The Brevard Association for the Advancement of the Blind has been helping low- or no-vision people live independently since 1966.Melbourne Beach woman is passionate about helping others with vision loss.
If there’s one thing Lea Gaffen wants, it’s a little more compassion.
The 49-year-old Melbourne Beach woman, who is legally blind, recalls walking into a candy store in Virginia Beach a few years back.
“I was looking around, and I don’t think I had my cane out,” Gaffen said. “This woman started yelling at me. Apparently, she was trying to take a picture of her kid, and I happened to be walking in front of where she was taking the picture. I didn’t realize it because I didn’t see, and she just kept yelling at me.”
After informing the woman she was legally blind, the woman continued to scold her.
“I went back to the hotel room, and I just started crying,” Gaffen said. “That’s not my fault, but little simple things that should be simple are not simple.”
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But that’s the reality for people with vision loss. Everyday tasks take on a whole new meaning – and stress – for those who are legally blind. An estimated 8,200 Brevard residents are diagnosed with some type of vision loss each year, according to figures provided by the Brevard Association for the Advancement of the Blind (BAAB). October is World Blindness Awareness Month.
Getting such a diagnosis can be understandingly devastating and impacts a person’s mental health.
“Everybody experiences a lot of distress in their life,” Gaffen said, who is slowly losing her vision to retinitis pigmentosa (RP). It’s genetic – her mom had it, too, but it was dismissed as “night blindness.” “But when you’re blind, it’s a different level.”
Learning how to live with vision loss
Dr. Mike Ronsisvalle, Psy.D., the CEO and owner of LiveWell Behavioral Health, said it’s crucial for those with vision loss to process their emotions. The goal? Peace. And a happy life.
“Although it’s unrealistic to expect someone to ever feel excited about losing their sight, I have seen many individuals in this situation who find peace, acceptance and a renewed sense of purpose,” Ronsisvalle said.
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There are local resources to assist, helping people learn to live successfully and happily without sight.
Kara Davis, BAAB’s operations manager, said the nonprofit guides recently diagnosed individuals through every aspect of a visually impaired life.
Davis provided estimates of vision loss in Brevard – the overall number of new vision loss cases hovers around 8,267 per year. This is based on national data and Brevard’s local population. There are a variety of reasons for sight loss – from genetics to an accident to a pre-existing health condition like diabetes.
“Put yourself in someone’s shoes,” Davis said. “Let’s say you go to the eye doctor for your regular visit, and you just got a diagnosis that you’re going to lose your vision. But there’s no next steps.”
That’s where BAAB fills the gap.
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“We have started to really get connections with the eye doctors and let them understand that once you have someone that has received that diagnosis, they need a next step,” Davis said. “Don’t let them leave your office without knowing about us.”
BAAB, based in Satellite Beach, has been teaching independent living skills since 1966. BAAB offers free eight-week courses on how to navigate life without sight. There, others with vision loss will learn how to adapt, with classes taught by people with visual impairments. So they get it – and offer hope.
It also provides free equipment for the visually impaired – that’s big, given the price tag of the items. CCTVs, for example, run between $1,800 to $4,000, according to the American Foundation for the Blind (AFB). Magnifiers that plug into a TV can range from $400 to $1,000, the AFB said.
“A lot of people can’t afford it,” Davis said. “We do get the donations, we make sure that it’s operational, and we get that right back out into the hands of people that really need that equipment.”
Dealing with a shocking diagnosis
When someone is first diagnosed with a visual impairment, they’re awash with a flood of emotions – sadness, anger and, sometimes, PTSD, if a sudden incident caused the vision loss. Plus, many people fear they’ll be a burden to their loved ones when asking for help with simple tasks, even heading to the restroom.
“There’s a lot of isolation for people,” Gaffen said. “People are very reticent to ask for help.”
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But Gaffen said the blind must advocate for themselves.
“You have to be strong enough and confident enough to say, ‘This is what I need,’ and not worry that you’re being a pain,” Gaffen said. “And for some people, I think that’s a bigger challenge than it is for others.”
After getting connected with the Orlando chapter of the Foundation for Fighting Blindness, Gaffen launched a virtual support group for the visually impaired, using her experience in social work to help others like her. It’s a safe place for people to share their frustrations and joys every few weeks.
“That’s my passion,” Gaffen said. “Now I work with organizations to help address the mental health gap for people with low vision or vision loss.”
Sometimes, she said, people are their own worst enemy. They blame themselves for challenges or barriers.
“That’s not helpful,” Gaffen said. “Recognizing cognitive distortion, such as the all-or-nothing thinking the self-judgments, being aware of when you’re putting yourself down.”
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Gaffen said she’s done a lot of work with mindfulness.
“It’s so interesting how we do this to ourselves,” Gaffen said. “Because, for example, if you lost a leg, that’s like external – people can see that you wouldn’t be hiding in your house, afraid to tell people you lost a leg. For the most part, I don’t think, but I think because blind and low vision, people are able to fake it for a period of time, it exacerbates our anxiety when we can’t fake it anymore, and so we’re so afraid to almost expose ourselves.”
How loved ones can help
The best thing someone can do for a loved one with a visual impairment? Respect to their needs and wants, Gaffen said.
Don’t assume they’re not capable of daily living. With adaptive tools and technologies,, the visually impaired have resources to make navigating the world a little better.
Being able to perform daily chores like cooking is something the visually impaired can handle – and often want to, Gaffen said.
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The visually impaired person should assert that cooking, for example, is something they like to do. And with interactive tools to assist them, from apps to accessories to assist them in daily living.
Ronsisvalle has worked with clients who have lost their vision. As with any grieving process, someone smacked with such a diagnosis will go through some immediate reactions.
“While it’s easy to think of grief as a set of discrete stages, we now understand that people often move between these stages, sometimes rapidly,” Ronsisvalle said. “Accordingly, those who have lost their sight may move back and forth between denial, depression and anger. The goal of any grieving process is to arrive at peace.”
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Clients often show symptoms of depression, anxiety and anger, given the vulnerability of being unable to see, Ronsisvalle said.
“Grief can become complicated and start to feel a lot like a major depressive episode,” Ronsisvalle said. “If someone who has experienced vision loss feels that the intensity and duration of their negative emotions don’t improve over time, it’s crucial to seek professional help. A psychologist who specializes in grief counseling can help individuals move through the stages of grief and ultimately reach a place of acceptance.”
BAAB’s eight-week course focuses on daily living – things most people don’t think about.
Helpful tips are taught in class, as the simplest things can suddenly seem insurmountable – like using clothespins to keep shoes matched, putting toothpaste directly in the mouth instead of trying to get it on a toothbrush and so on. More than half of the instructors in the courses are also visually impaired.
Davis said she can see the difference in clients’ emotional well-being as they continue and complete the course.
“The mental health I can see from day one to day eight is so drastically different,” Davis noted.
How the community can help
When Gaffen moved to Brevard, she felt like she had a chance to start fresh.
“I did start using my white cane more consistently, and now I have my seeing eye dog,” Gaffen said of Marston, her black lab. “Much to my surprise, once I use the white cane, people seem to be much more compassionate. I think it, it’s really using it really made me feel better about using it, if that makes sense. People will open a door for me, whereas if I don’t use it, they probably just think there’s something wrong with me.”
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The flip side? Seeing eye dogs and trying to get a ride-sharing service.
“If you have a service dog, it’s always a crapshoot as to whether they’ll take you in their car. That’s a problem,” Gaffen said. “I think those ride-share companies need to educate their drivers more about that.”
Despite the American with Disabilities Act (ADA), Gaffen said some drivers show up, see Marston and leave.
“That’s rough,” Gaffen said.
But Gaffen won’t be sidelined. She found that connecting with other visually impaired people helps – both virtual and in-person.
“There’s something so empowering about going to a conference where you’re not the only one who’s struggling to navigate,” Gaffen said. “It makes you feel normal again when people, everybody, has their white canes, or they’re holding the arm of their spouse, who’s guiding them to a table…it’s almost like a level playing field, and that makes such a difference.”
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Her advice to others with vision loss?
“It sounds really elementary, but finding something that brings them joy, I think that’s so important,” Gaffen said of living a happy life.
One of Gaffen’s joys is traveling. In May, she’s going on an African safari with other visually impaired travelers, each with their own sighted guides who share what they’re seeing.
It is, after all, to celebrate her 50th birthday.
“We all think it is catastrophic, the end of the world,” Gaffen said of her eye disease. “It’s not the end of the world. If you want to do things, you can. It (just) might be harder.”
This reporting is supported by a Journalism Funding Partners grant. Mental Health Reporter Sara Paulson can be reached at spaulson@floridatoday.com.