Phoebe, younger and older
I have been living at Hesperus Village for several years now, and have heard many stories from older people about their youth and adult life. Although there may be regrets and a touch of sadness, there is usually an overriding feeling of warmth and gratitude for all their life experiences and special human relationships. For instance, I remember Phoebe speaking about her participation in the groundbreaking work of the brain surgeon Wilder Penfield, and how happy she was to have had this opportunity. Her expression in the photo above captures something of this highly refined emotion. (Watch the Hesperus video for some other stories. If you don’t have time for the whole 12 minutes, tune in for the conclusion at the 10-minute mark.)
It is for this reason that at Hesperus we sometimes speak of the fulfillment of old age. Aging is not an illness or a disease, but a ripening process with wonderful fruits. Expressions like aging with grace, dignity, success and so on, are well-intentioned, but stigmatizing. Let’s just call it AGING!
If we would just take a little time and listen to the old folks, we might discover that aging isn’t so bad after all – We might even learn…
How do you make a young doctor really understand what it’s like being 74? Virtual reality.
This is the theme of We Are Alfred. (See the full story and video here.) Young doctors experience a simulation of everyday events in the life of Alfred, a hypothetical older person with several sensory deficits. For instance, in the birthday party shown above, the participant experiences the effects of macular degeneration – and feels the disturbing emotional disconnections that come with it.
This project is a promising first step in developing empathy. Doctors become more sensitive to what is actually happening, and are in a much better position to help. Rather than jumping to conclusions about cognitive deficits or psychiatric disorders, they can begin to have real dialogue.
Still, much of medical education is designed to suppress empathy, so that doctors will be clinical and “objective.” Leading medical schools are slowly changing this attitude and ensuring that young doctors understand the need to engage with people. Our second story, an article in The Atlantic , describes a project at the University of Oklahoma College of Medicine. Before dissecting a cadaver, first-year med students are invited to meet the surviving family members. The story concludes:
Lunch was served sometime during the story and empty plates were cleared before the family finished their biography. When the story caught up with the present—ending with the donor willing her body to OU College of Medicine—the students sat for a moment in silence. “It was humbling,” Thurman recalled, “to think she was our first teacher.”
Recently, I read the book, The Art of Stillness: Adventures in Going Nowhere by Pico Iyer. Now, I am reading SIXTY – A Diary of my Sixty-First Year by Ian Brown. Iyer and Brown are similar in many respects: they both are excellent writers, global citizens and keen observers. Having said that, I would much prefer having Pico Iyer as a guest in my living room.
For Pico Iyer, physical and sensorial constraints actually provide stimulus for deeper insight and – adventure! Following the likes of Leonard Cohen, he turns simple, everyday moments into epiphanies. Ian Brown, on the other hand, seems fixated on the symptoms of physical aging, and says little about the tender spiritual impressions that aging brings. It seems there is nothing in sight but the end.
Much of modern healthcare and social services seems to be about caring for people – focusing on their needs, minimizing pain and waiting for the end. But what we really want to do is care about people and create many magic moments together. This is healing.
Note: Thanks to my old friend Cynthia Dann-Beardsley for inspiring the last paragraph of this post.
There is widespread advocacy and awareness for positive aging, and billions of dollars are raised annually to support this cause. Most of the money is spent by scientists and engineers who focus on eradication of diseases and/or relief of undesirable symptoms of aging.
We are making the case for shifting some of this money – even a small fraction of the total – to support transformational approaches (e.g. collaborative arts-based research programs). Such approaches not only lead to dramatic improvements in quality of life, but also enable people to be socially productive and creative while coping with their disabilities.
Hesperus Village is one inspiring example. I have collected some others using the Aging tag on the sidebar.
Collective disruption in action
It is widely known that success in the technology industry depends on the ability to disrupt markets and eliminate traditional competitors. The very concept of the “mature” industry is now obsolete – markets are in constant flux. Even large firms like IBM are continuously forming new partnerships and re-inventing themselves in the process.
Organizations that look after the needs of our elders, however, have been largely unaffected by this trend. Even high-end services have been commoditized. Wealthier seniors may have a longer list of menu options, but the basic system design is pre-determined. Will that be vanilla or chocolate, madam?
So, it was with great interest that I discovered Collective Disruption, a joint creative-research endeavour among health researchers and artists. Readers of this blog will know that several months ago I posted a video about their Cracked theatre production – creating a space to grapple with difficult questions. I finally got around to seeing a live performance in Hamilton yesterday. How refreshing to see researchers, actors and people affected by dementia collaborating with a playwright, and what a stirring result!
This group embodies our core value of prevailing personhood. In one scene from Cracked, a daughter comes to visit her mother, who now has advanced dementia. She is very hesitant to approach her, and says, She was my hero. The father, who is holding his wife in his arms says, She still is my hero. Nothing here is easy, comfortable or predictable – it’s all so inefficient. Still, the collective disruption of dementia brings everyone together on a new level of understanding.
Aloysius Alzheimer (1864 – 1915) would be astounded to learn that 100 years after his death, his surname has become a household word. Although “Alzheimer’s Disease” is often confused with normal brain aging and senility, it is a useful label, and focuses public attention on the needs and concerns of an aging population.
Yesterday (September 21) was Alzheimer’s Day, and two interesting links showed up on my Twitter feed. The first link was tweeted by Reza Moridi, Ontario Minister For Research and Innovation: Investing in brain research to improve the diagnosis & treatment of Alzheimer’s. From the News Release: This major investment is part of the province’s ongoing support to the Ontario Brain Institute (OBI). The not-for-profit research centre brings together multi-disciplinary, patient-centered research teams to make advances in neuroscience that improve the lives of those living with brain disorders.
The second tweet was from the Arts Health Network (AHN): How can the #Arts help with #Dementia? This group comes at the problem from a very different angle.. Instead of (or as well as) medical and pharmaceutical intervention, they state that the creative arts can be part of the solution. This approach is certainly much closer to the strategies described in this blog. Art activities do more than keep people busy. They build skills mastery, result in art products people can take pride in, foster a sense of self, create social networks, and much more.
Personally, I would like to see a greater proportion of available funding go to the second stream of activity. However, the AHN do not make a very good case. In fact, they rely on the same economic theory used by the big boys: the investments will pay for themselves in terms of increased workforce productivity. People today are so mesmerized by this mantra!. The whole point of engaging in the arts is to transform human lives. Instead of being needy patients, elders are empowered to renew and regenerate our culture.
Fix the brain, fix the person?
Here is an excellent example of the current Alzheimer’s fundraising campaign – very slick indeed. What is Alzheimer’s disease? The video strongly reinforces the notion that Alzheimer’s is a disease that can be attacked and cured. It is very sad that our leading scientists and researchers have adopted such a narrow, reductionist view of the human being.
Neuroscience and its associated technologies have an important supporting role to play as we improve our understanding of human aging. On this blog, I am featuring stories about people who are playing a leading role. What happens when we recognize and honour prevailing personhood, even in cases of cognitive decline? What new thresholds of human experience open up before us?
I have collected some of the relevant stories under the “dementia” tag. (See sidebar.)