Life is not merely to be alive, but to be well.
– Marcus Valerius Martial
Maybe it happened when we were still kids, as we played in the woods behind my neighborhood, building a fort out of downed sticks and searching for newly-sprung daffodils.
Maybe it was the sixth grade camping trip that plastered mud to our jeans and trapped brambles on our sweaters as we followed the trail to the watering hole in the forest.
Maybe it was our visit to see family friends in the Pocono’s — that day when we played down by the stream and my brothers and our friend’s son shouted to run before shoving me up a tree to protect me from the black bear they claimed to have seen.
Maybe it happened during that month in France, as I rolled logs down the embankment in a medieval forest to be chopped for firewood back at the inn, my eye growing red and my face beginning to burn as I fell ill from some unseen insect bite.
Maybe it was just as simple as playing in the park, on the playground, in my own backyard…
We heard all the warnings from our parents and teachers: wear socks and long pants, watch where you’re walking, be vigilant for ticks. But what could a tick do, really, we thought as kids. And, ticks don’t live around here, we believed as adults.
Ticks. As tiny as the period at the end of this sentence, these insects carry a disease that can cripple your life in every way imaginable, with tests that are up to 60% inaccurate and symptoms that mimic everything from the flu to Lupus.
Lyme Disease. Co-infections.
Who knew? Who could have guessed that something so small could cause something so debilitating?
Who knew all it would take — the many years of guessing games and believing that maybe it was just me, all in my mind — to find the answers.
And who knew how complicated it would all become just to get better.
* * * * *
We thought I had caught mono when I fell ill with fatigue and swollen lymph nodes — an illness that kept me out of school for a month during the 7th grade. Since that time, I’ve had mono on at least four other occasions, tested positive for the Epstein-Barr Virus, was told I had the human equivalent of the Parvo-Virus, and then, upon the deduction that my fatigue wasn’t going away, was diagnosed with Chronic Fatigue Syndrome.
This unrelenting fatigue has haunted me almost my entire life: I was active as a child, but after my first bout of mono, I spent most of my after-school hours sleeping until my parents woke me up for dinner. Though I was successful in college — named to the Dean’s List and serving a role as a writing tutor for three years and editor of our literary/arts magazine for two — I scheduled my classes so that I could take naps in between, and when friends and I planned nights out at the bar, I made sure to sleep for a few hours before meeting up, trying to store up enough energy for a night out in town.
It became a joke among my family and friends — “Susan’s taking a nap again, surprise, surprise” — but it was how I’d learned to live. I used to think, I don’t drink caffeine, maybe this is what I need to stay focused and alert and energized. Sleep restored me while everyday life seemed to drain me.
It didn’t always seem so bad. There were periods of high energy when naps seemed like a thing of the past: Trips abroad and memberships to the gym seemed to create a surge of adrenaline. And I would think, This! This is what it feels like to be normal, to have energy! This bubbly and energetic person is who I really am, underneath the tiredness.
But then came the crashes. And each time, it has taken longer and longer to recover.
The fatigue has always been the worst, but slowly other symptoms began to creep up, invading my body, seeking their own attention. In 2009, months of severe upper and lower abdominal pain and endless testing led to the discovery of a collapsed ovarian cyst, which — among the inability to lose weight, the mood swings, the hot flashes — caused the doctors to conclude that it was Poly-Cystic Ovarian Syndrome. I was put on birth control to regulate the hormones and stop cysts from forming.
I thought, maybe this is the answer.
The symptoms persisted.
Still, I tried my best to ignore them, and for awhile, I was successful; for awhile, I believed I was feeling great. And maybe I was — I had so much else to occupy my thoughts and time, after all: I bought a house, I was succeeding at a job I love, I was writing and working on creative projects again, I was maid of honor for my best friend’s wedding, and I even got to see New Kids on the Block in concert…Everything felt like it was falling into place.
Until, suddenly, it wasn’t.
Last fall, the abdominal pain returned in full force. I visited the ER at three different hospitals five separate times in an effort to find some cause or, at the very least, some way to ease the pain.
Vicodin helped. But there was no way I was about to remain doped up the rest of my life just to have some relief. Multiple CT scans, ultrasounds, extensive bloodwork, a HIDA-scan, and an upper Endoscopy (in which my gastroenterologist insisted it was just a sensitive stomach) all showed up as negative. Still, we persisted until finally my general practitioner referred me to a surgeon who agreed to remove my gallbladder. The pathology report showed that, despite no signs of gallstones, my gallbladder was diseased.
I cried. My mom cried. Finally, we thought. Finally, we were at the end of this nightmare. I could get my life back.
I returned to work with as much enthusiasm and focus as I’d ever had; I was working on personal creative projects I’d put off for years; I was planning trips with friends, began dating again, and even bought a treadmill and began to train for a 5K. Nothing could take this joy away from me, I thought.
This…This was how life was meant to be lived.
Only, it was short-lived.
I was so excited to have my life back — to have me back — that I ignored the other signs that began to emerge, believing that the familiar abdominal pain was just leftover healing from the surgery, that the tingling hands and feet, the occasional numbness, the electric shocks running down my neck and shoulders, the chest pain and pressure, the severe headaches and dizziness and floaters in my vision were just a nuisance. Maybe I was just sitting in an awkward position, maybe I pulled a muscle while running, maybe I was a little more stressed than I realized…
Then, on the way home from a great dinner and conversation with a friend one night, my vision became blurry and my head hit the headrest as I almost blacked out behind the wheel. It scared me enough to tell my mom; it scared me enough to make an appointment with the doctor.
And I cried when my blood pressure was lower than my already normal low, when that, coupled with the chest pressure and neuropathy, caused my doctor to order another round of scans and bloodwork and sent me to another doctor. I cried when those tests came back negative while the symptoms began to get more pronounced, when I blacked out for seconds at home and fainted at work.
Dear God, I begged as I thought of all the tests, the doctors, the disbelief on their faces and the distrust I had begun to feel for them.