Society will sometimes lead us to believe that upon reaching that magical AARP milestone age, we’re supposed to start winding down, relaxing, taking it easy. And while that’s true of some people, others find that as a time in life to try new things, embark on exciting adventures, and maybe even see the world.
My mom is one of those “embark on exciting adventures” people. It’s because of not only this new phase in her life, but her journey leading up to it, that my mom is my hero. Not in a sappy, Hallmark move kind of way…well, sort of, but in a, “I’m tougher than nails and no one is going to stop me” kind of way. Let me explain…
My mom was diagnosed with Retinitis Pigmentosa as a young girl. For those who are unfamiliar (which could be many – this isn’t one of those diseases you hear about very often) this is a degenerative eye disease affecting the retina. It affects only 1 in 4,000 Americans. It is genetic, although as far as we know, no one else in our family has experienced it.
Retinitis Pigmentosa causes loss of night vision, loss of peripheral vision, loss of central vision and color blindness. There is no treatment; there is no cure, and the disease can lead to eventual complete blindness.
In her 20s, she was declared legally blind. In her early 30s, she voluntarily turned in her driver’s license as she felt unsure of herself driving from Pahokee to Belle Glade (about 10 miles).
Despite this disease, my mom worked in accounting and bookkeeping her entire life. In the 80s-2000s, while keeping the books for our family farm, she ran payroll for hundreds of employees on her computer using a DOS program for which she’d memorized the keystrokes to complete her task. This was just one of many day-to-day tasks that some people in her position would have given up on…but she did not.
My brother and I grew up, moved out, went to college (me) and joined the Army (him). We got married, settled, and started our own adult lives. My parents’ house was quiet; there were no more term papers to help with, no Saturday nights waiting up for one of the kids to get home, no big meals to prepare. Yes, that “winding down” time had arrived.
My mom then became involved with Lighthouse for the Blind of the Palm Beaches. She began to learn about “accessible” technology – programs, devices and apps for the visually impaired. She found that through the State of Florida, there is a wealth of technology available.
She started with audio books. She moved on to a screen reader, to help enlarge her cookbooks so she could continue with one of her hobbies and passions. She installed a computer program that allowed her home computer to “talk” to her. She started texting and she joined Facebook months before I, her sighted daughter, did. She was unstoppable.
She no longer wanted my dad to drive her to Lighthouse; she started taking the bus, wanting to increase her independence despite her disability. She used her white cane frequently. She took dance lessons, and performed in a dance competition. She learned Braille. She began taking classes in technology. She began volunteering to assist in the technology classes.
And today, my mom is an Access Technology Instructor at Lighthouse. Yes, my mom, the girl who was declared legally blind her 20s and stopped driving in her 30s, became an educator in her 50s. Because, really, who has time to slow down?
This woman gets on the bus several times a week, and heads to the coast. She teaches in the classroom, and she teaches in homes. There is now a waiting list for these classes, thanks to the awareness she has helped bring to the technology available.
Despite her busy schedule of teaching, co-chairing events, and volunteering for various organizations, my mom found new things to add her ever growing “to-do” list. There was still so much to learn, to “see”, to become involved in, to do. She became increasingly interested in Southeastern Guide Dog School, and so, a couple years ago, she began the process of applying.
This is no small feat. It involves months of interviews, education and mobility training, to make sure you’re ready to get around with just your dog. An example of mobility training: crossing all four intersections (eight lanes each) of Congress Avenue and 45th Street in West Palm Beach, alone, during morning rush hour. This may sound easy, but for those who travel in rush hour traffic, have you noticed how many people who are turning right on a red light fail to slow down, yield, or even pay attention to pedestrians in the crosswalk? When my mom told me this was one of her “big tests” for mobility training, I was nervous. We prayed about it at home, at church, in small groups. I now knew what all parents probably feel like when their sixteen year old drives to school alone for the first time.
Once you’ve passed mobility training, you begin meeting with trainers from Southeastern Guide Dog School who will assess you, to help pair you up with the perfect dog. After that, the waiting game begins. There is no attending school until a match has been found; this can take some time to happen.
I am beyondthrilled to say that tomorrow, just a two short months after completing her training, my mom will leave for Bradenton, where she will meet her dog for the very first time, and attend school. She will be there until her graduation on October 31st. Yes, my mom is going “off to college” at the young age of 55.
In terms of faith, there are many people who question why certain individuals are given struggles like Retinitis Pigmentosa. My personal belief has always been that, through these times of difficulty, not only will we learn the power of our faith and the strength and love of our God, but that we will be given the opportunity to be Jesus to someone else. And I can say, with certainty, that regardless of the challenges presented, my mom has used this to its full positive ability, and has absolutely brought love, joy, appreciation and determination to many. She has been the hands and feet in more ways than I could mention.
The image of a hero is usually a grand one…someone with superhuman strength, fortitude, power, and an unwavering spirit. That’s my mom. No mountain too high; to river too deep; no storm too turbulent. Immovable, unstoppable, unbreakable.
I could fill the pages endlessly with words telling you about the adventures we’ve been on as a family; the fun things we did growing up, the foundation she gave my brother and me for life, the wisdom she imparted on us and the respect, appreciation and determination we have gained through watching her. But I will close with this, something my mom told me as a young girl when faced with decisions that weren’t always easy:
“Life is not a dress rehearsal…you only go through this once.”
Once. Just one time to do all you can, be who you were destined to be, follow the path laid in front of you – regardless of how rocky it may be. And it’s never too late to start.
If, in my life, I can be half the mom she was to me, I know I’m doing it right.
Thank you, mom, for being you. Happy Birthday.
Endless love and thanks and gratitude,
Dancing Out of Darkness
The whole fam-damily, kayaking River Bend in Loxahatchee.
Mom with Stevie Wonder at LAX.
If you’d like to read more about my mom, check out this article published in the Palm Beach Post earlier this year: How Miracle Devices are Helping the Blind.
Also, you can see photos from Dancing Out of Darkness, an event held by the Beyond Blind Institute, by clicking the link.
If you’d like to learn more about Retinitis Pigmentosa, check out RP International.