Single mom's battle for vision offers an inspiring sight

The vision is crystal clear for Greenbrook's Rachel Weeks.

She is lying in a Montana pasture, the night sky so incredibly dark the brightness of the stars could penetrate any barrier.

Or any disability.

Weeks, a 33-year-old, single mother of two daughters, has thought about the trips she would take as her vision rapidly declines due to her battle against Usher syndrome. The inherited condition long ago robbed her of most of her hearing and now is doing the same with her vision.

Her list of trips is not a "bucket list," mind you, because Weeks is full of life. Anyone who doubts it should attend "Run The River," the Bradenton area half marathon being held Oct. 15 with a starting point in front of City Hall.

Since adopting a running lifestyle in 2011, as depression attempted to tighten its grip, she has run four marathons — including the Boston Marathon twice — and two full Ironman triathlons among the many races in which she has participated.

She says, at least in some ways, running saved her life, or at least the life she has come to enjoy.

During her preparation one evening for "Run The River," Weeks agreed to relate her story as a way to inspire other people who can't seem to find the motivation to begin a more healthy lifestyle.

"I have a platform to speak to other people," she said. "If they think, 'You inspire me,' OK, I can do that. If it lights someone else's candle. I want to do that."

Before a workout at Greenbrook Park, she discussed topics such as places she would like to visit before her small window of vision closes,

Montana stands at the top of the list because Weeks believes being far away from any city or source of light might allow her to enjoy a starry night for the very first time.

"I've never been able to see the stars," said Weeks, whose daughters, 8-year-old Hailey, and 9-year-old Audrey, played around her as she spoke. "It's the way light filters through the retina. For me, it won't penetrate through the dark.

"If I got to a mountainous area, with wide open spaces, maybe the stars will be bright enough I can lay down, and I might be able to pick them out."

Hailey, still a bit young to comprehend the complexity of her mother's condition, stopped what she was doing and looked up at her mom.

"You've never seen a star mommy?"

Rachel looked back at her daughter. "No, I haven't."

"Can't you see the sun?"

"Well, yes."

"Isn't that a star?"

Rachel broke into laughter. She has raised a couple of very smart girls.

Her daughters seldom notice she wakes up every day to a battle. The hearing aids she has worn since she was 3, continue to do their job. She has about 5% of what most people would consider normal peripheral vision. It leaves her gazing straight ahead through a tunnel.

"At the end stage of retinitis pigmentosa (caused by Usher's syndrome), you get cataracts," she said. "It's like a film over the retina. I'm not getting the best reception."

She is thankful for the contact lenses that allow her to function for the time being.

Twenty-two months older than her sister, Audrey comprehends more about her mom's condition. She loves when her mom goes to work as a senior rehabilitation specialist for the Florida Division of Blind Services because it means life is, well, normal.

"Having disabilities, I think, gives me an edge," Weeks said. "I know it sucks what is going on."

It doesn't mean she will allow her clients to be consumed with self pity. "I'm emphatic and I listen to a degree, but another part of me wants to kick their butt. I listened to a blind guy in his 20s the other day tell me he couldn't go bowling. Please tell me why not?"

Her work does give her hope for her own future. "Hanging out with fully blind people helps me to think I can do this," she said.

Although Weeks has an intense desire to be self-sufficient, she understands that isn't possible at times. When she first started running, she leaned on her sister, East County's Rebecca Nickens, for help.

They ran their first 5K together in December of 2011.

The event lit a fire in Weeks and she wanted more. "One night I loaded my sister up on wine," Weeks said. "Then I said, how about we run a half marathon? We could use a waist tether. She said 'Yeah.' She didn't know what she was getting into."

By March of 2012, they ran their first half marathon as a team, and by June, 2012, they had run a sprint triathlon.

"Running has made her feel part of a community," said Nickens, who is three years younger than her sister and who has no hearing or sight problems. "It is social for her."

Nickens uses mostly verbal commands during a running race or during the running portion of a triathlon. The tether, or elastic strap, is seldom utilized but remains in place for safety. In the water, more tugging is done on the strap to help Weeks with direction. In the triathlon, Weeks and her partner ride a tandem bicycle.

It is sometimes tougher for Weeks' partner. "I had a race where I pulled a muscle," Nickens said. "I had a hard time keeping up with her. I felt terrible because I was supposed to be her eyes."

Eventually, Nickens didn't want to match her sister's commitment to running, so Weeks found other race partners and coaches. She currently works with coach and trainer Tom Egan, who owns "All Out Endurance" of Lakewood Ranch. 

They met at their church, Harvest United Methodist in Lakewood Ranch, about a year ago.

"She wanted to focus on nutrition and her running form," Egan said. "She is more a student of running now. Before, she would just slog a bunch of miles."

It is now the coach who has been inspired. "When I am having a tough day, I think about Rachel," Egan said. "Here is a woman not complaining. I say to myself, 'Suck it up, Buttercup.'"

Weeks has sucked it up since her hearing difficulties were diagnosed when she was 2 while living in Nashville, Tenn. Her parents, Tracey and Don Nickens, had to find a way to raise $4,400. It took a while, but by the time she was 3, she had hearing aids.

Despite hearing and speech difficulties, Weeks had a mainstream education with private speech classes on the side. "I did a pretty good job filling in the gaps," she said.

She experienced some bullying through her middle school years, but she treasured her time at Lakewood Ranch High School, where she was part of the first class to graduate in 2001. "I had some of the best friends you could want," she said. "I remember my senior year when a boy in my class was looking at me. 'You have hearing aids?' he said. I asked him where he had been."

Then came 2002, her sophomore year at the University of South Florida, when a routine eye appointment turned heartbreaking.

After struggling with a vision test, Rachel was sent to a specialist. "I was doing a field of vision test where when you see these flashes of light, and you have this clicker to push. Only I wasn't clicking anything. Clearly something was going on."

She was diagnosed with Usher's syndrome, which leads to blindness. There is no cure.

"I didn't know what I was walking into," she said. "I had been in the disability world, and I never had talked to anyone who was blind. All of a sudden I wasn't able to drive. I was flat-out scared. I was told my eyes had an aggressive form and that meant I would lose my vision fast."

Her vision deteriorated and in 2011, she spent 10 straight days without leaving her house, not able to free her mind from bad thoughts about the future. She finally realized it was time to make her future better. She began to run.

Along with learning Braille and signing up for a guide dog, running has helped her prepare for an uncertain future.

It might seem unfair to most, but Weeks has her own take on things being fair.

As the sun started to set at Greenbrook Park, she reminded her daughters it almost was bedtime. Audrey pleaded with her mom to allow her to stay awake a little longer since she is so much older than her sister.

"It's not fair," Audrey said to her mom.

Her mom gave her a stern look, and then smiled. "What is it we say?"

Audrey took the cue, gave an affirmative nod and then recited what has become a mantra for the Weeks family,

"Fair is where you take the pig to get a blue ribbon."

Usher syndrome is the rare blue ribbon no one wants. No other members of Weeks' family have the condition, but both her parents were unknown carriers. Even with two parents being carriers, only a one-in-four chance exists the parents will have a child with Usher syndrome with each birth. According to the National Institute on Deafness and other Communication Disorders, about one baby in every 25,000 births in the United States have some form of Usher syndrome.

"I'm the lucky one," Weeks said.

That being the case, she makes the most of whatever time she has left to enjoy her vision. In 2014, she taught piano during a two-week mission trip to Angola with Harvest United. Toward the end of the trip, the missionaries were treated to a trip to Kalandula Falls, one of the highest volume water falls in Africa.

"It is very cut off from the rest of the world," she said. "And it's still natural and so huge. You see all these rocks and pishhhhhh, it falls off."

She would like to see more of those kind of sights.

"I do want to see the Grand Canyon," she said. "I know that is so cliché. I want to go to Ireland and I would like to hike the Appalachians. I love nature. I guess you get that."

Nature at the moment meant the sun had set at Greenbrook Park and the radiant colors of the sky were giving way to darkness.

Another day had passed, but there was more training to do tomorrow, and in the days following, whether or not her sight comes along for the run.

"I constantly remind myself I can move on my own feet," she said. "No matter what happens."

She headed off toward her home, which is a few blocks from the park. She turned and looked back at the wonder of her children racing to catch her. It must seem to them that their mom is in a hurry.

Of course, she is. It's time to chase the stars.