10 Sep Meet: Jen Walker
A story of Fighting Blindness
“When I was diagnosed with Retinitis Pigmentosa at age 14, I was told by my retina specialist that I wouldn’t have trouble with vision until I was “much, much older.” Apparently, late 20’s was “older.” At 28 years old, I started noticing that I couldn’t see my 6-month-old daughter’s face very well. If I stared at her eyes, I couldn’t see her nose, let alone the rest of her body. I then started realizing that if I looked at my mom on the couch, I couldn’t see my dad sitting directly next to her. I was missing handshakes, curbs, and wet floor signs.
I remember reading the definition of my disease. “Retinitis Pigmentosa is a blinding retina disease that causes gradual loss of peripheral vision and eventual blindness. Most people are legally blind by 40.” I did the math…28 years old…I had 12 years left of decent vision. (In reality, I became legally blind by 30). The world stopped. I cried. I sobbed. How can this be happening? I have my dream husband, job, life, etc… this couldn’t be happening, not now.
So at 28 years old, I hung up my keys. Sometimes I still can’t believe that I’ll never drive again. In addition to not driving, I started to realize it was hard to get around on foot, as well. I started avoiding crowded, unfamiliar, or dimly lit places. In the back of mind, I knew it was time. It was time to have the conversation that people with visual impairments dread…the white cane talk. It took every courageous bone in my body (I don’t have many) and I called the Bureau of Services for the Visually Impaired. You can receive services if you are working with a disability. I was (and still am) an elementary school teacher. I was given some wonderful tools to use in my classroom and elsewhere such as magnifiers, lamps, and the dreaded cane. I still remember the moment. The wonderful Dr. Flom from the OSU Low Vision Center showed me my field vision tests results. She informed me that I had about 20 degrees of remaining vision (others have 180) thus leaving me legally blind. She asked if I was driving and I said I had stopped a few years ago. Next, she had something in her hand and she said so kindly, “At about 20 degrees of vision, many people start to feel they need help getting around. This is a folding white cane.” And she put it in my hand. I held it and cried. So many thoughts went through my head, “What has my life become?” was the most prevalent. However, I knew I needed this cane. Next, I was signed up for O&M training the following month.
My husband and I decided to have one more baby, because we didn’t want this disability to dictate our dreams we had together. At 8 months pregnant, I had my first white cane training session. I knew I wanted my baby to never know a time I didn’t take charge of my disability. I wanted her to grow up seeing me with a cane and kicking butt at life. With the help of these BSVI tools and training, I am able to stay in the classroom a bit longer. Thanks to the love and support of my family and friends, I know I’ll be a great mom and wife because neither of those things require good vision, just love.
My husband and I are now involved in the Foundation Fighting Blindness Columbus Chapter because we want to be a beacon of hope for those with blinding retina diseases. These diseases are rare and without a cure. The FFB is one of the only foundations dedicated to research, treatment, cures, and prevention of degenerative retina diseases. If you or someone you love is looking to connect with the Columbus blind/visually impaired community, check out our Facebook page and/or visit www.fightblindness.org/