Breathing at Passover

The weekend saw us in Montreal where we attended a dance theatre event and viewed the wondrous Chagall exhibit at the Muse des Beaux-Arts. Not for the first time, we walked the streets in a pouring cold rain. Yesterday we were home and the weather was fine; today is forecast to be warm and sunny, a taste of early summer in April.

Tonight is the first night of Pesach, Passover. A number of Jewish writers have said that since the Holocaust the meaning of Passover has changed; it is as though the Angel of Death has become ever less selective. I was reminded of this last week when it seemed impossible to avoid graphic video clips of children struggling to breathe following nerve gas attacks in Syria; poison gas is, after all, notoriously nonselective.

Such images are immensely evocative for me. A few days into my polio experience, I suddenly found myself struggling to breathe. If the virus attacks the bulbar region of the brain, the patient, me in this case, may lose the capacity to breath as the muscles of the diaphragm become paralyzed.  Fortunately, I was place in an iron lung, a log cylindrical metal ventilator that breathes for one. Once inside the lung, I was totally dependent on others for every bodily function; the iconic sound of the lung, a consistent “whoosh, whoosh,” became both reassuring and terrifying.

The muscles in my neck remain weak from the polio, often collapsing at night and closing my airway. I use a bi-pap machine as a ventilator, pressurized air forcing my airway open. A couple of years ago I began waking in the night, terrified and gasping for breath; After a few nights of this, I was ready to move back into the iron lung. I would even have welcomed another tracheotomy! Instead, I managed to get in to see the doctor at the sleep clinic who significantly increased the pressure of my bi-pap machine, returning me to my normal, rested self.  Given all this, it is not surprising, I guess, that I have a profound, abet terrified, empathy for the gassed people of Syria.

Speaking of empathy, much has been made of the lack of empathy that characterizes many of our politicians, a problem that hearkens back to the rise of Nazism in Germany. One of the lesser known components of the Holocaust was the elimination of people with disabilities, a planned and expedited solution to address the problem of those who were viewed by the Nazis as “drags on the system”. Disabled people were among the very first group to be eliminated. I find myself wondering whether the right-wing politicians who wish to make healthcare unaffordable for elders and those of us with disabilities are seeking their own solutions to those they perceive to be drags on the system, even as many of them deny the Holocaust even happened.

As I contemplate all this, I am aware that I inevitably suffer my own failures of empathy. Yesterday Jennie and I went for a walk on the bike path beside the lake, or rather, Jennie walked while I, tired and sore from walking in Montreal, rode my disability scooter. All around us people ran, kayaked, and played, in response to which I found myself feeling jealousy, then anger, then shame.

It has been a long while since I remember having such a visceral reaction to others’ apparent wellness, since I found myself re-experiencing such strong perceptions and emotions from childhood. I was reminded that at age 8, after I returned home from the hospital, I spent the winter and much of the summer inside, watching through the windows as other children carried on with their lives. It seemed like a sort of exhausted house arrest, a deeply stigmatizing isolation from my peers and a transition into the gimp universe of visible difference. Little changed when I returned to school; although some of my peers became friends, I remained largely on the outside socially, unable to do many of the routine tasks associated with play and life. I also became a visible target for bullies and cruel teachers.

This morning I am experiencing a powerful mixture of memories and emotions. I am reminded of a Passover seder in college. It was 1969, the height of the Vietnam War, and the Holocaust was an immediate and devastating presence.  The civil rights movement was active and the disability rights movement was yet to blossom. During the seder the Rabbis repeatedly wondered aloud about our nation’s leaders’ lack of empathy and moral courage, and reminded us that no one is safe or free until all are. They insisted that Jerusalem is both a physical place and an aspiration, and that we must all meet there, in Jerusalem, free of stigma and oppression, next year. May it indeed be so!