Thirty-four bottles in all line the top shelf of the desk where I am typing right now. Omnicef, Levaquin, Septra, Minocine, Flagyl, Rifabutin, Adderall, Paxil, Neurontin. Orange relics of my disease, plastered with red and yellow warning labels. Do not crush. Do not take on an empty stomach. Take with a glass of water. May cause dizziness. It is an endless, regimented waltz of pills, like those dance marathons in the 1930s where contestants were competing for a decent meal and some cash to live on but instead had to be carried off on stretchers from exhaustion.
My case of chronic Lyme Disease is not really as serious compared to other people's. I at least have some hope of relief from the monthly cycles of poison ingested into my body, others are not so fortunate.
The next question that usually follows when people find out I have Lyme: “Well how long have you been sick?”
I force a smile and answer politely, but sighing inwardly I know the series of questions which will follow, simply because no one knows about Lyme Disease. I have had Lyme for thirteen years, but I started treatment three years ago. I am twenty-three this year.
My body was going downhill so quickly, chances are I would not have lived to see my 30th birthday. Why didn’t I realize my steady demise? Because Lyme patients start thinking that the current state of misery is normal. Most of the time, the change is so gradual. Pain becomes a routine, and the fatigue as steady as five o’clock traffic.
Inevitably to follow are the two questions I hate the most: “What exactly is Lyme Disease?” And the loathsome “What are the symptoms?”
Even now I am staring at the screen, my fingers gently brushing my keys, hoping maybe the word processor will make words appear on its own, so I don’t have to come up with a response. Don’t get me wrong, I am not offended by people asking, I only hate these questions because the answers aren’t simple, and they usually only generate more questions.
BUT people need to know.
Living with Lyme Disease is like driving in the densest fog imaginable. Fog so thick that it might as well be nighttime because the headlights aren’t even penetrating the mist. Oh, by the way, you feel like you are wearing lead bracelets on your wrists all the way up your arms with matching lead ankle-weights to the thigh and one of those fancy lead vests that dental hygienists put on you before x-raying your mouth. Those might be bearable if you weren’t wearing a lead skull cap that’s causing the nerves in your shoulders and neck to pinch.
Let’s just concentrate on the driving in this thick fog. Gosh, you’ve driven this road a hundred times, but you still can’t remember how to get to… “Wait where am I going again? Was I going to the store? Or did I just come back from the store? Wait, where are the groceries?”
Living in this type of fog all the time is so frustrating. All the energy you can muster is devoted to surviving because in real life, this fog is in the house, it’s in the cubicle at work and in the frozen food section of the grocery store. It can never be escaped because it is a state of reality. Forget writing or thinking philosophically, getting out of the bed is your new creativity.
Doctors have it partly right when they tell Lyme patients it is all in our heads… HA! I just want to reply with, “You’re darn tootin’ it’s in my head… NOW GET IT OUT!”
I don’t have very many memories of my adolescent years because I was so sick (maybe that’s a blessing). Don’t misunderstand, I do have memories, but they are vague and I don’t remember specifics of the situations. It’s great for bad memories— but it really sucks that I can’t remember anything about being Anne in my community theatre’s production of Anne of Green Gables or of my surprise sixteenth birthday party. I have snapshots in my head, that’s it though.
My emotional state through my teen and early college years bounced around between complete numbness, pins and needles depression, and volatile fury (affectionately known in the Lyme community as “Lyme rage”). Lyme caused me to gain 35 pounds in 6 months when I was in seventh grade, which put me further into depression. I played three sports a year—basketball, soccer, swimming—I was incredibly involved in the theatre, took voice lessons, was a lifeguard, was active in my church: most girls my age would be thin and fit.
The truth is I’m still insecure about my size, but I also realize that I’m not the only woman that struggles. I look back now at all of my “fat” pictures and think “Oh my gosh, I look sick in these pictures.”
Lyme gets into your brain and causes an unreal emotional sensitivity. I was a raw nerve that experienced every negative word without a buffer, like sandpaper on a burn.
I don’t even want to begin to describe the rage because I have done so many things in rage that I regret, I mostly just hate who rage makes me become.
Say you’re driving that car again, but this time it’s on fire. You don’t care though—You floor it. Lyme rage is reckless, barbaric, and has no mercy for the damage that it causes. I have said words to my mother and my brother that I can’t take back, words that I literally would give a pound of flesh to be able hit the delete button.
This sad story has taken a turn for the better, though I could continue on for a number of pages on the terrible things that have happened to me. I got to a point where I couldn’t read. My school had to order a special program for me to get my textbooks on audio, like they do for blind and dyslexic people. Not being able to read is a death sentence for a writer. But here I am weaving this story of hope by the grace of my Creator (the most ingenious author of all), the wisdom of a brilliant doctor, and disgusting poisons that kill the disease in me.
Wednesday morning two weeks ago, in front of the entire student body, one of my teachers, Dr. DeCiantis, called me up on stage to receive an award for achievement in editorial excellence. She was my advisor for our school’s literary magazine, which I was the editor-in-chief of last year. In front of everyone, she listed nearly ten major achievements I had accomplished, including starting a writer’s conference at our school and developing a training program for the future editors of the magazine. I was the first editor to ever receive this award. My professor placed a wooden plaque with a red engraved face into my hands. I actually jumped up and down and squealed in front of a thousand set of eyes. A laugh bubbled up from the crowd, but then a thousand sets of hands clamored. They could not possibly know the entire magnitude of my accomplishment.
When I read this story to my roommates, one of them asked me, “Do you wish you didn’t have Lyme? Like, do you see other people and think, they have it so much better because they aren’t sick?”
I replied with, “No, because my Lyme disease doesn’t define me.”
The more I write, the more I realize with great conflict comes great resolution. The more pain and heartache, the more blissful the reward. I wouldn’t trade being sick for anything. I have had the opportunity to empathize with those who are truly afflicted. Being able to say “I know” and really understand is a gift, and being able to say “There is hope for you” is a blessed responsibility.
Through this sickness, I have become part of the Lyme community, where our common struggle has woven a deep since of sympathy and an unbreakable cherishing of life. No, I wouldn’t trade that for anything.
-- Lindsay Culbert, South Carolina