You can't hate the roots of a tree and not hate the tree.
I feel like this entry should be more exciting than it actually will be; maybe it's the phrase "origin story" that does it. To me, that brings to mind science fiction, comic books--you know, superheros. And while it's true that, like Spider-Man, I was bitten by an eight-legged bug, I can't say I ended up with any great powers.
Though I did get the great responsibility, so maybe the phrasing fits after all.
I mentioned this briefly in another post, but I'll write it here on its own with a little more detail.
We don't know when I was first infected with Lyme and the co-infections for certain; I have no memory of a tick bite. But this isn't that surprising, for a few reasons. First, lots of people, if they know anything about Lyme, know that a sign of infection is a "bulls-eye" shaped red rash around the bite site. So, in theory, even if the tick got knocked off, the rash would still be there, right?
Problem with that is that studies have been showing evidence for the possibility that the rash is not a sign of infection; it's sign of re-
infection. In other words, the first time you are bitten by a tick and infected with Lyme, no rash--but if you're bitten again
by a tick that transmits a strain of Lyme Disease to you, your body reacts to this new introduction. And voila! A rash is born!
In my case, though, there's another issue that comes into play: based on the severity of my condition, I was probably infected when I was still young enough that my mother helped bathe me, at least for the back-washing bit. Based on reactions my skin has had over my lower back, the doctors suspect that was the site of infection.
Well, I can't see my own back.
And my mother's blind. And yes, she carries guilt within her every day that she missed the tick, even though she shouldn't. (Several sighted individuals could easily miss a tick bite as well, especially if there is not a rash; we are talking about critters that are literally smaller, at some stages, that the period at the end of this sentence. And it's easy enough for them to be brushed off even after they have bitten--and infected--you.
So no, I don't know exactly when I was bitten first and infected with Lyme, though I do know that in spring of 2008 or 2009--I would have to check--I was
bitten by a tick while traveling through Virginia. And yep, I ended up with the infamous rash. Still, by that time I'd been sick for years--more than we even realized at that time.
I can tell you about my diagnosis and the events that surrounded it, though.
I started having health problems in fourth grade. Doctors could not figure out what was wrong with me, and for the next three years, I spent about a third of each school year in the hospital. My parents were told not to expect me to live to turn 13 when I was 10; I found this out much later, but I still wish I knew the name of the doctor who said that to them. He nearly destroyed them.
And then, at the end of seventh grade, I seemed to improve--I seemed to improve after years of having several sinus infections. In other words, I was on antibiotics very frequently.
The same kind that kill Lyme.
And eighth grade was wonderful; I shone. My health didn't get in the way of my academic performance. I still treasure that year, in many ways. (And yes. I had been mocked by various students at my Catholic grade and middle school for being absent so often and the way it affected my grades; when I finished that year with a) a 4.0, b) grand prize in the regional science fair, c) placing in city (both my team and as an individual) in Math Counts and d) being selected for another state-wide math competition--and my teachers, who had watched me be tormented by for the past three years, made sure the other students knew
about these things? I did enjoy the expressions on several faces. I am only human. And I had been mocked and isolated, treated like an idiot, when my brain was fine. My body just was bailing.) So it was nice to see some shocked expressions. It was nicer, though, to see how proud my teachers were.
And I thought that was it.
I started high school at the local Catholic high school; during both my freshman and sophomore years, I was asked to tutor students by a variety of teachers in different subjects, and I placed in the math competition again. I had all A's, and whatever standardized test we had to take any given year, well, I mostly found the experience relaxing.
But I didn't do anything else. Anything
else. Part of this was because my mother, as said, is blind, and my father was often out of town on work; the high school was 20 miles away, and most of my fellow students lived in the larger city it is located in, rather than the suburb my parents' home is in. But that was okay, I told myself; I'd get my license soon enough, and that would change.
The part that I--and my parents--ignored for as long as we could, though, was...that really, even if my mom could have seen to drive, or even if we had lived closer in the larger city, I probably would not have been doing much. Because I was so tired all the time. I came home from school; I slept; I woke up, did my homework, and went to bed. The very few times I did think about how tired I was, I just reminded myself I was tutoring any given number of students most of the time, rarely all in the same subject, and of course
that would wear me out.
I was an idiot.
And then, in January of my sophomore year, my right knee started to hurt. At first it was a twinge; it rather rapidly became bad enough that I ended up in a wheelchair at school, because walking back and forth between buildings for classes had become something I was no longer capable of doing.
I was lucky, I guess, to have the GP I did, though; he had heard about Lyme, read about it, and knew that the most common test used for it (there are newer ones now, thankfully), the Western Blot test, had a 70% false negative rate. In other words, 70% of the people who had Lyme would test as not having it, when that test was administered to them. He knew the CDC said that you had to diagnose by symptoms, as a result.
He was very quiet, going over all of my symptoms. And he told me, after a few moments--and my mother--that I might have Lyme. Which I'd never heard of, beyond knowing that Amy Tan and a member of The Real World both had had it. My mom knew ever less.
My GP said he was going to put me on the first course of antibiotics for it, which would also tell us if I had it for certain. You see, when the Lyme bacteria dies off, it releases toxins into the host body--my body. The toxins cause many things, but the main one is, simply, pain. A great deal of pain. Extreme pain.
So, he said, he thought I had this, but I was to take just one pill from the script he was writing that Friday night. He wanted to see me on Monday to know what my reaction was.
I was in so much agony on Monday that I could barely make it into his office; the weekend had consisted of me curled in a ball, sobbing, because I couldn't not
; that was the kind of pain I was in, suddenly. I could not even manage to actually sit up in the waiting room of the doctor's office; I had to immediately be taken back to an examining room to curl up on the exam table.
"Well," said my GP when he came in and looked at me. "The good news is, Lyme won't kill you."
"So what's the bad news?" I croaked.
"...The bad news is, it won't kill you."
You shouldn't have to hear that at 15 and know it's seriously meant. But in a way, it almost didn't matter, because at that point I didn't yet grasp what he meant. What all of this was going to mean. I didn't know that I was done being a teenager, because a very rapid mental maturation was going to be required simply for me to survive and treat this illness. I didn't know that I'd collapse on a college campus in a few years in so much pain that it would take the local ER three doses of morphine to get it under control.
Thank God I didn't know. I think I'd have been so afraid that I'd just have ended it then and there. Truly, thank God I didn't know.
So that's my story. 13 years ago, as of this past January, everything shifted, and I've been running as fast as I can to get just inches ahead--because staying in place is not an option--ever since, been managing three steps forward before falling two steps backwards.
Like I said: I didn't get the power, but the great responsibility?
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[All Related Entries on DW] | [All Related Entries on LJ]Note: Photo of the Lyme Disease Bulls-Eye Rash by cmkalina on Flickr; used under the Creative Commons License.