Friday, March 1, 2013


I have made allusions several times on the blog about the strange subjective experience of slowly losing control of my arm, hand, and fingers. I am particularly fascinated by the 'freezing' I experience sometimes, in which I attempt to lift my hand from what it's doing and it just doesn't want to go along. I have to put effort, even focus or concentration into getting it to move. This to such a degree that I have to pause whatever else my brain is doing (including talking or thinking) to get things going. I must confess sometimes when no one else is around, I will just grab it with my other hand and actually move it.

I describe it this way to emphasize that sometimes movement for me requires mental effort as opposed to physical effort. For many people, particularly older folks, P advances to such a degree that it takes all the focused will they can muster to move a few steps. Someday in the distant future that may be me. I am able to reflect on this, and observe this, yet I cannot achieve mastery over it.

It may seem like a leap, but this causes me to reflect on what it's like to be trapped inside a mind gone rogue. As one begins to lose one's ability to interact with the world, as one's faculties for clear perception and cognition are stripped away, what remains? What fearful and lonely shreds of humanity pulse within the core of a mind fogged by mental illness?

I read one painfully honest view of this question from an anonymous Harvard student grappling with schizophrenia, published in the Harvard Crimson this week. The piece touches on many issues that relate to our treatment and views of the mentally ill, but I took special note of the following quote:
"What they never tell you about schizophrenia is that you never really believe it, internalize it, identify with it. Mornings are agonizing because every day in the haze of waking up I briefly remember all over again who I am and what I have lost. I remember the friends that I am terrified will see me differently if I tell them; I remember that on my bad days I scare people in class and on the subway; I remember that the academic career for which I had worked is now improbable. I remember that the measure of success for too many of my days will be that I have not killed myself."
This belies the common view of the mentally ill as delirious and unaware, and is very sad to me. It makes me also think of my grandmother, who for many years has suffered from Alzheimer's disease. She frequently evinces confusion about where she is and when she is and who the people around her are. She lashes out and says unspeakably hurtful things to family members. It is very painful to watch, but what about to experience? I imagine maybe somewhere in there is my grandmother, and maybe she's scared.

Is it all in that pretty little head of yours? 
What goes on in that place in the dark? 
Well I used to know a girl and I could have sworn 
That her name was Veronica 

Well she used to have a carefree mind of her own
And a delicate look in her eye 
These days I'm afraid she's not even sure 
 If her name is Veronica


  1. I wanted to post a comment so you know that you're being read and heard and felt.

    I read that article and it made me sad and angry. Then I read the 'women in science' highlight by Nature and, weirdly, it struck me similarly. (It's a strained comparison, but I can't help but feel there's a tangential thread to the subjects. Perhaps it's the notion that you have to do *more* while saying *less*. Or that you have to be a total rockstar and never publicly let on about whatever difficulties one faces...) It's hard to pinpoint, but the notion that a given researcher has to walk a steeper path but can't speak of it in any negative light seems to underlie much of the academic lifestyle.

    When I cross my right leg over my left, I have to pick it up with both hands and drag it. I doubt anyone notices.

    1. ps/addendum...

      Not trying to equate or minimize anything. I can only post about what I know, and what I know is a vastly different situation. But thanks again for both your insight and a place to scatter a few thoughts. If they're inappropriate in even the slightest way, I understand.

    2. Oh no not at all. I felt your comments were really thought provoking and I think I get exactly the comparison you were making between my situation, your situation, the Harvard guy's situation, and anyone who has a tougher row to hoe in science or life generally. One reason I feel inhibited from telling people is that I don't want to be perceived as whining or seeking pity. I think that's similar to what you were getting at right

      Keep your comments coming! I had meant to respond. Also if you ever want to commisserate, feel free to email me at :)

    3. Thanks! I'm not sure I quite have the courage to reach out to anyone yet (why is that? even anonymously I feel the edge of panic, and yet at the same time feel weak for feeling it...) but thanks so much for the insight and response. :)

    4. I understand but I'm always here if you want to talk. Did you see the tweet I wrote the other day? That was intended for you :)

    5. I just did, and thanks VERY MUCH! Knowing one isn't alone is powerful. (apologies for the delay...things get lost in the twits sometimes...)