Thursday, December 17, 1987

KBOO 17 December 1987

‘I had to restrain my wife from hurling a can of beans at this woman in the supermarket,’ he said. He had been following her around and staring at her.

This was just one remark that stayed with me after watching a British television program about the problems facing people who are disfigured. The wife had lost half her palate and all the tissue between that and the bottom of her forehead through surgery to remove a cancer growth. Not everyone, of course, had treated her in the same insensitive manner as the woman in the supermarket. But the experience does show the pressures on those in our society who look different. In this case the wife had, as the interviewer said, turned a personal disaster into some sort of success, which is what I want to tell you about.

Disfigurement today is caused principally by road accidents, burns and surgery. Whereas in the past many more people in extreme situations would have died, today sophisticated surgery can save them and often rehabilitate them with surgery and spare parts. But until recently the psychological problems created in the lives of such patients have been largely overlooked. The reason we may not see many disfigured people around is not that they do not exist in larger numbers but because they often shun society because of the strain involved.

A year ago we were visited by a remarkable lady, Betsy Wilson, from New England. She is so outgoing that you scarcely realize that she had to have her jawbone replaced because of cancer. A teacher, a mother of three grown-up children, Betsy has written on how hospitals can give better care and support to the young and the aged. She told us of her desire to create a national support group for people like her.

Last week I received from her Volume 1 Number 1 of ‘Let’s Face It’, a newsletter of the ‘Network for the facially disfigured,’ and in it the news that she is Executive Director of a non-profit organization of the same name that is beginning to establish itself in New England and that she hopes in June 1988 to go national.

It is an inspiring story. Three years ago she read a book, ‘Let’s Face It,’ by a woman in England, Christine Piff, which documented her experience of losing her left eye and palate to cancer. ‘It made me realize for the first time,’ says Betsy, ‘that I wanted to talk with others who had dealt with life after facial surgery.’

The TV program I mentioned at the beginning was about Christine Piff. On television Christine launched a support organization not knowing what the reaction would be. Within four weeks she had received 500 letters. ‘It was like lifting the lid from a boiling pan and letting out so much anguish, despair and complete frustration,’ she says. Today she has ten regional monthly meetings around Britain and groups growing in many countries, and her book has been reprinted in an edition of 25,000.

Betsy was so struck with the story that she went to England to meet with Christine, and over a pub lunch struck an immediate rapport as they compared their experiences. She could understand well Christine’s feelings during surgery that she would have appreciated someone to share her experience with and learn how to cope with life. And her feeing, as she puts it, that there was no one there. She understood the need to help create more caring families, more sensitive hospital staff, the right follow-up from surgeons. And she returned home determined to follow Christine’s example.

In Betsy’s newsletter there are greetings from Christine, who writes, ‘May you flourish and grow, giving support to so many people who desperately need it. In helping others, they will help themselves, as I have done, living a richer and happier life than ever before.’ There are also articles about ‘resources for recovery’ ranging from the nursing perspective to laughter therapy, from the problems of eating to the perspective of a teenager,

Betsy has already had moving responses from many people in similar situations, lie a former Chief Justice from Florida whose entire jaw was removed through cancer, and a woman in Albuquerque who writes, wanting to start a ‘Let’s Face It’ group there: ‘I am so excited about your group. I felt somewhat isolated from the rest of humanity most of my life.’

Such people have had their appearances altered, as one person said on the TV program, but have not let it alter their lives. They are disfigured but not disheartened. They are learning to use appropriate cosmetics, improving their appearances. But above all they have learned to improve their attitudes. Perhaps they will be used to help us improve some of ours.