Living With Macular Degeneration: Changing Her Focus to Find Joy
Key takeaways:
Jill DuBois learned she had macular degeneration 16 years ago.
As a teacher and children’s book author, she was scared to face losing her vision.
She tried a relatively new medicine that works by injecting it into her eye. It has improved her vision and given her hope.
Jill DuBois of Clearwater, Florida, found out in 2006 that fluid and scarring from macular degeneration was building up in the back of her eye. The news hit hard.
So much of her life depended on sharp vision. She was a grade school teacher and an avid reader. Also, her son was struggling with his studies and needed her help.
Jill, now 55, learned she had the beginnings of macular degeneration, which damages part of the retina and affects central vision.
Her vision had worsened to 20/100 — legally blind — in her right eye with her glasses on instead of her previous 20/20 vision. Her left eye had learned to compensate and was in the normal range.
She saw a retina specialist who explained that scar tissue has started to surround the macula in her right eye. The macula is the central part of the retina which forms the back layer of the eye.
He said the fluid would ebb and flow like a tide, but the scar tissue would remain. There were few options, he said, other than taking eye vitamins and monitoring vision changes.
“So I just lived with it,” Jill says. She followed up yearly with an optometrist.
Her father also had macular degeneration
The news had come months after her father died from colon cancer at age 65. Jill says her doctors told her the stress from his death may well be linked to her worsening vision.
However, when Jill’s family looked through her father’s health records, they found out that he also had macular degeneration. She better understood her genetic risk now.
The full name of the disease is age-related macular degeneration (AMD), and it is more often seen in older people. Jill has the dry form of AMD.
“It was like a foggy film over everything,” she says.
With the more severe wet AMD, abnormal blood vessels grow into the macula and leak blood or fluid which can lead to rapid vision loss. AMD is aleading cause of vision loss for older adults.
Specialist suggests eye injections
In the last year, Jill’s optometrist recommended she try injections for AMD, a long-proven treatment. He asked her to see a retina specialist he knew who was skilled in the procedure.
She agreed, and the specialist explained the treatment involved injecting her eyes with bevacizumab (Avastin), a medication approved for treating some cancers.
“I’m typically a jumper, but these are my eyes — the only eyes I have,” Jill says.
The idea of a needle in her eye was intimidating. But she told herself, “You know, I've been through more than that: IVF (in vitro fertilization) and infertility treatments and a hysterectomy. I think I can probably do a couple of needles in the eye.”
She researched the potential benefits and side effects. She also consulted her mother, a nurse practitioner, who agreed that the research was promising and encouraged Jill to try it.
Early this year, Jill got the first injection in her right eye, which then had about 20/50 vision with glasses on. Her doctor numbed the eye with topical drops and blocked the adjoining nerve. She didn’t feel a thing — though she was fully awake, and her eyes were open during the procedure.
After the numbing drops wore off, she was sore. It felt like someone had thrown a handful of sand in her eye, she says. But she was fine the next morning.
The specialist started injecting both eyes once every 4 weeks. He saw a considerable drop in the fluid at the back of her eye and less tissue swelling.
Now, vision in her right eye has improved to 20/30, and her left eye remains at 20/20.
Jill has noticed her central vision is less blurry, and she now has to get a new prescription for lenses to work with her improved vision.
“I’m feeling better about myself and more confident that there is treatment available,” she says.
Changing her focus and enjoying equine therapy
Now, she’s changing her life focus.
After 21 years of teaching in a grade school classroom, Jill is doing something new. She is developing content for teachers who want to become better teachers.
She and husband of 33 years, Tim, live with their 24-year-old son, Austin, who is on the autism spectrum. The family particularly enjoys riding horses together. Austin developed a special connection to them, she says, learning about their anatomy, grooming, and riding them.
“Horses became our therapy,” she says.
Finding inspiration in her family’s health struggles
Today, Jill pursues her passion of writing and illustrating children’s books. She also helps others write their stories or publish books through the company she founded, Imparted Joy.
Her original inspiration came from her sister, Lisa, her only blood sibling. Lisa died in 2012 at age 40 of the same cancer their dad died from — colon cancer.
When the pandemic hit, Jill had time at home to write and illustrate a children’s book based on her sister’s life lessons. Jill did it as a way to help the young daughter and son Lisa left behind know more about their mother.
She changed the name of the book’s lead character to Liv to avoid a tongue twister and titled the book “Liv’s Seashells.” Now, she’s finishing the sequel, “Liv’s Lessons.”
Still, she knows AMD is unpredictable and can worsen with age. The fluid continues to ebb and flow in her eye. She could be prone to more scar tissue development in her maculas.
“Who knows?” she says. “But right now, I'm just glad that there is something I can do besides take eye vitamins.”
Her outlook on life is driven by three words, Jill says: “Be the joy.”
“I’ve always tried to focus on optimistically finding joy,” she says. “I try to find that there is something good in anything that happens to me.”
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