Yesterday I read Dr Lee Lipsenthal’s beautiful book, Enjoy Every Sandwich: Living Each Day As If It Were Your Last. Dr Lipsenthal was diagnosed with esophageal cancer in 2009 and passed on just three months ago, in September 2011. His book is very fascinating and inspiring, and resonated very much with my own thoughts on mortality (some of which you’ve read here).
I really recommend the book, but strangely enough it’s not the mortality or the inspiration that prompted me to write in my journal after reading it. Instead, it’s the glimpse into a parallel lifestyle (that of the terminally ill person). Have you ever thought about how odd it is that we see so little of lifestyles other than the normative “grow up in a family, go to school, get a job, have your own family”? I mean, we know there are deviations from this trajectory, but there are such varying degrees of separation. Some people grow up without a family, some people never form their own, some don’t get jobs, etc. When it comes to more substantial deviations, on one side you have the lifestyles we might characterize as obviously very different from first-world normative: impoverished people in developing countries, for example, or religious monastics. On another side, you have a different kind of obvious distinction: people whose life choices may be (but aren’t always) fairly normative, but who differ from the majority in their person: disabled people, for instance, those with certain kinds of mental illness, or the genderqueer; these folks were invisible/hidden for a long time, but are now becoming more visible.
But the kind of parallel life trajectory this book made me think about is that of people who may have started out normative, and who perhaps hope to return to normative, but who are currently — maybe permanently — set apart because of life circumstances. They’re members of normative society, and then suddenly they’re not. I’m thinking of people like Dr Lipsenthal, with terminal illness, or people like my friend Cathy, with chronic illness, or servicepeople returning to civilian life, or people who are (or were) incarcerated… perhaps also the families of such folks. I feel like it’s hard for us to see these people because there’s often a stigma to their coming out, or because they are reluctant to affiliate themselves with circumstances they hope are temporary, or because we as a society seem very determined to deny the existence of non-normative life trajectories (even to the point of, as Stacie wrote once, thinking people should “get over” grief quickly! we want everyone back to straightforward normative as fast as possible!).
Why is it that these parallel trajectories remain so invisible? Are we still so afraid of difference, disease, and death, that we don’t want to have anything to do with people who are touched with any of these? Or are these invisible walls of separation already coming down because of the internet? Every time I’ve made a connection across one of these walls, life seems so much richer. But maybe it’s easy for me to say that from my vantage point of normativeness and privilege.
(Please note, this is something I’m just thinking through. I’ve tried to write this in a way that doesn’t imply any kind of value judgment on anyone or their life circumstances, but there is so much I don’t know. If I’ve been ignorant or disrespectful, educate me!)
Sometimes the invisible life is difficult for us to relate to and as a consequence serves to show our own inadequacies at handling either our reaction or our knowledge of it. I too read a book in my early 20’s, an autobiography of a young man dying of cancer, that has stayed with me all my life. I can’t recall the author but the book was called “Mars” . It was a very angry book of a man living a life neither he nor his fellows could understand. It’s thought provoking. How do we relate to these circumstances ?
A little time with Google says Mars is by Fritz Zorn. 🙂 I’ll have to look for it. I think you’re right about invisible lives serving “to show our own inadequacies” — they’re strong spotlights on our own choices and assumptions, besides being interesting in themselves.
These questions mean a lot to me too, as someone struggling with my own questions about real and perceived non-acceptance from those who only seem comfortable with normative. I suppose it’s hard to find those ways to relate. It’s not a priority in many homes or even in schools though finding those ways to relate would help get rid of bullying, too.
Speaking of promoting non-normative acceptance in schools, I read this the other day and it just expanded my mind so much to imagine these kids’ experience: http://togetherforjacksoncountykids.tumblr.com/post/14314184651/one-teachers-approach-to-preventing-gender-bullying-in