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.

23 Responses

  1. Ronee

    A big problem beautifully stated! Sadly,few people will learn this important lesson which you outlined. If only there was a course, like a Blueprint for Living,taught in highschool!

    Reply
    • Stan Goldberg

      Hi Ronee,

      Thanks for the kind words. As my mother would say as she looked to the heavens, “From your mouth to his ear!” Accepting that a love done is changing is difficult.

      Take Care,
      Stan

      Reply
  2. Roberto Carlo Chiesa

    Without a doubt the truth is heartfelt in your words. It is understanding with your heart that can make such a difference in someones life and yours as well. I found this to be so very true while losing my sister to Alzheimer’s. I did not lose all of her. I did not lose her heart and soul where I believe she was alive and well.

    Reply
  3. Gatfly

    Wow. I feel like I’ve been reprimanded. In a good way, mind you. My Dad has had a couple of bigger strokes and they have left him with limited vision and balance problems that require he use a walker to get around. I am now looking forward to having the opportunity to sit down with him and explore HIS feelings about the things that he has “lost”. Thank you!

    Reply
    • Stan Goldberg

      Hi Gatfly,
      You don’t need to feel reprimanded. I’ve found that it’s very difficult for people who are healthy to understand what someone with a chronic or terminal illness feels. But you’ve found the right solution–siting down with your Dad.

      Take Care,
      Stan

      Reply
  4. Apryl

    Dear Stan,
    I’ve just discovered your blog on Twitter and I’ve spent the past hour reading some of your entries. I’ve been finding your work very insightful and helpful. I have been developing an awareness of this issue recently due to a project involving vulnerable older people.
    Apryl

    Reply
  5. Holly

    Some, maybe all, mental illnesses fit here too. We know we are different, we will never “really” belong anywhere, but still long for acceptance. The Vet who lost his leg, you can see and imagine his pain. The woman going blind, you can close your eves and get a feel for her loss. How do you have compassion for the addict, how do you have compassion for the anorexic girl? We are a separate and different group, defined by illness based identity. sad

    Reply
    • Stan Goldberg

      Hi Holly,
      Much wisdom in your thoughts. The acceptance of “different” I think is one of the biggest problems we as a society (world?) faces. Unfortunately, it’s something as old we life.

      Reply
  6. Matt Ellefson

    Nicely written Stan! I can certainly relate…..I worked my way back to running and have been blessed to help others. What a wonderful gift my cancer has been.

    Reply
    • Stan Goldberg

      Thanks for your kind words Matt. Although I’ve learned much from my cancer, I would have preferred the lessons to come for a codgidy old uncle. But that’s life!

      Take Care,
      Stan

      Reply
  7. Charles (Chuck) Maack

    Ah, Stan, you are so blessed with just the right thought processes that you can then put into words for all to both ponder and understand. Thank you for being a bright light for many who may otherwise feel themselves lost in the shadows.

    Reply
    • Stan Goldberg

      Hi Chuck,

      I’m honored and humbled by your words. You’ve been a blessing to those of us who share a common illness with you.

      Take Care,
      Stan

      Reply
  8. Alan Meyer

    Great article Stan.

    I have also thought a lot about this problem, but I understand it a whole lot better now after reading your article.

    Thanks.

    Alan

    Reply
  9. Alan Meyer

    That was very perceptive and very well written. Thank you.

    I think another component of the problem, “When a meaningful part of a loved one’s life is lost, their self-perception and place in the world may change”, has to do with isolation.

    When a person loses his ability to get an erection, or loses continence, or loses his ability to do something else that he’s had all his life and taken for granted, he often imagines that he’s alone, isolated, different from every other person. He may see other people as living in a different world from him, a world that he once inhabited but is now excluded from. He feels that normal people don’t understand him and, if his debility id apparent, pity him and think of him as different and smaller than he was.

    Instead of talking about his cancer or his side effects, he may avoid the subject in order to avoid calling attention to his self-perceived inferiority. His friends and loved ones, instead of inquiring about him, also avoid the subject in order to avoid making him feel bad – which often has the exact opposite effect of what they intend.

    If you are the person affected, a partial solution to the problem that I think can help a lot is to talk openly to close friends. Tell them your situation. Encourage them to ask questions. Show them that you’re not avoiding them or hiding from their questions. And then, to your surprise, you may very well find that the open discussion brings you back into the world of others and invites them into your world and the isolation is much reduced.

    Reply
    • Stan Goldberg

      Hi Alan,

      Thanks for the kind words, and I agree with the problem of loneliness. After I wrote my book on hospice I spoke to many groups whose members had life-threatening illnesses, including prostate cancer. And I found the need to share their feelings with others experiencing the same problems was universal. But I found two different attitudes regarding their conditions. Attitudes of despair and hope weren’t necessarily based on the toll prostate cancer had on the men and their families. One man who knew he had only a limited amount of time to live wanted to become a hospice volunteer and give back to the community. Another whose prostatectomy was very successful and only slightly reduced his ability to have an erection, was clinically depressed.

      The adjustment to a new life seemed to be related to the willingness to move on. And what I observed was a key to that involved the orientation of the group, which was often determined by the group leader.

      Reply

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