Creatively transforming the patient experience (TEDMED 2014)

Kirsten_headshotKirsten Patrick is a deputy editor at CMAJ

 

Health care professionals need to learn to do more to encourage self-expression in healing.

Watching Friday’s TEDMED session entitled ‘Weird and Wonderful’ I was humbled by talks by two non-medics who have done wonderful creative things that have vastly improved the lives of patients.

First up was Bob Carey. I had never heard of Bob Carey before – WHY had I never heard of Bob Carey before? – so I was surprised to see a middle-aged man standing on the TEDMED stage in a pink tutu and nothing else. He said, “I’m a commercial photographer …and I have been photographing myself for over 20 years as a form of self-therapy because that’s what I do; when things get hard I go take pictures of myself…and it’s a lot cheaper than real therapy...” He transforms himself through photography into something that he is ‘not’ and that helps him to get out of himself, he says. In 2003 his wife, Linda, was diagnosed with an aggressive form of breast cancer and Bob started to take pictures of himself wearing a pink tutu in beautiful landscapes. What started out as a way of expressing his inner discomfort and difficult feelings and sharing his wife’s experience, grew, through self-publication of a book, into the Tutu Project.

As Bob showed a montage of his exquisite, beautifully composed, funny images, all featuring himself in a pink tutu, I realized that for each and every patient and loved-one there is a unique way in which healing can be experienced and enhanced.

Sophie De Oliveira Barata, introduced as ‘an artist who works in Medicine and a sculptress of the human spirit’, reinforced this idea for me. Sophie makes the aesthetic part of prosthetic limbs for a living. That’s pretty special in itself but what Sophie does is insanely brilliant. She explained that after a long time making realistic looking prosthetic limbs for people she began to understand that, no matter how realistic she made them, most people never felt that the limb was a part of them. One client was a small girl who required a new leg at intervals as she grew. Once she asked for a leg that had a Peppa pig cartoon on it. The next leg she had was covered with a montage of family photographs. The leg became a talking point, a self-expression, rather than just a limb. The next time the little girl came to see Sophie she had a drawing of the next leg she wanted – it was to have a number of drawers in it for stationary and special things.

Somewhere along the line, Sophie began the alternative limb project and now at least 10% of her clients request a non-real-looking artificial limb. She has made a ‘retro-futuristic’ leg for Viktoria Modesta, the model and musician, a ‘cyborg leg’ with secret compartments for Veronika Pete who lost her leg in a London cycling accident, and highly personalised limbs for many others. She has changed the possibilities for people with prosthetic limbs forever, and I hope that many will follow her in her craft.

This blog post disappoints with its lack of photographs, I know, but I didn’t feel comfortable about sneaking the work of these wonderful creative. Do click on the links embedded.

Bearing in mind the individual experiences of patients when they are diagnosed with and must undergo treatment for an illness, CMAJ Blogs is going to start a Patient blog category very soon. Our first patient blogger is Peggy Cumming, a wife, mother, grandmother of 6, sister, niece, cousin, friend, retired teacher, and an athlete currently in training for major surgery. She has her own photoblog, the F-stops here, where she posts a photograph every day.

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