My mother, who had a second heart attack when she was 73, lived with a debilitating chronic illness, congestive heart failure, for the last 13 years of her life. She died from complications from this disease Thursday, Oct 2. She had the first heart attack at age 60 and recovered completely. The second one left her in a state of constant fatigue.
I hadn’t planned to write about this – I wasn’t going to post until I could get my head back on my work. But then I realized that I write to help others who live with chronic illness. True – usually it’s about career. But in the end, it’s all the same stuff. It’s about how we “show up”.
I must admit that I struggled with the way my mother faced this illness and that was painful for me. I imagine, though, that I’m not alone in this experience. My clients tell me how difficult it is when others judge their behavior and decisions. I know what it’s like to be judged and be the judger and neither feels good.
My mom was a very successful professional (she was my role model!) who worked extremely hard her entire life at everything she did until life threatening disease transformed her. With this illness, she became housebound. She put all of her extraordinary will into finding a doctor who could cure her. Although she couldn’t admit it, she felt sorry for herself and that often left her feeling even more isolated her from others.
I share this because it was hard to watch my mother make choices that I found frustrating and alienating. I found myself judging her when she wouldn’t push herself to join family events. I became annoyed when she ignored suggestions that she stop going for tests that only tired her and led nowhere. I wanted to shake her when she responded to pain and fatigue with fear. I became distant and remote when she most needed my support.
Don’t get me wrong. I don’t “blame” myself for responding as I did – I honestly did the best I could do. Nor do I look for sympathy. This was a small burden in the scheme of things.
But my hunch is that that I’m not alone here – watching someone I love live with illness — and not agreeing with her choices. While she was alive, I wished I could do something to transform how she viewed herself and bring back her old determination and grit. I believed that her life could have been so much more in those last 13 years. We didn’t share that desire.
My mother’s response to illness — and now her death — has strengthened my resolve to live each moment, no matter how I feel, as if it really might be the last.
As Randy Pausch said in his interview with Diane Sawyer, his bucket list would include one thing: Time.
Please share — Do you have to remind yourself to live your life, in whatever way you can, even when you feel horrible? What do you do for yourself when others judge how you live your life with chronic illness? Or what is it like for you to judge how someone else lives a life with CI?
Rosalind aka cicoach.com