Thriving in a World with No Sight: Monica Johnson’s Story

Diabetic retinopathy is the leading cause of vision loss and blindness among adults between 20 and 74 years of age. At the age of 29, Monica Johnson lost her vision to diabetic retinopathy.

In 1984, I was diagnosed with type 1 diabetes at the age of 11. I grew up on 156 acres of land in a small town north of Syracuse, New York, called Bernhards Bay. Bernhards Bay is a small hamlet in Oswego County along the north shore of Oneida Lake. The house I lived in has been in my family for well over two hundred years. I loved everything about living on the farm and riding my horses.

Being diagnosed with diabetes in sixth grade was a very tough experience. Within a month, my weight dropped from 110 to 70 pounds. It wasn’t until later that I understood what was happening to my body. For people with diabetes, insufficient insulin prevents the body from getting glucose from the blood into the body’s cells to use as energy. When this occurs, the body starts burning fat and muscle for energy, causing a reduction in overall body weight. Little did I know, I was experiencing the early warning signs of weight loss, extreme thirst and frequent urination.

On Thanksgiving night in 1984, it became too much to bear when my dad had to carry me to the bathroom because I couldn’t get there on my own. I spent two weeks in the hospital learning about insulin shots and all the different tests that come with a type 1 diabetes diagnosis. I was 11 years old and terrified, not knowing what life would be like when I walked out of the hospital. How would I give myself insulin every day? Would I be able to do the normal things other kids do, like enjoy birthday cake? There were so many unknowns and I felt so lost.

Diagnosed with Diabetic Retinopathy

In 1984, many people didn’t know about diabetes. My classmates thought it was contagious and they could catch it by being around me. When I returned to school, I faced rejection and bullying from my closest friends. It made me want to hide my diabetes from everyone, including my family. Growing up is not easy but growing up with a chronic condition is much more difficult.

Not wanting to appear different from others, I neglected proper maintenance of my diabetes.

When I was 28 years old, I noticed that my vision was getting blurry, and my primary care doctor suggested I visit an eye doctor to see what was going on. I left the eye doctor’s office with a prescription for glasses but felt there was more to it. It got to the point where my prescription was changing every three months. In one visit to the eye doctor, they told me they were starting to see signs of diabetic retinopathy. It was almost like a dimmer switch had been turned on and things were getting darker little by little. On February 9, 2002, at the age of 29, I woke up and that was the last time I saw daylight. The first words I uttered were, “My life is over, and I’ll never be able to do anything ever again.”

When I first went blind, my mom invited a blind person to the house to talk about how successful I could be as a blind person. I wasn’t ready for that yet. I was newly blind and as he left our house, I could hear him touching objects to find his way out. I was so mad at my mom and couldn’t believe she would do that to me. After five years of being cared for by my mother and stepfather, I was deep in depression and doing nothing but lying in bed listening to the radio or television.

Empowering People to Change Our World

I was struggling to find out who I was, my purpose in life and why I was here. Then I had a defining moment. I was sitting on the couch listening to the television when I heard a voice telling me to get up and do the dishes. That’s when I knew I needed to be an advocate for myself because I had gone from being totally sighted to losing my sight within six months. It was a small step at the time, but my transformation progressed over the years and I went from being a physical, visual, and emotional invalid to achieving numerous personal victories.

Aurora of Central New York, a non-profit organization dedicated exclusively to promoting independence and opportunity for people of all ages with vision or hearing loss, taught me how to return to normal life with my visual impairment. I went through two and a half years of training with them and I’m now able to live on my own. They taught me to navigate the bus system and gave me confidence to travel on my own.

The ARISE Foundation is a non-profit, community-based organization that works to ensure everyone, regardless of disability, has the power to make life choices and achieve their dreams. They found a place for me to live and made sure it was compatible with my needs.

I’ve also had the opportunity to share my story with Hillrom, a global medical technology leader. The Welch Allyn® RetinaVue® Care Delivery Model by Hillrom enables healthcare providers to examine patients for diabetic retinopathy at the point of care. I wish this option was around in 1984, but I am so impressed with how they want people to have the best care possible.

Some people look at my blindness as a tragedy, but I look at it as a blessing. There were times my diabetes made me feel unworthy, but I know my purpose here is to help people through motivational speaking. I get to empower and encourage people every day. If I’m able to help one person, I’ve already helped to change the world. If I can encourage someone to find peace with his or her diabetes or blindness, I’ve done my job.