It appeared suddenly. Blackness blotted out my vision. A moment before, I’d focused on the cards that I held. Now I was blind. Then–like a puppet with its strings cut–I slumped over the table paralyzed. Time stopped. “Call 911!” a poker player shouted. Stunned, a resigned bitterness took over. “So this is how it happens. I’m havin’ a stroke, and I’m dying.” A siren approached.
Examining my brain scan, the emergency room neurosurgeon announced gravely, “Well, you didn’t have a stroke, but you do have a brain tumor–about the size of a golfball.”
I heard his words, but couldn’t comprehend their meaning. I only wanted to return to the game so I could finish the hand I’d been dealt. In a way, I guess I would.
THE TUMOR
There were more surprises. Surgeons removed skull and began probing. My brain swelled. I awoke in intensive care with a garden hose down my throat. It breathed for me. To allow for swelling, a section of skull had not been replaced. I felt like I had an ax buried in my head.
A blurry face hovered above. “Bill,” the neurosurgeon explained, “we’re not sure what happened; we had to stop. I know you’re hurting, but we can’t give you anything. It might cause more swelling. I’ll check on you again later.”
THE SURGERY
By morning the swelling subsided. They began again. The first operation preceded five more. Some vision returned, but only hazy shapes. Shaved bald, Frankenstein scars stretched from the nape of my neck to the top of my head. Between surgeries, I was mugged by spinal meningitis. Like the tumor it took over suddenly. I was too exhausted to be afraid. Paralyzed, my speech slurred. I drooled.
Indignant to the surgical intrusions, my brain short-circuited. I had seizures. Medication made me spastic. Jerking uncontrollably, I was strapped down. Completely helpless, having long ago dismissed the God of my childhood, I felt utterly alone. As far as I was concerned, my life was over. I began vomiting. Without warning, my last meal would shoot out of me like a scene from The Exorcist. Mysterious pains struck randomly as if some alien beast were trying to exit my body.
The tumor blocked a passage connecting my brain and spinal cord. Spinal fluid seeped into my skull, but couldn’t drain. Trapped, the fluid crushed my brain. The strange pains and vomiting were alarms. The next morning, I was awakened by a man with a knitting needle on a small tray. He had come to do a spinal tap. Spinal taps siphoned fluid, relieving pressure. For weeks, while gainin strength for the next surgery, I was awakened each morning by a man with a knitting needle on a tray.
By the sixth operation, the tumor had been removed. To relieve the continuous accumulation of spinal fluid required surgical plumbing. A tube was inserted into my brain and threaded beneath my skin; the other end was inserted into my stomach where fluid drained. Seasons changed. I progressed from bedridden, to wheelchair, walker, and finally, a cane. The day to leave the hospital arrived. I could only think about the raw deal that life had dealt me.
THE RECOVERY
At the rehabilitation facility, no-nonsense counselors didn’t indulge my self-pity. Surrounded by patients with a menu of life-threatening conditions, my self-pity wasn’t tolerated. A counselor began the group session, “Bill, how are you?”
I mumbled something about how life had wronged me. He seemed amused. “Bill, ‘sympathy’ is in the dictionary between ‘shit’ and ‘syphilis.’ Now who else wants to talk?”
I was appalled. Seated among those recovering from serious conditions, I wasn’t special. To help adjust my attitude, each day I was to list ten things I was grateful for. Insisting my glass was half-empty instead of half-full, my list remained blank.
The problem, of course, was me. As long as I insisted on sucking on my thumb, counselors always seemed willing to help me choke on it. One later explained, “Bill, if we’d given you what you wanted, you would have drowned in self-pity.”
Weeks passed, my body detoxified from months of medication. Without a chemical cushion, self-pity gave way to fear. I was afraid of the future. Only days from discharge, I gazed through the window into the unknown and asked for help.
There were good reasons to be afraid. Before the tumor, dead-end jobs supported a lifestyle of immediate gratification and self-destructiveness. My philosophy of life had the depth of a beer commercial.
THE FUTURE
At my sister’s suggestion, I nervously registered at a junior college while wondering if I was too damaged to cut it. Years before I’d failed out of a community college. This time, attending school with a different attitude, and without a hangover, I enjoyed learning. The first time, college had been a bore–nothing interested me. This time, everything did.
Although I continued to progress physically, I needed help emotionally. A counselor suggested I join a support group for those with life-threatening illnesses–not to benefit me, but to help others. Their problems brought perspective to mine.
The healing that came with serving others was the help I’d asked for. As a member of a student organization aiding people with disabilities, I realized a fulfillment different from academic achievement. Paradoxically, the more I did for others the less I thought about me, and the better I felt about myself.
The person I’d become bore little resemblance to the person I’d once been. A peculiar, personal “intellectual spirituality” took form. Reading voraciously and omnivorously, quantum mechanics, philosophy, astronomy, history, I sought ways to understand. I was enchanted by the process. And Walt Whitman suggested to me that God was a journey.
Philosopher Paul Tillich’s observation that the concept of “God” was not necessarily “A Being” but rather “Being itself” helped me reframe rejected childhood beliefs. As a youth I had rejected someone else’s dogma, one perspective. There were many: American Indians, shamans, Taoists–a buffet of beliefs. I’d assumed what I’d been taught was all there was.
I began to notice simple things: my cut finger healing, a spider weaving its web. I gazed at stars knowing that I consisted of atoms originating in dying, exploding super novas. Thermodynamics revealed that nothing is created nor destroyed, but merely changes form. Water could be liquid, solid or gas depending upon conditions. Einstein described energy and matter as interchangeable.
LOOKING BACK
This journey’s not been flawless. There have been detours and disappointments. Most telling were my father’s death, and the end of an engagement. I expect others. Most of the time I’m grateful for what I once took for granted, reminding myself that disappointment is re-direction. I talk to this “God whose name I do not know.” Thanking, not asking.
My GPA literally doubled what it had been years before. By graduation, I’d received a dozen scholarships and awards. The University of Florida offered a fellowship.
Had someone predicted any of this a dozen years before, I’d have questioned his sanity. Today I struggle with my dissertation at The University of Iowa’s Rehabilitation Counselor Education Ph.D. program. It’s been hard work, and I still wonder how I’ve accomplished it.
But should I also take credit for my heartbeat? For being born into a supportive, caring family? Einstein once observed that the most beautiful encounter was The Mysterious. Although it remains a mystery why I developed a brain tumor, it seems that is the best thing that ever happened to me.
Bill Asenjo, PhD candidate, CRC, Rehabilitation Counselor Education, The University of Iowa