NL #1: With Feathers

NL (New Life) #1: Like Homer's Odyssey, my story begins in medias res, so I have written an introduction for my blog book which I am sharing with you here:

Hope is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all.
--Emily Dickenson

“Emily Dickenson was wrong. Hope is not the thing with feathers. My nephew is….”
--Woody Allen, Without Feathers

Like climbers who ascend the world’s highest peaks, I am an adventurer. I have struggled through challenges most others don’t face; I have climbed to the top to see that the climb down is just as long and perhaps more arduous; I have seen the world from a perspective that others may imagine but few have experienced. Sure, my challenges have been differentthan theirs: big hair, a Southern upbringing, the Seattle transportation system, a brain tumor, brain surgery, radiation... Like the climbers, though, I appreciate the journey’s challenge. I, like those climbers, see the world and myself in a new way because of this journey. I have a story to tell.

When my doctor told me I had a brain tumor, I faced a challenge I had never before considered: how do I tell people I have a brain tumor? My first few efforts were abysmal: First, I went to tell the school counselor where I worked that I might not be able to proctor the statewide exams because I might need to have brain surgery instead: a little abrupt. Then a talented theatre teacher from Ann's school, whom I don’t know well, called. We had talked about combining immigration stories from my many recent immigrant and refugee students with her more affluent, less recent immigrants (like centuries ago) into a theatre production. When she called to discuss the idea further, I said, “I don’t think I can work on this right now. I just learned that I have a brain tumor.” Again, a bit abrupt.

So I started practicing. In the bathroom mirror I practiced the sentence, studying my face and placing the emphasis on different words. Was it, “I have a brain tumor” or “I have a brain tumor”? I made some phone calls, feeling that I needed to let folks know before prayers of concern at church on Sunday. When I walked into church Sunday morning, my friend Karen said, “My answering machine isn’t working too well. Did you leave a message saying that you have a brain tumor?” Apparently, that wasn’t too smooth either.

I thought about what my doctor had done. I had been to see her for almost a year about headaches, slight balance issues, vision problems. At first, she told me to drink more water. When that didn’t help, I went to an ophthalmologist. He told me to drink more water, too. As a high school teacher with few breaks in the day, all that water began affecting me at work. When I started seeing double while biking the next spring, I contacted my doctor again and told her I simply could not drink any more water. “I think it’s time for a CAT scan,” she said. I was nonchalant, feeling like this was a rule-out, like I was finally getting somewhere after years of blacking out, feeling faint, and struggling with fatigue.

I was not home the first day the doctor called, so she left a message, “Hi Mary. This is Dr. M. I need to talk with you, so please call back as soon as you get this message.” I suspected this wouldn’t be good news. Otherwise, she’d just leave the news on voice mail. I was on spring break from school and didn’t want to ruin it, so I was passive aggressive and didn’t return her increasingly assertive messages. Once, she left her home phone number. A really bad sign. I still didn’t call. My partner Ann and I went to a Korean bath for a “scrub” and then had cosmopolitans on the deck. No need to ruin the last moments before whatever this bad news was.

The next Monday, I arranged to use the principal’s office for a private phone call after school. When we connected, the first thing Dr. M said was, “I guess you already know this is going to be bad news.” My doctor had prepared me for bad news already. I thought, “I should do this, too.”

So I began to start my speech with comments like, “I have some bad news about my health that I need to talk with you about.” I eventually put the emphasis on brain, but not too exaggerated: “I have a brain tumor.” Although the announcement was still something of a shocker, folks seemed more prepared for the news.

Plans proceeded pretty fast, as this tumor was (according to my surgeon), “a big nasty tumor in a really bad place.” How big? At first he said it was the size of a grape. Then the size of a scuppernong and-- after surgery revealed its actual size--the size of a plum. (I don’t know why they always seem to compare tumors to fruits. A friend had a cyst “as big as an orange.”)

My father came into town to visit the neurosurgeon with me and my partner Ann. What would happen in the surgery? If surgery stories make you queasy, you should skip this part. Surgeons would cut out the back of my skull, split my cerebellum, use some fancy new video equipment to see the tumor and remove it from my fourth ventricle. Surgeons wouldn’t go into my brainstem, so I might need radiation afterwards in case they didn't get it all. There was five percent to 10 percent chance of lots of things going wrong: I could die or lose my ability to walk or swallow or breathe, for example. I might turn into a Republican, but that was unlikely. It would probably take me five to seven days of recovery in the hospital and six weeks at home to recover. I asked Dr. M, “What does ‘recovery’ mean? Does it mean I can sit up or go to the bathroom by myself or go on a ten mile hike?” Apparently, it might mean any of those things. Or none of them.

I did the best I could to prepare my students for a new teacher and myself for the unknown. I made a list of family items I’d like to go to my nieces and nephews in case I died. I was in my early forties and in reasonably good shape. I ate at least one unit from all the food groups (vegetable, protein, fruit, beer) each day. I figured I’d be fine.

I wore my tangerine “Breathe” shirt with the “Life is Good” stick person sitting in the lotus position to the hospital. When the nurse called my name, I held up my arms in victory as if I’d just scored a touchdown. When the anesthesiologist jabbed the heck out of my right arm in an attempt to get a line in my dainty veins, I was good humored. When they wheeled me into the surgery room, the size of my bedroom with lots of folks in masks and surgical gowns looking professional, my lead neurosurgeon introduced me to everyone and I was Southern polite: “Nice to meet you. Thanks for being here…” The anesthesiologist lifted my gown, saw my trembling abdomen and said with surprise, “You’re nervous!” This was the closest I came to getting snippy: “Of course I am. All these nice people are going to cut open my brain.” She put me out.

When I came to, I was in the recovery room and Ann was saying, “Congratulations. You made it.” She told me she’d send in my parents in a minute so that they could see that I was okay and then other close friends would visit very shortly in ones and twos. Everyone, it seemed, needed to verify that I was still breathing. “Okay,” I said, “but tell Dad to be quiet.” My dad can be quite loud. Ann saw this as evidence that my sense of humor was still intact. I wasn’t kidding.

The rest follows in this book. There were complications. I had a small stroke and some damage to my 3rd, 4th, 6th and 7th nerves. The right side of my face was paralyzed. I spent almost a month in recovery where I learned to walk (with a walker), to flush the toilet and to shower again. The following year, I had two eye muscle surgeries. Almost three years later, radiation to address a new tumor. I still have disabilities and much has been hard, but there have also been gifts along the way—the gift of a caring family and community and even, sometimes, strangers; the gift of living in the world in a new way, seeing the world differently, and having the world see me differently; the gift of seeing in myself faith, courage and humor that I did not know would carry on with me.

This book began as a blog during radiation, sharing my progress with family and friends, but it soon became my way of connecting with the world and reflecting on my journey. I share my story with you because I think it’s interesting and hopeful and I believe this world--and perhaps you--can use stories of hope. Thanks for joining my community. Mary