Perseverance ‘a habit’ for Ali Steenis

Freshman Ali Steenis has persevered through school with a rare retinal degenerative disease.

Freshman Ali Steenis has persevered through school with a rare retinal degenerative disease.

Freshman Ali Steenis has jumped out of an airplane, tamed a wild mustang and vaulted a horse. She also has little to no vision.

Steenis has Lebers Congenital Amaurosis — a rare retinal degenerative disease in which sub-normal rods and cones in the eyes cause limited vision. And now Steenis is an intended business administration major at Seattle Pacific, with the help of a guide dog, Retha, who accompanies her wherever she goes on campus.

A photographer at a Sears department store first noticed Steenis had trouble seeing when she was 5 months old and couldn’t follow the camera. Steenis’ parents, Ken and Cyndie Steenis, set up doctors’ appointments and Ali underwent extensive testing. Doctors determined she was legally blind, with the ability to see only one to two feet in front of her.

“I had light sensitivity, and really, I just couldn’t see without straining,” Ali said. “Because I’ve never had full sight, it’s so

hard to find a way to answer people when they ask me what it is that I see.”

Ali remembers years of sitting in the front row of the classroom so she wouldn’t have to strain her eyes. When Ali’s vision was at its best, life and school were managed with large print or audio books and sunglasses to help with her sensitivity to light.

By junior high, school got harder as Ali experienced gradual vision loss, attributed to eye fatigue at the time.  When Ali was in high school, she realized what little vision she had was disappearing.

“I got into my junior year and really, really struggled,” Ali said. “I was barely in school that year just because the realizations were so drastic that this was not working. I didn’t know how I was going to do my homework, and I couldn’t just drop out.”

Ali said creativity was key as she came to terms with losing her vision completely. She learned Braille as quickly as possible, took tests with someone reading the questions and transcribing her answers, and invented ways to complete homework she could no longer see.

“We got extremely creative when I was in pre-calculus,” Ali said. “I would use black paper and a white expo marker because the contrast was just enough that I could make out what was on the paper.”

Ali said life slowed down as her vision decreased, and she needed more time to process how to get through her day, emotionally and physically.  She made progress using a cane, but setbacks were just as frequent in other areas.

Ali remembers feelings of guilt and exhaustion from missing class and homework. One Friday morning in December of 2011, Ali said the strength that had kept her going finally failed.

“I just remember getting up that morning and crying and crying and crying because I just had nothing left to give,” Ali said. “I had hit my low point; I had hit the point where I could not bounce back up again.”

Ali said that was her rock-bottom moment when she questioned how she would continue on with her disability.

“Would I let this loss of vision, this darkness, keep me down, or would I get up and conquer it?” Ali said.

Ali said she decided at this point to get a guide dog.

“You have to be tremendously advanced in using a cane before they approve you for a guide dog,” Ali said. “The regional advisers evaluating you want to know that you can travel independently without the help of a dog.”

After working harder at walking with a cane, Ali was approved for a guide dog. In July 2012, Ali met Retha, a labrador retriever, at Guide Dogs for the Blind in Boring, Ore.

“Ali trusts Retha, and Retha trusts Ali,” Ken said. “Watching them work still brings me to my knees.”

On campus, Retha helps Ali stop at curbs and pull over to the side when someone comes running the other way. But knowing how to get from Emerson Hall to Gwinn Commons is up to Ali.

“It’s my responsibility to know the routes, to know when we turn and how many streets we need to cross,” Ali said. “It’s her job to keep me safe.”

It’s Ali’s responsibility to take care of Retha. They both live on Second East in Emerson.

“When [Retha] can’t go with me somewhere, I have to make sure there are arrangements for her to be taken care of,” Ali said.

Ali plans to graduate from SPU and spend two years at a massage school. After that, she wants to open a massage practice for people and animals. Ali said massage therapy has helped her deal with the daily strain of dealing with her disability.

“Living with being blind has been really exhausting at times, and I’ve seen how massages have provided so much relief from the strain of work that comes with it,” Ali said.

Ali said her blindness has not prevented her from living her life. Rather, it forces her to approach mundane activities from a different perspective.

Ali started riding horses when she was 5 years old at Little Bit Therapeutic Riding Center in Woodinville. By age 13, Ali was competing in horse shows and active in 4-H. She competes in barrel racing and dressage, where the rider is judged on how they perform a set pattern of steps.

“Dressage is basically ballet on horseback,” Ali said. “It’s something I can perform and knowingly do well without being held back like I have in other areas.”

One of Ali’s longtime friends, Sarah Squires, has spent the last five years helping her in the horse arena. Ali wears headphones while she rides, and Squires, also a freshman at SPU, talks her through the routine from a cellphone.

“It usually works, though one time I misdirected her and she ran down one of the judges,” Squires said. “Thankfully, the judge thought it was funnier than I did.”

In 2012, Ali placed third in the dressage competition at the Washington State Fair in Puyallup.

“Growing up [Ali] was wild and adventurous, always taking risks,” Squires said. “Me being the worrywart in the relationship, she was always giving me heart attacks with her crazy plans.”

Ali’s parents said they were sad to see her leave home and go to college. Ken said he knows Ali’s college education is part of her journey in overcoming her disability.

“About three years ago, Ali came up with the phrase ‘perseverance is a habit,’ which captures what life is like for her, and it seems to be true time and time again,” Ken said. “For Ali, perseverance is really a habit.”

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