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.