For nearly two decades, I have listened as patients describe what it is like to live in a body that failed them. I have heard it all: the impact of strokes—which leave the body paralyzed and unwilling to do what the brain wants; arthritis—which makes every movement painful; the ominous terror of having heart disease and the potential of having a heart attack—will someone find them in time? I have also heard a number of stories about all of the common, weird and disturbing autoimmune diseases that seem to attack people for no reason. Most people express the wrenching questions, “Why does my body not work? Why is my body attacking me?”
Throughout all of these years and stories I am privileged to hear, I prided myself on being a good listener. I imagined what it must feel like to have a limited body with even more restricted function. I thought I got it.
Recently, as part of a course on working with geriatric patients through the University of California, San Francisco, I realized that I don’t get it. My classmates and I had a number of experiential exercises, which were meant to simulate a variety of illnesses. If you have ever been a part of a continuing education course, you likely know that some exercises described as “experiential” can suffer from being clichéd.
But then the following happened:
First, all of us were instructed to place earplugs in our ears. Following that, we were instructed to put popcorn kernels in our shoes. Right from the start, we were supposed to imagine being hearing impaired with simulated peripheral neuropathy in our feet. In case you are among the more rational in the world, you likely have not tried putting unpopped corn in your shoes. Walking with corn kernels in your shoes hurts—a lot. This was just the beginning.
We started with a mobility experience. In addition to not being able to hear much or walk well, we were instructed to wear gloves that would also simulate neuropathy (numbing), in our hands. We were given bands to place around our ankles, to mimic impaired walking. Finally, we were given glasses that simulate all of the various eye problems that can occur with aging and illness. My glasses seemed more benign than what my colleagues were wearing; I had no peripheral vision—a common problem of old age and elderly eyes.
I thought to myself, “I can do this.”
Then, given a cane, I was asked to walk down the hall. It was maybe 100 feet. I was pretending to be an elder with impaired hearing and vision, bad mobility and numbness in my hands and pain in my feet. I realized that I was not sure that I could actualy complete the walk down the hall. Suddenly, my class exercise did not feel like a game. I started to panic. From the loss of peripheral vision, I could not see who was standing next to me, and I started to feel suspicious. As I walked, I had a lovely young woman at my side (I was lucky, she is a physical therapist in real life), who could help me if I needed it. I did not want help however; I wanted out of my body, which felt trapped, alone, and isolated. Weirdly, even though we were pretending, I felt mad at my companion, who had a body that worked so much better than mine.
It was at this moment I understood something in a way that I never have before. I thought, I might kill myself if I had to live this way.
I thought I appreciated the sentiment of suicidal ideation before among my elder patients. I realized that I had no clue what some of my patients really feel.
In many ways, I still don’t.
Growing older scares us for a variety of reasons. Some of us can’t imagine being dependent. Others just want to be able to exercise like we did when we were twenty. For me, pain and sensory impairment just seemed like it would take away everything that matters to me—connecting with people I love as well as my value on being independent.
Suicide among the elderly and ill is a very real risk. For reasons we don’t fully understand, but likely related to my impressions of old age based on my class exercise, older adutls are committing suicide in increasingly larger numbers. We should be worried, really worried, about what this trend means. We need to find a way to take better care of our elders.
We live in a manic culture in which we are supposed to embrace the victory of a long life. It is as if the world says, “Be Happy! You might live to be 100!” Yet, living to 100 might encompass a private, as well as public misery. Living a long life is rarely a guarantee of a life without pain and disability. Our elders, the people who are forging a new frontier in the vast experiment in longevity and increasing life spans deserve our support, now more than ever.