In 2001, I was a single woman living in Minneapolis and about to turn 28. I had just been accepted to graduate school and gave notice at my job as a social worker. But on my last day of work my doctor called. I had been suffering from dizzy spells and vomiting for three months. An MRI revealed a mass on my brain, and I was diagnosed with a benign brain tumor. Doctors performed two surgeries on my brain: one to implant a permanent shunt for drainage and another to “debulk” the tumor.
I did not react well to the medications I had to take; the smallest dose of steroids for brain swelling made me like a zombie. One doctor told my mother, “You need to come to grips with it. Your daughter just isn’t right.” He probably meant the steroids were affecting me more than the average person, but to us his words dimmed my belief in a bright future. But in the midst of medicinal fog I listened to a small, quiet voice inside of me say, “There’s hope.”
After I was discharged from the hospital, my parents brought me to live with them in their rural community of 100 people in North Dakota. I had lived in the bright lights of the big city for over nine years, but I liked small-town life, and the solitude assisted me in recovering a sense of self. Within a month I no longer needed medication, or physical and occupational therapy, but I continued to meet with a speech therapist. Week after week I flunked his memory tests, and the failures threatened my sense of hope. Then, two and half months into our meetings, I remembered an article on learning styles. I had read it years earlier and tentatively shared it with the therapist: “You’ve tested me with auditory questions, but I’m a visual learner. How about a different test?” He dug into his files and quizzed me using questions he had never utilized previously. I earned a perfect score and voiced my new confidence. “Thank you. I no longer need your services.”
I eventually moved to California and began graduate classes in theology and culture. My grades were good, but after I made yet another odd mistake in class, someone asked me, “Were you like this before your surgery?”
It’s true; I’m not the person with the same abilities that I once was. Sometimes it takes me longer to recognize sarcasm, and I miss my quicker wit. My sense of timing and visual perception make it difficult to safely drive, and when I lean down to tie my shoe I sometimes bump my head, not clearly seeing the corner of the table in my way. I tell myself after these experiences, “I’m going to focus on my abilities, not what I can’t do.” Last year I earned two master’s degrees from Fuller Theological Seminary—one in theology and one in intercultural studies.
Two years ago my neurosurgeon informed me that the tumor had regrown. I needed to have another surgery as well as radiation treatment weeks afterward. I thought about the people I knew who had gone through multiple brain surgeries and their daily challenges. I thought about my gray matter being exposed to oxygen and a knife yet again, and the uncertainty of the outcome. And I prayed for a miraculous healing that would swoop me away from the nurses prepping me for surgery and the nauseating recovery. Instead of my prayer being answered the way I wanted, a memory from Sunday school came to mind: the son of God crying, “My God, my God, why have you forsaken me?”
I’m not the only one to go through this, and I’m not the only person to suffer in the midst of expert statements and optimistic smiles. Today it is all too common to hear, “How could he be sick? He’s the picture of health,” or read a friend’s blog saying, “Jon’s second round of chemo is going well.” The numbers of friends and colleagues facing physical crises is alarming. I’ve known 10 people with brain tumors, and, sadly, I’ve attended five of their funerals. It has been important to grieve the absence of their voices and gifts in this world, what might have been if they had lived. It has also been important to celebrate their words, which continue to speak into my life and the lives of those around me.
At a wedding recently I met a young man with Down syndrome. He was high-functioning and articulate, and I genuinely enjoyed talking with him. After chatting about how we knew the bride and groom, he said, “Most people don’t listen to me, but you do.” I didn’t expect him to say that much, or to have such a well-placed finger on the pulse of my intentions. But the statement summarized my approach to life, the way to get through it all day by day. Each day we are given is an opportunity to seek out voices of clarity regardless of expectations and appearances. That’s how I survive and how I plan to face the next comment, normal or not.
