(Photo courtesy Donna Williamson)
TAMPA BAY | Cozied up together on a couch for a Zoom interview, Donna Williamson and Tara Anderson are having trouble remembering how long they’ve been together.
Or rather, Donna is having trouble.
“Ooh… maybe 17 years?” she asks Tara.
“No,” Tara replies.
“18?”
“No.”
“I always get it wrong.”
Then Tara holds up two fingers.
“2009?”
“No.”
“2002?”
“No.”
Finally, Donna figures out what the two fingers mean.
“20 years?”
“Yeah,” Tara replies, and they both laugh.
“I’m not good with that kind of thing,” says Donna.
But Tara clearly is. It’s just that she can’t get the words out.
“She’s trapped inside of her own mind,” says Donna. “It’s all up in here, but it just can’t get out there.”
Tara suffered a stroke three years ago at the age of 54, which left her with the language disorder known as expressive aphasia. While the condition has profoundly limited her ability to speak and read, she is still able to listen and comprehend (a blessing, since other forms of aphasia erase those abilities as well).
In the early days after her stroke, the outlook did not look sunny.
“At first I had no idea how to maneuver this new world,” recalls Donna. “I’d lost my best friend, the person I talk to, the person that talks to me, my person. But I knew she was in there.”
The couple joined Voices of Hope for Aphasia in 2022, and credit the organization with playing a big role in Tara’s progress. The St. Pete-based nonprofit has been helping people with aphasia and their families for 13 years through group activities and online meet-ups. The programs do not replace speech therapy, but facilitate progress through socialization.
“Being robbed of the power of language can lead to frustration, depression and even thoughts of suicide,” says VOH Executive Director Debbie Yones. “VOH strives to create a community where every voice is valued, understood and supported.”
Tara beams when asked about friends she’s made through VOH activities like the book club. Members (VOH does not use the word “patients”) choose books from selections made by a staffer, then discuss and rate them either in person or online. Tara’s group has just begun Steven Rowley’s “The Guncle,” about a gay uncle, which Tara is listening to as an audiobook; so far, she rates it a “3.”
Donna says she feels included in VOH’s programs, too.
“Caregivers, spouses, partners — we’re all part of one happy family,” says Donna.
The couple, who now live in Tampa’s Citrus Park neighborhood, met through their jobs at a research company in North Carolina. Tara was a finance manager, and Donna worked with a group that did military simulations for the Army.
“We just met at the coffee machine one day, had lunch, and it’s all history from there,” says Donna.
Tara had planned to keep working another 10 years, and Donna, who is now 62, had more years to go, too. But the stroke changed everything. Tara not only lost her power of speech, she also has apraxia, a motor disorder.
“She got the whammy,” says Donna. “She can’t walk and she can’t use her right arm.”
Which meant that Donna had to become Tara’s full-time caregiver, and neither woman would be bringing in income anymore.
That kind of financial shock is common among families affected by aphasia.
“It’s a huge hit,” says Yones. “Who expects it? That’s why at VOH we will never turn anybody away based on ability to pay. It’s not a burden that we need to put on our members.”
But that also means that VOH depends on grants and donations to keep its programs free.
That’s where Word Play 25 comes in, returning to Banquet Masters in Clearwater on May 15.
VOH’s third annual fundraiser is a celebration of the joys of language — “playing with words to highlight the impact of losing them,” says Yones.
There’ll be dinner, word games, opportunities to give and — the evening’s centerpiece — a crossword competition. Every table receives a crossword donated by New York Times puzzle constructor Kevin Christian and created especially for the event. Last year, Rays relief pitchers Pete Fairbanks and Jason Adam were special guests and finished in second place. This year we’ll see if a table of invited Pinellas officials will beat the pitchers’ record.
Tara and Donna will be at Word Play, too. When Yones joined our call and told them they’d be able to attend (thanks to donated tickets), they were utterly delighted.
Because they’re both word people. Before Tara’s stroke, the couple played lots of Scrabble, says Donna. “She more times than not beat me.” Tara was also “big into crosswords. She had I don’t know how many books.” She still plays word games online with the help of apps like Color Words and yes, Scrabble.
On May 15, they’ll be among friends who understand — both the pleasure of words and the struggle to recapture the words that are lost. VOH hopes anyone who supports their efforts will join them. Read more below:
Word Play 25 will be held May 15 from 6:30-9:30 p.m. at Banquet Masters, located at 13355 49th St. N. in Clearwater. Individual tickets are $95 and tables of eight are $1,000. Learn more and purchase yours t WordPlayTampaBay.com.
