Talking to myself

A souvenir t-shirt that has been popular for many years reads

My parents went to Hawaii and all I got was this lousy t-shirt.

I began thinking about this when I recently read yet another tale of fame and fortune from a (former) cancer patient. The diagnosis of any serious disease is a definite upheaval, one that leaves many patients reevaluating their life choices and charting new paths.  A good number have been inspired to publish their tales and take to the television talk-show circuit, and I have written about some of these books here: My Stroke of Insight: A Brain Scientist's Personal Journey by Jill Bolte Taylor, Ph.D., and The Silver Lining by Holly Jacobs come to mind. I have bought some of these books and started to read them (well, not exactly, in fact I either listened to recorded versions or to Barry reading out loud, since reading remains so tedious for me), but I never get very far before I begin to find them annoying.

It has been two years (yes, two years!) since my diagnosis. Why have I been unable to find the strength or sense of purpose that these authors share? How is it that they have gone to Hawaii while I have barely gotten off the couch? Before I wandered too far down this road to despair, I remembered something I wrote over a year ago, in March 2013:

Tuesday morning was spent at MSKCC for the MRI and visit with Dr. DeAngelis…We talked for a bit about the cognitive therapy I am doing… I have to admit she seemed a bit skeptical, I think she just doesn’t want me to expect too much and then be disappointed. But she certainly agreed that even something that helps a little bit is a good thing.

Perhaps it is all about expectations. A couple of weeks ago I quoted the lyrics of the Simon and Garfunkel song, “The Boxer”: after changes we are more or less the same. For my outlook and personality to have undergone some major transformation as a result of this disease was not necessarily expected or even desirable. If I am a bit less driven than I was as a younger and healthier person, before DIPNECH¹ and PCNSL² came into my life, it may well be due to the strength of my desire for self-preservation.

Rather than torture myself every day about the things I have not accomplished and likely will never achieve, rather than looking to other patients, whose circumstances are each uniquely theirs, to set a standard for how I judge myself or wish others to judge me, I need to believe that I still have a useful purpose for being here on this planet. Maybe I have not yet figured out just what that purpose is, but I need to believe that even the modest goals of keeping despair at bay and getting through each day without causing injury to anyone will eventually enable me to find that purpose, and maybe even to act effectively on it. As Rabbi Avi Weiss likes to say, “I am talking to myself and letting you listen.”

I remember some years ago sitting in a class during the weeks before Passover. The lecturer began talking about the significance of eating matzah, the unleavened bread. He likened the process of yeast bread rising to the inflation of our egos, and argued that eating that flat bread for a week reminds us of the importance of keeping those egos in check. The Passover narrative is about freedom from slavery. I do not have to be a slave to the attention and admiration of multitudes in order to live a satisfying and productive life. I can certainly get by with a little help from my friends.

And some warmer weather would be nice as well!

Love,

Rebecca

¹Diffuse Idiopathic Pulmonary Neuroendocrine Cell Hyperplasia

²Primary Central Nervous System Lymphoma