Trust the Journey

Michaela Smith raced ahead, with nothing between the net and her soccer ball but open field. She picked up her pace, energized by the certain goal. Adjusting her angle, she turned slightly to the side and ran full speed into the referee, flattening them both. Though he had been right beside her all along, Smith had no idea he was there; she had never seen him. That’s when she realized something was very wrong.

Of course, there had been clues: a black eye from running into the stairs, a minor vehicle accident. This time, however, Smith couldn’t attribute the misstep to sheer clumsiness. She had literally not seen anything before the collision. It took a string of doctors and a seemingly endless battery of tests to confirm what Smith already suspected: her vision was closing in from the outside. 

When she finally received a diagnosis, Smith learned she had Usher syndrome type II (USH2), a rare genetic condition characterized by vision and hearing loss. There is no cure and no proven treatment to slow its progression. Over time, Smith’s vision will become increasingly worse as she loses her sight from the outside in.

Nonetheless, Smith refuses to surrender to the illness. Instead, she adapts.

“I’m not letting it take a piece of me,” insists Smith. “To me, that’s giving in to the disease, and that’s a slippery slope.”

As a hairstylist, Smith’s professional success has always been closely tied to her vision. Not only is her work product — her client’s hair — judged by its appearance, but on a more basic level, Smith also needs the ability to get to work. Five years ago, she lost the ability to drive. 

Thankfully, Smith finds herself surrounded by a cadre of people willing to help. Her husband, parents, husband’s parents, friends, former co-workers and even clients have all offered a hand in times of need. 

“I can’t imagine going through something like this without the support system I have,” she says. 

From daily rides to and from work to ordinary errands and babysitting, Smith has always found someone ready to lend a hand. That allowed her to continue working at a salon long after she had to stop driving herself. To make it easier for her parents and in-laws who handled most of her transportation needs, Smith and her husband found a house closer to them and the salon. 

Still, Smith missed the autonomy of doing things for herself. Just as important to her, she didn’t want to become a burden. Quitting the job she loved to stay home would mean giving in to the disease, so once again she found a way to adapt. In 2020, Smith opened Michaela Vi Hair Studio in a space easily accessible from her home. 

“I’ve always wanted to own my own hair studio,” says Smith, “but I had to do this for my family as much as myself.”

Smith designed the space specifically to fit her needs; every component of the combination salon and boutique has been placed with intention, from the washing station to the hand-selected merchandise. The hair studio feels cozy and personal, but more importantly it allows Smith to regain much of her lost autonomy.

“Every inch had to be perfectly mapped out,” says Smith. “It’s intimate and personal, and it’s me.”

In the years since her diagnosis, Smith has weathered a number of ups and downs. While a cyst on her right eye disappeared during her first pregnancy, it returned and then grew with her second. She’s had surgery for cataracts, receives periodic shots in her eye and spent years on experimental drugs. Sometimes the disease progresses slowly, and other times it accelerates. It follows no specific timeline.

As of today, Smith’s peripheral vision is limited to 15 degrees (anything under 20 degrees makes a person legally blind), while her straight-ahead vision remains perfect. She plans to keep styling hair and running her business as long as she can find ways to adapt. After that, she’ll tackle something else.

In the meantime, Smith actively participates in the search for a cure. She and her family have taken part in Fort Wayne’s VisionWalk sponsored by Foundation Fighting Blindness, and cumulatively they have raised and donated more than $20,000.

“It is so important to be active in raising money, as it is a crucial part in finding a cure for blindness,” says Smith.

In some ways, Smith considers her disease a blessing.

“When there’s nothing you can do, you have to let go,” she says. “Overall, that’s made me a happier person.”

Smith hopes her story will inspire others to overcome challenges, even when they seem huge. 

“There’s more than one route to get where you want to go,” says Smith. “You have to trust your journey.” 

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