STROKES ARE NOT JOKES: It is not OK to laugh at people who have had a stroke
The reality of my new normal hit home when I tried to read on my Kindle for the first time. As the screen lit up, all I saw were nonsensical symbols and squiggles, some of them morphing into different shapes while I stared at the page. I thought my Kindle must be broken, so I opened and closed it a few times, but I could not comprehend what I was looking at. I couldn’t identify a word. I didn’t understand what words were.
This can’t be right … it started to sink in that maybe I couldn’t … holy shit, I can’t read?! I burst into tears, and my heart was pounding so loud, it started to hurt my ears. Oh, no, no … this cannot be happening …
I ran downstairs to show my Mom, but at the time, I could not speak and the only way to communicate was to write in the yellow notebook we took everywhere. All I could write was 1 … 2 … 3 … mimicking the turning of pages while my agitation escalated. I was crying harder, but Mom didn’t understand. She asked me a few yes or no questions until she got it, and opened her arms to me and said, “Don’t try right now. You will be able to, but not now. It’s too hard.”
I fell into her arms, sobbing in big gulps. When I finished crying after an extended period of time, I was exhausted. I felt spent and empty and sad and angry. Wait—I can’t read? How am I ever going to write?!
I had a stroke during my surgery in Vienna in 2013, at age 44. The doctors there couldn’t say I’d had a stroke. They claimed it was psychosomatic, due to the anesthesia. Later, back at home in San Francisco, a new set of films showed that I’d had an ischemic stroke (ischemic stroke occurs when a blood clot blocks or narrows an artery leading to the brain) in the left temporal lobe of my brain.
At first, I had severe aphasia and could not speak, read or write. My right side was also impacted, my face droopy, my hand curled up into a claw that lay on my chest like a sandbag. Then months became years of rehab. My stroke forced me to take a leave of absence from my job. I had a son who was 3-and-a-half at the time.
My partner couldn’t cope, and a couple of months into my recovery, filed for divorce. My Mom and younger brother stayed with me for the better part of two years, as I struggled to regain function.
Losing my ability to read rocked me
Now, eight years later, my recovery continues. I’m living it every day. What prompted me to write this piece is that I—as a stroke survivor—am tired of being made fun of when stroke is used as a punchline in film and TV. More and more, I hear references to “having a stroke” and “stroke out” in the media, when stroke is used as a joke. I started keeping track of these instances, but there are too many.
It’s not about making fun of strokes as a category. We’ve learned in the past decade or so that strokes have been acknowledged as serious business. That awareness is out there. What’s causing pain today are two factors at play: First, making fun of people showing the symptoms of stroke, i.e., you are behaving in an abnormal way, so it looks like there’s something wrong with your brain: “OMG, you’re having a stroke!”
Second, making fun of people who have had one, like me. In comparing me (stroke survivor) to another person (who’s just been the butt of the joke), you’re making it look like I am acting abnormally too, or my brain is messed up, or whatever device the writer chooses to use, such as: “What’s wrong with you? You’re being weird. You must have had a stroke!”
Of course, I can’t speak for stroke survivors at large, but I do know I’m not alone in this.
Eighty-seven percent of strokes in the United States—that’s 695,000—are ischemic, like mine. I had a clot that travelled through my aorta and exploded into my temporal lobe, leaving a trail of dark, cobwebby fingers spreading throughout the left side of my brain, wiping out much of my ability to speak, read, write or think clearly.
Losing my ability to read is what rocked me to the core. I always wanted to be a writer, and in high school and college, I won awards for Fine Arts and Creative Writing. I graduated magna cum laude, and I earned two degrees simultaneously at Brown University. Now, eight years after my stroke, I still read painstakingly slowly, and it can take 15 to 20 minutes to craft a decent sentence. I spent 101 hours working on this article.
At the time of my surgery in 2013, I was working at Adobe Inc., one of the largest software companies in the world. In late 2012, I was promoted to Chief of Staff, under the Senior Vice President and General Manager of the digital media business unit. The Chief of Staff plays a critical role: from a proxy for the executive to acting as a confidante, personal strategic consultant, practical implementer and trusted partner at the highest level, one step below the CEO.
I was excited to start my new role at the beginning of January. My boss and I had a 15-year working relationship; we respected each other and enjoyed working together. We were also friends. The operation wasn’t a problem; he knew it was scheduled for the first week of February, and I’d be back at work in six weeks.
Strokes come with disabilities
On February 5, I had my stroke during my surgery. I was not able to return to work for a year and a half. When I was finally recovered enough to go back to the office for the first time, my boss had a new Chief of Staff.
I felt like I’d been run over by a double-decker bus. Neither my boss nor Adobe had wronged me—I just realized I did not have the cognitive capacity to do the job. There it was: My career in software was over. So many of the mental capabilities I had before, wiped away. Adobe was good to me; I stayed employed on a very part-time basis in a different role, but it wasn’t going to work over the long term, so I left.
Never in a million years did I think I would have a brain injury. Those things happen to other people … right?
Strokes are not jokes. They come with disabilities. Making fun of a stroke is the same as making fun of any disability, whether you can see the person’s disability or not.
My Mom and I love going to the movies, and we went frequently while I was recovering. I was particularly excited to see The Big Short (2015), a story about white-collar crime starring Brad Pitt.
While we were watching, relatively far into the film, during a dinner scene, Brad Pitt says: “Just when I start thinking you guys are clowns, no one on the planet is betting against AAs. The banks will think we’re either high or having a stroke, and they’ll take every dime we have to offer. Kinda brilliant.”
As soon as I heard “stroke,” BAM! The wind was knocked out of me, followed by a mammoth punch to the gut. I sat in my seat, unable to move, my feet bolted to the floor, completely diminished and trivialized, the word embedded in my brain like a careless toss over the shoulder.
The rest of the movie was a blur. I remember going home afterward, feeling incapable of brushing it off, still shaken about what I’d seen. I wished Brad Pitt—or the writer or director—could have chosen different words. That would have been an easy fix.
Strokes are the second leading cause of death in the world, and fifth in the United States. In the U.S. every year, nearly 800,000 people have one, and of those, 23 percent will suffer another. Worldwide, stroke takes a life every five seconds. Anyone, anywhere, at any time, can drop dead from a stroke.
There is a dramatic variance among races and demographics: The risk of having a first stroke is nearly twice as high for Black Americans as whites. Black American women are twice as likely to have a stroke as non-Hispanic white women. The highest death rates in the nation are located in a region called the “Stroke Belt” in the southeastern states, and in this region, average stroke mortality (for all races) is about 30 percent higher than in the rest of the country.
Not everyone dies, however. There are 10 million stroke survivors alive in the U.S., and two-thirds of them are currently disabled, like me. My son was diagnosed as twice exceptional and with high-functioning autism at age eight, and he’s disabled, too.
In our house, we use ‘diff-abled.’ We share a special bond because our brains are wired differently, and we are proud of it. He is an extremely bright kid and loves to correct me; sometimes, we become painfully paralyzed with laughter when I make a malapropism, like “soozy lazen,” meaning “lazy Susan.”
I have become hyper-aware
When a child enters your life, you put down everything and pour your heart and soul into raising that child. You sacrifice. You bend over backward to ensure your child grows up to be a successful, compassionate, kind human being. That was my job, taking care of my special needs kid.
But when I had my stroke, roles changed: My Mom was there for me. She helped me get in and out of my clothes; she held my injured arm to stabilize me, so I would stay upright in the shower; she squeezed toothpaste onto my toothbrush; she kept my hair out of my face while I rinsed and spat into the sink. I had to start over, and in doing so, with the support of my family and friends, I learned patience, empathy and humility, the hard way.
I look at the world through a different lens now. I’ve become hyper-aware of other people’s disabilities in the waiting rooms, rehab sessions and stroke communication classes at City College. Every one of those disabled persons has a story. Those who are invisible and have no voice matter even more.
When I think about the 10 million stroke survivors out there—never mind the 800,000 who have one each year—I imagine what each individual has gone through to get to the other side. Everyone recovers differently; only 10 percent “almost fully recover.”
Just after my stroke, I was diagnosed with depression and anxiety, and my chronic migraines tripled. I had to rely on my Mom and brother for everything, not just for me, but also for my twice-exceptional son.
It used to be commonplace for Hollywood writers to use terms such as “moron” or “retard” or “mental case,” or “that’s so gay!” We have grown as a nation, of course; we no longer think those words are funny in TV and films … right?
So why is it OK to laugh at people who are having or who have had a stroke?
«RELATED READ» TIME IS THE BEST HEALER: Embrace YOU when illness strikes young»
image 1 Image by Gerd Altmann from Pixabay 2 Image by Free-Photos from Pixabay 3 Image by justraveling from Pixabay
Published at Sun, 20 Jun 2021 16:30:00 +0000