“What was it they thought I had?”
“Vasculitis.”
“Oh. And what did I actually have?”
“A stroke.”
“And what is it they thought I had?”
The morning after admission, after my MRI, the doctors told me I’d had a left thalamic stroke. It was at this point I realized I could not remember what I’d been reading. Or what the book was about, even. It was just snippets of lines that faded minutes after being read, forcing me to read them over again and again, without even being aware of doing so. Once my mind absorbed the fact that my brain was not functioning as it should, I put down Slaughterhouse-Five.
I thought it would be easy for me to write about the destruction of Dresden, since all I would have to do would be to report what I had seen.
What I saw I could not remember.
I did not pick the book up again for a year.
* * *
This is how diagnosis occurs. At John Muir Medical Center, while nurses cared for me, the doctors inventoried all my symptoms and tried to figure out the root cause of my stroke. We needed to know whether or not I might have another one. And if so, why.
They first came up with a differential diagnosis process, which is a fancy way of saying “picking one diagnosis by process of elimination.” The doctors listed all possible diagnoses that shared my symptoms, before narrowing down the list to root cause. A differential diagnosis procedure is like looking inside a refrigerator, seeing mustard, chicken, pasta, lemons, and milk, and deciding what meal you’ll make for dinner that night. You could make mustard chicken on a bed of creamy pasta, or a cream of chicken soup, or maybe a chicken casserole—a list of possible meals all created from the same set of ingredients.
My symptoms included diplopia (double vision), headache, memory impairment, exhaustion. A cerebrovascular accident (CVA), another word for the death of brain cells due to lack of oxygen, which is another word for stroke, was a possibility. But since I was thirty-three, they did not put stroke at the top of the initial list. They added brain tumor and atypical migraine to the list. Vasculitis, too. Cancer was also a possibility—but because cancer cannot kill quickly on the spot, the doctors decided to screen for it later. They put that on a secondary list of possibilities. The more pressing alternatives—vasculitis or stroke—had to be confirmed sooner rather than later.
Other possibilities included a clot originating on the left side of the heart and then traveling straight into the brain. Or a paradoxical thrombus—a clot traveling from the extremities across the heart’s central wall via a patent foramen ovale, or hole in the heart, into the arteries and then the brain.
In the beginning, you will recall, vasculitis was the most likely diagnosis because of my young age and because vasculitis is common.
Vasculitis inflames and destroys blood vessels, or veins, resulting in aneurysms and restricted blood flow. Aneurysms are balloon-like bulges in the walls of blood vessels. If you have an aneurysm in the walls of your blood vessels and it becomes stressed, your arteries and veins could explode. People with vasculitis have numbness or coldness in the limbs, a low pulse, high blood pressure, headaches, and visual changes. All things I experienced.
Vasculitis is frequently a possible diagnosis on House M.D.—it was mentioned in forty-four episodes over the life-span of the series. Because vasculitis manifests in so many different ways in different parts of the body, with symptoms such as fever, weight loss, bloody nose, hypertension, and abdominal pain, it is a good first diagnostic guess. Vasculitis is a lot like an onion, to return to cooking; used in many dishes, it can manifest in different ways—fried or sautéed or pureed; sharp or sweet or caramelized; crunchy or crispy or tender.
A doctor relies on both experiential and learned knowledge in the differential diagnosis procedure. She tries to remember—with the imperfect and incomplete practical memory recall of all humans, while navigating her own biases and errors—prior cases with similar clinical problems, just as one would navigate one’s own cooking repertoire and know-how. This is why the road to an M.D. involves thousands of hours of in-hospital work and exposure to all kinds of cases. There is nothing that can replace experiential knowledge in diagnosis.
As a result, disorders that are diagnosed most frequently, that are most common, are assigned a higher probability. This makes sense, as their symptom patterns are easily recognized and the odds of a correct diagnosis are so high that no further testing is required. For instance, if one has a runny nose and a sore throat, it is more likely the cold or flu than it is scarlet fever. If one’s pantry contains peanut butter and jelly, then the likeliest meal would be a peanut butter and jelly sandwich. You will probably not make a peanut butter and jelly soufflé or peanut butter and jelly baklava or peanut butter and jelly muffins—even if you technically could.
But occasionally an unusual medical case comes along. Like when someone who is only thirty-three years old comes to the hospital complaining about sudden short-term memory problems.
In cases where symptoms are more unusual, the process involves further investigation and questions and theories and tests. Doctors ordered a CT scan for me. That evening in the emergency room the results came back, reporting a lucency, a bright spot signifying dead tissue, in my left anterior thalamus. There. There was the location of the problem—not a migraine, likely not an abscess, and likely not a brain tumor.
I was admitted immediately, and scheduled for an MRI the next morning to follow up on the CT findings.
Dr. Volpi came into my room and administered a short-term memory test. He told me to remember the words apple, table, and penny, then had a brief chat with me. We made small talk. I do not remember what we talked about. But I imagine it went something like this:
“So, Christine, how are you feeling today?”
“Fine.” (Apple table penny.) “How are you?”
“Good. So, have you had any headaches or vision impairment today?”
“I’m okay.” (Apple penny.) “A little tired.” (Penny.)
“Your husband says you’re sleeping a lot. About twenty hours a day? That’s normal after a stroke. Sleep when you can.”
“Okay. That’s an easy order!” (Apple?)
“We’re going to run some more tests to figure out what caused your stroke.”
“Okay.”
“For now, we’re putting you on heparin to keep clots from forming. And you’re on telemetry so we can track your vitals.”
“Okay.”
“Now, can you remember the three words I said at the start of our conversation?”
“Three words?”
“Yes. If you can’t remember three, any of them is fine.”
“I can’t—I can’t. There was an ahhhh sound in one of them. I can’t remember, though.”
“All right. That’s okay—it’s to be expected. The first word was apple. Do you remember the others? No? I’ll be coming around again to check in on rounds. Is that your notebook?” Dr. Volpi nodded at the Moleskine in my hands.
I didn’t want to forget anything, ever. I was writing down whatever I could in my diary. I wrapped my fingers around it. Hugged it close. I nodded.
“Okay. I want you to start writing everything that happens in that notebook. Write the time of day, too. That’s going to be your memory for a while.”
I could do that, I told him. I could do that. And I did.
10 a.m. January 4, 2007:
Today MRA at 1 p.m.
Yesterday: MRI
Day before yesterday: CT scan, says something had happened. And the doctor admitted me to the hospital. They thought it was not a stroke but something else at the time.
- Angioscan
- In between: a bunch of therapists I forget.
- Ohhh I remember: a neuropathologist? Psychiatrist? Yesterday. She says ought to have regular visits.
My journal would act as my short-term memory bank, it turned out, for a long while to come.
In his notes following the MRI results, I saw that my neurologist had written, “Impression: subacute anterior left thalamic stroke in a young adult, essentially healthy. Vasculitis and dissection need to be ruled out, also a new neoplasm.”
A neoplasm meaning new growth, implying cancer.
Once I’d been diagnosed with stroke, the next steps were to find out what caused the stroke. Was it my blood pressure? Was it totally by chance? Was it a PFO (patent foramen ovale)? My young age made it a priority to find the root cause. I had the rest of my life to live, one that without diagnosis would allow ample opportunity for recurring strokes.
* * *
The clot was in the left chamber.
It swirled, stalled for a split second, then entered the ventricle of my heart through the bicuspid valve, swam, gushed out the aorta into the arterial jet stream, through the left subclavian artery, then the left vertebral artery and basilar artery, and finally the posterior cerebral artery—like a car taking a series of off-ramps, each one closer to the city center—until the clot was in the recesses of the brain.
The tiny clot, which is also called an embolus or a thrombus, then made its way through the brain, along smaller and smaller arteries—picture boulevards and avenues, then residential streets, and then alleyways that no one outside a neighborhood could know—setting off static and images in its dusty path. It floated along until there was nowhere farther for it to travel. Stuck in the hub of the brain, it choked off oxygen from reaching the left thalamus. It was short-circuiting memory. It was splicing memory. It was killing the brain. The clot was stuck in time.
Dresden was in ruins.
* * *
Like Dory the Fish in Finding Nemo, I remembered little. But unlike Dory, I wrote all my thoughts and experiences—everything that happened—in my Moleskine. I detailed doctor visits to my room—what was said, and at what time they occurred, the activities undertaken.
I would have forgotten all of this otherwise. The nurses called me Forty-Seven, the last two digits of my room number in the DCU. I only know this detail now from reading my journal.
From my journals, I know that an assigned hospitalist, a neuropsychiatrist, a neurologist, and an occupational therapist visited me on a daily basis. This is how I know:
2 p.m., January 4, 2007:
Occupational Therapist
- we talked about going to therapy
- we walked around the hospital to the gift shop, and bought things, like a teddy bear, birthday card, and People magazine. Then tried to remember what I’d bought, later.
TODAY: echocardiogram of my heart, results normal
Then I was on some sort of steroid
Waiting on results of MRA
- am trying to get ahold of Mom and Dad
- am so freaked out and discouraged by the gaps in my memory—they seem so tremendous.
- at the moment, I’m excited about getting to shower!
8 p.m.
Mom and Dad called back. Tried to calm them down.
Now I am on heparin, with an IV. It’s a blood thinner.
These notes to myself were the way I navigated my daily life. A reference guide. The shortcomings of my brain were bolstered by my journal.
There are things I have never remembered. Things I didn’t write down. Gone. And even when I wrote things down, I still do not remember. I do not remember the teddy bear, birthday card, and People magazine at all, years later. Do I still have the teddy bear? Whose birthday? And did the therapist pay for those items? Or did I? Did anyone? Did we give them back? It could very well have been another person who wrote those notes down, save for the fact that it was in my own handwriting.
I don’t remember having called my mother and father while in the hospital. I thought it had taken me weeks to get ahold of them. But my notes tell me otherwise—that I had indeed called them immediately after my diagnosis. That I talked to them the day after going to the hospital.
And yet there are things that I did and do remember. The name of my neurologist, Dr. Brad Volpi. And the toilet in my room. It swung out from beneath the sink. And then after using it, I would close the cabinet door and the toilet would then swing back into its dark space. The toilet delighted me, and because I was delighted, I remember the toilet.
How odd, memory. How useless, memory. How bendable. How breakable. How invented. How lost.
Things can be forgotten and life will still go on. What is remembered may not be critical. What is forgotten may be of significance. Time is dependent on memory. Time is unreliable.
But my memory book would change me, forever. Writing was my way toward to my new self. My deficit forced me to write every single day; it forced me to construct legible words and sentences. And I can’t help but think that describing my life also began to stir my imagination from deep within. Somewhere inside, things were happening—not just in my brain but in my mind, in my heart.
Later on, in recovery, I wrote down my feelings and thoughts in addition to the facts. My diary became, like a differential diagnosis procedure, a part of my eventual writing process—all the documented facts became a story. I pieced it all together into narrative. I had to recover to do so. I depended on my own experience and knowledge to cobble together themes and lessons and scenes and episodes into an essay, into this book. And in this way I truly became a writer.
* * *
I remained hospitalized over the next week as tests and monitoring to determine the cause of my stroke continued.
Apple, table, penny.
Adam repeated those words to me over and over. Tried to teach me mnemonic devices. ATP, he said. Think of something that will remind you of ATP.
Adenosine triphosphate!
ATP. Apple table penny!
I thought of another mnemonic device. “Apples on the table look pretty as a penny!”
Dr. Volpi came into my room again later, on his rounds.
“Hi, Dr. Volpi! Apples on the table look pretty as a penny!”
He cocked his head.
“It’s my mnemonic device!”
“Well. Okay. That’s a good method.”
“I’m going to try to remember, Dr. Volpi.”
We discussed tests to come, tests that had been done.
“All right, Christine. What are the words?”
I did not remember. I would not remember for months. And only then because I’d written them down. And because Adam remembered.
Apple.
Table.
Penny.
I used to have an excellent memory. The kind of memory where I could recall the page number of a book where my favorite quote was written. When I wrote English papers in college and needed to look up a line, I’d close my eyes and envision the line, which would then produce a picture of that page in my brain, which would then show me the page number. When I was bored in traffic, I memorized license plates of the cars around me. I memorized all my credit card numbers.
I memorized the credit card numbers of men who bought me drinks at bars. What would you like to drink? they would ask. I’m not looking for a date, I said. I don’t care, they said. I’d just like to buy you a drink. They handed their card over. It sat at the edge of the bar. Their names were there. The names they had given me. I had given them a fake name. I’d see the sixteen numbers above that. 1234 . They were talking about their job in insurance or consulting or film production or technology. 5678. They told me about their trip to Beijing and greeted me in Chinese. They were inviting me up to their room to smoke marijuana. 9101. I was shaking my head and giving them the faintest of smiles, so as not to raise their ire. 1213. I was looking at the numbers. 1234 5678 9101 1213.
Would you like to come up to my room?
1234 5678 9101 1213.
No, I said, thinking, but I have your credit card number.
Oh, come on. It’s good weed.
I took a picture of his face in my mind. His name. His credit card number. I shook my head.
I remembered people’s names and never forgot them.
Instead of understanding chemical reactions in organic chemistry, I memorized the images in my head, which made it troublesome on exams when I was presented with a different kind of reaction to complete.
Furthermore, I took great pride in my superior memory.
And suddenly it was gone.
The erasure of an ability on which I relied heavily, which I considered a core part of my identity and intelligence, was shattering—for the next two years, when I said, “I don’t feel like myself,” what I meant was that I missed my memory, needed my memory, clamored for my memory, grieved my memory.
But in those first few weeks I was lost without knowing I was lost. I was searching with a deep belief that all would be well, not out of resilience or hope but out of ignorant bliss. I was in a hospital room, sheltered from the world, where nurses and doctors protected me from overstimulation, where everything happened on schedule, and where the blank white wall was not an acre of boredom but of great comfort. My world was that room, and in that room my struggles had little measured impact.
In that room my life inched forward in fifteen-minute increments. There was no boredom. Fifteen minutes was not enough time to become bored. It was only enough time to observe and feel and then forget. The hospital sheets were well worn and soft. The tug of the IV needle in my arm leashed me to the pole that dripped heparin. The blood pressure cuff tightened until it released, a sweet and regular choke. Food appeared on its own, whether on a hospital tray or from Adam’s meal outings. The sheets changed without prompting. A cleaning lady, heeding her directive to be unobtrusive and efficient, sanitized the room without hubbub. The telemetry machine beeped as it monitored my well-being. A doctor stopped by without being called, on schedule. I took down notes. I slept. I woke up. I slept again. Light turned into dark turned into fluorescent lights turned into dark turned into light.
There was no future. There was no past.
Forgetting made many things easier. There was nothing to forgive, no grudges to carry. There was no anxiety and worry. There was no fear. There was chewing. There was sleeping. There was talking without remembering, without depth, words swirling around transactional items—what, when, where. There was carrying on.
The mind and brain are different entities. The mind, or soul, is abstract. The brain, flesh and neurons. But the functions of the mind and brain are linked—a marriage of partners, each one distinct but also related and connected to the other. Without the mind, the brain is an organ that has no way to express higher-order thinking. Without the brain, the mind starts to make up stories.
So it was that my mind gave my dead brain a narrative—it tried to explain what was going on, tried to make up the gap between injury and understanding. My mind got depressed, my mind struggled to make sense of things, my mind gleaned the lessons to be learned, and my mind gave me both pep talks and self-criticism.
My mind is what told me my brain was disabled—by depressing me, by slowing me down. By telling me I was tired, when my brain was overworked and needed rest. My mind was what held out hope and laid out a plan to come back. The mind told me I would be okay, because the brain needed to be well and to focus on healing. My mind told me to proceed hour by hour, day by day.
My mind is what writes this memoir now.
Now that my brain works again, my mind continues to try to understand. That the brain is an organ that died then came back online, albeit in a new way. That lives restart again and again and again. That this is a metaphor for all the deaths we experience inside us throughout our lifetime. That relationships end but life carries on. That tragedies occur but everything does not come to a stop because of a stroke or death or divorce or betrayal.
That even when I forget what happens, it doesn’t matter—the world moves forward.
Writing saved my life.
I did not write that down. But of that I am certain.