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