The Diving Bell and the Butterfly

Day Seventy-Nine: An evening at the MoMA with Julian Schnabel at the Screening of “The Diving Bell and the Butterfly” (Thank you!).

As a member of the MoMA (Museum of Modern Art) Film Society, I get invited to a lot of showings of new and old films alike. This evening I put the walk aside and got work done around the house and then headed into the city to see the showing of “The Diving Bell and the Butterfly”. The movie intrigued me as well as it horrified me and woke me up to what having a stroke is like from the perspective of the stroke patient.

Needles to say that after taking care of my dad, who had one of the most dangerous types of strokes you can get, for almost four years and knowing what is it like to be a caregiver, this was the first time I experienced what my dad was going through in his recovery. The main protagonist in the movie was a 43 year old fashion editor for Elle in Paris and was hit with such a devastating stroke that it turned him into a what some would call a ‘vegetable’. His form of communication was by winking to his therapists his thoughts and ideas. That was unique to some of the things I have seen up in Helen Hayes Hospital when visiting my dad in therapy.

I was shocked by it all especially seeing it from his perspective and what his feelings were and it made me sympathetic to the patients. It is easy for us as caregivers to say ‘I understand’ when we really don’t and when people responsible either don’t do their jobs or do or say something thinking the patient does not hear or understand and knows full well of their surroundings.

I walked out of the theater that night shaking and very emotional when I thought of my dad and all the times we sat in that theater at the museum before he got sick. It put life into perspective to me. I do not know how much the rest of the crowd felt but it hit me at the core.

As I left the MoMA, I saw Julian Schnabel surrounded by the usual ‘artiste-types’ and I did not want to bother him. I walked out of the museum still shaking. Something told to go back and say how I felt to the director.

Julian Schnable

Artist and Director Julian Schnabel


I walked back into theater and approached Mr. Schnabel and pushed the artiste types to the side and introduced myself. I told him who I was and what I do for the Department of Disability Services for the County of Bergen and that I had taken care of my dad for over three and a half years.  I thanked him for giving me a perspective of what my dad was going through and how it affected me as a former caregiver. I could see that he saw the emotion in my face.

The whole conversation took about a minute and if I had stayed one more second, I would have cried on the guy’s shoulder and I don’t think it would have looked good for me to cry on the shoulders of one our most important artist’s of the 20th & 21st Century.  I found out later he was taking care of his own father when he was sick as he got involved in this film. Only another caregiver could have understood this.

So I am dedicating Day Seventy-Nine of “MywalkinManhattan” to Julian Schnabel, whose direction in this film opened my eyes. I think only someone who has lived it could understand the significance of this project. Losing a parent is not easy.

I recommend seeing the “The Diving Bell & the Butterfly” to all caregivers. When you are feeling frustrated or overwhelmed, please remember who we are taking care of and see it from their life. I am always glad that my dad and I had one another. We were very lucky!

Trailer for “The Diving Bell and the Butterfly”:



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