Its a memory that’s etched into my consciousness with such severity that indelible is its mark. I am standing in the sanctuary of Grace United Methodist Church in Manassas, Virginia, about 5 rows back from the front, watching one of my favorite bands. The band, regional act Decyfer Down, a group of guys who I had come to know as friends through Caleb, their frontman who I went to school with, launches into a re-work of one of their older songs, “Fallen”, now called “Vanity”. It wasn’t quite dark out yet, so the evening light is trickling in through the clear and stained-glass windows of the church and mixing with the colorful stage lighting the band has set up. Its loud, especially since the room has a rough stone floor that reflects everything up to its bare-wood vaulted ceiling, but I don’t seem to hear anything — I’m too far inside my own head to even pay attention to the lyrics. Over the roar of the Mesa-Boogie dual-rectifier guitar amps, the cranked Ampeg bass amp perched next to a towering 8x10 cabinet, and the wood-finish Yamaha drums, I can hear my brain turning and running in overdrive. The past few weeks have been trying and stressful and have all built up to this one point, spun into existence by a phone call, punctuated by this one crystallizing thought:
“I am sick.”
I, like most other high-school juniors, never really thought about the existential questions of life and death and what happens after beyond the academic extent to which my religion addressed it. The issues of what it would feel like to die, the finality of death, and the cancellation of opportunity to experience a multitude of things in my life we’re never really topics I mulled over or even cared about. That was until the winter of 2003.
Every year my mom — my only parent at the time — went to a conference that her company put on. Since my brother was away at college and she didn’t trust me to be at home by myself for a week I usually went to stay with a friend from school. All in all it was usually a fun week. This year, during that week, I started getting some soreness in my right elbow. Being a teenage male, I thought little of it. After a few weeks of soreness I went to the doctor, who diagnosed it as tennis elbow. No big deal, just ice and Advil and keep the activity on it low. After another week or two the swelling went away and I was back to normal.
But a few weeks later my right knee started getting sore and started swelling. And it kept swelling. Eventually my knee doubled in size, filled with fluid, sore and almost unable to have weight put on it. So back to the doctor I went.
My doctor, now puzzled by my symptoms, decided to have two things done: get my knee drained by an orthopedic surgeon, and run a blood panel to try and figure out what was wrong.
Having my knee drained was a simple enough procedure, albeit one of the most painful things I have ever lived through. The doctor, who was well into his seventies and probably should have retired years before, took a rather large syringe attached to a rather large needle, drove the needle under my kneecap and proceeded to draw the syringe’s plunger back, suctioning out the fluid in the process. While I lay on the medical table, knuckles white from gripping the sides of the table with all that I could muster, the doctor drew at least three syringes of fluid (mixed with a little blood) out of my knee. Satisfied that he had extracted enough fluid to fill up what would be a rather gross size-4 soccer ball, he slapped a bandage on the hole and gave me a pair of crutches to use for a few days while my knee — now dry — got used to being normal again.
Things were good for a few days. I was back to feeling OK, able to walk around on my own two legs again. A minor speed-bump in the road of invincibility that every teenager eventually travels on. Until, that was, I got a call from my doctor. The blood tests had found something…maybe. They needed to run more tests to prove it, but he was pretty confident the advanced tests would show the same results. I had just ramped off the gravel shoulder and was careening headlong into a canyon.
The Test, as it was described to me is actually three tests. Each test looks for a specific antibody and if more than one of them comes back positive the whole test is considered positive.
And so we waited. Days crept by until the silence was shattered by a phone ringing. The Test was complete, the results were in.
I have Lyme Disease.
Lyme Disease is a tick-borne bacterial infection that can be classified into three distinct stages:
- Early stage Lyme is characterized by flu-like symptoms, tiredness, lethargy, and sometimes (not always) a bullseye-shaped rash around the tick bite.
- Mid-stage Lyme is where things start getting more serious, with it causing joint swelling, arthritis, dizziness, muscle and nerve pain, facial palsy, and a host of other nasty symptoms.
- Late-stage Lyme can be lethal, with it attacking your brain and nervous system, causing severe damage, even memory loss.
I was solidly in the mid-stage of the disease when I was diagnosed. As far as I know I never had the bullseye rash, and the other early-stage symptoms can be explained away as “being a teenager”, so it was only later that we actually figured out something was wrong.
On my diagnosis I was given two things: a referral to an infectious disease specialist and an existential crisis.
I was referred to Doctor Henry Rhee, MD, at the Infectious Disease Specialists of Virginia. At the time he had been hailed as one of the leading infectious disease specialists on the east coast, and having been treated by him I can attest to his skills as a healer. I was in good hands, but as I found out the universe was far from finished giving me bad news.
Because of the later stage at which my disease was discovered Dr. Rhee decided to bypass the usual oral course of antibiotics and be more aggressive in treating it by placing me on a high-dose IV drip. There was one small hiccup, though: I am allergic to the medicine. I am allergic to penicillin and the other medicines in its family, specifically ceftriaxone, so being unwilling to use a less powerful treatment, I was left with one last option: desensitization.
Downstairs from Dr. Rhee’s office was a dermatologist who specialized in desensitizing patients to medicine. Like most things the process is pretty simple, really: you start with a minuscule dose of the medicine injected just under the skin — so shallow you can’t even feel the needle — wait, and see if there’s a reaction. If there’s no severe reaction, then you progress deeper and in higher doses until you reach the desired dosage. This required, in addition to having a mid-line put into my arm (a painful and bloody procedure in itself), me receiving upwards of ten injections over the course of a few hours. And, to help keep my reactions under control, I was given Benadryl. Tired, hungry, sore, and feeling like a human pincushion, I was given my gear and finally headed home.
My gear consisted of a shoulder-slung IV pump, and IV bag, and a whole bunch of saline, heparin anti-coagulant, and alcohol wipes. Each IV bag would last for about 12 hours, at which time I would need to flush my mid-line with both saline and heparin then attach a new bag to the pump and restart it. Should anything happen that would interrupt the flow the pump would start beeping, and if I didn’t get any medication for more than an hour or so I would have to do the desensitization process all over again. So, naturally, something happened.
One night, as I as asleep in my bed, I was woken up by my pump beeping. There was a block in the flow and something needed to be fixed. Unfortunately, where the mid-line had been put in was right in the crook of my left elbow, meaning it was subject to being bent and flexed repeatedly as I went about my day. That night it had enough and simply broke. Early the next morning we returned to Dr. Rhee’s office to have the broken mid-line removed and new one put in, this time into my bicep — I still carry the scar on my left arm: a small, smooth patch of scar tissue. And, because I had gone too long without the IV drip, I had to undergo yet another round of shots, and this one did not go as smooth as the last time.
I was unaware or asleep for most of it. The Benadryl I had been taking along with ceftriaxone combined with the lethargy and tiredness caused by the Lyme Disease conspired to make me sleep…a lot. During this round of desensitization I was touch and go for a good portion of it, but what I do remember is being borderline anaphylactic from being allergic to the ceftriaxone. Obviously I survived it, but it is not an experience I wish to relive.
Second to that experience is the experience of being — as it could only be described — under house arrest for a month. The full course of my treatment lasted 31 days from first injection to having my mid-line removed. There were a few bright spots in those weeks, chief among which was Jill.
Jill was my in-home nurse that came every Thursday to check up on me, take some blood, restock supplies, and change the dressing on my mid-line. Jill was a rockstar and her bedside manner surpassed even her incredible skill as a nurse. Even though changing out my “window” — a thin, flexible sheet of clear adhesive plastic that covered the entirety of my mid-line implantation site and held it in place — was an unbearably uncomfortable process, especially for someone with arm hair, Jill made it less so. She understood that it was painful and did her best to either distract me from it or just get it done with as little faff as possible. I greatly appreciated that effort.
There is one advantage to having a mid-line stick into your arm: once it’s installed you pretty much don’t need to get stuck again while its there. Drawing blood was as simple as unhooking my IV bag from the mid-line, hooking up a syringe, and letting my heart do what it does best: pump blood. Once you’ve got all you need you simply flush with saline and heparin and restart the IV. I guess when you already have a hole in your arm you might as well use it for everything.
Life goes on without you. Its another lesson that I learned during my treatment. While I was at home, alone, left to my own devices to read or sleep or muck about, my friends were at school and in the world, living their lives. Occasionally I would see one of them but I can’t really fault them for not coming around more. Who want’s to hang out with the sick kid? I am by nature an introvert so the crushing silence and desolation weren’t all that unwelcome to me, but there comes a limit even in an introvert’s life where you crave human connection. I learned how to survive on my own, by myself, with no one to turn to for entertainment or companionship. I was isolated, and it was that isolation that gave birth to one of the funniest things I have seen.
My friends, while going about their lives in high school, got bored like most high-school students do. So to pass the time they started drawing and passing around comics. Specifically, comics about me dying in increasingly hilarious and impossible ways. Some, including our parents, might have seen it as crass and unsympathetic, but to us it was a way to process what was happening. Whether it was a way for them to cope with one of their friends becoming seriously ill or just easy material to draw from I’ll never know, but for me it was a way to “de-serious” my situation and find comedy in the face of potential tragedy. Somewhere, in some box hidden away, those comics still exist. I hope some day I can re-read them and laugh as hard as I did when I read them for the first time.
I would often accompany my mom to her office. Seeing as I was not in school, but my mom being unwilling to let me be more than a few seconds away from her, I had countless long hours alone in an office building. I had my own “office” — a barely-used conference room on a corner of the building with a panoramic view of the surrounding town. It was here that I came face to face with one of my most favorite books and historic figures. For more hours than was probably healthy I laid on the floor of that conference room, in the corner overlooking the rest of Manassas, and read about the life and exploits of General George S. Patton in a book called “Patton: Ordeal and Triumph” by renowned historic author Ladislas Farago. It was his book that the movie “Patton”, with George C. Scott in the titular role, was based on. In those pages I discovered a man that I only new by name, yet through transporting myself to his world I discovered a leader who seemingly understood my own personal ordeal.
Patton was a man of two minds. On the surface and in public he was a blustering, swearing, boastful, irritatingly arrogant military genius who was often right in his arrogance. He fought with both the enemy and his superiors, and sometimes even his officers, and was yet a tolerated if not respected member of the Army. He was feared by his enemies, to such a degree that even a whisper of his name on a certain front would change his enemies battle plans, lest they risk too much and expose a soft underbelly for Patton to exploit with his trademark speed and decisiveness.
Yet in private he was a different sort of man. Devoutly religious and humble before his maker he wrote of himself in his journals as a pious and meek man, bowing to the Almighty in penance and regret more often than not. He understood he was a deeply flawed man and was acutely self-aware of his shortcomings as a person. He was also studious and well-read. It was not uncommon to find books written by Erwin Rommel, or other great tacticians, adorning his bedside. A stark contrast to his know-it-all public persona.
It was this dichotomy of man vs image that drew me to Patton. Here I was, a teenager enduring the most challenging period of my life up to that point, having to put on a face of invincibility while privately questioning my very existence in much the same way that Patton did. Surely if he, a great American hero of World War II, could be brought low by demotion or defeat, then surely I can too, so what less right do I have to question and to complain?
Question and complain I did. After all, the treatment was no sure thing. There was no guarantee that after the 31 days, after the IV drip was stopped, even if my symptoms disappeared, that I wouldn’t have a relapse at some later date, or that the disease was even out of my system and wouldn’t just keep attacking my body undetected. So in public I smiled and waved, acted like nothing was wrong, and went about my business, but in private I cursed God and man, lamented the tragedy that had befallen me, and wished against all hope that I might simply fall asleep and not wake up. I fashioned myself a modern-day Job, sitting atop my pile of ashes dressed in sackcloth, wailing and gnashing while I scrape boils off my sicked body with broken pottery. My mind, darkened by thoughts of self loathing, played tricks on me and made me believe that I would never get better and that the end of this would never come. I listened to songs of hope and love and cursed their authors as inauthentic hypocrites pandering to a sugar-addicted audience.
As I sat there in the darkness of my own design I contemplated death and all its dimensions. I thought about everything that I had done so far and everything I had yet to do. My thoughts turned to my future wife and family, and what they would be like, and if I would ever have the chance to see them. I contemplated the finality of death and what, if anything, comes next, and I determined myself to live, to see the next day, the next week, the next chapter of life. I realized that I didn’t have to be happy about it, I just had to be content to live. And then it was all over.
Thirty-one days after my journey began it ended. Jill knocked on my door, removed my mid-line, and left. It was done, I was free to continue my life. The very next day I took the SAT’s, scoring an 1100 on a test I had never studied for or had even thought about for the past month. I felt free, lifted of my burden, with the world at my feet. But the man that emerged from the darkness was not the same man that entered it.
Fifteen years after my diagnosis I still carry the scars of my ordeal. Some scars are physical, relics of the method of my treatment, while some scars are not. Those scars run deeper into my psyche, the scar tissue imparting an intransigence into places that were once full of activity. I had emerged a changed person, maybe stronger than when I had went in, but the true balance of the scales will only be seen in time.
There’s no real moral to be had from this, I don’t think. Maybe a small set of principles that could be gleaned but no earth-shattering advice or profound truth as far as I can see it. Don’t take life for granted; even something as small as a tick can make the big things seem meaningless and change your life forever.
I want to extend a huge thank you to Dr. Henry Rhee, Jill, my old doctor who thought to check for Lyme Disease in the first place, all of the nurses who attended me, and everyone else whom I’ve either forgotten or can’t remember their names. You were amazing and wonderfully talented people who helped me in a very dark time and I am eternally grateful for you and everything you did. Thank you.