Every great philosopher, every inquisitive monk, and every spiritual explorer has pondered the question, “why am I here?” and as I sit in the middle of Boca Raton, outside of Whole Foods with my wheat grass, pineapple, and lemon concoction made by the skinny girl at the juice bar, my organic salad with gorgonzola and free range chicken breast, and my bottle of raw coconut water, I can’t help but ask, who the fuck am I, and why am I here?
No, I don’t pretend to be a great philosopher, but the events of the last few years have rattled me, have torn me from the world I knew, and have landed me in some limbo where I’m a myriad of contradictions. I’m a fitness professional struggling to battle a chronic health challenge, a business advisor with brain damage, and a world traveler who can’t walk into shopping malls, subway stations, or theaters without being impaired by chemicals in the environment (if you’re new to this blog, I’ve been stricken with Multiple Chemical Sensitivity, known by those who know as MCS).
Sitting amidst the huge umbrellas, palm trees, and tables and chairs, I’m looking around me. I see two mature gay men wearing matching tie dyed shirts eating sushi as their little fluffy dog with an oversized head looks at passersby capturing his fair share of attention. I see a beautiful woman with manicured nails, highlighted hair, and a body that shows the rewards of Zumba classes at Lifetime Fitness daintily sipping a protein smoothie. I see large women starting their healthy diets with soups and salads, a couple of young tattooed bodybuilders chomping at burritos, a runner in full running gear eating a fruit salad and drinking a large bottle of Fiji water, and a table full of FAU students laughing at youtube videos on an ipad.
I just realized, I do a pretty nice job of typing without looking at the keyboard. Not a single typo! Kudos to Miss Timlin, my 8th grade typing teacher. I’ll go back to scanning the scene . . .
A dead ringer for the SNL Church Lady (for those of you old enough to remember Dana Carvey’s Saturday Night Live heyday) stands reading a newspaper, a table of girls with identical glasses sit and appear to be involved in a new sport, synchronized chewing, and a slow but steady parade of well-dressed and casual reveal the dichotomy of a “natural market” in the cosmetic surgery capital of the East Coast, Boca Raton. I feel oddly disconnected, as if I’m watching a show being put on just for me.
This isn’t typical for me. I’m a connector. I’ve always found it simple to connect with all sorts of people, athletes and bookworms, geeks and freaks, beauties, elitists, simple and complex.
Today I sit disconnected, viewing things purely from inside my own skin, pondering the question that has plagued all those who contemplated the big “why,” the elusive but important reason for being.
Although MCS has impacted my brain, and left me with a lesion in the left frontal lobe, I am not yet insane. I have my marbles. The “why am I here” is not as much a mirror of Socrates thinking as it is a question as to whether I’m serving my purpose. While I was very clear years ago as to how I can serve a higher good, things have changed. I feel as if this is some sort of important transitional period, as if I have something important to do.
The reality is, I could “act as if” all is OK, do as I used to do. I could walk over to the newly seated woman with the pink shirt and pony tail and start a conversation about the James Patterson book she’s reading. I could summon up whatever bit of charm I can muster to try to get a chuckle out of the girls with the glasses, and at the risk of being a creepy old guy, I might even take a shot at glimpsing at the youtube video with the FAU gang. That has been my nature.
Everyone who’s known me over the past thirty years knows me to be social, a conversation starter, the possessor of a genuine interest in people. I’ve been accused of being a flirt, at times of being arrogant, and I wouldn’t be surprised if the word obnoxious was whispered after some of my bold interruptions.
I never felt as if I was interrupting.
I felt connected. Right now, I don’t.
Nobody around me knows I’m blogging. Nobody around me knows I can go into a state of brain fog or even seizures if I am surrounded by people wearing perfume. Nobody around me knows I was misdiagnosed with a host of diseases from Parkinson’s on down. It’s that sense of “nobody knows” that creates the feeling of disconnection.
As I sit here, I understand the plight of all of those who suffer with Multiple Chemical Sensitivity and Environmental illness.
I understand the dilemma of the invisible disease, and I understand it first hand.
So who am I? Am I still a fitness guy if I presently struggle with my own health? Am I still a connector if I feel a sense of disconnect from the world around me?
I think whatever is going on is somehow supposed to be going on. For some reason I feel as if, despite all of the struggle, despite the frustration, challenge, disappointment, and expense, this is who I am. It’s something different than I’ve known, as if a trauma threw me, damaged me, changed me, and in healing I’m the same but different. I can’t yet define it, but I feel an emerging new sense of purpose.
Two women speaking Spanish wearing jeans that must have been shrunken in the wash just sat at the next table. I immediately did the “freeze” thing. It’s a thing that all who’ve been plagued by MCS can relate to. It’s a moment of potential fear, a moment of caution, a moment where we see someone who looks as if they might be wearing perfume and we freeze to assess whether we should relocate.
I did the sniff test. I’ll stay put. It appears safe, at least for me. I just hope they don’t get crushed by those jeans.
The word “safe” takes on an entirely new meaning once MCS strikes. There was a time “unsafe” meant there were bad people, wild animals, or dangerous weather conditions. You could see or predict the dangers. Now danger sneaks up from hidden hazards. “A dangerous condition” might mean a fragrant shampoo and conditioner were used by someone sitting nearby. Bizarre. It doesn’t get “normal.” It becomes reality, but still, a bizarre reality.
I’ve written about my challenges in finding a “safe” place to live, and my challenge continues. I’m still living in a house that is not livable for me, still reaching out trying to find assistance any place I can from realtors, friends, eco-friendly developers, or ordinary people who might be able to direct me to a living environment that is chemical free. So far I’ve been unsuccessful and my attempts at moving have been costly. I am desperate, but resourceful.
I don’t believe I’m viewed as desperate and in that lies part of the problem. Few people know how to help. I’ve always been a solution finder, always reached out to assist others. I’ve never really had need. Today I do, and I don’t know how to be in the needy role. I continue to seek out solutions, continue to seek out experts, but as resourceful as I may be, I’ve lost many of the “natural” resources I always felt I could rely upon, one of them being money, another being boundless energy.
I’m broke, my savings are gone, and I’m often exhausted, but I continually find the ability to move forward, and I feel that’s the essence of finding cure, the crux of healing. Attitude must precede all. An acceptance of a present circumstance with a willingness to seek betterment is the one resource I am able to rely on. Resilience. Mental toughness. Response-ability.
So where does this rambling sitting with my computer outside Whole Foods in Boca Raton lead? Three places, three places that serve as puzzle pieces to help me redefine or re-discover “purpose.”
- I’ve gone through a spiritual journey. Yes, I said a spiritual journey. It was an unintentional one that came at me. Without sharing details, I’ll tell you it has literally rocked me from the solid ground I always thought I stood on. This is not the forum for the full revelation, but suffice it to say, my world’s been shaken, rattled, and changed by something other than I’ve ever been able to access with my five senses. It led me to a sense of a greater responsibility; perhaps a different one that I believed was my “path.” I’ve spent 30 years being “a fitness guy” and in the past five years I’ve moved into a greater arena, one of “health.’ The irony of my own health hitting some real stumbling blocks as I developed my ALIVE protocol isn’t lost. There’s something valuable in it and something greater than an accident or coincidence.
- I understand for the first time in my life what it feels like to be a victim. It’s hard to distinguish between those doctors, contractors, and advisors who were well-intentioned and under-informed and those who saw dollar signs in my vulnerability, but regardless of their intent, I’ve been taken advantage of. In that I’m better suited than ever to become an advocate, better able to “connect” with those who feel disconnected. In other words, my recent sense of disconnection can lead me to become a representative, a spokesperson, in a sense a leader among those who are the new generation of unwell . . . those who are affected by environmental factors insidiously entering their bodies through foods they believed to be healthy, air they sucked in through their vital breath, and water we once correctly recognized as the most important nutrient of all. In this moment of perceived disconnection from “normalcy,” I feel a new connection opportunity, a chance to throw a rope around all of those who need to be united, who have an urgent plea, a message, and a warning that they’re desperate to unleash for all to hear.
- I must find a safe place to live. I still live in my “new” home, but I have an air exchange unit exchanging indoor air with outside air, I have fans and dehumidifiers to maintain fresh air without destroying my air handlers with Florida humidity, I have charcoal air purifiers, and even with all of that, the formaldehyde in the ceiling insulation, the emissions from the pressed wood, and the chemicals that fill the “fresh air” from pesticides and lawn treatments leave me compromised. By continuing to put this out there, to reach out for help, I believe I’ll find a home, a rental for now, a place where I can sleep through the night in safety, a place where I can live a normal life with my 8-year old daughter, a place that gives me access to clean salt air, a kitchen without chemical-ridden pressed wood cabinetry, and a comfortable home unburdened by new paint, new carpet, or mass produced chemically coated drywall. Hard to find in 21st century south Florida? Yes. Does it exist? I’m sure it does. Will I find it? Yes, or it will find me, and that experience also serves me in being a better coach for others, in helping launch an advocacy movement that takes much of the struggle out of the hunt for safety.
So to those three ends, I keep blogging, keep sharing my experiences, frustrations, feelings, and soon-to-share victories, but I’m going another step. I’m using my abilities, god-given or otherwise. I’m initiating a new movement that runs far deeper than “fitness.” I feel it’s time to re-assess the term “health care,” and to better understand, as human beings, our response-ability for living healthfully and for raising children healthfully in a synthetic chemically-filled world begging for change.
I receive no less than 50 emails a week from people who are suffering with mold toxicity and/or chemical sensitivity. I don’t advertise for them. I don’t search for them. They find me, and they vent, and what I find amazing is, whether they live in New Zealand, Switzerland, Canada, or New Jersey, their stories are identical. The specifics are different, but the symptoms, the emotions, and the way they’re perceived and treated by friends, relatives, and the medical “experts” is unnervingly similar.
Think about it. If hundreds, thousands, perhaps hundreds of thousands of people from different parts of the world are affected in the same way by their own individual experiences related to exposure to mold or toxic chemicals, isn’t there scientific validation that should allow this to be recognized as a disease? I say yes.
If there are those who have found the ideal balance of detox, medication, avoidance, and strategy to “cure” their environmental disease, doesn’t it follow that MCS and related environmental maladies should be viewed as “treatable” diseases? I say yes.
We need the medical field to recognize the symptomology, to open up to new approaches for treatment, and we need the lobbying and media power to help the public gain recognition of the chemical onslaught and subtle but very real dangers.
As it stands today, any individual attempting to “warn” people comes off as a maniacal conspiracy theorist, but united, all of the MCS voices will have power, and in pursuing a cure, I hope to unite those voices.
For now, as a preliminary step, I’ve created a simple presentation outlining 15 revelations that may help those afflicted feel a sense of “connection,” a sense that there are proactive people with hope and determination seeking true solutions and that MCS forums need not be complaint mills. If you’ve read my post, the Crow in the Fire, you understand the role psychology must play in cure, and in that we must avoid negativity at all costs. I will welcome and embrace any posts, but urge you not to spill out the heartbreaks and frustrations. That doesn’t mean they’re to be ignored, but they aren’t productive in this forum with a mission of cure.
Whether you are affected by mold toxicity or MCS, or you know somebody who has been, or if you’re a health or fitness professional with a desire to stay on top of helping people find betterment, I urge you to view the presentation (it’s a PowerPoint, no sound, downloadable as a pdf) and then to complete the survey the presentation will direct you to. I’ve already collected survey results from over 200 people. The similarities are chilling, especially because these are unrelated people from all corners of the globe. The more information I acquire, the more data I have to begin to present this as a recognized and treatable condition.
Feel free to post any comments, to read other entries in the blog, and most of all, to download the presentation and complete the Survey. The words that have served as the foundation of all of my fitness and educational programs over the past decade take on a greater importance today than ever, so I’ll leave you with those two words.
View the Presentation titled: Escaping the Walls of Isolation and Rediscovering Your Life
Then . . . .
Complete the Survey at: