Esmeralda Santiago's Recovery from Stroke
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AUGUST/SEPTEMBER 2014 BY TODD FARLEY Read All About It: Esmeralda Santiago’s Recovery from Stroke Having lost her ability to read because of a stroke, the acclaimed author began the dipcult but familiar process of learning a new language. 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. 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. Santiago at home with her husband, Frank Cantor, who is also her collaborator on documentary films. 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. "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.) 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. Act Fast 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. (See what the acronym stands for in "FAST!" below.) 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. ~e 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. Atrial Fibrillation 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. 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.