It was a typical Atlanta morning in January, 1991. Herb Silverman, then 27, was up early and doing his morning workout at the small gym in his apartment complex when something went awry. “I felt lightheaded and dizzy but didn’t know what the problem was,” he recounts. After lying down for about half an hour, Herb stumbled back to his apartment. Fumbling for the keys to go inside, Herb fell unconscious outside.
Herb lay there in 30-degree weather for about an hour-and-a-half before he was discovered by a maintenance man, who called 911. At the hospital, he was first treated for hypothermia. Seven hours later, the doctors realized he had also suffered a massive stroke.
Because there was no family history of stroke and Herb was a non-smoker in good physical health, this was most likely due to a blood clot that blocked oxygen flow to his brain.
After 10 days in a coma, one of Herb’s neurologists administered medications to reduce swelling in Herb’s brain. Herb woke up, cognizant, but with the entire right side of his body paralyzed, and his ability to communicate lost. He was diagnosed with global aphasia.
Aphasia is a communications disorder that can occur when the left hemisphere of the brain is damaged. It can be caused by stroke, brain injury, brain tumors and other neurological conditions. While it does not affect a person’s intelligence, it does affect the language networks in the brain.
There are around one million sufferers of aphasia in the U.S.
The symptoms of aphasia can differ. Those with non-fluent aphasia understand what is being communicated to them, but have trouble producing the words to express their own thoughts. Fluent aphasia patients can speak easily, but often cannot connect the words with their meanings. For Herb, global aphasia resulted in difficulties with listening and comprehension, as well as speaking.
“My ability to communicate was gone,” he says, “I had to start from scratch.”
Herb recalls when one of his doctors was diagnosing the severity of his aphasia. “The doctor asked, ‘What is this?’ and showed me his pen. Even though I was a little bit confused, I identified his pen and the doctor was very impressed.”
Unfortunately, “pen” was the only word Herb could say for the next six weeks. “My second word, ‘no,’ was useful, but I knew that my speech was going to take a long, long time.”
Herb was transferred to the Center for Rehabilitative Medicine at Emory University, where he was treated by physical therapists, speech pathologists, and other health professionals. He stayed at the center for several months, and then continued in its day program for half a year. That was just the beginning of his journey toward recovery.
According to the National Aphasia Association, a complete recovery from aphasia is unlikely if symptoms last longer than two or three months. However, patients can experience improvement over years and even decades.
After suffering a stroke at just 27, Herb was left unable to communicate. Now he works to raise #aphasia awareness.Click to tweet
As Herb puts it, “It’s not a sprint. It’s a marathon.”
Herb has been running this marathon for 25 years, and has been inspiring many other runners along the way. He speaks at conferences to educate others, volunteers as a mentor for new aphasia patients, and raises awareness with his blog, Unmistakably Herb. “I can bridge that gap between people who have aphasia and the community,” he explains.
Today, most people he talks to would never guess that he suffers from aphasia. Though he walks with a cane, he is able to express himself fluently and articulately. He still struggles, though, especially with prepositions, pronouns, and verb tenses.
“At times, I am vague or incomplete, so to speak,” he says. “I know in my brain what I want to say, but it can appear something different.”
Improvement was no easy road, of course. Herb pushed himself to stay positive and work as hard as he could, taking every opportunity to communicate with others, even if he had to use gestures or pantomimes. He did everything he could possibly do, and thus gained the nickname, “Mr. Do-It.”
“I would talk to anyone, at any time, about anything, just to have the interaction,” he says. “Yes, I made a lot of mistakes, but over time, with practice and support from my family and friends, I became better and better at communications and the way I talked to people.”
For three generations of Herb’s family, everyone except for himself was a teacher, and they weren’t afraid to correct Herb if he made a mistake. “It was great, because I wanted people who were going to tell me, ‘You know what? That’s incorrect.’ I won’t know unless someone tells me.”
Whenever a family member or friend interrupted him to correct and explain a mistake, he would thank them and then practice the correct way, “so I didn’t make the same mistake twice.” Eventually, he reached a turning a point about 10 years after his stroke, and realized he could correct his own mistakes in his brain before speaking.
“That was the key,” he says. “All of the sudden, my speed accelerated tremendously, and I also had new ideas, new thoughts.”
Herb has a great love for gadgets, technology, and social media. He has also used computer software such as Dragon Naturally Speaking and Text Aloud to aid in his language skills. With these, he can record himself or anything else he wants, and also review punctuation and grammar.
His greatest interest in using these web tools is to collect more resources and information for aphasia patients and caregivers.
“The society of aphasia people is very fractured right now,” he says.
“In Atlanta, I had access to the worldwide success of Emory. In another place, it may be very different. I am convinced that if we pool our resources together, we can do something that is dramatic.”
Right now, he is most passionate about raising awareness and advocating for aphasia patients to return to work. “It would be terrific because all of the sudden, they would be interacting again with other people,” he says. “Their recovery would be greater because they would be more at ease [with interacting] and more empowered.”
Recently, Herb was invited to present at the Clinical Aphasiology Conference, alongside more than 300 speech pathologists and clinicians. His two presentations included key messages for patients to remain positive and for caregivers to let the person with aphasia talk.
He says, “It hurts me to no end because what often happens is that the person with aphasia is trying to explain a feeling or an emotion but can’t think of the word or phrase it accordingly. Instead of letting him or her think about it for a couple of minutes, the caregiver will interrupt with, ‘Oh, he has aphasia. What he really wants to say is this.'”
Herb understands that it is human nature to want to jump in and assist the patient, but he emphasizes, “You have to let the aphasia person talk. Otherwise, there is no interaction.”
Those interactions can be challenging, like a difficult workout that doesn’t end. Herb illustrates this in one of his blog posts about what it would be like to have aphasia for one day.
Since beginning his blog in June 2014, Herb has published around 50 posts. A typical post of about 400 words can take him up to 12 hours to write. But he keeps up with this exercise to raise awareness and send positive messages out to the world. Of course, if he wanted a quicker way of raising awareness, he could consider creating some merchandise to sell to people in exchange for some donations to go to the charities that are doing research. Perhaps he could start with some custom hats, and then he could expand this merchandise with t-shirts and mugs. This would raise money for the charity, and save him from writing 12 hour blog posts.
He recalls telling a friend recently, “Suffering a stroke and having aphasia was a point in time-just one day.
One way Herb makes it better for himself and for others is by having great conversations about aphasia.
“When a person with aphasia or a caregiver or family member speak to me and we have a heart-to-heart talk, and the other person is now more engaged and directed than before, that’s nirvana for me. That’s perfection.”
June is Aphasia Awareness Month. If you know someone who has suffered a stroke or who is living with aphasia, make time for a conversation. Allow room for someone to express their thoughts or use conversation as a way to educate others about aphasia.