Why I Was Disappointed to Find Out I Didn’t Have Alzheimer’s

A close friend, blogger and author Carol Marsh recently wrote of her fear of a treatment that might alleviate the worst of the migraine headaches that have disabled her for years. She was scheduled to undergo the new treatment the following day and was noticing her anxiety and fear about the procedure: 

  • The possibility that she might have negative reactions to the medication,
  • The pain of the procedure itself,
  • Her disappointment if the treatment didn't work.

But she also noted another cause of her anxiety:

  • The fear that the treatment might work and relieve much of her pain.
  • If she were no longer disabled, could she, at 60, get a job after her disability check was cut off?
  • Others admire her for getting a university degree in Creative Writing while suffering almost constant pain. If she were no longer disabled, what would there be to admire?
  • She feels sometimes that her whole life has revolved around coping with her pain. What was she going to do as an able person?
  • Silly as it may sound, she even fears not getting enough sleep if she can't take to her bed anytime she feels tired.
  • If she's no longer disabled, who is she?

She well understands that her fears of getting well might seem ridiculous to most people. Nevertheless, they are real.

Those of you who have followed this blog for a while know that I've experienced similar difficult feelings while gradually learning that I didn't have Alzheimer's. I've written about it in previous posts (for instance, here) but never quite so clearly and succinctly as Carol has.

  • As a "professional Alzheimer's patient" with a popular blog and invitations to speak, I had a satisfying vocation that contributed to the well-being of others. I didn't want to give it up.
  • I had learned to let go of difficult tasks without feeling selfish.
  • My life-long anxiety about not doing enough lost its power over me.
  • I felt gratitude for my life, for my friends, for my community that I'd never felt before.
  • With that gratitude and with the security in my vocation, I'd become a nicer person.

How much of that would I lose?

I was relieved and grateful of course that I no longer had Alzheimer's. But my disappointment seemed often to outweigh my gratitude. I felt like a fraud who had duped interviewers, audiences and suffering people for my fame. I was no longer the person I had thought I was. Who was I?

We depend on our identities—including the painful ones—to order our lives, even to give them meaning. For the first half of my adult life, for instance, I suffered from untreated depression. I thought of myself as a "depressed person." Then new medication dispelled virtually all my depression. I was ecstatic without any sort of disappointment, not even a sliver…or so I thought.

Nevertheless, even after twenty years, I've never quite given up being a "depressed person." There were little benefits:

  • I had a ready excuse to decline social invitations I wouldn't have wanted anyway.
  • I could finally admit that I was unhappy as a doctor and give myself permission to leave the profession.
  • The reality of my depressions had become an important part of the lectures I gave.

In ways I didn't recognize then, I actually missed my depression.

Identity is a huge part of us. Even the painful threads of our identity haven been woven into the fabric of ourselves. Regardless of the pain a part of our identity has previously brought, we can understand and forgive ourselves for that little sliver of disappointment when we're forced to shape a new one.

An author and former physician, Dr. David Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment. His doctor thought it was Alzheimer's but additional testing proved this initial diagnosis to be wrong. Now David must learn how to come to terms with the reality of worsening cognitive issues that appear to have no cause.

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