Spirituality ... Attitude
I Am Different: Illness-based Identity
by Stan Goldberg, Ph.D. - Living, Caregiving, Dying, and Recovering Joy
How we view ourselves—our identity—is based on what we do, the roles we play, activities we enjoy, affiliations we have, the values that structure our lives, our abilities, and relationships. When a meaningful part of a loved one’s life is lost, their self-perception and place in the world may change.
Losing something that gave meaning to life is often a bi-product of chronic and terminal illnesses. It can be the daily jog for someone who has run for forty years, the loss of hearing for someone who played the cello her entire life, or the gradual memory loss of a writer who spent his days in front on a computer crafting short stories.
Most people can look at these losses and understand how devastating they are. But what about something like the inability to knit for someone with crippling rheumatoid arthritis? Or the inability to read the morning newspaper over a cup of coffee as eyesight diminishes?
Unfortunately, the magnitude of a loss is often thought of in terms of someone else’s sense of what’s important. An active person might think that no longer being able to walk is tragic, but the inability to knit inconsequential. Yet for someone with rheumatoid arthritis whose entire life centered on knitting, the loss is far more devastating then being unable to walk. Many chronic and most terminal illnesses result in life-changing losses. The ability to knit, run, walk, write, or converse may disappear, but its memory is constantly present, sometimes acting as a slap in the face when it’s seen in other people.
Caregivers try to be supportive by presenting “but look” arguments. “Yes, I know you can’t jog anymore, but look at what you’re still able to do.” But how convincing can that argument be when the activity or ability that was lost was a central feature of a person’s life? Ask anyone who has had a significant loss in their life what they think about “but look” propositions. The head knows that it makes sense to relish what they’re still capable of doing, but the heart mourns the loss.
We get enjoyment and fulfillment, not from the thing or activity itself, but rather from the emotions it stirs in us. For example, I did solo wilderness fly-fishing throughout my adult life. It was the most enjoyable activity I ever did. When I no longer was able to do it because of my cancer treatments and a chronic sleep disorder, I mourned its loss as if it was a loved one who died.
My head knew that I was fortunate that one group of medications was containing the cancer and another was allowing me to sleep. And not going into the wilderness alone was a small price to pay for sleep and life. But my heart still longed for it. I eventually realized that it wasn’t the act of fishing in the middle of a pristine river that I missed, it was the serenity I felt being there. When I realized that, I sought other activities that could engender the same or similar feelings. I found it in playing various wooden flutes. Was it the same? Not really. But it allowed me to partially fill that pothole.
When your loved one laments about losing something that was of great importance, avoid using a “but look” response. The remorse they’re expressing is coming from their heart and it needs a heart response rather than a head one. Instead, begin exploring what it was about the activity that made it so important in their life. Once the emotions have been identified, jointly think about what other activities may generate ones that are similar. Often the answers are found in very different activities, as it was with my substituting playing and crafting flutes for wilderness fly-fishing.
As your loved one’s illness progresses, you’ll find that what works today may not work tomorrow. Look for something that may be do-able throughout their disease progression. If both of you realize that what they have chosen will only be possible for a short period of time, still do it, but think about what can substitute for it. For example, an ALS patient I served loved ambling through Golden Gate Park in San Francisco. He lived only a few blocks away and would spend hours there every day before he was diagnosed. As the disease progressed and he no longer could walk, I would take them to the Rose Garden each week in his wheelchair. When he was confined to a bed, people who visited would come with a flower they picked from the park.
Any loss that a loved one maintains is substantial, by definition, is. Accept it as valid and jointly explore substitutes. Chronic and terminal illnesses are rarely stable. As they progress, your loved ones’ identity will continue to evolve. Hoping that the person you knew before the illness is the same person who has lost meaningful parts of their life may be a wonderful spiritual ideal, but it’s rarely comforting to the person who has suffered the loss.
