by Gayle Abramson
Originally published in the FFB Brooklyn Affliate newsletter
Looking back, I remember many family gatherings including our yearly trips to Miami Beach, our family dinners and watching TV together with popcorn on Friday nights. What is lacking in my memory is time spent alone with my father. I spent much time with my mother. She was my special confidant until high school. But I could not confide in my father. I thought it was because he was a man But in hindsight, it was something more. Something that was never said out loud.
Dad had "bad eyesight" through my
formative years. His condition, a degenerative eye disease called Retinitis
Pigmentosa (RP), was diagnosed in 1976. My mother told me when I was sixteen;
dad was not in the room at the time. My father and I never spoke about it. An
essay for college titled: "Interview Questions to Someone I Admire"
was about asking questions to my father about
his eyesight and his feelings,. I read it to my mother and sister. I did not read it to my father. Before college, we took our last family trip. It was then I realized the extent of my father's dependence on my mother and of his blindness. My sister and I spent many nights on this trip talking about it. We never mentioned it to my father. After our trip, I went away to college and my father got a blind person's cane. When I came home on visits, he never used it on our family outings, but held on to mother's arm. I never went out with him alone.
I always knew my father cared about me. My yearly box of Valentine's Day chocolates (which continues to this day) with it's special note, became a symbol of his love. The distance was growing ever greater with his failing eyesight and our continued silence about it. The avoidance of this issue was deafening in the constant loud chatter of our New York Jewish family.
It all began five year's ago. I can attribute the impetus of my transformation to my volunteer work at the Lighthouse for the blind. It was there I learned how to walk with a blind person. I learned what it was like to be blind and even wore glasses that simulated the same type of eye condition that my father has, tunnel vision in only one eye. I learned how difficult it is to maneuver and how easy it is to trip over things in your path. My volunteer assignment was to take a woman shopping for groceries every week.
Joy is a thirty something year old, Japanese women who's been blind since she was a child. She came over by herself from Hawaii over twentyyears ago to go to college. After graduating, she began to work at the Library for the Blind, where she still works today. When we first started our relationship, we could only meet on Thursdays. The other four days during the week she either practiced or taught children Tailko drumming. Tailko is a form of Japanese drumming where huge drums are used and the group plays in perfect synchronization. It is extremely strenuous and much of the practice includes exercises to improve endurance and strength.
Joy and I have gone shopping almost every week for the last six years. Shopping trips with Joy are always a adventure. She is constantly cooking exotic dishes for potlucks or catering Tailko festival or throwing a party for a group of friends. One year, she had to increase her purchases exponentially as she was housing two Japanese teenage boys. We only skip our shopping trips during her trips to Las Vegas to gamble, or to Hawaii, Japan or Europe to visit family or friends. Then there were always trips to other places for Taiko performances. I was constantly impressed by all that she was doing and all that she had done.
Joy was blind. Joy was Japanese. Joy has a bad knee. These are all attributes of Joy but alone do not define all of Joy. I learned how blindness was one attribute of a person and did not define them. There was a place in me that feared if admitting that my father was blind; that his blindness would absorb all that he is and nothing else would be left. Joy showed me how full you can be and still be blind. She never hid her blindness. While for my father it was always "bad eyesight"; Joy was "blind". She used a cane whether walking alone or with others. She has no trouble asking for help when shopping. She could admit her limitations to others in order to elicit their help while stretching the definition of those same limitations, to take on what many seeing people would not. She left her home and family to come to San Francisco and made an amazing life for herself. Blindness was not an excuse for not doing, it was a factor in figuring out how to get something done. In my house, blindness was a limitation. It was an unnamed burden and underlying excuse for many things. Watching Joy and listening to her stories of her plans, activities and adventures showed me another view.
Joy treated me as a friend from the start. She appreciated what I did but I never felt she felt indebted to me in any way. She called me when she needed my help, when I provided it there was no guilt on her part and no burden on my part. She taught me the pleasure of giving. The honesty of our relationship and her open dependence on me for guidance, allowed me to relish my role instead of resenting it. This was missing from my relationship with my father. He never voiced a need for my help and I was afraid to help him; I would be exposing his secret. I would also have to admit to myself that my father needed help which was a difficult image to behold. This kept us at a distance as we were not ready to share the truth that this closeness required.
Joy shared her life, her recipes and her thoughts with me. Her openness allowed me to ask her questions about her blindness that I never asked my father. She answered my questions, honestly and openly. She allowed me to ask the questions that had been implicitly forbidden, such as the questions posed to me on my college entrance essay. At the time I wrote it, I was scared to hear the answers and was not brave enough to directly confront this issue with him. She gave me an understanding of what my father's experience may be without asking him. She allowed me to "see" his blindness in a way I had never acknowledged before. I began to want to ask those questions to my father.
As my relationship with Joy grew, my relationship with my father grew as well. It started in small ways. When I would visit my family and we would walk together, I would take my father's arm. At first, my mother was always on the other side. It was her role to be guide and the family has been stuck in this mode for so long, it was hard to change. Soon, I got the courage to say "I'll walk with Dad". It was still not directly confronting the unspoken words but it moved us in that direction. Dad and I could have conversations, just the two of us. But most important was that I was guiding him, I was helping him to "see" and his gentle holding of my arm was his allowing me to take that role for the first time. Joy's insight also allowed me to understand his requests for order and his obsession about I could no longer ignore the source of the requests and responding to him became less of a burden.
Though the transformation in our relationship was gradual, a significant change occurred about 3 1/2 years ago. On a visit to NY, I Surprised my father and took him out to a Father's Day brunch at Tavern on the Green. I had surprised my mother many times, but I had never taken my father out alone. We had a lovely time. We chatted, we laughed, we told stories about the past and then we walked through Central Park. There he said, I wish I could have done this with you when you were younger. I just couldn't ask you for help. We missed so much". The tears flowed freely and I told him. "At least we have now". We walked in silence for awhile (which is uncommon in my family). For the first time, I felt the tremendous relief in speaking the unspoken.
Since then, our relationship has shifted and the distance between us has lessened. I finally shared the essay with him. Our lines of communication are now open to discussing issues as they arise. For example. last time he visited, he kept asking for food from the kitchen. I had to drop what I was doing to bring it to him. After awhile, I told him I don't mind doing it but could he ask me in a way that I don't feel he is demanding it that very moment. Later he called me aside to tell me that he would get it himself but had trouble seeing in my kitchen. He promised to bring me food when I visit home. The night I arrived in NY, he made a point of making me a cup of tea. When he brought me the tea, it felt just like a box of Valentine's chocolates.
I still take Joy shopping almost every week. She is no longer in Taiko but has filled her time with other activities. Last year, she took me out for dinner to celebrate our five year anniversary. She wanted to acknowledge how much she has appreciated what I have done. Until now, I never acknowledged how much she has done for me. She has helped me love my father for who he is, blindness and all. Joy has taught me how important it is to confront an issue rather than avoid it. And acknowledging my father's blindness and my role as his helper and guide, has let us all "see" each other better.
(Editor's note: Gayle Abramson's father Abe,
has been a member of the Brooklyn Affiliate since 1989. He has Choroidermia,
an even rarer eye condition in the RP family of diseases.
Abe is a active fundraiser and participates in our Support Group and is on our Executive Board.)