One of the hardest parts of having aphasia is getting people to understand I know what I want to say. My intellect is intact; in fact, my IQ is 127, which is higher than 95 percent of the general population. I just can’t get the words out as easily as people who don’t have aphasia.
Imagine you wake up on a remote island where you don’t speak the language. Your brain is fine, but you can’t express yourself clearly, or understand what other people are saying. How patient do you think they’ll be with you? How quickly do you think they’ll assume you’re just slow? Take away language, and you often take away self-esteem and dignity.
For me, it started early. When I was 10, my family went to Vegas for vacation. My relatives were waiting for me in the lobby of the MGM Grand when I started throwing up. I fell asleep and woke up an hour later with my arm twitching. I went to the hospital, but had a seizure shortly after I arrived. I can’t pinpoint when the stroke happened. All I know is that it took away both my mobility and my ability to speak.
During the first few weeks after the stroke, I had no idea what was going on. I couldn’t understand anything people were saying to me. I couldn’t talk. I couldn’t read. I couldn’t move the entire right side of my body. I had trouble swallowing at times. I needed two brain surgeries and three months of rehab before I could go home. When I went back to school, I was placed in special ed; before the stroke, I had been in the gifted program.
Most of the teachers and students didn’t know how to interact with someone like me who, at the time, could barely say a word. I was relearning the alphabet and numbers and how to spell my own name. I had an hour of speech therapy before school and two hours afterward. Not to mention all of the physical and occupational therapy I went through.
Figuring out how to get around in a wheelchair and how to move with my weakened right side was way easier than dealing with not being able to talk. At least with a wheelchair, there’s access to a lot of places. My inability to communicate limited everything. Answering the phone. Ordering at a restaurant. Asking for help. I had been really outgoing before, but suddenly, there was so little I could do. It was miserable.
Fortunately, my parents found Brehm, a boarding school in southern Illinois that specializes in helping students with learning difficulties. It wasn’t like at public school where it felt like people gave up on me. One teacher even told my mom that I was using my stroke as “an excuse.” She didn’t understand aphasia at all. Most people don’t. The teachers and speech pathologists at Brehm were the exact opposite. They dedicated their lives to helping their students. Brehm had assisted-technology training as well. I learned how to use computers more to help me with language. They also taught us about our rights under the American with Disabilities Act and gave me the best piece of advice I’ve ever received: Be your own advocate.
I certainly try to be. For instance, not long ago, a business gave me a hard time because I kept returning things. I had to explain that I wasn’t being picky. It’s just that when one of your hands doesn’t work, you need to try a few things out before you find one you can use. The same kind of thing happened during one of the aphasia cruises we offer as part of the Aphasia Recovery Connection. We asked our travelers to meet in the ship’s nightclub area. To get there, you either had to take the stairs or use the elevator. The ship’s staff, though, told us we couldn’t use the elevator! Something about teenagers spilling out into the dance floor area. After being told “no” repeatedly, I finally took a picture of the guy’s ID badge and informed him, “The ship needs to be ADA-compliant, so don’t tell me we can’t use the elevator.” He got mad, but any time we asked for something afterward, the cruise staff answered with an immediate yes.
I wasn’t always that bold. There was a time about 10 years ago that I barely would leave the couch. My speech was so bad. Making and keeping friends seemed impossible. Going on the cruises is what turned things around for me. They forced me to talk to people. And when you’re around people from different parts of the world who speak different languages, everyone is more patient with one another. I felt less judged and more accepted. I found the phrase “language barrier” played to my advantage. With the people I met on these trips, what we didn’t understand about each other actually connected us more deeply.
It’s like I came back to life. I established a bunch of good friendships. I saw more of the world. And most importantly, I met my partner, John. It was six years ago on a transatlantic cruise from Boston to Europe and back. He’s an accomplished anesthesiologist, but he never judges me for not finishing college. He knows my problems with language and comprehension don’t mean I’m unintelligent. He doesn’t see the disability; he sees me.
The reality, however, is that my recovery took a very long time. That’s one of the reasons I’m so committed to helping others with aphasia — I want them to learn from my experience and understand they’re not alone. To that end, I’m in the midst of finishing my third book with my older brother, Dr. Mike Dow. He lived through my hardest times with me. For the book, we collected a list of 100 questions from people living with aphasia via social media. The questions ranged from wanting to know about the latest advances in stem-cell research to more straightforward stuff about exercise.
My story is woven throughout. And I’m honest. Some things didn’t work for me. For instance, constraint-induced therapy, which pushes you to use your affected limb more by putting the good limb in a sling or restraint. But I don’t discourage it. Each stroke and survivor is different.
It’s sad that there’s so much misinformation about aphasia out there, especially after a spokeswoman for Donald Trump claimed that Hillary Clinton suffered from it. I saw a video recently where someone did man-on-the-street interviews asking people what they thought aphasia was. A lot of them answered that it was a plant. That’s crazy to me. Especially because there are about 2 million people in the United States suffering from aphasia. And many of them live with chronic aphasia — an inability to say anything beyond a few simple words, text or read a newspaper.
I’m lucky in that regard. Relatively speaking, my life is easy these days. I go to Starbucks in the morning. I listen to a lot of tech podcasts. I check Twitter and read USA Today for news. I cherish all of it. Communicating with the outside world is something too many people take for granted. I don’t. I know firsthand how lonely and isolating it can be when no one else can understand you, even though you know exactly what you want to tell them.
—As told to Ben Feldheim