Making life meaningful despite a debilitating disease

I worked with Joe over a year ago and now he returned to see me with a new problem. He had just been diagnosed with a rare degenerative disorder that would eventually rob him of the use of his limbs as his muscles weakened over time. Joe wanted to talk about how he could prepare himself for this decline.

Joe is in his sixties and has worked in high tech for a long time. He loves it. A bit of an extrovert, he loves going to work every day with younger people who are smart, capable, and fun. He has a mentorship role with several of these co-workers that he really enjoys. And he loves to sit at his computer and solve difficult software problems as his fingers fly over the keyboard.

“What am I going to do in a few years when I can’t use my hands anymore?” Joe asked me. “And I won’t be able to drive to work. I’ll most likely be in a wheelchair . . . what then?”

 Does resiliency fit with chronic illness?

I had pondered these very questions after Joe emailed me to ask for an appointment, explaining about the newly-diagnosed degenerative disorder in his message. I thought about my tenets of developing resiliency: acceptance, build a support system, gain perspective, see what is to be learned, and find the gifts in the moment. These fit well for someone who is overcoming temporary adversity, I thought, but what about someone with a chronic condition? And now, with Joe in my office, what about someone who just became aware that he has a chronic condition?

And then, as I’ve experienced so often in the therapy setting, Joe answered his own question and some of my own as well.

 A new mission, a new meaning

“I can imagine,” he began, “that someday I’ll be sitting in a wheelchair in an assisted living facility. I won’t be able to move very much but my mind will still be active.” He looked up at the ceiling as he leaned back in his chair. “I think I’ll just have to develop a new mission statement for myself, a new way to make life meaningful for me.”

I was beyond moved by Joe’s response. I was really expecting him to bemoan his fate and anticipate a difficult life with disability. That’s what most of us would do. Instead, Joe combined his inner scientist’s discipline with his own optimistic personality and immediately moved into acceptance and perspective mode. He accepted what this disorder would eventually do to him and sought a new way to look at what his life would be about. And, in so doing, Joe found hope.

Will Joe always be upbeat and optimistic about his physical condition? My guess is he’ll have some pretty rough struggles along the way. But we’re already talking about his new mission statement. The disorder isn’t going to affect his ability to talk, so we’ve been discussing ways he can still mentor others and be involved in the career he loves.

Making life meaningful. Isn’t this what resiliency is all about?

Bobbi Emel is a psychotherapist who blogs at Bounce Blog.

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  • http://www.howtobesick.com Toni Bernhard

    I was very moved by Joe’s comment: it’s time to develop a new mission statement. I had to do that too, although I’d never put it into words as strong as Joe has. I had to give up my career as a university professor due to chronic illness. It took many years of denial and bitterness to reach a place of acceptance.

    Then I found my new mission: I wrote a book about living well with chronic illness. The experience has given me a new life, one in which I’m able to help so many people. I’m not quite to the point of saying, “I’m glad I got sick”…but I come close on some days because just as Joe talked about, my life has become meaningful again. 

    Thanks for sharing Joe’s story and giving me a new way to think about my own new life.

    Toni Bernhard

    • http://twitter.com/BobbiEmel Bobbi Emel

      Toni, thanks so much for your comment. And what a thrill to have you respond as I have your book and it is next up on my reading list! I am so looking forward to reading it and sharing with my blog readers your own experience and your words of wisdom (and Buddha’s!)

      Thanks so much,
      Bobbi Emel

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