What Kind of Support is Supportive?

By, Sheri

I think that many of us would agree that some support works for us and some doesn't. I've had my share of both.

First I'd like to discuss some which hasn't worked for me. On one of my first days after I returned from brain surgery, I answered the phone at my parent's house. The person on the line, a close personal friend of my father's, was surprised to hear my voice on the other end. After talking to me for a few minutes, he said, "You sound great. It is so important to be positive when you have a terminal illness." I informed him that the politically correct term was life-threatening, not terminal!

One of the biggest struggles I had dealing with my cancer was coping with my lack of control. Like many support people, my family attempted to help me by protecting me. They often tried to do too much for me or made decisions which really should have mine. Their well-intentioned warning, "you're trying to do too much," eroded my personal power. I feel strongly that a person's sense of perceived control over his or her life is very important for health. Marty Seligman, a psychologist who wrote the book Learned Optimism, says that optimism is based on an explanatory style of perceived control over many aspects of our lives. To me, I believe that having a healthy sense of control and doing things which promote my sense of health and well-being are very important in maintaining my positive attitude. I think a support person who encourages this sense of control is very helpful and healthful.

Another struggle for me was feeling isolated from my peers. Some people had difficulty facing the reality of my illness and physically stayed away. As most of you know, this can happen and it is painful. I was able to handle these situations by explaining to myself that it was their fear about illness and death, rather than their not caring about me, that kept them away. The distance still hurt, but the explanation made me feel better.

More than physical separation, I felt emotionally distant from people. Being diagnosed with an aggressive, malignant brain tumor at age 24, I felt that I was the only one who struggled with important issues such as life and death. While some of my friends were worried about their next promotion or problems with their boyfriend, I had real problems. I became intolerant about people's concerns over minutia. I felt different and this was lonely. Having friends idolize me and make remarks such as, "How could you ever get through it?" made me feel even less connected. I would have felt understood, rather than isolated, if my friends had voiced what they might have felt deep inside if they were in my situation: "There must be times when you are so pissed-off you must want to quit!!" Hearing this, I would have felt validated and been able to express my true feelings, instead of thinking, "Yeah, right. I am great and brave and up all the time. What a hero I am."

Only once, throughout my entire illness, did a friend cry with me and say, "I'm really scared." This allowed me to put words to my feelings and helped me to share them. I think that support people are sometimes afraid to share their 'negative' feelings because they do not want to make us cry. Well let it be known, a support person does not introduce fears or tears in us, we already have them! Usually it is our support people who require us to hide them! Personally, I would rather use my energy for healing, rather than for stuffing feelings. A good cry actually boasts the immune system!

I also got a kick out of my most creative support people. Instead of sending the obligatory flowers, my friend brought me a "project" when I returned home from the hospital. The project was planting a small herb garden in redwood planters. Taking care of this garden became a very important part of my day. Of course, when I got better and more active, my forgotten herb garden died. Somehow this was symbolic of my progress.

The same friend, when I asked her to bring me a milkshake to the hospital, brought a blender, ice cream, and an old-fashioned creamery hat. When the nurse first saw the blender, I think she thought that we were going to make Margaritas! We had a good laugh. I should have known better, but when I asked my friend to bring me dinner at the hospital, rather than just bringing "take out," she decided that it was a beautiful day and that I should enjoy a summer barbecue. In the hospital lounge, she spread out a red and white checkered table cloth on the floor and then filled it with barbecued chicken, corn on the cob, potato salad, brownies and plenty of place settings for the other patients and support people who wanted to come by. She definitely perked up my hospital stay!

Other friends did unique things. One friend sent me reggae tapes for my Walkman. When the social worker came by, I think that she thought that I was listening to relaxation and imagery tapes, but NO! To me there is no better way to relax than to listen to reggae music and picture myself on a Caribbean island! Another friend imagined what it would be like for her to be in the hospital for three weeks and she thought about what she might need. Of all things, she thought of needing to have her legs shaved. She was exactly right, and came armed with a razor!

Most people who are in the position of wanting to support someone with cancer have never had cancer or been a support person for someone with cancer before. Also, everyone who has cancer has different needs and different ways they want to be treated. In other words, support people need our help. I think that it is our responsibility to guide our support people by putting our needs out and telling them how we would like to be treated. Perhaps if we help our support people, they can better help us.