Esmeralda Santiago, author of the memoir When I Was Puerto Rican and novels including America's Dream, The Turkish Lover, and Conquistadora, is a master storyteller. But her own story seems like a fairy tale gone wrong: best-selling novelist, fluent in Spanish and English, suddenly loses her ability to read. However, a demon or witch wasn't to blame. The cause was something much more common and insidious: a stroke.
Santiago wasn't ready to accept the news when her doctor told her that a stroke was the reason she couldn't understand written language, a condition known as aphasia. (Aphasia can also make it difficult to produce written language and to understand or produce spoken language.)
“I told her, ‘I can't have this,’” Santiago recalls. “‘I haven't read War and Peace yet.’”
LOCATION, LOCATION, LOCATION
“A stroke can be caused by completely opposite circumstances,” says Louis R. Caplan, MD, Fellow of the American Academy of Neurology (FAAN), professor of neurology at Harvard University, and senior neurologist at Beth Israel Deaconess Medical Center in Boston, MA. “It can be caused by not enough blood going to the brain, or by too much.”
Lack of blood flow to the brain—often caused by a clot or embolism that stops flow in a blood vessel—leads to what is called an ischemic stroke. Excessive bleeding in the brain—often the result of a brain aneurysm or a leaking or broken blood vessel—leads to hemorrhagic stroke. While roughly 85 percent of strokes are ischemic, hemorrhagic strokes are deadlier, accounting for 30 percent of stroke deaths. (See box, “By the Numbers: Stroke.”)
Whether ischemic or hemorrhagic, all strokes lead to the same thing: dead or damaged brain cells, which is why stroke is often called a “brain attack.”
But because of the complexity of the human brain, the symptoms can be varied, depending on the location of the stroke. “Other organs are pretty uniform in terms of their structure and function. If you affect one part of the liver, for example, it's pretty much the same as affecting another part of the liver,” Dr. Caplan says. “But the brain is divided up into areas with different functions.”
“A whole host of symptoms can occur based on what area of the brain is affected by a stroke,” adds Joseph Broderick, MD, FAAN, chair of neurology and rehabilitation at the University of Cincinnati medical school, and research director of the university's Neuroscience Institute. “Some people have language problems; some have problems with weakness or clumsiness; some have a sudden loss of vision.”
“IT ALL LOOKED LIKE GIBBERISH”
For Santiago, the initial symptoms were vague. In January 2008, she was working hard on her novel Conquistadora. “I had a deadline the following week, and I was just really, really tired,” she says. “I woke up one morning feeling kind of off.”
Santiago, 66, jokes that because she's at an age “where anything could be happening,” she thought her symptoms might indeed point to a stroke. So she decided to videoconference with a friend in Rome, Italy. “I figured she could see my face and would know if something was wrong with me,” Santiago recalls.
But the call proved nothing. Santiago didn't look unusual to her friend and was able to answer various questions for her. “You know, what day it was, who the President was, all those kinds of things. I couldn't do the alphabet backwards, but neither could she!” Santiago says.
After deciding she was probably just exhausted from long hours of writing, Santiago took a day off. She went to the movies, drove home, cooked dinner, and watched television. “No problems except for the exhaustion,” she remembers.
When she sat down to write the next day, however, she began to have trouble understanding the words on the screen.
“I went to my computer and read my manuscript—the part I was working on the day before, in fact. But I couldn't understand a word I'd written,” she says. “I went to a previous page I'd written months before, and it all looked like gibberish to me.”
On a second videoconference to Rome, Santiago's friend told her she now seemed to be speaking “a little more slowly than usual.” Santiago called her doctor, who told her to “get in here immediately.” When it comes to stroke, time lost is brain lost, which is why it's crucial to call 911 if you or someone you are with experiences any of the symptoms of stroke. (See box, “FAST!”)
FAST is an acronym created by the American Stroke Association and the American Heart Association to alert people to the signs of stroke.
F IS FOR FACE, indicating the tendency of one side of the face to droop during an acute stroke.
A IS FOR ARM, indicating possible weakness of one of the limbs during acute stroke.
S IS FOR SPEECH, indicating problems with communication that frequently occur during acute stroke.
T IS FOR TIME, indicating the urgent need to call 911 if someone is experiencing the warning signs of stroke listed above.
“My doctor is a classmate from college. When I started talking, she knew something was wrong,” Santiago says. “She immediately sent me off to get a CT scan, which confirmed I'd had a small stroke.” (Computed tomography [CT] scans and computerized axial tomography [CAT] scans combine multiple X-rays into an image of the brain and spinal cord. See bit.ly/1sVx2x1 for Neurology Now coverage of brain imaging.)
Although Santiago heeded her doctor's advice to get a CT scan, the writer still didn't understand the gravity of the situation—until she was admitted into the hospital and placed in the intensive care unit (ICU). “The aphasia was getting progressively worse. I really couldn't understand anything written,” she recalls.
Santiago learned the hard way that a suspected stroke should always be treated with urgency.
“The reason we use the FAST acronym and say it's time to call 911 is because we know the treatments we give for acute stroke are highly time sensitive,” Dr. Broderick explains.
According to Dr. Caplan, “the longer the decrease in blood flow exists, the more chance the brain tissue will die and you'll have a more permanent deficit.”
That is especially true when it comes to administering tissue plasminogen activator (tPA), the clot-busting drug used to treat ischemic stroke. The drug is most effective if delivered within three hours, but quicker may be better. “If you're given treatment within 90 minutes of onset, or even two hours, you have a three-fold greater likelihood that you'll get back your normal function compared to if you don't get tPA,” Dr. Broderick says.
THE WORST PLACE FOR A WRITER
In her hospital bed, Santiago was told she had experienced an ischemic stroke in an area of the brain associated with the understanding of language.
“It was a blood clot, a blockage in the blood vessel that supplies what is called Wernicke's area,” Santiago says.
Strokes affecting Wernicke's area of the brain—also called Wernicke's speech area—frequently result in language problems only. “It can be spoken language; it can be written language, or it can be a combination of those,” Dr. Caplan explains. “Some people who have strokes in the Wernicke's area don't have many symptoms that neurologists can see outwardly because the part of the brain that controls movement is separated from the part that controls language.”
While only two major types of strokes exist, the risk factors are many. Some risk factors can't be modified, such as family history, race, gender, and age. “The most important risk factor for stroke, unfortunately, is getting older,” Dr. Broderick says. “Stroke can occur at any age, but the risk increases substantially with each decade after the age of 35.”
Modifiable risk factors, on the other hand, can be changed to reduce the likelihood of having a stroke. These include being overweight or physically inactive, drinking too much alcohol, smoking cigarettes, and having diabetes, high cholesterol, atrial fibrillation, or high blood pressure. “High blood pressure is by far the most common and important risk factor for all types of strokes overall,” Dr. Broderick says.
Fortunately, Dr. Broderick notes, most of these modifiable risk factors can be reduced through the help of diet, exercise, and medications. “Many approaches to decreasing stroke—such as controlling blood pressure and cholesterol—are similar to decreasing other cardiovascular diseases,” he says.
It wasn't necessarily lifestyle choices that led to Santiago's stroke. She was not overweight, was physically active, had never been a smoker, and drank alcohol only rarely. “I have a glass of wine on my birthday and champagne on New Year's Eve,” she says.
Unfortunately for Santiago, for the seven years prior to her stroke, she had been treated for a heart condition that made her five times more likely to experience a stroke: atrial fibrillation.
“Atrial fibrillation is an inefficient contraction of the atrium in the heart,” Dr. Caplan says. The atrium is a chamber in which blood enters the heart, as opposed to the ventricle, where it is pushed out. “Inefficiency in the way the atrium contracts can cause stagnation and a clot to form, and then that clot can be expelled out into the brain or other organs, causing a stroke,” he says. (See page 12 for more on atrial fibrillation.)
RECOVERY FROM STROKE
Fortunately, Santiago's doctors told her the stroke was small and limited in scope. “I didn't have any muscular issues,” Santiago says. “I wasn't affected in any way other than not being able to understand what I was reading.”
But a writer not being able to read is no small disability. When her doctors told her the stroke was expressing itself in Santiago's inability to comprehend the written word, she asked, “Does that mean forever?”
Fortunately, the answer was an immediate no.
“The great majority of stroke patients get better,” Dr. Caplan writes in his 2013 book, Navigating the Complexities of Stroke, from Neurology Now Books. (Go to bit.ly/NN_StrokeBook to purchase it.) “Some improve so much that they return to normal or near-normal function.”
Recovery from stroke does not occur because brain cells that die as a result are brought back to life. “You can't resurrect cells that are dead,” Dr. Broderick says. Recovery occurs, first, when blood flow is restored to the brain after the initial period of acute stroke subsides.
“Some areas of the brain may not be getting enough blood to function but haven't been irreversibly damaged,” Dr. Caplan says. “If the clot passes or other blood vessels provide circulation, those areas may be restored to some degree.”
“In addition, parts of the brain that weren't damaged may be able to take on some of the functions of the damaged parts,” Dr. Broderick says. “These parts may be doing something they weren't originally designed to do, and sometimes the workaround may not work quite as well, but often it works well enough.”
The brain's ability to change throughout life and develop new connections—called plasticity—may also help in recovery from stroke. While younger brains are more plastic than older ones, almost all brains are capable of some degree of recovery and change.
“The brain can make some new cells that help you learn new things,” Dr. Broderick says. “And it certainly makes new connections all the time. Every single day, the brain is making new connections based on new experiences.”
“Every time you learn a new process, the brain rewires and reorganizes itself,” Dr. Broderick notes. “When you do something repetitively, you can actually rewire your brain.”
RELEARNING HOW TO READ
Rewiring her brain was exactly what Santiago intended to do. While in the hospital, she tested her ability to read.
“I asked a friend to bring me some magazines. He showed up with a stack that he put in order, starting with the really superficial,” she recalls. “At the top was Tiger Beat, and at the bottom were The Atlantic and The New Yorker.”
Unfortunately, Santiago was unable to really read any of them, although she concedes she was able to glean more information about teen movie stars from the photos than she needed, she says with a laugh.
When Santiago was sent home from the hospital, she was still unable to read but otherwise showed no outward effects of her condition, a reality that proved frustrating to her at times.
“Everyone said ‘you look fantastic, you don't look like you had a stroke,’” Santiago remembers. “It enraged me, because I knew that something major had happened and I was working so hard to get over it.”
Santiago started teaching herself to read again, a task that proved familiar. She'd been through the process years before, when as a Spanish-speaking teenager, she moved from Puerto Rico to New York City.
So as she'd done as an immigrant years before, Santiago headed to the library to learn how to read.
Approximately 800,000 Americans will have a stroke each year. More than three-quarters of those will be first strokes; the remainder occur in people who have previously had another stroke.
130,000 Americans die from stroke every year, or one person every four minutes. Stroke is the fourth leading cause of death in the United States, responsible for one in every nineteen deaths.
Stroke is a primary cause of long-term disability in the United States.
Although stroke can occur at any age, in 2009 nearly two-thirds of people with stroke were sixty-five years or older.
Although stroke can occur in any race, African-Americans are twice as likely as whites to have a first stroke—and more likely to die following a stroke.
Approximately 87 percent of strokes are ischemic, which results in a blockage of blood flow to the brain. The rest are hemorrhagic, which results in excessive bleeding in the brain.
The estimated cost of stroke in the United States is more than $36 billion a year.
“I started looking at children's books and doing the exact same thing I did when I was learning English at age 13,” she recalls, “starting with the alphabet books, then the ones with whole phrases, then whole sentences and paragraphs, and finally to chapters and then books.”
About six months after her stroke, she opened Charles Dickens' Bleak House and could understand most of it. “I just burst into tears,” she says of the relief she felt.
While Santiago's recovery from stroke has been largely successful, it is far from complete. She estimates that today her reading ability in English is at about “98 percent,” and in her native Spanish about “80 percent,” in part because she's spent more time focusing on English and lives in the United States. Still, she continues to work hard at recovering function.
“I still struggle a bit, but I'm not afraid of looking up words,” she says. “I go to the dictionary if I have to; I read a sentence two or three times if I have to; I sound it out.”
Even with the progress she's made, Santiago concedes her brain is different than it used to be. She no longer plays online word games like “Bejeweled” because they make her “blood pressure rise.”
“Also, sometimes I get confused with grammar when I'm speaking,” she says. “When I'm tired, my brain just has to rest and then I can continue. I'll be in the middle of a sentence and I can visualize what I'm trying to say, but it doesn't come.”
Friends of a similar age tell her they experience the same mental lapses, but Santiago experiences these symptoms with what she calls a “constant sub-terror” that they might indicate she's having another stroke. So far, however, she has had no other strokes, and today she is living happily ever after as a working novelist, wife, and mother. Admittedly, the writing process is slower and more labor-intensive than it used to be: Santiago used to regularly produce as many as three thousand words a day, but now her output is closer to three hundred. She has to edit herself more closely than previously and has to re-read her work more often to be sure the words she sees in her mind are the ones that end up on the page. She's undeterred, however, continuing to write, and the novel she's currently been working on is scheduled to be completed soon.
And, by the way, since her stroke Santiago has even read War and Peace.