My Story
[This is my story in a nutshell – or maybe a manual on How to Go Off the Rails in America – okay, perhaps not quite in a nutshell – but it’s the brief version nonetheless, broken up here into four parts. It is not an easy story to tell, and it does tend to suss out who I can really trust. But it is mine to share, and so here I do. As always, in the interest of keeping the cancer cell count down to a minimum…]
“Don’t Get Sick in America…”
If only I’d followed that advice.
In 1996, I was just starting out as an engineer, having taken a math degree from Penn State during which time I had the privilege of working with engineering artist and sculptor Rob Fisher, who became a mentor of sorts and an absolute inspiration. Things were going well – great job in a very nice area of Southeastern Pennsylvania, lots of great friends and what I thought was an excellent future to look forward to. Inventive and visual in nature, I planned on honing my engineering craft, filing patents, and living the good life.
But no amount of planning, engineering or mathematical probabilities could have predicted what followed. On one cold March day, I was rushed to the hospital after what seemed the 1000th time I’d been given antibiotics for what my doctor deemed “a virus.” I’d gone to see her for ongoing flu-like symptoms and was ushered out the door in the usual minute and a half, during which I was pronounced yet again in need of Big Pharma’s horsepills. But this time was different. For me, it was the tipping point from which I’d never again be the same.
Consciousness came and went as I was put on IVs for what the EMTs were calling shock and toxicity from a reaction to drugs. That was the first (and last) time I heard that truth, as afterward my doctors told me I had something known as “viral syndrome.” I’d never heard of it, but there it was, printed in black and white on my hospital admittance papers, along with the name of the antibiotic, Ceftin, and Ortho-Novum 7-7-7, a birth control pill that had pretty much put to rest a case of polycystic ovarian disease. Three days later, I was discharged and went home a changed person. I went back to work for a few days, but found myself too exhausted and sick to continue. I asked for time off, thinking maybe I did have some strange virus and would be over it in a week or two.
Instead, weeks became months. Fevers traveled throughout my body, symptom after strange symptom visiting in a not-so-merry-go-round that wouldn’t stop. For three months, I was pretty much bedridden, wondering if I’d ever feel good again. An intriguing new pain developed in my left abdomen, never to disappear completely. I visited doctor after doctor, specialist after specialist, all of whom pronounced me as just fine, but who always managed to send me home with scrips for what they declared in all their multi-degreed glory was surely all in my head.
Eventually, my job at Penn Engineering disappeared. Then my savings. Boyfriend, too. One night, after eating what little I could, my heart rate went up to around 200 bpm. I honestly thought it was over, but found the thought strangely comforting. My life had already become full of too many goodbyes to count, and I found myself entering that strange netherworld of unnamed chronic illness where not much got done and no one gave a rat’s ass.
Lost loves and gone relationships became the norm along with check cashing stores, loan sharks and too many missed opportunities to count. Never-ending unqualified diagnoses from friends and family, often ending with the keyword deadbeat were delivered early and often. Doctors threw up their hands, confounded, and sent me huge bills for their usual null result.
Yep, I had gone down the toilet on Big Pharma and rotating illnesses that no one could figure out, but luckily I’d taken a microphone (and many notebooks) along for the ride. From the same outfit that brought us It’s All in Your Head, Sweetie came Be Happy Where You Are with What You Have. Thankfully, the Wright Brothers didn’t listen to that one.
Soon afterward, my situation took yet another turn for the worse when foods started disappearing from my menu, one by nerve-wracking one. First, it was wheat. Then all the glutinous grains. After that came soy, dairy, eggs, fish and even some veggies. All produced anaphylactic-like reactions that I’d never experienced before, starting out as a tickle in the back of my throat all the way to severe shortness of breath, rapid heartbeat and loss of consciousness. This went on for three years, doctors telling me over and over again to go and get some mental help while never once coming clean that a lifetime of antibiotic over-prescription could be the factor. I survived on a diet I can only call paleo on acid – a few meats, low-starch veggies, nuts and not much else. I often thought to myself during this time – how skinny will I be when I kick the bucket? – and found myself musing on a Last-Night-on-Earth Casserole of Death, made of wheat, soy, fancy cheeses and fish sticks with egg-full mayo for dipping.
I was losing it for sure, and I had no idea why. The biggest sting of all was the loss of my romantic life, where prospects made their quick assessments and wrote me off. One, a fellow engineer, said he couldn’t get involved because I “blew the formula.”
Once burned, twice formulaic, I supposed, but I guessed that someone so inept at digesting 30+ common foods would be quite a problem on social outings. Yep, I might have an episode at the dinner table, and on top of that, I’d become a real food bore. Not exactly good dating material, either.
As time went on, I found myself longing for simple things like good feelings and good company. Everything else had gone out the window, and biochemically, I was a mess I couldn’t figure out and had no system or reference point for. But I was still me, and those who stuck around long enough to find out I was not quantifiable to a fault and that I would fight to win took their place among my trusted simply because they’d been willing to dig a little deeper.
From this, knowing people’s stories – their real stories, not the tidied-up versions crafted from fear of rejection or disapproval – took on an ever greater significance as I navigated through my new half-life. Selfishly I’d say – I didn’t want to come home to a math or engineering text. I preferred a warm body, an inquiring mind and a willingness to give just a little, even if it might defy all logic. Because no matter the many turns life took, the house eventually – and always – won.
Family came by, chastising me for “being so young and so lazy” and told me I should see a shrink to find out just why I didn’t want to work. Well, I thought to myself, maybe I was crazy! My family certainly knew all about that, and as they say, the apple didn’t roll far from the tree. Off to the head-shrinker’s I went, where I became the lucky recipient of yet another scrip in the form of Paxil, which the shrink told me after a 45-minute intake would not only help my obvious depression, but that it “helps your gut. You’ll gain weight, and you really need to.”
Ohhhh, was she ever right. I gained about 30 pounds and had boobs for the first time in my life.
Anti-depressant indeed!!!
I took myself to Victoria’s Secret and danced around in things I’d never dreamed of filling out before and yes, spent money I didn’t have. On Paxil, I could have easily become addicted to shopping, but I started to notice that while on it, I didn’t feel like doing much of anything. Not working. Not socializing. Not music…or even reading. TV was good enough, along with shopping and eating whatever I still could. Being crazy certainly had its advantages! And it was as though Big Pharma had really done it – come up with an economic stimulus drug that had me out and spending money I didn’t have almost to the exclusion of all else.
But it wasn’t fixing the underlying problems, namely 30 food intolerances and an immune system that had gone so far off the rails I wondered if it would ever come back.
Then, after yet another round with doctors asking me if I had anorexia while telling me to “try and work some of those foods back into your diet,” it was a neighbor – not a doctor – who came through with the goods. Her name was Barbara, a friend of my mother’s who’d insisted on talking to me after hearing what I was experiencing. Her niece had the same set of problems. She’d lost 22 foods.
Ding.
She’d had to quit school and her social life went completely MIA.
Ding!
She’d finally been diagnosed by an alternative doctor with environmental illness and was able to regain much of her health via surgery and a therapy I’d never heard of called NAET, which crossed western kinesiology with eastern meridian-based medicine, both of which were concerned more with the intricacies of body systems and mechanics than in symptom-chasing pills for all ills.
All new to me, and was I ever in the mood for Anything That Worked. My only question was, when do I start?