An Actress Recalls the Travails and Triumphs of Growing Up with a Mentally Retarded Sister

updated 03/04/1985 AT 01:00 AM EST

originally published 03/04/1985 AT 01:00 AM EST

For the parents of retarded children, life is filled with pain and anguish as well as joy. The relationship between those children and their siblings, however, can be even more fraught with ambivalent feelings. It's an emotional seesaw that actress Heidi Bohay, 25, who plays desk clerk Megan Kendall on ABC-TV's hit series Hotel, knows well. Her only sister, Tammy, now 22, was brain damaged either at birth or in a fall when she was a toddler.

Over the years Tammy's condition exacted a large emotional toll from Heidi—feelings of neglect, resentment, embarrassment, anger, fear, frustration and guilt. At the same time, a deep love developed between the sisters and valuable lessons about patience and understanding were learned. Not long ago Heidi met with reporter Malcolm Boyes at her San Fernando Valley home and talked about the difficult but rewarding experience of having a retarded sister.

Tammy was 18 months old when she had the accident that doctors believe may have caused her problems. I was about 4½ and we were dancing around the living room of our home in New Jersey. Tammy climbed onto a rocking chair and started to rock back and forth. Before anyone could grab her, the chair suddenly tipped backward, throwing her headfirst to the floor. She lay unconscious for more than a minute and had to be revived by paramedics who rushed her to the hospital. The doctors warned my parents that she may have suffered brain damage but that it was too soon to tell.

For the next year or so, everything seemed to be fine. Then one day when Tammy was about 3, she just fainted. She came around quickly, but it started happening again and again. At first the doctors thought she had epilepsy and treated her with so much medication that she was hallucinating. Eventually she had to be detoxified.

Over the next several years my parents took her to nearly every hospital on the East Coast. The diagnosis was always the same. All the doctors could tell was that she had sustained brain damage. The hard part for me was being left with relatives. I felt very resentful while my parents were gone. I knew if I tried to explain to people they would say, "What? Are you jealous?" But when you're 5 or 6, you don't think rationally. You just feel you have been abandoned. For years I kept all those emotions—frustration, resentment, deep sadness—inside me. They come out now when I am acting. Whatever a scene calls for, I can pull out that emotion in seconds.

As I got older, I realized just how serious Tammy's problems were and what a strain they put on the family budget. My father owned a tavern with his brothers, but he gradually sold off his share as the medical bills mounted. My mom worked in a beauty salon and later took up secretarial work as well to help with the bills that ran up to $50,000 some years. To this day, they have never taken a vacation. At Christmas time we would go shopping and I would say, "That's okay, I don't need that toy." I even managed to get used to people staring at Tammy when we were out together. I know they don't mean to be cruel. They just need to be educated about the Tammys of this world. A lot of retarded children are very physical. They want to touch, hug and kiss. It is their way of demonstrating feelings that they find hard to put into words. But some people are intimidated by that.

When Tammy entered her teens, she started having temper tantrums that became more violent and more frequent until they were happening every day. I had started high school by this time and girlfriends and boyfriends became very important to me. Tammy always wanted to be the center of attention. If a boyfriend came over, she'd flirt with him and hang out but she never knew when to stop. If we were sitting out front, she'd tap on the window. When we'd ask her to stop, she'd go upstairs and bang on the window. One day a friend of mine was sitting on my bed reading a book of Tammy's. When Tammy came in, she decided she wanted the book back—right away. When my friend wouldn't let go of it, Tammy picked up a Lysol can and hurled it at her head. The doctors had always told us to just walk away when Tammy started acting up, but that's hard to do when someone has just hit you.

By the time Tammy was 15 her tantrums became too hard even for my parents to take. After a lot of soul-searching they decided to try putting her in a special school. Soon after she started school, Tammy stopped talking and began communicating by tapping, just like Helen Keller. Once was "Yes," twice was "No." She had become fascinated with Helen Keller after seeing the movie The Miracle Worker the year before. Doctors could find no physical reason for Tammy's silence. One theorized that she was angry with us and was trying to teach us a lesson. My parents kept trying different schools. Nothing seemed to help, but we never gave up hope that Tammy would talk again.

The only positive thing for me was my career, which was looking up. After graduation from high school, I worked in New York doing commercials, and went to acting school. Then I decided to move to California. It was a tough decision. I felt so guilty leaving my parents, but they had always encouraged me to try to live my own life.

I still called Tammy all the time from California. She would tap on the mouthpiece of the phone. Toward the end of 1983, Tammy entered her fourth school, a private one in Pennsylvania. It is staffed by teachers who are parents of retarded or disabled children. Because of her new environment, Tammy had trouble sleeping for three weeks. So they put her on medication. A month later my mom called me and insisted I call Tammy. I did and I soon heard, "Hello," from the other end. I couldn't believe my ears. The doctors think the medication had relaxed Tammy to the point where she didn't care about the wall she had built up over the previous six years. She is slowly being weaned off the medication now and she's still talking.

I will always take care of Tammy as long as I live. I plan to marry and have children and Tammy will be a part of that family if anything happens to my parents. But after seeing what they went through, I would have to think very hard about Tammy living with me. I am not sure I have the strength to give up my whole life as my parents have. But, of course, it's not just giving. Tammy has taught me simplicity, patience and understanding and I thank her for that.

From Our Partners