Sunday, December 28, 2014

When Guilt Dances with Despair

I was moved yesterday when I read my friend Carolyn's short post Presuming Competence about what she's doing with her son Ben these days. I was moved, and I also felt familiar twinges of guilt. Many years ago, I took Sophie to see the acclaimed Soma in Austin, Texas, and while Sophie responded somewhat to her techniques, seizures and crisis got in the way, at first, of follow-up, and then I just




Some people claim that there's no use for guilt, and as a former Catholic, I understand that in part, but I disagree, too. Guilt plays on the edges of Despair, prods me into changing something, interrupts the terrible partnership of Despair and its lover, Paralysis.

If all I ever do is read to him, discuss things with him, teach and give him a chance to offer feedback through choices written on paper, it  still opens his world much wider than it's ever been. It's too easy to leave him alone to stim with his objects of choice, like his shiny crinkle paper, and not engage with him. There's a time and place for those things, but they shouldn't be all of his life.

This morning, I spent more time than I usually do with Sophie, talking to her, playing with her and then climbing into bed with her and opening up a large-print version of Stuart Little. I began to read, and do you know that Sophie quit humming and stimming, kept her head back on the pillow and very quietly listened? We read two chapters that way, and when I began the third, she sat up and looked away. I took the cue, put the book down and got up. Next time, I think I will pose some simple yes/no questions and see what happens.

Guilt interrupted paralysis and despair and instead enabled the gorgeous prose of E.B. White to dance around the mystery that is Sophie's understanding.


  1. That resonates with me quite a bit. My son seems so much clearer now he has switched seizure meds and I am trying to presume competence more and more just to give him the chance!

  2. Despair and it's lover, paralysis. I love that. I'm so happy to hear that Sophie liked the book. I didn't know if Daniel would listen or push Harry Potter away, and it thrills me that we're on day 4 of him really digging it. Thank you, Elizabeth. You inspire me all the time. I love that picture, too, btw.

  3. You are a wonder. So is Miss Sophie.

  4. Impossible things happen. We never know beforehand what will be the prod. This is lovely - and E.B. White. I entirely believe things come in their time, not ours. xo

  5. My goodness, Elizabeth. You of all mothers don't need guilt. What you do in the name of love is remarkable. Is "regret" a better term than guilt? Not that you need to feel regret either but guilt is just so heavy and Catholic.

  6. Oh Elizabeth. This brought tears for some reason. Such a walk of love and faith. Guilt is alright I suppose if it inspires. Love to you.

  7. Your words and thoughts with them give me much to think about.E.B.White is one of my all time favorites. Like in "island".Thank you for this...

  8. I think there are two kinds of guilt. There's motivating guilt, which prompts one to take action or change something -- like you're describing here -- and then there's destructive, obsessive guilt about things that can't change. I don't think guilt is universally bad. (And I'm Protestant! Well, more recently Buddhist, but I have Protestant roots.)

    I'm glad Sophie appeared to like Stuart Little. I loved that book when I was a kid.

  9. I love that you and Sophie had that experience.

  10. Check this out, from 1949!!!

    [As per the Bureau of Narcotics Files ; National Archives]


    Marijuana Leaf Plays Epilepsy Cure Role

    Drug principles isolated from leaves of marijuana, an innocent-looking plant that grows wild in different parts of the world, are playing an important role in research on a cure for epilepsy.

    This is the same marijuana which so many people fear as a habit-forming drug and which is noted for the opium-like dreams it produces in those who partake of it.

    The drugs being used are synthetic substances related to cannabinol, which is contained in marijuana, but does not produce the same effects. Dr. Jean P. Davis, faculty researcher at the University of Utah medical college, has done considerable research with the drugs in treatment of minor and convulsive epilepsy.

    She reports that the drugs have been found effective about 50% of the time. Future for epileptics appears “very bright,” she said, “because of not only one new drug, but a whole field of new compounds to combat epileptic seizures.”

    Helps Minor Seizures One of these new drugs, trimethadione, is most effective in petit mal epilepsy, minor seizures common in younger patients. Another, paramethadione, a sort of second cousin to the first, is useful in such spells.

    A third compound, called phenerone, is effective in psycho-motor seizures, sudden episodes of unusual behavior, accompanied by amnesia.

    Epilepsy comes in four degrees: grand mal, or pykno-epilepsy, with brief staring spells; psycho-motor, accompanied by amnesia and unusual behavior, and Jacksonian, identified by retention of consciousness with progressive twitching and numbness of one leg or arm.

    Mr. Davis is in charge of a section of the psychiatric clinic at Salt Lake General hospital, where she does some clinical work. She also instructs advanced courses in the departments of pharmacology and physiology at the university.

    Began in 1929 According to Dr. Davis, actual valuable research with modern methods of fighting epilepsy came into their own in 1929 with the invention of the electro-encephalograph, an instrument for recording brain activity.

    And the latest of the compounds used in treatment of the affliction was developed in 1948. Meanwhile, research is advancing at a rapid pace, Dr. Davis said.

    She studied for three years under Dr. William Lennox, one of the top U.S. experts on epilepsy. She received her doctor of medicine degree at Yale university in 1943.

    Most of her clinical work has been confined to children, with whom she “likes to work.”

  11. So poignant, this post, "guilt interrupted paralysis and despair" your prose and thinking, so beautiful. Also so very beautiful to see how we all influence each other in many powerful and positive ways. This post resonated with me too. To me, there are no "good" or "bad" emotions. Guilt and despair are as necessary and "good" as joy and hope. These are the extremes and give us our fences, the walls that we crash against in our efforts to live in a healthy balance between the two, which is, of course, unachievable.

  12. Your post made me remember all the different things I tried with Katie and the inevitable disappointment that always followed. I did my best. I often failed, cried a lot, and finally gave up trying because I was trying to stay alive and not sink into a permanent depression. Maybe a different mother could have helped Katie more. I don't know but she got me. I love her and I tried my best. Apparently I have a LITTLE GUILT.

  13. I was just thinking about her today. Wondering if you read to her how she would respond.

    Keep reading.



Related Posts Plugin for WordPress, Blogger...