thought it was the affair he’d had. But maybe he had a point. “Maybe that was the year,” I said.
Because yes, it was the year my life changed; it was the year my life was saved. It was the year I decided to live every year as if it were my last. It meant spending two years in New York City and focusing on my novel, it meant making new friends, it meant saying yes to many more things. It meant my priorities were no longer the same as my husband’s.
I knew the moment I was back, 22 months after my stroke. I was driving and memorizing license plates. I used to have a photographic memory, and I memorized things like the credit card numbers of men who bought me drinks, for fun, to wile away boredom. I did not realize I was doing this until I was halfway home. I was ecstatic.
I opened up the file to my novel. I knew it was time. I knew I was ready again. But at the same time, I knew nothing would be the same; there is still a black memory hole around Dec. 31, 2006. So much of this essay was culled from my journal and blog entries and stories friends told me, as well as any memories those prompted. So much is still inaccessible. I do not say things are missing; they are inaccessible.
Because I know that all of the things that happened are still in my brain, stored somewhere in the recesses. That the thalamus retrieves memories and weaves them together. That some of those memories drift up later, like the feeling of déjà vu or like when in the middle of the afternoon, you remember the dream you had the previous night, because someone is wearing a red scarf and it prompts the memory of your dream about losing a red scarf on the pitching seas of the Mediterranean. Which in turn makes you remember that yes, two months after your stroke, your mother-in-law was killed and you sat shivah in Tel Aviv, staring at the sun go down over the sea each evening. That really did happen.
So much of memory, I also learned, is connected to emotions. That which makes me happy bypasses the process for short-term memory. I understand why it is I remember the intense events of my childhood. Why that day in the snow, being pelted by snowballs and not any other day. Why that Halloween, listening to my parents scream at each other, and not any other holiday. Why that plane ride leaving NYC for California and not any other. Why I forget all the names of all the doctors except for my neurologist, Dr. Volpi. Whose eyes were kind. Who was the first specialist on scene in the ER. Who was the one who told me I’d had a stroke. That moment.
So much of memory, I learned, is scattered in modules. Over the year, I tried to tell stories, anecdotes — and I could start a story, but I could not continue or end the narrative. Sometimes, when someone piped up and prompted me, Didn’t such and such happen next? I remembered the next part of the story.
I learned stories and memories are pieces of a puzzle, pieced together most likely by the thalamus. This means I couldn't lie. Because I couldn't lie, I couldn't write fiction. But later, knowing this is how stories are told — knowing firsthand that stories are segments woven together — helps. It helps.