Before reading Lyme of My Life I didn't know much about Lyme disease. The blog is written by Sadie, a former coworker of mine at St. Joseph Center. I didn't get to know Sadie very well but I remember she first came off as a bland and efficient sort of person, but as I got to know her a bit better I could tell that my first impression was wrong and that she was smart and interesting, and possibly annoying. I followed her on Facebook and learned she was a militant and spunky biker-rights person. And then it seemed like she sort of disappeared for awhile. I didn't think much about it, figured she was just shrouded in the mists of the Facebook algorithm. And then I found out she had advanced stage Lyme disease and had become essentially disabled.
Like I said, I didn't know much about Lyme disease. What I did know was mostly based on this kid Sean that moved to my neighborhood late in elementary school. Sean was a big dude, definitely big for the grade and we eventually found out he'd been held back but didn't know why for awhile. Nobody teased Sean to his face because he was a big angry dude but there was a cloud of mystery around him and people liked to speculate about why he was held back. Incarceration was the dominant theory. Sean insisted on people calling him "Trapper". He collected reptiles and fireworks, shot air rifles at squirrels, called people "pussy", and liked to talk about how he wished he had a dick in his armpit so he could pleasure himself more easily. He would constantly lie for no reason and claim to see military bases on the surface of the moon with his naked eye. He bragged constantly. I kind of thought he was full of shit, but I met a medium-hot girl in swim class (my parents forced me to take one "physical activity" at all times to be well rounded) who talked nonstop about his sexual prowess and eccentric predilections. Understand, I was 14 and hadn't touched boob. So Sean became this kind of enigma. I saw him stick up for people getting bullied more than once, and he would vacillate between periods of silent sulking and loud obnoxious dickwadism.
One snow day I was waiting for the bus and Sean was driving past and he picked me up and drove me to school. By that point we weren't friends at all, but I think he'd recently realized his two friends were total assholes. I barely said anything during the ride but he opened up to me in machinegun fashion. He said he had to repeat 4th grade because he had Lyme disease, which didn't really surprise me because he spent most weekends crawling through streams searching for reptiles to capture. It made him unable to do anything for a year and he convinced himself that he was going to die, but then he suddenly recovered. Then he went on to talk about his future plans to join Black Ops or something and I kind of spaced out, thinking about him trapped in his room in 4th grade anticipating death. This is the last conversation I ever had with Sean. But the impression I got was that Lyme was very bad and very mysterious, a kind of primeval holdout that lurks in swamps waiting to pull us in, not to kill us but just long enough to show us our rot.
A couple of years ago I went to Mexico with my new wife Pam, and stayed for over 10 months, almost immediately after a honeymoon in Queensland. I had to learn alot about diseases and toxic insects and hostile lifeforms in general, but for some reason Lyme didn't make the cut. Maybe it was because the work with my wife involved being frequently bitten by bats, and I decided to fool an ER in the States to give me post-exposure rabies shots so I didn't have to shell out five hundred large for the pre-exposure course. What I didn't know at the time is that this would result in me also being injected with 2,000 IU of human immunoglobulin, so much that 20 injection sites (including my finger) swollen visibly from the fluid volume, before puking orange juice due to the Norco they gave me to stop my whining. Maybe Lyme didn't make the cut because I woke up next to a dead Assassin Bug with a possible bite site. The Assassin Bug is basically a living blood-straw the size of a large roach that sometimes carries the protozoan disease Chagas, which can lie dormant in the body for decades before causing a rapid slide into dementia. Maybe Lyme didn't make the cut because I lived in an area known for deadly scorpions, where antivenom availability is advertised at the front of every clinic. Small scorpions which are known to hide in shoes, pillow-cases, and laptop covers (turned out we never found any in our house because they were eaten by our borrowed cat. cats are immune to scorpions). Maybe Lyme didn't make the cut because we were constantly at war with mosquitos, making some days seem like little more than a cycle of cold showers, application of multiple forms of repellent, application of multiple forms of anti-itch cream, application of anti-bacterial creams to the sites of freshly-scratched bites, and ingestion of fistfuls of whatever antihistamines we could get our hands on. Did I mention we lived in an area where mosquitoes sometimes carried Dengue Fever? Maybe Lyme didn't make the cut because we had guns pulled on us twice, or because a Stage 2 Hurricane hit just a few kilometros from our leaky concrete beach house.
But Lyme should have made the cut. Because in a couple months in the dry season I had more ticks than the rest of my life combined. We would burn them, we would use duct tape, we would yank with tweezers. Twice I got the head stuck and got a nasty boil that lasted for weeks. Once because of a botched removal and once because the tick was undetectable for over a day on my scalp before it became so bloated as to be obvious. Nothing is weirder than a tick bomb, when dozens of tiny juvenile ticks will attach so weakly that they can be pulled off with fingernails. Knock on wood.
Sadie is on a pretty serious regimen involving frequent injections. She takes enzymes, specialized supplements, anticoagulants, and antibiotics. She sits inside some kind of spacesuit designed, as far as I can tell, to make her sweat. Sadie often loses consciousness from standing too long. She has severe muscle weakness and difficulty maintaining weight. She experiences pain in her joints and the kind of hypersensitivity to stimuli associated with migraines and fibro. Not trying to list all her symptoms, just give you an idea of how global and debilitating Lyme disease can be. Sadie had to quit her full-time job, go on disability, and move home to live with her parents. Her treatment is essentially a full-time job and it isn't clear when she's going to recover.
But I know that Sadie is going to recover, because I have worked long enough as a social worker with people with a variety of chronic conditions that I can smell success as surely as I can smell death, stagnation, or hypochondria. Sadie is a person who takes her recovery very seriously and doesn't trust others to do it for her. She is a skeptic but not a cynic. She has a sense of self-effacing humor. She still has the unmistakable human drives of a total person. She's very feisty and combative with her condition. Most importantly she does not want to be sick. But none of that is really why I know that Sadie will recover. I know this because I have known Trapper. Trapper was a man with a million problems, demons that will always chase him, huge character flaws. But despite all this Trapper was not defeated by Lyme, not even when he had slid all the way down the rabbit hole and was ready to throw a game of checkers with the reaper himself. Just being a deep down stubborn asshole was enough to get Trapper through in the end. So that's all it takes. Sadie, I know you have that in you.