“Please be patient with me. Sometimes when I am quiet, it’s because I need to figure myself out. It’s not because I don’t want to talk (or don’t love you). Sometimes there are no words for my thoughts.” Kamla Bolanos
Who would have known how bonded I am with people I have not met, some of whom I’ve never known, but with whom I share something life altering. It was made aware by way of one simple Wikipedia google search.
American young adult paranormal and science fiction author, Jennifer Armentrout.
American Kansas City broadcaster, Walt Bodine.
41st Mayor of San Francisco, Willie Brown.
Canadian playwright, Alex Bulmer.
British paralympic cyclist, Neil Fachie.
Urban planner, author, and former mayor of Ventura, California, William Fulton.
American business magnate and Las Vegas casino developer, Steve Wynn.
On and on it goes, paralympic alpine skier, German Tibetologist, professor at Columbia Business School, American record producer, standup comedian, and more. I was paperboy, lawn maintenance mule … waiter … teacher, principal, high school counselor. Varied professions, yet we all have a common vision. Retinitis Pigmentosa (RP).
RP’s River of Life: My Perspective Living with Retinitis Pigmentosa
This little RP memoir includes my story as it relates to retinitis pigmentosa, a rare degenerative eye disorder of which I am an involuntary member. Most importantly, I’m confessing a rare perspective about this blind condition. My viewpoint is not intended to be scientific or much about the physical aspects and deterioration of an RP person’s photoreceptors, though included.
No, this little RP memoir is envisioned to provide comfort for people with this disease, awareness for those in their inner circle, and insight for others who are curious how RP affects a person’s mind, behavior, and independence. Living with RP can easily eat away at a person’s confidence and self-assurance. It can drop a superstar to their knees.
But, when RP is recognized, often frequented, and confronted then the limitations of RP do not define the person. It can’t tear at their soul. It will be their paddle used to navigate life’s sometimes torrent rivers. An adventure of sorts down a meandering tributary. Accepting the twists and turns that will come while drifting down this RP River of Life and removing the cover of shame, self-pity, and victimhood. Learning to live a new independent life.
Once each week until fully in bloom I will post my thoughts, insights, and story as it relates to being legally blind, learning of this disease when playing pick-up league ice hockey in Central California, age 28. As I unpack this little RP memoir I believe it will bring awareness, comfort, and a persevering spirit to those who are in the company of this rare but advancing fraternity.
Take care, my friend 👍.
