In 1934, when I was nine years old, a doctor told my mother that my left eye condition was probably a lazy eye.In 1953, while living in Paso Robles, California, a terrible pain started in my left eye and I was unable to see out of that eye. An ophthalmologist diagnosed the condition as glaucoma and removed the eye. When I was ready to leave the hospital, he told me that he had observed some lesions of von Hippel-Lindau disease (VHL) in my right eye and that my eye should be examined periodically. At the time we did not know that VHL causes a series of tumors, or lesions, in the retina and other parts of the body.While living in Long Beach, California, in 1956, the retina in my right eye detached.

Dr. Dohrman Pischel, in San Francisco, performed the surgery and told me he opened a window so I would be able to see about 10% of normal vision. He told me he wanted to examine my children’s eyes and to return in six months. What he did not tell me then is that VHL is a hereditary disease. Each child has a 50/50 chance of inheriting it from an affected parent.When I left the hospital I knew I would never have normal sight, so I began looking for rehabilitation programs for the visually impaired. Within three months, the retina detached again.

The operation that followed was not successful and I realized I would never see again. I went into a state of mourning and my whole life passed before me, including what accomplishments I had made. Only 31 years old, with three small children, my most important thoughts were how I was going to care for my family. I contemplated what solutions were available and what goals were the most important. I prayed for guidance and remembered that I had read "be prepared for all phases of life and your chance will come."

I enrolled at Long Beach State College through the State Rehabilitation program and earned a Liberal Arts degree in 1960.In 1961 I started to work as a social worker for the Santa Clara County Department of Social Services and in 1969 received a stipend to attend San Francisco State University where I received a master’s degree in social work. I returned to work as a psychiatric social worker. While listening to the radio in 1963, I heard an announcement that Claude Pattemore had won the U.S. Blind Golfers Tournament in White Plains, New York. After hearing this, I went outside with a broom and started a golf swing.

I told myself I could play golf again. I practiced with a neighbor and my sons and soon was playing in local tournaments with my son Steve as my coach. Steve was then twelve years old. I learned to play golf as a teenager, while caddying at the San Gabriel Country Club. After I lost my sight it was an asset to me that I had the training and fundamentals of playing golf. One important characteristic for me is the "mind’s eye" which makes a picture of the shot that I am going to play and the shots that I have made in the past. For example, the eleventh hole at San Gabriel is approximately 130 yards. I can see the eucalyptus trees on the sides, the creek and the bridge across the fairway and how the hole is trapped, with a small opening in front of the green and a big trap behind the green. It has to be a precise shot to hit that green.

Now when my coach tells me that the shot is 130 yards, I make a mental picture of this hole and try to make a shot as though I was hitting for that green. I use the same technique for all my shots. Still the most important person is my coach. Without his help I would not be able to play this wonderful game. My son Steve is still my Number One coach and has been for thirty years. Steve works at a golf shop and gives lessons. Daughter Peggy also coaches me and is an L.P.G.A. teaching professional in Palm Desert, California. My wife, Dorothy, coaches me at practice, on vacations and in some tournaments.

The question I am asked the most is: "How do you play golf?" My answer is that I have a coach who lines me up and sets me up at the tee so that I’m lined up toward the direction I want to go. He sees that my feet, shoulders, grip and the face of the club are in the correct position to hit the ball towards the flag. He asks me if I’m ready and when I tell him I am, he steps back and I swing at the ball and hope that I hit it toward the flag. Without the coach, who takes the place of my eyes, it would be impossible to play.

VHL has greatly affected my life, as two of my children also have VHL. My older son died at the age of 38 of leiomyosarcoma, a type of cancer in the spine, not connected to VHL.

Editor's Note: At 70 years of age, Chuck Mayo is currently ranked number 5 with the the United States Blind Golfers Association, although he has held the number 2 ranking for many years in the past. He plays U.S. Tournaments in Orlando in November, Phoenix in April, and New York in June. He also travels to foreign countries, such as England, Canada, and Australia, for other tournaments. He is organizing a West Coast blind golfers' association which will also include people who are partially sighted because he would like to see more visually impaired people participate in golfing competition.

As published in the VHL Family Forum, 3:4, December 1995. For permission to reprint, please contact the VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

mystory