Running on the icy/snowy/slushy roads near my house recently, dodging the snow plow truck guy who most likely thinks I am ridiculous, I realized how dealing with my SBT (Stupid Brain Tumor) for the past two-plus years has affected every aspect of my life. The drama of the grand mal seizure during the Zombie Run in Traverse City, Michigan, in 2011, learning I had SBT, undergoing Gamma Knife surgery (radiation to blast the tumor), and dealing with memory problems, emotions (“Cry Me a River,” indeed), and language issues (*^#^*) seemed to be a story I was ready to shed or at least shred into little pieces. As I listened to Hall & Oates’ words on my iPod, “Where do you dare me to draw the line? / You’ve got the body, now you want my soul,” I thought, hey, whoa, “I can’t go for that.” I needed to rethink my running strategies, face my fears, and set goals for running another 5K, 10K, or half marathon and not worry about waking up surrounded by Zombies at the side of the road. Time for a new game plan.
My one-year MRI in November 2012 showed that the tumor had shrunk a bit, but the edema was nasty and creating balance issues. My two-year MRI in November 2013 showed that SBT had shrunk a teeny bit more and the edema had “markedly decreased” since 2012. Since I had been feeling much better, I convinced my new neurosurgeon, Dr. Ma, to cut back on my anti-seizure medication since the dosage seemed to keep me in a perpetually stoned state and not in a good way. He scheduled me for an EEG, and on January 2nd, my son dropped me off at the hospital for my date with Angie and her electrodes. I sat in a very comfy lazy boy chair, feet up, blanket on, and waited while Angie dressed me up like some modern day Medusa, and she promised that the gel she used to stick the electrodes on my head would wash out easily. Two days later, I still felt like Cameron Diaz’s character in Something about Mary.
After a long series of tests to determine if I would have a seizure or perhaps slip into an alternate universe, Angie said she could see exactly where the radiation had zapped my head. Of course, I would have to wait for Dr. Ma to explain it all to me. I wondered if my brainwaves took a little detour around SBT as they guided me through my daily tasks. Was there still a possibility that I could have a seizure while running or watching NCIS? I anxiously awaited the results of my EEG.
My husband and I settled into the examination room and waited for Dr. Ma. Before long, he walked in wearing a very sharp suit. He informed me that I had passed all of my tests. The EEG did show electrical activities in the left frontal area of my brain that indicated the slight possibility of a seizure. Because of this, I would have to stay on my anti-seizure medication. He agreed to reduce the dosage even more than he had at our last meeting, so I felt this was a huge victory.
I asked Dr. Ma how those brainwaves work around the area where SBT is located and where the radiation burned a bit of a hole in my head, so to speak. Imagine a heart rate monitor where the blips of lines go up and down on a regular basis if your heart is in good shape. I had certainly seen enough of these as I dealt with my late father’s issues through the years of hanging out in the ER with him. Dr. Ma said that the EEG showed a distinctly different pattern when the brainwaves churned through the “damaged” zone. He then said something that made me want to stand up and cheer: “Live life. You can’t go back.” I can go for that.
I’m feeling lucky, and I am ready to get my running game on and get this body into a much sleeker shape. More miles and less beer ought to take care of that. SBT might be in charge of what my body can or cannot do, but I refuse to let it take my soul. As long as I can move this body forward, I am heading out the door into the unknown.
And isn’t that what literature requires, really, for the writer to feel like her life depends upon it?
I am not certain when I first realized I had a problem with language. Memories six months prior to my SBT (Stupid Brain Tumor) seem to come and go, and some memories are nonexistent. If not for stories from my friends and family, and the writings in my journal, some so strange they fail to make sense, it seems as if I ceased to exist in mind and spirit while my body lay in wait for embalming. I felt as I was a stranger in a new country, and the language barrier made me invisible.
Instead of displaying the gift of gab that my mother would accuse me off having when I was young, I began hesitating over each word, fearing some dreadful malapropism or simply using the wrong word (like dock) when I was actually describing the hoist. I had to walk on the dock to get to the hoist which held the boat, but for some reason, my brain now found ways to avoid the logical sequence of events or find the correct word. As the Beatles famously sang, “Say the word and you’ll be free.” Well, damn, I wanted to be free, and I felt as if my life depended on it. I began to retreat more and more into my home office, lie down on the couch, and watch television. I became hooked on NCIS and the character Ziva David.
Ziva David’s character, played by actress Cote de Pablo, is a former Israeli Mossad agent who becomes an NCIS Special Agent. Ziva’s malapropisms, called “Ziva-isms,” are well known to NCIS viewers. As Ziva adapts to American culture and its plethora of analogies, idioms, and slang, she also shows her fellow agents that she doesn’t take crap from anyone. As I became addicted to NCIS marathon days, watching five or six shows in a row, I felt as if someone was “jerking my brain” (chain) as Ziva said in one episode. The NCIS family became my family, and I gave up reading books and writing.
Time passed and my frustration grew with my inability to comprehend anything more complex than People magazine. One day, as I stood in my office, staring at hundreds of my books, I noticed Laura Kasischke’s book of poetry, Space, in Chains, sitting on a shelf, by itself, as if waiting. I began rereading her poetry, and when I finished each poem, I sat still and listened to the quiet. I decided I was in language rehab.
Eventually, I began reading novels again, slowly, as if I was learning to ride a bicycle. I wondered if I had finally adjusted to my anti-seizure medication or if the radiation from my Gamma-Knife surgery had opened up a sliver of thought in my clogged head. One day I opened my writing journal, and instead of recording my thoughts for the day, I attempted to write a poem. It was horrible, but I sent it to my friend Chris Giroux. Chris and I became friends when I taught at SVSU, and we had been exchanging our writing for many years, providing feedback, ripping what needed ripped, or praising each other’s work when we got something right. I began spending less time watching NCIS and more time writing. I felt the jerk, jerk, jerk of my brain as it tried to move past language rehab and into the real world.
As luck would have it, around the same time, a former student of mine, Alie Buckley, contacted me on Facebook. She had started a blog, http://ifcoffeecouldtalk.wordpress.com/. Alie asked me how I was, so I told her about SBT. She encouraged me to start a blog and share my story. Alie became my teacher, showed me how to start a blog, and offered to read my posts before publication and give feedback. Again, I felt the jerk, jerk, jerk of my brain, and started to write for a different purpose: I wanted to tell my story. Perhaps if I wrote it, I would understand it.
I published my first blog post on June 14, 2012, and the process has been cathartic, therapeutic, made me laugh as I write, and made me cry far more than I ever imagined it would. I realize I am writing now because my life depends on it.
I am still addicted to NCIS and spend the occasional afternoon on the couch watching reruns when my headaches or balance issues sideline me. I believe I am making progress in this battle against SBT, and I am hoping language rehab will soon be a thing of the past. But as I have learned, friends and family provide the constant source of strength I need in my life, whether or not I am in language rehab. So if you see me out somewhere, and we strike up a conversation, and I pause for a moment, wait. My words are forthcoming: They are on the slip of my tongue.
*Schulman, Helen. “First In Her Class.” The Friend Who Got Away. Eds. Jenny Offill and Elissa Schappell. New York: Broadway, 2005. Digital Print.