The day begins at 6 a. m. for Ray Shaw when an Uber driver picks him up at his Lompoc home and drives him to Santa Maria. There, he takes the Amtrak bus to Hanford, where he connects with the train for the hour’ s ride to Fresno. He is met by a member of the Fresno Lions Club, who drives him up to China Peak Mountain Resort. In all, it’ s a 9½-hour trip.
Once aboard, it gets awkward.“ The hardest part is finding a seat,” Shaw said.“ When you get on with a cane, it can be real quiet. People don’ t know how to react. They don’ t want to say the wrong thing. They don’ t want the burden of sharing the ride. Because of social media, they are happy in their own cocoon.” And, he pointed out,“ there is the hindrance of the train lurching all over the place.”
Shaw and his wife, Debbie, ran the Solvang Needleworks for 36 years, eventually having to close the store when his vision got worse. It got to the point where he could only see customers from their eyes to their chins.“ I couldn’ t see the money. It got kind of embarrassing.”
Shaw stays on the go. He’ s a member of the Lompoc Bicycle Club and rides on a recumbent tandem bike. On a typical ride, they’ ll cycle 30 miles, have breakfast and return. He also plays golf.
Once on the slopes, he is passing fellow skiers, but there is one difference: Shaw is practically blind. He is guided by Randy Coffman, founder and executive director of the Central California Adaptive Sports Center. Shaw’ s helmet, which is provided by CCASC, is equipped with in-ear speakers and a voice-activated microphone so he can communicate with his guide.
Shaw has always been an outdoorsman, and when he heard about CCASC at a ski event at a Santa Maria mall he inquired. He not only skis, but rock climbs, kayaks and goes mountain biking.“ By far they are just head and shoulders above any program I’ ve worked with,” Shaw said.“ I feel totally safe with Randy and his helpers.”
Shaw, 63, has only 2 percent of his vision during the day.“ It’ s like looking through a soda straw. You have a 100-piece jigsaw puzzle, but you can look at only one piece at a time.” At night, he can’ t see a thing.
Retinitis Pigmentosa is an inherited disorder in which one’ s peripheral vision gradually deteriorates. Those who have it suffer from a type of night blindness. The National Human Genome Research Institute, which is affiliated with the National Institutes of Health, likens it to tunnel vision. Shaw’ s father had it, and from an early age he knew darkness would encroach on his world. There is no cure.
With his limited day vision, Shaw learned to navigate his way to the train. He followed those moving toward the platform. He got to know the stationmaster. In the 45 minutes before the train arrived, he worked his way along the wrought-iron fence and positioned himself where the train would stop.“ The conductors are very good about coming over and asking if I need assistance.”
Last summer, Shaw was at a CCASC campout at Shaver Lake. It was night. The world seemed to close in on him.“ The darkness started to feel like a velvet blanket,” he said.“ I was suffocating. It was very still. Without any wind. Totally black. Have you ever been in a cave? When you go into a cave, you start feeling the walls on your face. It’ s called facial vision. When you pass an opening, you can tell. You hear things differently. You feel things differently.”
“ You think you’ re having a heart attack. You’ re hyperventilating. The logic side of you says you know that’ s just adrenalin. It will wear off in 20 minutes. When you start going into that anxiety whirlpool, that whirlpool picks up energy and speed, and you get the feeling you’ re going to die.”“ This is what blindness is like, what the rest of my life looks like,” he said.“ I was facing my future and it didn’ t look very good.”
Coffman took Shaw outside and quietly calmed him.“ He turned on his flashlight to where I could see my hands,” Shaw said.“ I was impressed he could talk me down from that.” Now Shaw takes a flashlight. It doesn’ t illuminate anything, but he can at least see a cone of light. He wanted to gain a degree of control, to avoid the panic attacks.“ I’ m not willing to give it up and sit back and say no because I might have a panic attack.”
5 Participant Profile: Ray Shaw