Coping

No Small Thing: the beginning

January 27, 2017

Conjuring fantastical worlds and grand adventures was how my brother and I spent many summer afternoons. To escape the droughts of the 1980s and a rather isolated existence on the prairies, our imaginations took us to a different place each day. The Caragana hedge became a dense jungle where we fought off a patrol of Viet Cong (Derek and I were obsessed with Vietnam War vet, Magnum PI). The yellow bean pods that hung from the branches became hand grenades, easily plucked and thrown at the enemy. Another day we crawled through a ditch, or ran over crunching dried, golden clumps of prairie grass, kicking up fine dirt as we escaped lions who stalked us on make-believe safaris. Some summer afternoons we fished with our great uncle and great grandmother at the pond, a lone body of water near our farmyard. Of course, the small pond became an ocean and we, deep sea fishers. Though far from a Norman Rockwell painting, a typical childhood in the 1980s country life was idyllic in some ways. Slowly this painting of imagination and family gatherings and youthful adventure became sullied, darkened by the unknown. Long-living, German, Protestant hardiness coursed through our veins. What was also coursing through our veins was something “new” and unseen and much more dangerous than the lions, human enemies, and sharks of our imaginations. This unseen guest was slowly attacking our bodies and minds, stripping us of our hardy genetics and ability to survive.

At age five, during one of these afternoons of play in the prairie grasses and Caragana wind shields, a tick bit, then burrowed into my neck; its presence undetected for many hours, perhaps even a full day. Starting as the size of a freckle, it grew from engorging on my blood. While feeding, it also regurgitated multiple pathogens into my bloodstream. My mom noticed the tick as she swept up my hair into a ponytail. Ticks were not uncommon, and though worried, my mom simply removed the tick and explained what she knew of such an arthropod. I was fascinated that it could not be squished or easily killed. My eyes widened as Mom lit a match, holding the tick between tweezers she passed it through the flame. A pop sounded and the tick was killed. I ran back outside to play. The bite was never mentioned again. A terrible “virus” that occurred months later was never associated with the rather un-eventful tick bite. The onset of headaches and fatigue was related to asthma and hay fever. Dark circles grew under my eyes, and I developed pneumonia each spring. Years later, after severe symptoms, much heartache, research, dead ends, and pleas for help it was discovered that I had been infected with Lyme disease.

With each passing year more symptoms emerged, and were explained away. I learned to work harder, to push myself further. Excelling in music and school and chores took three times the effort it should have. I learned to hide the pain, not mention the tinnitus, quit gasping for air so obviously. I was a mess by college, though somehow disguised it from even the closest of friends. Before hearing the term “brain fog,” I suffered from it. There were days the short drive to campus eluded me. I did not trust myself at intersections. Deciphering between green lights meaning “go” and red lights meaning “stop” required much concentration. I would have to reread paragraphs in text books and articles multiple times and take notes in order to comprehend the message and intent. My first year of college became so overwhelming that I could not comprehend returning the next year. No one knew the true reason. I put on a smile and plucky attitude, conversing in the cafeteria and being sociable in class and group projects. All the while I felt my sanity slipping.

I had to drop out. A year of living at home and resting allowed me to return later. I did earn two university degrees, but I couldn’t work at the same time. I didn’t party with my peers. I went to class, researched, and slept.

Numerous doctor visits resulted in more and more tests and more and more shrugging of shoulders. Everything was suggested from depression to cancer. None of these were accurate and no proper diagnosis was given. Most doctors were just angry when they could not solve the mystery and asked that I no longer make appointments with them. One doctor said my jaundice was from eating too many carrots and yams!

More time passed. Marriage, sick leave, new jobs. Months of “remission” from this unknown plague and then torturous months. Because tests were always negative and no one could measure my pain I learned to live on coffee and Advil and no sleep. Until my body gave out.

During one of my seizure and pain-induced days in bed, before the trip South and the Lyme diagnosis a memory flashed in my mind. I was transported back to the farm of my childhood. I remembered watching barn spiders, fascinated by their web-spinning. One summer we found a beautiful white spider hanging outside the entry door. We called her Charlotte. We didn’t capture her in a pickle jar like the others. We watched, fascinated, as a fly would become entrapped and struggle against the sticky threads of Charlotte’s web. Charlotte watched from her corner, the fly would capitulate in time. She need not act quickly. Charlotte was patient, waiting hours before slowly draining the fly of its life then eating her silken orb to be recycled into another trap for an unsuspecting victim.

We had no fear of spiders then. In fairness, it wasn’t one of these large barn spiders that brought me down, but one we could barely see, the size of a poppy seed. The tiny enemy grew and grew and then infiltrated every part of my life. It caught me without spinning a web, or capturing my fascination with intricate designs. In some ways, the tiny enemy put me in a jar and fed me to the wolves.

Sometimes I see myself as the fly, struggling to escape the sticky web. Finally one doctor in the small town in which I now live said, “Something is definitely wrong with you. I can see it in your blood work, in observing you. I believe you are very sick but there is nothing more available to try in Alberta.” I was thrilled. Someone believed me. Someone was confident that I was sick and needed to seek help elsewhere. Someone gave me permission to quit feigning strength and fly South. Up to this point every appointment was a fight against the entrapments of politics and tradition and ignorance.

I was pulled out of the web of deception just in time. Phone consults with American specialists began, and through these “appointments” it became apparent I likely had Lyme disease and many coinfections. I booked myself into a clinic with my doctor of choice. She did not allow the life to be sucked from me or the truth to be drained from my veins. Over many years of intensive treatments I am slowly recovering. I may never fully return, parts of me are gone forever, robbed away by the tiny tick. Travel with me on this blog as I discuss what worked, what didn’t; what to spend money on and what to save money on; and how to cope with scary and ongoing health concerns.

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2 Comments

  • Reply Janet Grabner February 5, 2017 at 11:04 pm

    Hi Jillian, I hope you are well. Haven’t seen you around town but think of your often. Say Hi to your mom! Janet

    • Reply Jillian February 6, 2017 at 3:33 pm

      Hello! I am kind of hibernating lol. You will see me when spring arrives. My mom is doing really well and I am sure she will drop in to see you during SpringFest. Thanks for connecting.

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