Walking As A Team

Jamie and Michael Marks meet RP with grace and resilience. 

“She’s always so positive,” ‘She has a quiet professionalism,” ‘She has taught me a lot about how to be more social with others. “I’ve learned how to advocate for myself from her.” 

All these are descriptions of Jamie Marks, a vision rehabilitation specialist at Vision Rehabilitation Services in Smyrna, Ga. The words are from members of Jamie’s Job Readiness class, a class for men and women who are visually-impaired and looking to re-enter the workforce after vision loss. 

You don’t have to tell Jamie’s husband, Michael, how special she is. He fell in love with her 30 years ago, when they were college sophomores at Cortland NY State University of NY. They were neighbors; Jamie lived in an off-campus house with six girlfriends and Michael lived next door with a group of his buddies. The two got to know each other, a conversation here, a conversation there, a walk to class,  a movie night with the crowd. Soon they began to feel the early stages of love, and Michael asked Jamie out on an official date. 

Walking to that dinner date after dark, Jamie knew it was time to tell Michael a little bit about her eye condition. Jamie had lost some of her night vision due to retinitis pigmentosa, or RP, a rare hereditary eye condition which causes the breakdown and loss of retina cells, leading to poor night vision, a loss of peripheral vision, and sometimes blindness. 

“Her night vision was not great, and I remember on that date, we were walking through campus and there were some dark areas,” said Michael. “She told me a little about RP, and asked if she could steady herself with my arm as we walked through the darker areas of our path.” 

‘I certainly didn’t mind that a beautiful girl I liked was asking to take my arm and lean closer to my side,” he said, laughing. 

As time went on, the two grew closer. 

“I was just 19, and for the most part my vision was still good, except at night,” said Jamie. She was all too familiar with the disease because her mother had it. She was a little nervous that Michael could lose interest because of her eye condition. However, she knew that honesty about it was vital with anyone she wanted to date seriously.

“My mother’s eyesight began to worsen much earlier in her life than mine did,” said Jamie. “I had grown up watching her model how to handle obstacles. She modeled courage for me, and never let anything stop her because of her vision problems.” 

Jamie knew she would likely experience many of the symptoms her mother had, though the precise path and speed in which RP vision deteriorates is never predictable. 

Shortly after graduation, Jamie and Michael married and moved to Marietta, Ga. Jamie taught pre-school  and Michael worked in landscaping and irrigation. Both persued their masters degrees at Georgia State. Jamie completed a master’s degree in Special Education/multiple disabilities and Michael finished a masters in Instructional Technology and later, a second masters in Media Science.  For a time, life was just the normal life of a young couple.  Michael loved Jamie and she loved him. 

While Michael was dating Jamie, he had interacted with her family, and crossed paths with the impact of RP more frequently. He saw the challenges of Jamie’s mother, and met two of her aunts who also had the condition. He later walked with her through an intensive scientific study of her and her family’s genetic history, to help doctors identify the mutated gene that has caused her family’s RP. 

Before they married, Michael knew being with the woman he loved, the woman he knew as funny, giving, smart, and strong, would mean dealing with the future hardships of RP. However, he never thought of giving up Jamie because of those hardships. He loved Jamie and that was that. 

“I know that some people might wrestle with that kind of choice, but I wanted to be with Jamie. It wasn’t a hard decision,” said Michael. ‘Besides, the truth is that every couple has something to deal with in life. Life has its challenges for everyone.” 

The couple now have two children, who both have RP.  In the past 30 years,  Jamie’s eyesight has diminished in both acuity and field of vision. The couple and their two children, now in high school and college, have had to regroup and re-adapt over and over and over again as  RP has progressed in each of them.

Jamie’s accessibility needs have changed from needing that strong arm on their first date, walking through a dimly-lit campus, to needing a white cane to navigate walking and now needing her guide dog, Frenchie, to safely make her way through a sighted world.  Jamie has lost most of her peripheral vision and now has only 7 degrees of central vision. 

‘We have constantly had to adapt and change,” said Michael. ‘As Jamie’s eyesight deteriorated, I switched careers to ones which offered more flexible hours. For example, when the kids were younger, I needed flexible work so I could transport them where they needed to go since Jamie doesn’t drive. I do a little more around the house than I did originally.” 

Michael has worked in various fields, including retail, software development, technical writing, and even as a school librarian.  Jamie moved from teaching special education classes in public school, to teaching assistive technology and job readiness skills to people with visual impairments and blindness. While the road has not been easy and Jamie’s changes in vision have required constant adaptation, their love has only grown stronger.

“What I love about Michael is his passion and dedication to our family” said Jamie. 

Most of the challenges that have stretched their marriage have not come from their relationship with one another, but from dealing with the outside world, a world unfamiliar with the challenges of RP. 

“We have had to talk through lots of issues and have had to learn to communicate clearly. Because he loves me, Michael naturally wants to help me when I need it, and protect me from harm as well as  from “rude” people. I want to be as independent as possible and advocate for the visually-impaired.”

Case in point, since Jamie got her guide dog, Frenchie, about a year ago,  the couple can hardly navigate public areas without constant interruptions. 

‘“We go into the grocery store to buy one or two things and are constantly stopped,” said Michael. “There are people who want to pet the dog, and ask us personal questions about Jamie’s eyesight. They say impolite things and ask intrusive questions. I think, ‘really? you wouldn’t walk up to a person in a wheelchair and ask such questions.’ I am a New Yorker at the core and often my first impulse is just to cut to the chase and say ‘Hey, leave us alone.’”

“But Jamie is different,” said Michael with admiration. “She is not just looking out for herself. She feels she is advocating for the millions of people who are visually-impaired. She wants to change the way people see the disabled. She is an advocate and speaks to people with patience.”

“I have learned over and over again to stand back and let Jamie handle those people’

Michael will be the first to confess that living with RP has made him a better husband and a better person, one with more empathy and concern for others.

“This is the hand we have been dealt, and most days we don’t even give it a thought,” said Michael. “Some days are harder than others but we have met some really great people along the way. The positives of living with RP by far outweigh the disability itself. It just takes a mindset adjustment.”

No matter how many times Michael and Jamie have to adapt or adjust their mindset , whether it is to vision changes or intrusive strangers, they plan to always stick together and adjust as a team. 

‘Michael is so creative and talented in so many areas,” said Jamie.  He is a dreamer and a visionary and I need that type of spontaneity. Without it, I become overly regimented and rigid.” 

“Michael can look out into a big patch of dirt and rubble and see beautiful landscapes, and trees, and usually a built-in pool. Over time, he will always make his vision a reality.’

Jamie explained, ““Instead of focusing on the negative, Michael is always telling me to ‘consider the possibilities.” I cannot see things that are there, but he can see things that are NOT there.” 

Together the two make quite a team.