For Emily Dickenson, "Hope is the thing with feathers." For Woody Allen, "The thing with feathers is my nephew." For me, hope wears a stethoscope and is featherless.
These past few weeks, I've been pursuing part time disability in the school district where I work as a Literacy Specialist. Because I feel ambivalent about the change, the pursuit has been hard.
I am aware that fatigue and other disabilities are making full-time work impossible, so the possibility of a part time job causes me shoulders to relax and my breath to travel to my abdomen instead of catching like a hiccough in my upper chest.
I feel sad, though. I've committed my adult life to teaching high school students, and I have at last landed in a district wiht a tremendous diversity of ethnicities and language that commits to making real the pledge to teach every student. Since neurosurgery in 2007, I've been working as a Literacy Specialist in the Highline School District in Burien, Washington. I've spent my days helping passionate teachers plan to meet the needs of their students and working with these teachers and their students. It's a great job, and it's taken me twenty-five years to prepare for it and to find it. It's hard to leave it even a little.
I've felt sad, too, because I have worked hard not to give up a life of meaning in response to these brain tumors. Continuing full-time work in education has seemed central to continuing to live meaningfully.
Yesterday, my doctors at Group Health helped me to see this move differently. Dr. Herstein encouraged me to understand that in order to live fully, I need to find a way to live with these disabilities, not just to power through the fatigue and other challenges. My Nurse Practitioner Amy Lynes, always one with the human touch, hugged me as I left her office. My primary care physician, Dr. McCandless, described me as a person who puts positive energy into the world, and commented on how lucky Ann and I are to have found each other. I don't even know if she was aware of how much doubt she was addressing, but I felt eager to live my life anew when I left her office.
In the paper this morning, I read about another woman, the legendary women's basketball coach, Pat Summit, who has been diagnosed with early onset Alzheimers. The Seattle columnist Steve Kelley applauded her courage and lauded the way that in continuing to coach, she will teach the rest of us how to persevere in difficult times.
Kelley's interpretation of Pat Summit's lesson is not the lesson for me right now. I am trying to learn to let go of the details of an old life and to live a full life in my new life. I have been doggedly persistent, perhaps excessively so, my whole life. Now I'm trying to learn what to change and what to maintain as I learn to live with changes that I cannot control.
I guess in the oft quoted serenity prayer, "God grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference," I seek the wisdom and the courage to know the difference.
"For me a brain tumor and its treatments are not a pause in the adventure of life, but instead a part of the adventure of life." Mary has survived big hair, a brain tumor, coming out, distressed bowel syndrome, hallucinations, radiation, and a car wreck. Here Mary takes us from public transportation horrors to the joys of sharing life with you. Though you probably won't want to have a brain tumor; you will wish that you could see the world through Mary's eyes. Sister Jen
A Photograph of me without me in it
Friday, August 26, 2011
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Hi Mary,
ReplyDeleteI was moved to write by this entry about deciding how to live fully with your disability. I have learned in the last few years a strategy for dealing with a head cold that has to do with giving in to it fully for a day. I mean literally not getting out of my pajamas; yesterday I read a whole book, watched a DVD, ate what I could find without cooking, drank lots of liquids, and blew my nose all day. Last night I slept well and woke up this morning feeling 90% better. I used to fight it more. I now think it really works to listen to my body and really slow down. I'm NOT comparing my head cold to your brain tumor. But I do think we all have lessons to learn about living with our disabilities. The Serenity Prayer really says it well. Except that I find it takes awhile to figure out what I can and cannot change. I also want to recommend two books: My Stroke of Insight and A Life of Being, Having and Doing Enough.
Thanks for writing so candidly about your process and struggles. It inspires me. I heard you might be writing a book??? This blog has all the ingredients.
Mary--this is the post that I loved and hope makes it into a book someday! I particularly liked this wise passage: "I am trying to learn to let go of the details of an old life and to live a full life in my new life. I have been doggedly persistent, perhaps excessively so, my whole life. Now I'm trying to learn what to change and what to maintain as I learn to live with changes that I cannot control."
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