Stroke survivor speaks out about aphasia

Many Americans spend time finishing school, looking and settling into jobs and careers, landing promotions, getting married, traveling and having children throughout their 20s.

And in 2011, Marietta native Christine Huggins was no exception. A graduate from Dartmouth College with a law degree from The University of Iowa, Huggins had passed the Ohio Bar, was working as a clerk for the U.S. bankruptcy court in Cleveland and was planning a Christmas wedding.

Then in April, at the age of 26, the Marietta High School graduate suffered a massive stroke as a result of a Patent Foramen Ovale, more commonly known as a hole of the heart, that allowed a blood clot to travel from her heart and attack her brain. The stroke left her weak on her right side and resulted in the communication disorder known as aphasia.

Now nearing her 30th birthday, Huggins is the co-founder and president of Aphasia Recovery Connection, a nonprofit organization dedicated to programming and providing international support and technology education for victims of aphasia and their friends and family.

“I could not talk, read, write or process language for a while, and I have a weak right side after the stroke,” Huggins said. “Since then I have been able to improve after spending time with therapists and at the Cleveland Clinic.”

Huggins quit her job in Cleveland and moved back to Marietta to be with her parents.

“For people with aphasia, your whole life is really dark and different for that period of time,” Huggins said. “Your jobs, friends, everything can get cut off. They’re supportive, but you can’t talk to friends, you can’t talk to people on the job.”

Huggins’ mother, Kim, said the close-knit community of Marietta help speed up Christine’s recovery.

“Ironically, I had breast cancer, and I was set to have surgery right after her stroke,” Kim said. “We are so fortunate to live in Marietta, because everyone has been so supportive.”

Prayers, flowers and calls and letters of encouragement poured in from area churches, individuals and even former colleagues and students from Kim’s years spent as a teacher for Marietta City Schools.

“She had to learn everything again and it’s hard because part of her brain doesn’t function,” Kim said. “They sent me all these materials from their classrooms so we could reteach her words and how to link them together again.”

Besides the strong support she gives in addition to Christine’s father, Jim, and her brother, Nick, being able to have Christine in Marietta made a big difference, Kim said.

“We had to find a speech therapist and get her back to Marietta, and it took a long time because I was going through chemo, too,” Kim said. “We were able to find a teletherapist that could do this online, so I can listen in and help her through what she needed to do so we could stay here.”

In 2012, Huggins and her family met David Dow, who suffered a stroke at age 10.

Both suffer from global aphasia, which means the disorder affected them across the board with reading, writing and speaking.

“The first year was so isolating because I could not understand my family, and I could not order a drink, and it’s like learning a different language again,” Huggins said. “I thought I was the only person with this problem at this age.”

She and Dow, with help from their families, founded Aphasia Recovery Connection with the mission “to help end the isolation of people recovering from aphasia.”

In 2013, the organization received a Raising Awareness in Stroke Excellence award from the National Stroke Association.

The organization offers two annual cruises, a conference and Ohio retreats for those affected by aphasia, along with a stronghold of videos, forums and online support.

“We want to have a purposeful life, helping people with information and tips and building a community for people with aphasia and their families,” Huggins said. “Our Facebook group has had 2,400 members for the past two years and we have people around the world helping others through their trauma and tragedies.”

The pair speak at a multitude of events annually, including an upcoming speech at the annual Youth Leadership Forum sponsored by the Ohio Governor’s Council on People with Disabilities in Columbus on Monday.

Huggins also serves on the Ohio Governor’s Council on People with Disabilities since she was appointed by Kasich in 2013, where she is serving a three-year term.

Director Carol Dow-Richards, David’s mother, serves as director of the ARC, and noted the organization is the largest support group in the country.

“The hard part about it is that you become socially isolated because other people really don’t understand aphasia, even though there is some 1.5 million people with (it),” Dow-Richards said. “Communication makes you human, and with a stroke, being in a wheelchair can be the least of your problems.”

One of the reasons the organization and the support is crucial, Dow-Richards said, is because it helps dispel misunderstandings.

“Aphasia does not affect intelligence, though it appears that it does,” Dow-Richards said. “If you meet someone that can’t speak, read or write well, you’d assume that.”

Huggins said she hopes to further expand programming and increase the reach of ARC, all while working to close the gap in the understanding of aphasia.

“With a strong family and support group and support worldwide, it’s been incredible to see people improve when they’re together,” Kim said. “There are so many people out there that need this and didn’t know it was there.”