Brockport resident shares her experiences to support others with traumatic brain injuries

Sophia Charles, a Brockport resident, started a support group for people with traumatic brain injuries after experiencing a brain aneurysm in 1996. The group varies in size from 2 to 15. Charles is a graduate of SUNY Brockport (2004) with a degree in physics. She spends time in physical therapy, owing to her symptoms of Lupus. She volunteers at the Sweden Senior Center making quilts and she volunteers for the Lupus Foundation. She enjoys helping people: “It makes me feel good to provide information to people who have problems with health assistance.” Photograph by Walter Horylev.

Brockport resident shares her experiences to support others with traumatic brain injuries

Don’t give up. Those are the words and life story of Sophia Charles, a Brockport resident who has started a local support group for individuals with traumatic brain injuries.

Charles had just completed her freshman year at SUNY Brockport when she was struck with a brain aneurism. The aneurism left her in a coma for eight days fighting for her life, and unlike many with the condition, Charles won the battle.

“My parents said the first thing I said when I woke up (from the coma) was, ‘I have class on Monday and there is a party in Buffalo on Friday,-’ ” Charles said. “The doctors called it a miraculous recovery.” The partying would have to wait, however, as she couldn’t walk or talk, she had short term memory loss and aphasia (which is the inability to recall words). Systemic lupus, a debilitating disease that she was diagnosed with after the aneurism, compounded Charles’ health problems.

After a year of frustrations with physical therapy and many restrictions on what she was allowed to do, Charles left her parents’ home in Mount Vernon to come back to Brockport to resume working toward her degree in physics. She soon realized that going to school wasn’t quite as she remembered it.

“Reading, writing and spelling, you name it and I had problems with it,” Charles said. “It was much harder. I did things like I didn’t have a brain injury.” Despite the advice of many who recommended selecting a less challenging major, she continued to pursue her degree in physics, which she earned eight years after she started.

Charles takes a lot of pride in her degree (she plans to continue on in the future) and believes that her experience in the Physics Department is a big reason why she still lives in Brockport. Her battles with Lupus and the after effects of her aneurism forced her to learn new ways to complete her work, and to repeat some of her classes. While she struggled for her degree, Charles found amazingly supportive professors and staff who helped her along the way. Her physics professors volunteered to drive her to doctors’ appointments and she continues to spend many holidays with Phyllis Lista, the former department secretary. Still today, Charles volunteers for the department.

“I think it (her ties to the campus) is one of the main reasons I stay in Brockport,” Charles said. Dr. Richard Mancuso, former Physics Department chair, is happy that Charles still lives in Brockport and is glad he had the opportunity to make her acquaintance while they were both at the college.

“Sophia is unique. There is no one else like her,” Mancuso said. Mancuso, who retired from SUNY Brockport in August after nearly 40 years, still keeps in contact with Charles. Mancuso finds his friend’s story inspirational.

“I recently asked her why she took physics and she told me ‘because it was hard,’ ” Mancuso said. “She took it because it was a huge challenge for her and she learned to love it. She was at the depths of educational depravity and she ended up being able to do some very sophisticated academic things.”

While Charles’ story is inspiring, it wasn’t her own personal situation that led her to start the support group. For that inspiration she looked to her mother.

In 2001, Sophia’s mother had a stroke and as a result suffered many of the physical hardships that Sophia had been dealing with. To date, her mother still has not recovered to the extent that Sofia has. After watching her mother struggle and feeling as though she is not getting the help she needs, Sophia decided she needed to start a local support group to make sure others don’t have the same experience.

The group began in summer 2004 and meets on the first Tuesday of every month at the Seymour Library. There are usually five people in attendance and there have been 22 different participants since the group’s inception. The group is working together to write a book that will give guidance and information to people who live with brain injuries. In addition to their monthly meetings, the group also enjoys a monthly social activity.

Those interested in joining the support group can attend the monthly meeting or contact Charles at 637-5965. Charles is hoping to give back to a local community that has been supportive of her through this group and through other volunteer initiatives in which she is active.

“I would love to know why (I recovered from the aneurism),” said Charles. “Hopefully I’m going in the right direction.”