At a coffee shop, Brian Mottolo will allow other customers to go ahead of him. He'll wait in the back, practicing his order in his head. When it's all clear, he'll approach the counter and say, "Medium dark roast. Cream and sugar."
When Mottolo, 52, shared that story during a meeting at Magee Rehab recently, his audience lauded him.
"You've been practicing!" speech language pathologist Sarah Lantz said. "That's good. That's real good."
Mottolo has aphasia, the loss of the ability to use language because of damage to the brain. Most common after a stroke, as in Mottolo's case, aphasia can also be caused by a traumatic brain injury or brain tumor. It's a disorder that is little-known, yet affects a large and growing population: the National Institutes of Health estimates that one million Americans have aphasia.
Darlene Williamson, president of the National Aphasia Association, suspects the actual figure could be twice as high because frustrated sufferers drop out of society and aren't counted.
"It's a communication disorder, so people who experience aphasia aren't able to speak for themselves and get attention," she said. "Speaking, listening, writing and reading are involved. . . . Just imagine if you woke up tomorrow and you couldn't communicate."
1 in 4 stroke sufferers
At least 25 percent of the estimated 795,000 Americans who will have a stroke this year will acquire aphasia, according to Williamson's nonprofit organization. Symptoms can vary widely. While many have trouble speaking, others also struggle to process words being spoken to them, to read and to write.
Former Congresswoman Gabrielle Giffords, who survived a gunshot to the head in 2011, has aphasia. Her occasional TV appearances showing her speaking haltingly and carefully have made her perhaps the most visible of the condition's sufferers.
What aphasia does not do is affect intelligence, though many people fail to grasp this.
"Language is such a pervasive feature of being a human being that when you can't talk anymore, people find it very frightening, even if your other cognitive features are pretty much intact," said Audrey Holland, a University of Arizona professor and one of the nation's most respected aphasia researchers. "People see it as, you must have a lot of other things wrong with you."
At the back of the line
Which is why Mottolo, who lives in Center City, will wait in the back of a coffee shop until crowds thin. It took him more than a minute to describe the routine summed up in three sentences above. There were pauses between words. He was clearly uncomfortable.
"Dunkin' Donuts . . . I can't speak . . . Coffee . . . Oh, God. . .," he stopped and twisted his face, then began again. "Line . . . Sit back in line . . .. By myself."
There was a longer pause, about 20 seconds long. "Then . . . medium dark roast, cream and sugar." Only the last six words flowed easily.
Mottolo carries a business card with his name and details about his condition. "I have aphasia. Please be patient. I have trouble talking," it says on one side. The other reads, "Aphasia is a language disorder, usually the result of a stroke or head injury. A loss of words, not intelligence."
"It's hard enough to deal with aphasia but it's even harder to go out in public and see how you're treated," said Carol Dow-Richards, director of the nonprofit Aphasia Recovery Connection, who calls aphasia an "invisible disability."
Support groups become even more important in light of aphasia's potential to lead to isolation and depression. The Magee group has about 20 regular attendees, a few who have been coming since the 1980s.
"Knowing there are other people out there in similar situations, hearing their stories and seeing them overcome obstacles can help," Lantz said. "I wish we could pull out the people hiding in their homes and give them some hope."
Putting it to music
Before his stroke, Mottolo was a hotel concierge whose affable personality and chattiness fueled his success. After his stroke, he couldn't converse freely. He was surprised the first time he found himself singing along with the car radio while going to the theater with speech pathologist Lantz.
Singing familiar songs can help aphasia patients feel whole and make socializing easier. During a 2014 interview on the Today show, for example, Giffords sang two lines from Tomorrow, from the musical Annie. There are aphasia choirs in Vermont, California, Texas and Minnesota. The Australian choir Stroke a Chord has received international attention, with researchers concluding that choir members felt more confident and satisfied than those not participating in such a group.
"One of the most exciting breakthroughs in the last 15 years has been the growing understanding of the social consequences and the [focus] on bringing a person back to life again," Holland said.
Lacey Ziman, a therapist who runs a similar support group at Bryn Mawr Rehab Hospital, said these meetings are sometimes the only places people with aphasia feel comfortable socializing. The interaction improves both their speech and their moods.
"Some people are discharged from therapy and this is all they have to keep them going and it's nice to see their progress," she said. "When they're surrounded by people who are going through what they're going through, their guard is completely dropped. . . . It takes them a little longer to speak, and there may be errors here and there, but it's a really important part of their lives."
Aphasia also doesn't take away laughter, Williamson said. "It's a big part of recovery," she said. "I sit in my office and listen to people hoot and holler and it's the best feeling. . . . Over the long haul, people with aphasia interacting with each other laugh at themselves."
Recovering after therapy
Dow-Richards said those with aphasia "have to own their own recovery." While post-stroke or accident therapy sessions vary by insurance provider, recovery continues long after those sessions end.
"Too many people are told or assume, 'If I have aphasia, I might improve a little but after six months or a year, I'm done.' That's old science," she said. "New research shows the brain does have the ability to change and make new pathways. . . . It doesn't automatically repair itself unless you work it, so you've got to keep pushing it like you'd push any other muscle."
That's what worked for her son, David, who was 10 years old when he had a massive stroke in 1995. Some medical professionals thought him beyond recovery and recommended he be put into a nursing home.
Instead, David Dow had speech therapy every day for 17 years, his mother said. He went from being able to speak three to five words to now speaking to others about the challenges of living with aphasia. He cofounded the Aphasia Recovery Connection in 2013 with another young stroke survivor, Christine Huggins, and their mothers.
"You have to find your own places for support," Dow-Richards said. "People should not have to go through this alone."
Joe Greenhouse travels to Philadelphia from his home in Central Jersey once a month to attend the Magee support group. He was an executive with a computer technology firm before he had a stroke 13 years ago at age 56. He was unable to speak for more than a year afterward.
But he never stopped trying. He spent eight weeks taking part in extensive speech therapy in Boston. He researched speech-generating devices and acquired one of his own. He joined multiple support groups and has weekly speech therapy at Columbia University.
"Words better now," he said.
Greenhouse spent more than a year preparing his toast for his daughter's recent wedding. He has a video of himself giving the speech on the tablet-style communication device he carries. Group members watched and listened when he recently played the one-minute clip.
While it was sometimes difficult to understand Greenhouse's every utterance, the emotion was clear. His final word was the clearest: "L'Chaim!"