THE WE IN EYE
by Scott Brown; photography Kelli Uldall
Carmel Magazine

Some people live their life stories far better than they can be written. Such is the case for J and Sonja Jackson, who are profiled in the story "The Butterfly House" (Winter Issue - 2005)

When Sonja was diagnosed with retinitis pigmentosa - a group of inherited eye diseases that affect the retina and causes the degeneration of one's vision - she was told by her doctors that bright colors would be the easiest for her to see.

Scott Brown's editorial contines ...

So J took his paint brush to his inexpensive Pacific Grove real estate and created something far more valuable: a kaleidoscope of colors, a monument to what one should do for love. Property comes and goes, but love according to J Jackson is the only true currency.

One of my earliest writing coaches reminded me that in order to affect a reader with true emotion, I must see with my heart and not my eyes. "No tears in the writer," he said, "no tears in the reader".

if the story of J and Sonja Jackson doesn’t raise a lump in your throat, it will be because my reservoir of words ran too shallow. For I assure you, my reservoir of tears did not.

They say retinitis pigmentosa (RP) is an "orphan disease" because it affects fewer than 100,000 people in the United States. I have a better adjective for it: "cowardly." It steals one’s quality of life without taking life itself. It’s a run - and - hide illness that doctors are slowly circling.

Furthermore, whatever gene creates RP managed to coincide with the one that makes good people. Take Maverick Malech of Salinas, for example. Despite being legally blind, he recently competed in the Iron Man Triathlon in Hawaii, winning his division.

Or take my personal hero and cousin, Craig Brown of Carmel Valley. He’s the drummer in numerous local bands, and I’ll bet most of you have enjoyed his music without realizing that on some nights he can’t see the people dancing ten feet in front of him.

The same heat that would melt most young men has forged his character and his good humor like steel.

Craig told me of a convention he attended for RP sufferers, which concluded with a dinner - dance. "You’ve never heard so many plates breaking," he said, laughing. "Or seen a brighter dance floor."

He said one young man rolled toilet paper from the bathroom back to his table. "Now I’ll be able to find it any time I want to," he explained.

The RP cause is one that has been taken up by actors and AT&T Pro-Am participants Kevin James and Ray Romano, as James’ sister suffers from the disease. Each year they host a charity golf tournament and comedy show to benefit RP research.

"It really is uncanny how RP hits the best people," James said. "It breaks your heart, and you just want to help."

From my experience, these folks would make my old writing teacher proud. Seeing with their hearts is what they do best.

To learn more about RP, please visit the Foundation Fighting Blindness web site at www.blindness.com, or call 800-683-5555.

Scott Brown, Editor of the Carmel Magazine