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If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiography and all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Monday, August 04, 2014

Disappointment

Washington DC

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.

6 comments:

  1. I completely understand, but from a different perspective. I was married for 9 years to an abusive alcoholic jerk. He had two daughters diagnosed as antisocial personality disorder, and I really believed he had it too. But of course, "There's nothing wrong with ME, you know." All I wanted in those 9 years was for him to quit drinking, quit being so abusive, maybe I could help him and make him happy (the old nurse thing), etc. So when he got a DUI , to prevent a jail sentence, he started AA and started taking antabuse. And to my amazement, I found that I missed the abuse cycle that we'd been on. When he was drunk he was horrid, I was miserable, I swore that I'd leave tomorrow, that this was no way to live. Well, in the morning, when he was hungover, he was so apologetic and sorry. And I realized after he was on antabuse that what I missed was that I found I was in control in the apologetic part of the cycle. I could forgive him or be angry and he'd just follow along apologizing. I was all powerful, until the vicious cycle would begin again. And he was a dry drunk on antabuse and a horrible drunk when not on it. But even tho I didn't control any of the abuse part of the cycle, I was the boss on the second day. And I didn't start healing and get away until I realized I just didn't care about being the boss on the apology days. And I moved out. My identity had been to make him happy, keep the kids quiet, put up with his crapola, then be the boss on the next day. Its a great feel of control and power to be on the good part of the cycle. But then, of course, the cycle would begin to start again.

    I learned that I cannot be responsible for another person's happiness. That one must be either happy or angry in their own soul. Of course, I could help. I'm a nurse. i have comforted people in a lot worse situation than that. Until I learned that you can't make someone happy that cannot be MADE happy.

    Our identities are a large part of us. Just as a breast cancer survivor with a mastectomy scar, that is a huge change in their identity. I saw a woman a few days ago at the cancer run walk, with a T shirt on that said, "Of course, these are fake. The real ones tried to kill me!" haha

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    1. Thank you Lee Ann. So often it’s easier to hold on to the negative things because we’re used to them rather than to go through the personal change necessary to move on to better things. Being human seems to take a lot of courage.

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  2. Thank you for this blog, David. It absolutely spoke to my heart. May peace be with you.

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  3. JenJen108/05/2014

    Thank you for pointing this out.

    Recently I was reading about poverty & welfare & people on disability not wanting to work because they were afraid if they earn too much the gov will cut off all they get & then they'll be in worse shape than if they don't try to work. I think people get into the same condition you're describing when they're in poverty. Poverty is a disability. It affects people like a physical illness does. It changes you. And I think some people are so used to it they can't understand how to function outside of poverty. It's part of their identity. They've based all their life around it.

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    Replies
    1. Welfare has changed considerably since Welfare Reform in 1996. Most programs no longer penalize work but are gradually phased out so that there is no disincentive to work. The most important program for the poor is the Earned Income Tax Credit, which actually rewards work.
      In my thirty years of working in the inner city of Washington my experience is that the vast majority of poor people want to work. Indeed, the majority DOES work; there is no way to survive on welfare payments alone. But if you’re earning minimum wage and have one child, you’re already under the poverty line … and that’s assuming you work full time, and most jobs for the poor are not full time.
      There are, of course, people who don’t want to work but that accounts for only a minuscule number of the poor.

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  4. Your honesty in this post is touching and many of us can relate to that, I'm sure. Who am I? That is a question we ask ourselves all our lives, I think. Right now, I am in a place where I need to decide which road to take and how it will affect who I am. I enjoy your writing very much.

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