Prologue: A Lyme Patient in the Making





It all started with a virus. The year was 1998, I was 17 years old, a Junior in high school just starting out my first semester when I came down with a headache unlike any other I’d ever experienced nor could ever forget. Accompanied by flu-like symptoms and tremendous aching joints led me to the doctor that told me so. A conclusion he had come to based on a negative test result for Lyme.

I waited through it for over a week before it abated and was more than relieved when it had gone. Ha - I even remember attending one of our outdoor high school keggers the weekend after I felt well again, and thinking to myself (in a strange, giddy way), "God it is SO nice to feel normal again!!"...

Unfortunately, it didn’t take but three months later for me to realize something was seriously wrong. It seemed like overnight I developed an unexplainable fatigue that would not go away. In school one day, climbing the stairs to my next class left me breathless, and, much to my surprise, had my heart skipping beats from the exertion of it.

I tried to push it aside, but when warming up for a volleyball game the following day almost led to me collapsing on the floor, I started getting worried. My worry quickly turned to downright horror as I awoke the next day to see long red rings and egg-sized bruises randomly scattered over my entire body. Immediately I went back to my doctor again who seemed rather dismayed by what he saw, prescribed me an antibiotic (doxycycline) for a two-week period and waited for a blood test to come back that would indeed confirm that I had Lyme.

Prior to this, I had been a normal teenager - robust and full of life, so when I started to feel like myself again only a week or so after taking the antibiotics, I threw the bottle out along with the remaining pills in it (Stupid! Stupid! Stupid!), resumed my life, and thought nothing more of the matter.

The years went by easily after that, or so I thought. I noticed that any time I was overtired or if I had too much sugar, coffee, or alcohol that my body would react in a strange way.

I remember driving home late one night after a long outing with a team from the community college I attended that helped the homeless. We had handed out clothes and food for them in New York City earlier that evening and I didn’t end up driving home until well after 2am. As I drove, I felt disorientated, had an annoying headache, and realized that it took my body just a second too long to register and respond to my command to turn the wheel.

I was alarmed but thought a good night’s rest was all that I needed. Once I finally got home, and into bed, however, I noticed that when I closed my eyes, the room started to spin – almost as if I was drunk, and there was some strange racing chatter going on in my head that I could not control... Eventually I fell asleep and was relieved to feel much improved in the morning.

Now, In order to pay for college during this time, I also had a part-time position working at Memorial Sloan Kettering Cancer Center for nearly two years as an Administrative Assistant to the Director of the facility. There was a small branch located at Phelps Memorial Hospital in Sleepy Hollow, NY, which was conveniently placed a few miles from where I resided.

During the days I was at work, a profound fatigue would overcome me in the afternoons that only let up if I rested. Because of this, I got special permission from my boss to nap in one of the empty medical rooms during my lunch hour.

I only mention this because I oddly recall that as I lay there, right before I fell asleep, the room would start to spin again and behind my closed eyelids, bright flashes of light would rapidly and continuously appear before my mind’s eye. Sometimes, even when I opened my eyes, the dark room would appear to be doing the same.

I couldn’t explain it and when I tried to talk about it no one could relate, so I simply ignored it and went on with my life. Which was fine with me, besides these strange bouts of weirdness, I was rather happy. Who wouldn't be - I was young, enthusiastic, convinced I had found the love of my life, traveled often, and rode horses as much as I could. I thought the life I had would last forever...

I couldn't have known then that things can change with every breath we take, but for me, that change would come in early fall of 2002...




1 comment:

  1. I remember when you sent me the first draft of the beginning of your story. I remember our conversations about you continuing with the story and contemplating whether you thought people would listen or care. I am so proud of you and allowing the World to hear about your life.....you are a remarkable person and I love you.

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