We are giving away a copy of Leaning Into Sharp Points: Practical Guidance and Nurturing Support for Caregivers by Stan Goldberg. Check out this excerpt from the book, and then leave a comment for a chance to win your own copy of this book!
When Loved Ones Must Redefine Themselves
By Stan Goldberg, PhD
How we view ourselves — our identity — is based on what we do, the roles we play, the activities we enjoy, our affiliations, our abilities, our relationships, and the values that structure our lives, to mention only some of the multitude of things that constitute identity. All these in combination are used by loved ones to create a picture of who they are, and by other people as they anticipate reacting to them. When an integral part of a loved one’s identity changes, so does her self-perception and place in the world.
Accept Feelings of Loss
Losing something that gives meaning to life is often a by-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 has played the cello her entire life, or the gradual memory loss of a writer who has 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 experienced by someone with crippling rheumatoid arthritis? Or the inability to read the morning newspaper over a cup of coffee as one’s 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, and 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. People’s ability to knit, run, walk, write, or converse may disappear, but memories of these things remain constantly present, sometimes acting as slaps in the face when ailing individuals see others doing such things.
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.” How convincing can that argument be when the activity or ability now lost was a central feature of a person’s life? Ask anyone who has undergone a significant loss what she thinks about “but look” propositions. The head knows that it makes sense to relish what one is still capable of doing, but the heart mourns the loss.
We get enjoyment and fulfillment not from the thing, activity, or person itself but 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 my cancer treatments and a chronic sleep disorder prevented me from continuing that pursuit, I mourned its loss as if it were 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 to go. 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 a similar feeling. I found it in playing and crafting wooden flutes. Was it the same? Not really. But it allowed me to partially fill that pothole.
When your loved one laments the loss of something important, avoid using a “but look” response. The regret he’s expressing is coming from the heart, and it needs a heart response. Begin exploring what made that activity so important in his life. Once the emotions have been identified, jointly think about what other activities may generate similar ones. Often the answer is found in very different activities, like when I found that playing and crafting flutes would substitute for wilderness fly-fishing.
As your loved one’s illness progresses, you may find that what works today will not work tomorrow. Look for something that may be do-able throughout his disease progression. If both of you realize that what he has chosen will be possible for only a short period of time, still do it, but think about what can substitute for it at a later point. For example, an ALS patient I served loved ambling through Golden Gate Park in San Francisco. He lived only a few blocks away and, before he was diagnosed, spent hours there every day. As the disease progressed and he no longer could walk, I would take him 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 tells you is substantial, by definition is. Accept it as so and jointly explore substitutes.
Stan Goldberg’s Lessons for the Living won the London Book Festival’s Grand Prize in 2009 and was featured in Best Buddhist Writing of 2010. A private therapist, clinical researcher, and former San Francisco State University professor, he lives in San Francisco. He was named Hospice Volunteer Association’s Volunteer of the Year 2009 and his website is www.StanGoldbergWriter.com.
Excerpted from the book Leaning Into Sharp Points: Practical Guidance and Nurturing Support for Caregivers © 2012 by Stan Goldberg. Printed with permission from New World Library.
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