Among the array of women sipping coffees with their heads down looking at their phones is Mary Morgan-Corbitt. Her long brown hair and big, friendly brown eyes make her fit in nicely at this local café. You would never know that at 45, she is slowly losing her vision.
“That one machine changed the course of everything.”
Two days later, Mary was in an ophthalmologist’s office and diagnosed with slow onset Retinitis Pigmentosa (RP). The National Eye Institute states that this disease consists of a group of rare, genetic disorders that involve a breakdown and loss of cells in the retina – which is the light-sensitive tissue in the back of the eye. Common symptoms include difficulty seeing at night and loss of peripheral vision. There is no known cure for RP.
“I wasn’t noticing anything different in my vision– that was what was so strange. You look at your whole life and think ‘Was I super sick at one point?’ My parents were never diagnosed with any eye diseases.”
After telling her family her diagnosis, she found everyone was shocked. Extensive research and numerous doctor appointments told her to prepare for a slow decrease in vision. While obviously feeling distressed, Mary started connecting certain dots after learning she had RP.
“It did bring some clarity – maybe that’s why I tripped over that chair, maybe that’s why the door frame keeps getting smaller. That’s probably why I awkwardly run into people turning a corner. I couldn’t believe (and still can’t) that people see the things they see…I am shocked when my husband tells me he can see his own lap, or me sitting next to him, or one of our daughters sitting on the floor.”
For the first two years after her diagnosis, she continued working as a special education and elementary school teacher in Missouri. Mary told her principal that because she had slow onset RP, she’d be able to keep teaching.
“The first couple years weren’t a huge adjustment – it didn’t affect my family, just me. I just had little shin and arm bruises. But that changed as my RP progressed.”
Working with children with severe special needs was becoming difficult because of the RP.
“That year, I had a big shift visually. I was tripping over kids. It (teaching) just wasn’t the best match anymore with my RP. That led to many late-night conversations about retiring early. I love teaching – I wasn’t expecting to be done after 18 years. But it came to a point where I had to take care of myself. If your stress level is up, it’s bad for all parts of your body. I wasn’t in a place to do both (teach and deal with vision loss).”
“It’s changing quicker than I want it to change; I needed to get a handle on it; I needed to get training and go to a support group. I needed to pour myself into that.”
The first year not teaching was rough emotionally. She started going to meetings at the St. Louis Society for the Visually Impaired to help cope. Out of the group of 15 people she met weekly, she was the youngest and least visually affected. Because of this, she felt she could be of some help to these people in her group – even if it was as simple as handing out sweets.
“Most of the people there were older with macular degeneration and so sweet. I became the cookie getter. I could do that. They were right in front of me, and I could see them and pass them out. Meeting these people helped me realign my perspective. One day, they’d be in a funk or I’d be in a funk, but giving cookies to these people – I brought them joy because I was giving them a cookie! I gained so much from them. I was so thrilled to have that. It helped me grieve the [loss of] teaching.”
“We need to talk about your driving.”
Two weeks before Mary’s 40th birthday, her doctor told her that her visual fields (peripheral vision) had decreased to a point where driving was now unsafe.
“He said, ‘We need to talk about your driving.’ I thought he was talking about driving at night. When I would drive at night, glare from oncoming traffic would be like looking at the sun. I was wearing sunglasses driving at night because of the headlights!”
Her doctor was talking about all of her driving. Under Missouri law, if anyone willingly goes behind the wheel with a progressed visual disease and gets into an accident, they could be prosecuted as if they had a DUI.
“If didn’t tell you, I couldn’t sleep at night,” her doctor said.
This news shocked Mary. She felt that she was just adapting to the visual changes as they came and continued doing things (like driving) as normal.
“My husband and I got into the car after that, and I said, ‘I guess I’m done.’ It was so weird. It was like quitting something cold-turkey. I didn’t quite know how to digest any of that. I’ll be honest: I hate not being able to drive. I’ll probably always hate it. I’m used to it, but I hate it. It’s a part of my life that I miss so much. I’m not a big planner and like to be more spontaneous. It’s forced me to plan my days.”
“There are many silver linings.”
Mary has hope and a brightness that’s hard to ignore.
“When you’re losing your vision, there’s a clarity that can come if you’re open to it. It takes time. The biggest one is that this is so life-altering, but not life-threatening. So many are dealing with life-threatening things. It’s not to dismiss RP. I know this is not the hardest thing in my life that I’ll have to deal with. It is now, but there’s going to be so many things that are going to be challenging in different ways. What perspective do you want to have? There are some valley times, but I don’t stay in those long anymore.”
Mary has become a public speaker with The Foundation Fighting Blindness and works with Dining In the Dark. These organizations raise funds to support research in finding a cure for retinal diseases. She feels there is a dire need for more education and connection between people who have eye diseases, as well as those who do not.
“As I was learning more and more about vision loss, my own and that of others, I realized how many misconceptions are out there related to vision loss. Many people believe, and I was one of them, that you either have vision or you don’t. There’s either darkness or you can see fine. But in reality, many people who live with vision loss fall into a grey area.”
For now, she is considering mobility cane training.
“I haven’t had the courage to pull it out, even though I think I should use it in really busy places. I don’t see people until they’re right in front of me. If you have this identification cane, it’s supposed to let people know I’m visually disabled. People online say it’s like parting the red sea. They treat you kinder. If you accidentally run into people, they see the cane and don’t treat you like you’re intoxicated or something. You don’t get the snarky comments.”
She has it, but she hasn’t used it.
“I’m not ashamed of it. But, as a human, you pride yourself in ‘I just don’t need that yet. I’m not at that level; it’s not that bad.’ These are just the sort of things that can go through your mind.”
Her Advice: “Be aware of your body – every little change.”
“We so take eye health for granted. You assume your eye health is going to always be there just like we assume when we wake up our hearts going to beat. You have to wonder how preventative care would play a role in all this.”