Robbed

Many years ago, a film was made from the short story "Flowers for Algernon".  The film,  "Charly", told the story of an intellectually disabled  young man who blithely lived his life being helpful, kind and unaware.

Charly is chosen as a candidate for a surgical procedure that could bring him superior intelligence: and it does.  And with that intelligence comes self awareness: he perceives the world around him and his place in it.

The new and evolved Charly understands from whence he came. As the plot of the story progresses, he becomes painfully aware of his fate:  Charly's superior intelligence is a fleeting gift.
In the final scene, Charly bursts from a university auditorium where he was invited to lecture academicians about his growing brilliance, but instead learns the truth of his certain demise.  Charly's deterioration is swift as he approaches the playground his former self enjoyed.  Dressed in the three piece suit of a learned man he hops aboard a see-saw and joins the children who are once again his peers.  The cycle is complete. 

I too often have flashes of the excruciating visuals in which Charly sheds the walk and the manner of an abled and respected man and returns to the world his less abled self inhabited.   In this tale, the viewer and the characters have the knowledge of the former Charly, and so we know where he is headed. That makes his transformation all the more painful...as if watching a train bearing down, knowing full well the outcome and being unable to move from the tracks.

When my son first started seizing back in the days when we thought he had an emerging anxiety disorder, he had a variety of evaluations (none of which were an EEG).  As I have written previously, his IQ testing was exceptional.  At age 6 he was intuitive, curious and sharp as a tack.

As Cesare grew, and as epilepsy began the slow sapping of his abilities, he was moved into special education classes.  There he was paired with students with whom he would remain grouped until his eventual graduation from high school.  His peers had autism, learning disabilities and emotional disturbances.  These students, as have the hundreds of students I have worked with over the years as a school social worker, generally improved.  Through varying degrees of intervention,  many students with Aspergers learn better social skills, students with learning deficits grow more competent.  Even students with intellectual disabilities learn and become more able.  But epilepsy is too often a diagnosis of  slow decline: Kids who keep seizing experience new brain trauma constantly.
Epilepsy is cruel like that.  After multiple surgeries, countless medications and thousands of seizures, at 18 Cesare is not who he used to be.  He is far more competent and able than Charly, but he was nonetheless robbed.  Like a thief that broke into our lives in slow motion, pilfering treasures like the proficiency to learn advanced skills and to make friends, short term memory or the ability to swiftly process what someone is saying to you.

I think that Cesare does not remember the child he used to be.  He does, however,  have a twin that while not identical is no less a mirror.  The good fortune of the more limited Charly is that he lacks the self awareness to know what he is not or to fully realize that which he cannot do.   Cesare sees his life in parallel to his brother's.  He has always been acutely aware of the opportunities and the privileges that he does not enjoy.  I think if one must lose such gifts it is far better to do so unaware.

For Griffin, the experience of being the twin who is able is almost as difficult.  For he too has a mirror.  He has watched his brother's former, sharper, more alert self transform into the young man who cannot go away to college and who spends way, way too much time with his parents.  Nevertheless, Griffin must still turn toward the door and move forward..out and away as 18 year olds must do.

There is no denying that in the film I have been describing one could argue that the Charly that swings his legs from the see-saw is a happier fellow.  His life is uncomplicated, simple.  But the sorrow in the eyes of those who love him, those who know what he could have been and what he could have had is what levels me.  I identify with those who must impotently watch their loved one tumble into a slow free fall.

An Everyday

                                          

A rainy day.

A peaceful day.

Correcting papers for course taught on "Rape and Sexual Assault".

Empathic, sensitive young men and women motivated to join ranks to end violence against women.

A Rainy day.

An optimistic day.

"Grant Me the Serenity...

...to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference."  Truer words never spoken.

I've been immersed in these challenges this week.

I have had the considerable good fortune at my school social work job to have landed in a sizable, windowed office each year...despite moves between different buildings.  I haven't asked, the dice just rolled that way.  I don't typically do well with dark and dank so this has been a great gift for 23 years. This year, due to shifts throughout my building, several of us on the clinical staff were moved into closets, really.

This, of course, not quite accurate.  I'm not that young.

It was an inevitable change that I could see coming down the pike.  With the full weight of "wisdom to the know the difference" at my side, I made lemonade out of lemons and spent a day painting the walls a screaming yellow and added various Pier One Import types of touches.  While a bit dark, I'm truly happy with my digs.

Such wisdom to know what I can change and what I cannot was apparently hiding under the sofa later in the week when Cesare announced that he wanted to quit school (read: the one, single class he is taking at the community college).  He said he couldn't keep up with the content the professor was presenting.  This is a profound moment, I thought to myself.  I can choose to get out of the way and let my young adult son choose his own path, set his course and live his autonomy.  Or, I could wrap him up in my expectations, tightly...so he can't breath.  Wisdom sliding farther under the sofa into the land of dust bunnies, I of course chose the latter.  "But what will become of you?  What do you mean the class is too hard?  Are you trying your best??  Have you met with the professor? What are you going to do with your life?  You're too smart to fold folders at the factory for the rest of your life."

My son is wise and sensitive but not experienced enough to know that the panic in my voice and the fear in my eyes were all of my own making.  I think I scared him and, to his credit, made him angry.  We tabled the discussion until the next day.  I coaxed wisdom out from where it was lallygagging-about with some warm cookies and insisted it provide a little perspective.  I thought about Cesare's IQ testing and what I know well to be his strengths and deficits.  The WISC IV does not measure intelligence... a common misnomer.  It measures performance, or how one's abilities are expressed.  Throughout the course of Cesare's epilepsy, from age 6 to now almost 18, his measured IQ has dropped some 30 points.  His verbal comprehension, his working memory (short term memory) and his perceptual (non verbal) reasoning fall in the average to low average range.  What has plummeted is his processing speed.  Purdue University explains this nicely:

"As an analogy, one can think of the thinking brain like the front entrance to a Victorian style home. There is a porch, front door, a foyer and, of course, the rest of the house. Guests (information) knock at the door and "stand on the porch"(i.e., teacher presents concepts). The host (i.e., the brain) lets the "guest" come into the foyer (i.e., brain perceives the information and registers that it is there). The host helps the guests take off coat and boots (i.e., the brain organizes and clarifies the information for storage), and brings them into the house (i.e. encodes the information into longer term memory). If the host takes too long to perform "host tasks" and get the guests into the living room, some guests may become impatient and leave (i.e., some information is not encoded)." 

Asking Cesare to sift through information and produce a response is laborious for him (i.e, "What do you want for lunch?") But, spontaneous wit?  When younger he was sitting on dad's lap outside watching a spider approach a fly in it's web.  "Look dad, dinner and a show".

Though I know this about Cesare I easily, shamefully, forget.   So, when we sat down to figure this out the next day, I pulled out his WISC scores and explained them to him.  I explained that his very low processing speed means that when his Biology professor is lecturing in front of the room it might seem like trying to catch blowing leaves.  We both got teary.  So much lost in my wonderful son, so much is gone.  He called the college the next morning and dropped the class.  And it's alright with me.  We'll take it one day at a time.  

I faced one more challenge of wisdom and patience before the week's end.  I have a small private psychotherapy practice.  A year ago I relocated to more comfortable office space in a lovely old Victorian house, owned and operated as a community mental health practice for more than twenty five years by a brilliant family therapist.  I confess I do not know Mae well.   I do know her sterling reputation and I know she is dying.  She doesn't come into the building often anymore.  In the year I have been renting there, I've spoken to her only a handful of times.  My colleague, who occupies full time hours in the offices, sees Mae regularly.  Mae has yelled at,  challenged and humiliated my colleague in front of clients making demands about light bulbs, moved furniture and mismatched decor.  My colleague, also a kind and gifted soul, warned me last night when I arrived for clients that Mae was in the building and on a tear.

Beautful Mae, a diminishing 70 pounds or so, launched a litany of complaints in my direction chiefly about my Ikea chair.  It is ugly and offends the other furniture in the room.  To drive the point home, Mae insisted my chair was "spitting" at the loveseat.

As if, literally, rearranging the deckchairs on the Titanic, after a brief recoil I could see this for what it was.  Mae is losing control of her life, it is only the little things now that she can change.  It took me a moment, but I could see that I was the one that needed to have the wisdom to know the difference.

Having control is a seductive notion.  It offers the illusion of safety.  We think if we hold tight enough and manipulate deftly enough everything will be OK.  Sometimes I think we're all just rearranging the deckchairs on the Titanic.  And rearrange we shall.   And a coat of yellow paint can make all the difference in the world.