After regaining her voice,

River Edge resident gives back

August 13, 2012. MEGAN BURROW NORTH JERSEY NEWS

One month after her 40th birthday (November 2003), Eunice

Bustillo suffered a stroke. She lost her ability to speak, read or
write she also had vision problems and had some difficulty using
her right side.

Shortly after the stroke, she was diagnosed with aphasia, a

language disorder that often occurs from a stroke or brain injury. It
impairs the expression and understanding of spoken language,
reading and writing.
Aphasia can strike people of all ages. It affects almost two million
people in the United States. Some people may be left with only a
couple words; others, like Eunice, get back much of their
communication skills.

Eunice said that she used to be so embarrassed by her aphasia - she

would not take her young son to Veteran's Memorial Park. She
worried that she wouldn't be able to communicate with other
parents and children.
With the help of the Adler Aphasia Center, the largest center for
aphasia in North America, she has regained much of her
communication skills.
Before the stroke, Eunice worked in public relations as a supervisor
Then in 2002, she started her own consulting company.
She still must think very hard before she speaks; this is a draining
process that leaves her mentally exhausted by the end of the day.
She can now read, write and speak. She credits her progress to the
center, which she called a "godsend."
"I was embarrassed. I was almost non-verbal at the beginning, with
very limited speech. Luckily I was able to get over my
embarrassment. Without the center, I don't know what kind of life I
could have given him," she said of her son, now 12. He sometimes
volunteers at the center.
Several years ago she even visited his school class, speaking to the
other children about aphasia.
"It's important for him to see that there are other people going
through the same thing and that it is OK. It is not a disease," She
said.

She relearned to read and write alongside her son. He was learning
the same skills in school. They both began with Dr. Seuss books
before moving on to more difficult material. It took her about three
years to fully regain her literacy.
Living with aphasia can be frustrating, Eunice said. She described
the experience of trying to speak as similar to typing on a computer.
You know the letter you want to use is there, but it is stuck.
"It's there, but it's stuck. It's not coming out,"
she said. "Some people think if you're aphasic you aren't intelligent
- that's a misconception. It's very frustrating."
The Adler Center emphasizes communication, through lessons with
staff and, most importantly, interaction with other members.
The center offers a number of programs; book clubs that foster
discussion and art classes. There is also a weekly event called
"Adler's Court" - members choose a court case, a judge, jury,
prosecutor and defence attorney. They argue the facts and make a
decision.
Every August, members perform a musical. Although many at the
center have trouble speaking, their ability to sing has been
unaffected by their injuries.
At one point, Eunice said she had to take a break from the center for
several months. She noticed how much worse her speech got in
that time.

"With aphasia, you have to talk. If you don't use it you lose it," she
said. "When you're at home with your kid or your husband, you're
not having those long conversations. Being here, with other people,
I feel like I'm not alone. It's OK to mess up. We can joke about it
here, and we see each other as family."
After taking art classes at the center, Eunice began learning how to
make jewellery at a local art store. She now teaches several
jewellery classes a week.
The jewellery is sold online and at the center's shop. It has raised
more than $90,000. This money has been used to keep members
attending.
Many of the members who make the jewellery have lost the use of
one arm. They use felt to help them string the beads. As they grow
more skillful, the jewellery they make becomes more and more
elaborate.
"It's not meant to be occupational therapy, but stringing beads and
making patterns can really help," Eunice said. "I can see from one
year to the next how much stronger they get - and the elaborate
pieces they make. It makes me proud and they feel a sense of
accomplishment."
Every piece of jewellery sold has a card. This card has a picture and
biography of the person who made it there is information about
aphasia on the reverse side.

"It is about advocacy," said Eunice. "Because of the jewellery,

people can see the things we make customers can see the pride
and love that goes into the pieces, and learn more about aphasia."
Jewellery made by center members was displayed at the River Edge
Library in June, which is Aphasia Awareness Month. Eunice said that
she hopes to organize a similar display next year.
"Sometimes good things happen out of bad situations," Eunice said.
"I know that if it wasn't for the center I wouldn't be doing as well.
I'm so blessed. Now with the jewellery, I can give back, after so
much has been given to me. I feel like I've been given a second
chance at life."