CRPS, or Complex Regional Pain Syndrome (Type 1), is a change in the nervous system that's usually triggered by a very painful episode. The bad kinds affect the brain, nerves, muscles, skin, metabolism, circulation, and fight-or-flight response. Lucky me; that's what I've got. ... But life is still inherently good (or I don't know when to quit; either way) and, good or not, life still goes on.

Wednesday, July 13, 2011

Beyond courage & compassion

Here is a link to an article I once would have found moving and relevant to my nursing practice:

Courage and Compassion

The central idea is that the writer is dealing with an Ivy Leaguer with early dementia, who does the usual things of declaring that it's "not that bad" even as her mind shatters piecemeal. The writer is trying to figure out how to be a good therapist while trying not to panic at the thought that it could happen to her. She looks for her answer in Buddhism, which is not a bad start.

I wrote a response which seemed too long to go through the web page's comment function. I thought it over, and decided to post these ideas here, since this is the quintessence of learning how to live with the unbearable.

For several reasons -- including being wildly overmedicated on antidepressants -- I've gone back and forth across this line of intellectual capacity and incoherence. Since my central nervous system is still compromised, I will inevitably go back across that line again, if I live long enough. (Sadly, science focuses on the pain of my condition rather than the impaired function. As far as I can tell, the scientific subculture in psychiatric medicine has absolutely no regard for intellectual capacity in its patients, considering intelligence disposable -- when it's mentioned at all.)

There is another reason why this writer's patients tell themselves it's not that bad. Like most of those with an acquired disability, they find that there is more to life than they imagined, and that functioning with an impairment in an aspect of life they once considered essential, has opened up their minds -- and their hearts -- to aspects of life they never realized they valued so much.

This newly-demented woman is still loved. Her survival is still assured -- to the extent one can say that in this world. Even though she lived all those years depending so heavily on her intellectual capacity, there comes a time, when everything is swept away and every characteristic you thought defined your "self" is gone, when you realize that something is still standing there, asking the question, "Who -- or what -- am I?"

Our ideas of who we are, are, I suspect, an essential part of samsara, or the world of illusion. I know that, whatever happens to me, the answer to the question of identity is both eternally answered and perfectly unanswerable.

In the end, it may be that we find we don't need those illusions. If I didn't have to struggle to survive, if I had a spouse and children and insurance, functioning without my intellect would have been immeasurably easier. When I lose it again, I have no idea what I'm going to do. However, I have a pretty good idea which of my friends will be able to stay with me on that journey. The past few years have been enlightening in that respect.

Suffering is, by definition, a willful engagement in the anguish of life. I find that it soon loses its charm. Is it more useful to struggle with the engagement of my ego, or to turn my attention to what works -- the love in my life, the warmth of the sun, the value of the moment, the puzzle of doing the very next task?

Losing my mind was a stunning lesson in the fact that it's not about my limited and ego-driven ideas of myself. It was a door to perceiving what really fills my world, what lies beyond my expectations and beyond my uniquely limited understanding. Through her work with these people, this writer may have the privilege of discovering that, without having to pay the savage price that most of us have to pay for that understanding.

She writes with desperate fear of facing this herself, but this opportunity could be the gift that insulates her from the very devastation she fears, even if it does happen.

We humans are driven to comfort as the sparks fly upward, but there are times when it makes sense to turn your back on present comfort to ensure your future safety. Her fear won't ease until it's dealt with, as this issue is part of her work.

As for me, it's time to go meditate. I intend to weather my future well, regardless of how little intelligence I can bring to bear at any given moment.


  1. This is such a deep piece that I've had to read it a couple of times. Who am I? is still a question I ask myself on an almost daily basis. Also - what does it mean to be me?.

    Your mind is so particularly clear, bright, flexible. You are so informed but at the same time so fresh. I cannot imagine your mind crumbling. It's a terrible thought

  2. This comment has been removed by the author.

  3. I'm touched. Thanks.

    It's not so bad ... :)


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