In northwest Indiana, where I have raised vegetables for 20-odd years, mosquitoes flourish when rain fills the swamp pools in the backwaters of the Kankakee River.
In August 2004, those pools spawned a particularly righteous throng. One afternoon, they found me. I had unzipped my bug-protection hood to write some notes about what I was planting. Bitten sharply on the chest, I slapped and missed. Then I was lanced on the left temple. That was her last act. The gangly bug lay flat on my palm — and so began my odyssey into the world of West Nile that even eight years later is not entirely concluded.
The Centers for Disease Control and Prevention says this year is the worst summer for West Nile virus since the disease arrived in the United States, probably in 1999. If so, my tale is a cautionary one.
A week after being bit by that mosquito, I was at a cooking conference in Vermont, working 10-hour days cutting vegetables, joking around the kitchen, making new friends. The third day, I woke with a fever and ached deeply in my bones. I figured it was a bizarrely ferocious flu.
Two days later, I had a temperature of 104, was losing the ability to walk and suddenly realized that I could not move my left arm. The friends who drove me to the hospital had to all but carry me into the emergency room. Within two hours, I had been X-rayed, CT-scanned, MRI’ed, and spinal-tapped. The tests showed extremely high white blood cell counts. There were lesions on my spinal cord, and the virus had caused my brain to swell: I had encephalitis.
As the doctors theorized about Lyme disease or a rampant herpes virus, I remembered that vicious bite of 10 days earlier and placed my bet that it was West Nile. Sure enough, there were West Nile antibodies in my spinal fluid, and the doctors put me on a serious regimen of steroids and antibiotics. Within a few days, both arms were flaccid and my legs began to fail me.
My wife and friends were at my side, but I recall little of those first days other than being stunned by this new life situation. I’d had sports injuries in the past but had never been in a hospital, rarely visited doctors and secretly applauded myself on my innate good health. Now, I could barely move. I was a spry 47 year old and could barely move. Adding to that, the medical community seemed to share the same sense of bewilderment I felt. There was no regimen of pills, no shot, no miracle cure.
The nurses became my heroes. I lived in a new world of urinals and wheelchairs, sleeplessness and a slide into more paralysis. All I had to rely on to deal with my new condition was my sense of humor and truisms that my father had cheerfully passed on to me and my siblings from his Kansas childhood during the Depresssion: “Nobody ever said life was fair” and “A little rain must fall.”
The virus, or my own immune system’s punch-drunk response — the doctors weren’t certain — was still killing nerve cells. Pain was rarely a big problem, but the illness was doing me in quietly and stealthily.
My physical therapy was canceled because I could no longer walk. My farm muscles were melting away. As bones settled and ligaments let go, my hospital bed became a rack where I found no comfort. Sleep came a few hours at night, medication useless.
The lowest moment came during an attempt at showering a few weeks into my illness. A sweet and tough older nurse was trying to spray me down when I slumped off the shower chair, feeling so weak that I asked to return to bed. As I passed a mirror, supported in her arms, I saw the shrunken person I was now. I remembered my father’s body ravaged by cancer: spindles for limbs, a pathetic little belly, eyes shrunken and dull. I lay there and cried off and on for the next few days.
I lost 40 pounds during that first month, though they fed me double rations. I began to feel real fear.
The anterior horn nerve cells at the top of the spinal cord that controlled my muscles — the same cells attacked in polio and Lou Gehrig’s disease — were dying. My body was so unsupported by tissue and muscle that my shoulders threatened to dislocate. My arms flopped over the side of the bed. I could barely speak. My lungs struggled in my sallow chest.
It seemed incredible: A persistent mosquito had followed nature’s prerogative and brought me to this. According to the CDC, the disease first identified in Uganda in the 1930s had traveled thousands of miles within a bug and alighted in New York 13 years ago. Birds became the vector for the virus, migrating and spreading disease throughout the country. This summer, the virus has sickened people in nearly every state.
Feeling as if I had failed my caregivers, my family and myself, I focused my hopes on getting to Chicago and its world-renowned rehabilitation hospital. Chicago was home when I was not on the farm, and I had all the resources of family and friends there to count on. By mid-September, after five weeks of treatment brought no improvement, I was flown out of Vermont by air ambulance and started rehab the morning after my arrival.
A therapist strapped my hands to a sort of elevated bicycle wheel that I was supposed to crank, and she moved on to other patients. I still recall the look of surprise and muted frustration on her face when she returned a few minutes later to find my arms fallen uselessly out of the contraption, the flaccid muscles hopeless for this mode of therapy.
I was in the post-polio division, tended to by neurologists as famous as world-class athletes and by nurse’s aides who fed me, cleaned me from stem to stern and taught me not to buzz too often, especially at night. My siblings flew in to visit, sit by my bedside, read to me and roll my wheelchair to the park down the street. My son, 11 at the time, and my wife bravely endured, willing me to keep my spirits up, feeding me on little doses of love, salted with humor.
I fended off the psychiatrist obsessed with putting me on antidepressants and overruled proposed 3 a.m. shots of blood thinner that was supposed to keep me from dying from a blood clot. There was no real therapy, just visits from young and shiny residents intrigued by my strange, slowly deteriorating condition. My doctors were stymied and began planning to discharge me — in theory, to somehow gain the strength at home to return for therapy.
Then my older sister, a scientist and Internet bloodhound, found a new source for information and guidance: a doctor in Jackson, Miss. Neurologist Arturo Leis of the Methodist Rehabilitation Center had treated as many cases of West Nile as anyone in the country. She persuaded my reluctant doctors to consult him.
And then I heard Leis’s voice on the speakerphone explaining that I should no longer be getting weaker as a result of the virus alone and that my symptoms suggested that some secondary, dangerous process was killing more nerve cells. He advised massive doses of IV steroids. My doctors quickly agreed, wordlessly forgetting their plan to send me home.
It was autumn when I finally left rehab and saw Lake Shore Drive again, sitting in my wheelchair aboard the ambulance taking me home. The lake was bluer than I remembered amid the sere of late summer, with yellowed grass and tumbling leaves. My wife and son were waiting, soon joined by Bouma, a towering man from Mongolia who for months would be my caretaker.
The steroids brought the first, timid signs of recovery. Faint nerve signals moved muscles even as I called myself “baloney on a slab” and knighted my useless left hand “the claw.” I still could not sleep, overspilled my urinal nightly and came to understand more plainly the value of an enema.
My son said a soft goodbye each day on his way out to school. I would cry sometimes when he left, trying instead to think about my father’s homespun admonitions, my wife’s constant efforts to help me heal and the underpaid heroes who had tended to me in Vermont and Chicago.
I started outpatient therapy and saw an acupuncturist whose needles and herbs rallied my hope. And then one December night at home, in a foul mood, I demanded that someone help me out of my wheelchair — and jerked myself up and tottered a few feet to the table. I started to be able to walk again.
As uncalled and silent as the virus when it crept in, so my recovery began.
The mosquitoes are still multiplying in the heat out in the country. Hurricane Isaac’s remnants provided them with one final birthing bonanza before their demise in the season’s first hard frost.
The CDC, meanwhile, advises that immunity to West Nile for those who have been exposed to the virus should, in most cases, be lifelong.
Although I have regained fairly robust health and returned to farming, my left arm has little strength and my shoulders and upper back have only half the muscle they had before 2004.
I visited Art Leis in Mississippi about five years ago. He tested my nerves and muscles, evaluated my whole history, and stated that my case of West Nile was one out of 30,000: I had been too healthy to get so sick, I had been too sick to recover so well. There was still no certainty as to whether the virus alone ravaged me or whether my own immune system had joined the attack.
Of the more than 3,500 cases of West Nile reported to CDC in this record-setting year, a little more than half developed into encephalitis, meningitis or another disease classified as “neuroinvasive” such as mine. All these years later, I continue to recover, feeling my shoulder blade reattach and surprising myself by sprouting a miniature triceps on my left arm.
Strange as it might seem, because of all that I have learned about myself and my place in the world — where I have been carried by strangers who became heroes and by family and friends — I would not trade these lessons even to be made whole again.
When he’s not working on his organic farm, Shane is a chef in Chicago.
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