January 2020

Seeing Life Without Vision

Author: Becca Edwards | Photographer: M.Kat Photography

Archer Crose’s two young daughters, Lawton and Patchin, are playing hide-and-seek in the backyard with my two youngest daughters as he and I are seated outside on his patio. Even though Crose has not totally lost his vision due to macular dystrophy, he will tell you point-blank that his vision impairment affects his life—and it will continue to be a challenge, especially because the end is not in sight and so much of his condition is a waiting game.

Macular dystrophy is a rare condition in which the patient experiences deterioration in the macula, therefore blurring all frontal vision, but not peripheral vision. To simulate macular dystrophy (or macular degeneration) in its advanced stage (which is not Crose at this point but could be in time), align and cup both your hands so that your pinkie fingers touch and there is no space between all 10 fingers. Place your hands in front of your eyes, blocking your vision. Someone with advanced macular damage will only see peripherally, or the crescent space on either side of their eyes but not what is directly in front of them.

As you can imagine, seeing life this way and without total vision is daunting. But do not feel sorry for Crose or perhaps anyone else who may be losing their vision. That is not what this story is about.

Thankfully, we have multiple senses. And, what is happening around Crose, myself and our children engages all of our senses—from hearing the children’s laughter, to feeling them give us gentle check-in touches as they run past us, to the smell of just being outside on a mild Lowcountry day. Because of these sensorial gifts, even without the use of full sight, Crose full-heartedly knows his children are happy.

Crose takes this as a win. In fact, despite the lessening of his eyesight, he takes every day as a win—as well as with a little bit of levity. “The key to going blind is to never lose your sense of humor. You can quote me on that,” Crose joked.

Crose then explains his diagnosis. “I was first diagnosed 10 years ago,” he said. “I was complaining I could not see the sports scores on the television to my wife Lindsey, and she recommended I go see an optometrist. I had never had my eyes checked. I went to the optometrist at Walmart, and he said, ‘Archer, I see some damage. You need to go to a specialist.’”

Crose immediately called his middle brother, Dr. Hunter Crose, who once practiced family medicine here on Hilton Head Island and now practices in Anaconda, Montana. Dr. Crose connected Archer with the Storm Eye Center in Charleston, South Carolina, which led Archer to Dr. Eric Jablon and Dr. Steven Tsang.

“There are over 300 types of macular dystrophy,” Crose said. “I got my condition from my dad. I also learned from my dad there are some things you can control and some things you cannot control. I didn’t cause my condition. They cannot cure it. And therefore, I am not going to lose sleep over it. It is simply out of my hands.”
What Crose can control is lifestyle choices like setting his own career path, enjoying his family and adjusting to life as he continues to “see” it.

“I used to work in mortgages and insurance but decided it was important to be my own boss and work for myself,” Crose said. “I expanded my wife’s business, Sandy Feet Cleaning and Home Management, and now focus on commercial and construction clean-up projects.”

Crose also dedicates himself to never missing one of his girls’ athletic games. “My dad was one of those dads who took us to every practice and coached,” he said. “I can’t do that now. I mean, in terms of practice, I can throw a ball with my kid, but I cannot see a kid across the field to coach them. So instead, I am there for my girls when they are playing. They see me on the sidelines. They know I’m there, and that’s what matters.”

Like Crose, my father is going blind. However, my father’s blindness is due to macular degeneration, not macular dystrophy. Even still, and despite a significant age difference, the two have been in constant contact over the past several years, exchanging research articles, doctor recommendations and new-product information.

At times, the two also exchange hope. And this is where seeing life without vision gets a clearer picture from a personal account. “Each of my girls has a 50-50 chance of getting this,” Crose began, emotional but pragmatic. He paused for a moment, thinking about his situation and how it might impact his daughters. “But I have this feeling that when or if they get it, it will be better.”

Crose then talked about the research and advances in products for people suffering from vision loss, first discussing smartphones. Joking once again, he said, “I cannot write a secretive text because the font setting on my phone is so large people across the room can read it, but I do think technology really does play a big part.”

On his smartphone, Crose can use dictation mode to send messages and connect with apps like Uber.
Crose then brought up the use of autonomous, self-driving cars. “I think in years to come, we are going to see more advanced technology.”

I recently discovered a newly launched product called OrCam, which claims to be, “the world’s most advanced wearable assistive device that instantly reads text, recognizes faces, identifies products and much more.” Of course, the jury is still out about the efficacy of OrCam, but the point is that engineers, programmers and other professionals are putting their energy into making conditions such as Crose’s more manageable.

“Really the most important thing is having a place for everything. But thanks to my wife, who, like all wives, likes to organize, I’m constantly looking for things,” Crose joked.

“Actually, the most important thing is knowing this is part of your life but does not rule your life,” he continued. Not a moment later, both sets of our children came to us. His girls know it’s time to get ready for their soccer game. Crose knows it’s time to watch them play it. 

Becca Edwards is a wellness professional, freelance writer, and co-owner of Female IQ Podcast (femaleIQpodcast.com).

  1. Becca, Thank you for this
    article and making people aware. Love, Sherry Easterlin


    — Sherry Easterlin    Dec 28, 08:58 pm   

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