Today, April 12, 2011, I started treatment for Lyme Disease. A friend of mine asked me to blog this experience as a ministry for others in my situation. I have waited 16 years for this day.
In the early summer of 1995, I attended a bridal shower for a dear friend. It was just us girls, a group of us that had grown up together. We were all in pretty summer skirts and sandals. Our host had picked a beautiful, lush woodland spot for us to gather with picnic baskets and gift the soon-to-be blushing bride. She was beautiful and radiant. We were all beautiful and radiant in our young 20-something selves. Sigh.
Then I happenned to glance down and see something black and ugly between my toes.
EEEEUWWWW!
It was a tick. Well, I pulled it off and went back to being beautiful and radiant as best I could.
Now, the next day, I inspected my toes and found that I had not quite gotten all of that tick out of my foot. But, knowing, now, about Lyme's Disease and how teeny tiney those pesky deer ticks are, I have come to think of the tick between my toes as a subterfuge, a distraction, a decoy. For the next weekend, along with the flu, I had a red, round, raised and ever expanding and thinning rash on my left knee. That's right. The infected tick latched on and got his buddy, Mister Obvious-tick-between-the-toes, to distract me from his purpose. Some may find me silly for thinking of the ticks as organized, but I'm telling you now, there is a conspiracy. Otherwise, I wouldn't have dismissed this rash as nothing because it was in a different spot than where I had found the decoy tick. I would have gone straight to the doctor. At least, I'd like to think so. I'd like to think that I wouldn't have dismissed and forgotten something that was to have such a profound and devastating impact on my life. How heartbreaking. How heartbroken. Stupid tick.
So, that was the beginning. A few months later, while I was playing Polly Peachum in The Beggar's Opera back at school, I woke one day on Thanksgiving Break with a horrible sore throat and huge blistery bumps back there with opening night just a week or so away. Off to the emergency room. I had forgotten all about the tick bite. I had forgotten all about being in the woods with flowered dresses and sandals. They did some tests and said I had mononucleotic cells. These could be from Lymes's disease ("Do you remember any tick bites?") or, and this is more likely for a college student, mononucleosis. So, there I was, about to begin tech week, in close quarters with a cast of 20+ people and supposedly highly contagious. But, my boyfriend did not get mono. My roommates did not get mono. The person playing opposite me did not get mono. No one did. I would very much like to think that I would not have forgotten something that was to have such a profound and devastating impact on my life. How heartbreaking. How heartbroken. Stupid, stupid tick.
They said I would be tired for a month and then feel better. There was nothing they could do as mononucleosis is a virus, you see. The month came and went. And another and another. I waded through my last semester at school. My teachers and friends kept sending me to the infirmary due to my seeming inability to just get up and do stuff. The infirmary kept sending me to a psychologist. The psychologist kept telling me to see a doctor. During this time, I also learned and put into practice a rotating stock of excuses for extended bathroom breaks and plungers.
I remember trying to audition for graduate vocal studies. I would fly to the school. Will myself through the audition. Fly home and not be able to walk very well. I would go from bench to bench taking 2 hours to get from the gate to my car. But, fortunately, my cbc was completely normal, so the doctors were able to comfort me with the knowlege that I was healthy.
I graduated magna cum laude, went home and went to bed for a few weeks until it was time to go to Rome. I had auditioned and won a small part in an opera festival months before. I got through the festival ok. (Papagena in the Magic Flute - very fun, only one scene!) Afterwards, I took a bus tour of Italy to see some sights. If you've ever been overseas, you know that not every culture feels the same about public bathrooms. If you've ever been on a bus tour, you know that the retired people on the bus are in a hurry to get to the next stop so they can rush around for a few hours and get back on the bus. I did my best. And was very, very glad to go home and go back to bed which was very near a very nice toilet.
The following year saw fluctuating energy levels, a gradual decline in concentration and memory. However, I did manage to fall in love and become engaged. I had changed my track to psychology since I didn't have the energy to be on stage anymore or a quick enough memory to recite lines and remember lyrics. I thought I could just sit in a chair and help people. That would have been nice. I started out really well. I impressed my teacher with my Psychology GRE score and my talent for statistics. I had just enough energy to walk to class, to the library and back to my car. However, I started needing incompletes because I couldn't write the paper. I couldn't figure out which order to put the ideas. I couldn't read anymore. I couldn't do two finals in two days. I couldn't retain information. I just ... couldn't. So, I told everyone I decided not to do graduate work in psychology because I was getting married. But really, I was just too tired to move all of my stuff to a new school, and I wouldn't have been able to do the work anyway.
I had always been the creative, on-the-go type. I would miss things or be forgetfull because I was doing so much. But now... now began the time of being forgetful and making mistakes and not realizing I had made them until someone was very angry with me. And not being able to fix them. And not being able to avoid them. Living with an illness that takes your mind is learning to be fallible in a way that forces you to accept yourself no matter what. Failure to make this transition leaves you with nothing but loss.
Anyway, there were ongoing medical inquiries. Do I have Asthma? No. Do I have Lupus? No. Do I have Cancer? No. Is it Genetic? Who Knows? Do I have Lyme's Disease? Noooope. At the same time, I became rather unhinged mentally at times. This was very comforting for my family as they were able to reassure themselves that I was a hypochondriac-mental case and they didn't need to worry about something being really wrong with me. If you have a minute, google Lyme disease and psychiatric symptoms. Hmmm.
So, here I am years later. (sob) I am sick every day. (double sob) My husband stopped looking me in the eye years ago. (sob squared) I am no longer magna cum laude, but I celebrate if I can follow a recipe and make only one mistake. My youthful visions of how I wanted life to be, what kind of person I wanted to be, what kind of friend, wife and mommy I wanted to be are largely unfulfilled. Perhaps, I would have felt this anyway. Perhaps, what I received instead is better and more holy in Heaven-Speak. But....
But now, finally - after thousands of dollars, countless doctors, and puddles of tears - I have a treatment plan. Albeit, it is for a diagnosis which has "tested" negative many times over the years. But finally, a doctor has recognized my picture and said, "This picture of you looks like Lyme and it's buddies Erlichiosis and Babesiosis." I have a treatment plan formed by someone who knows how much I have lost.
I have a treatment. I have plans.
Survey: What is your quickest turnaround after life derailment? What was your longest turnaround time?
