I can play both sides of the fence (no, not that fence . . . I still only like women). I can, as a sufferer of Multiple Chemical Sensitivity, understand the despair and attach to those horribly plaguing beliefs and thought patterns that sound like this:
“This is the worst thing in the world.”
“I’ve lost everything.”
Those sentiments are real. As I watch my body decline, the body that has not only been the vehicle that’s carried me through life with a then-unappreciated ease, but has also allowed me to stand on platforms worldwide as a role model for health and fitness, I battle despair on a daily basis.
As I think about my daughter’s future, the thought of her growing up with a “sick Dad,” or worse yet, without a Dad, tears at my heart. The inability to function normally in the world I’ve come to love because of perfumes, paints, and chemicals that represent figurative land mines, any one of which can send me into a downward plummet, leads to a level of frustration impossible to articulate.
But wait . . . . I said there were two sides to this fence. The other is the one I fight to connect with . . . the position that says, “this is all within my power.”
“I can heal”
“This will serve me”
Trust, faith, and action have never failed me before . . . so while this is the greatest challenge I’ve ever faced, I know my resilience, I know my deep lying strength and I know putting one foot in front of the other will lead me out of any bad place.
While I choose to stay on the side of positivity, it’s hard. Every disappointment has the potential to become a heartbreak.
For the last three years I’ve been searching for a safe place to live, and as my search hit dead end after dead end, my condition worsened. All of the perks that would attract home buyers and renters have become my kryptonite. “New paint,” “renovated kitchen,” and “new carpet,” are all red lights for me.
I am sitting, as I write this, in a house I’m considering renting. The house I live in has been a trigger for my decline over the three years. What in the house triggers my reactions? I don’t know. I just know I wake seven or eight times each night drenched in sweat, muscles twitching and tingling as if they’re being eaten alive. Sometimes I wake with muscle cramps, other times a pounding heartbeat. Something in the inside air acts upon some trigger within my body to begin a destructive cascade, a chain reaction leading to brain, muscle, and functional deterioration.
In my last post, several months ago, I described my experience with Dr. Rea and the Environmental Health Center (as well as the horrors of Building 7). At the conclusion I referenced an air testing kit that would tell me what chemicals were in my home and I said, “my blood boiled.” Now I’ll tell you why.
I moved into my home three years ago now. Everything was new. The walls, the lawn, the paint, the tile, the carpet, the cabinets . . . . everything. It was just built, freshly furnished, and a virtual showcase with a million dollar view. For most people that would be thrilling. For me . . . frightening. Walking into the home, even before I closed on it, instantly brought a flare up of my symptoms. My eyesight was the first thing affected. Within minutes of walking into the house, colors would fade and I had trouble focusing my eyes on any object. Next came the neurological symptoms, tremors, shaking, difficulty balancing and that was followed by the most distressing symptom of all, the sense of tingling that started in my brain and extended out to every toe and fingertip. Clearly the chemicals in this new home were dangerous for me.
“Phil, you idiot, why did you buy a new home?”
A very good question. Not fully understanding the magnitude of my condition, I believed I’d go through an adjustment period after which that home would be an ideal safe environment for me. The “experts” I spoke to told me you can “bake” the chemicals out of the paint with UV light. Before I moved in, I literally baked the house for three days. I brought air purifiers into every room, added special filters to the AC units, and created a cross breeze using ceiling fans and open windows to keep air moving. I believed it was just going to take some “fixing” before it became my ideal home.
All of my efforts fell short. I wanted to know, what, specifically, was causing me the discomfort . . . and I started reaching out to experts. As I’ve learned, in the medical field, the science field, and the world of alternative medicine, “experts” are common. Expertise is rare. I wanted to know what was in the air (a Phil Collins song suddenly comes to mind).
The first expert came in without any equipment at all. He crawled on his hands and knees smelling my steps, sniffing inside my cabinets and drawers, and stuck his head in anything his head would fit in. His conclusion?
“Your kitchen cabinets and the wood used for the steps are the problem. They’re made of pressed wood containing hundreds of toxic chemicals and glues. It’s easy to fix. Tear out your cabinets and get rid of the steps.”
Easy? Get rid of the steps? In all honesty I would have done anything . . . if I really knew it would do the trick . . . but what if I tore out my cabinets, had the steps torn out (how would I get upstairs?), and I still felt the reaction? I just had trouble trusting a step-sniffer (who charged $750), so I continued my expert search.
I found Angus (not his real name), a man who had a chemical injury in the workplace and after becoming disabled, changed careers to help create “safe homes.” He came over to “examine” the house, of course for a fee. He didn’t bring any equipment either . . . he was a sniffer as well, but he apparently had another talent. He started burping. “That’s the first sign there’s something in here.”
Angus the Burper spent 90 minutes exploring the home, inside and out, sniffing and belching, and he ultimately told me he’d write up a solution plan. Great! I received the plan from the burper the very next day.
“Use a special foil to section off your kitchen, run a duct from the insulated kitchen to an exhaust vent in the west exterior wall . . . “
Yikes! Block off my kitchen with a huge silver wrapping? Hmmm . . . maybe then I could blast my kitchen off into space and land on the moon with a full fridge. It just didn’t seem realistic. I was, however, pulling together an interesting cast of characters. If I could only find a farter . . .
I asked Angus for a bit of sanity, “isn’t there an air test that can tell me what’s in the air and where it’s coming from?” He shook his head. There wasn’t.
I doggedly sought out ventilation experts, indoor air quality experts, and construction experts. I found environmental scientists of all shapes and sizes. They were all happy to charge me. The value I received was a big fat zero.
It wasn’t until I met Dr. Rea in Dallas that I was introduced to an air quality test! A test where, using two pumps, each the size of a shoebox, the air is collected and sent off to a lab. There was a test?!?!?! A simple-to-perform test?!?!?! Burping and sniffing weren’t in fact efficacious diagnostic strategies? It infuriated me. I wanted back every penny I wasted on non-experts wearing expert labels.
After a few rants and outbursts, I moved past the anger, paid $700 for the equipment rental and sent the samples off to the lab. Four weeks later I received the report.
Formaldehyde was five times levels deemed safe (per the standards of the state of Texas where the lab samples were analyzed . . . Florida has different “standards”).
Eureeka! I found the problem! It was formaldehyde! All I had to do was find out where it was coming from. I called the corporate office of the company that built my home. They sent a VP of something out to my home. He told me precisely where the formaldehyde was coming from.
“It’s in drywall, it’s in insulation, it’s in paint, it’s in carpet, it coats new furniture, it’s in pressed wood, and it’s in support beams and furnishings.”
And so it went. I’d try a new action, seek out a solution, and after coughing up money from my dwindling reserves, wind up back at square one. It’s that recurring arrival that pulls me to “the uglier side of the fence.” It is my psychology, my inner resilience, my love for life, and my unrelenting want to be better that keep me on the side of belief. There will be an answer. There will be a solution. This will serve me so I can help others at a greater capacity than ever before.
SO WHERE’S THE CROW??? WHERE’S THE FIRE?
I titled this segment “The Crow and the Fire” and so far all I’ve addressed are step-sniffers, gas-passers, and air testers. Where’s the crow? Where’s the fire?
The crow and the fire represent on an entirely new perspective. Here comes the mindset shift that moves from “fixing the house” and “fixing my body” to “fixing my brain.”
If you suffer with MCS or some similar chronic condition (fibromyalgia, chronic fatigue syndrome, etc.) I’m going to urge you to stay with me throughout. I understand the problem now and have touched upon the solution. It isn’t my house. It’s my brain.
In an earlier installment I told you there’s a lesion in the frontal lobe of my brain as the result of the mold exposure that kicked this odyssey off. It’s clear that environmental toxins can affect the brain, but I now believe it’s what the brain decides to do with the messaging that determines whether or not a reaction takes place . . . and my brain is more severely impaired than even the doctors had pointed out. They limited their diagnosis to the physical, to the images captured by MRI.
There is an astounding chain of events that led me to each step of this excursion into an odd and unpredictable reality. “The crow and the fire” would never have come to me were it not for the woman who sent me the air test equipment and the subsequent lab results calling me days after my receiving the report. She legitimately seemed concerned with my condition, and given the green light, some of my pent-up anger needs to pour out I can’t burp it out, as perhaps some experts might, but I can let verbal expressions of frustration fly. I started to let loose, telling her how all that I learned from the sophisticated scientific test is . . . nothing! The air test showed me the problem and the problem is . . . . well . . . everything in my house is the problem. And if you learn the problem is “everything,” in terms of power, you accomplish nothing. She was empathetic. She didn’t get defensive, didn’t react to my frustrated tone, but instead surprised me. She seemed to have moved her thought process beyond the quality of the air in my home and was about to open a new door for me.
She asked me if I’d been to planetthrive.com. I had. It’s a website / support portal for people with chemical injuries and chemical sensitivities, but it didn’t draw me in. I didn’t believe that connecting with other sufferers was going to serve me. I realized how difficult it is to pull despondent people up without allowing them to pull you down, especially when you suffer with the same affliction.
“She went on, “There’s some chatter about two people, a woman in Canada and a man in London who are helping people recover from MCS.”
That’s when I first heard of Annie Hopper (the woman in Canada).
I reached out to Annie, first by email, and directed her to this blog. She responded quickly and personally and told me she had a workshop coming up in Boston . . . urging me to attend.
My defenses rose up. I’d already invested tens of thousands of dollars in traveling to workshops, doctors, and treatment centers, and with the exception of Dr. Shoemaker helping me resolve my mold toxicity issues, not a one had any lasting impact. She suggested I speak with some people who had attended her workshops. I love that. It’s something I do when people are interested in my Be Better program. I don’t want to “sell” them. I want them to hear, firsthand, of the results people like them achieved after going through Be Better (a personal growth program for fitness and health care professionals). If Annie had the confidence to put me in touch with some of her students, you better believe I was going to call.
I spoke first to one woman who told me her life turned around after visiting with Annie. She described a downward spiral followed by Annie-prompted recovery. I was still skeptical but intrigued.
Next I spoke to Candy. Candy was a participant in Annie’s workshop. She was an MCS sufferer and Annie helped her find new health. We spoke for the better part of an hour. Candy, today, works with Annie, sharing the speaking and facilitator platform, and her passion clearly comes from her own experience with insult and recovery.
A RECOGNITION AND A RECOMMENDATION
Candy did two things that prompted change in me. First, in considering whether the workshop would be suitable for me, she asked me a number of questions, many about my symptoms, some about the actual episode (the mold exposure), but then one that shook me . . . in a good way (don’t worry, I didn’t forget the crow and the fire. They’re just up ahead).
“Phil, what trauma were you experiencing before the mold exposure?”
“Before?” My instinct was to say “none,” but something stopped me. I had never thought of my pre-mold circumstance as traumatic, but it suddenly began to unfold. I was in a marriage that was cannibalizing me. I had an infant daughter in a household that I wasn’t secure in. I knew Amy and I were great parents, I knew that we loved each other, but I also knew we weren’t suited for a lifetime of marriage. We had split up once, and now we were again speaking of divorce. We weren’t fighting, and we didn’t demonstrate any anger toward each other, but we knew my goals weren’t hers, my way of living wasn’t her ideal, and our values were different making a lifetime of togetherness challenging at best. Because we got along so well, even under these circumstances, appearances led friends and relatives to believe we were at peace, living with connection and joy . . . but we weren’t. I felt I was living someone else’s life. Even my close friends thought I was happy, but inside I was torn up, so much so that I sought out counseling independent of my wife. Never before had I sought out psychological help, so clearly, in hindsight, I had some emotional stress before the mold hit. I also had a business partner who was bipolar and erratic, and my “work stress” took on a new high.
Today, in working with people who are unwell, I recognize the lump sum of all stresses as a “Stress Load” that needs to be balanced with recovery. My stress load was at an all-time max. Now . . . add in a hurricane, the destruction of the office, personal training studio, and warehouse that were my livelihood, loss of electricity for over a week (post hurricane), warnings of more hurricanes, putting up hurricane shutters, taking down hurricane shutters, and I’d have to say I was experiencing a traumatic period in my life. In fact, the most traumatic period in my life.
So, the first thing Candy helped me do was understand the mathematical equation, SL = TM + IC + H + BP.
You don’t recognize that equation? I’ll share it with you:
Stress Load = Troubled Marriage + Infant Child + Hurricane + Bipolar Partner
The second thing Candy did was recommend that I read The Brain That Changes Itself by Dr. Norman Doidge. I picked it up an hour after we hung up and I sat out on my balcony (better for me than sitting in the house) to read. I read the first chapter and I was wowed. This was a book about Neuroplasticity, changing brain wiring non-invasively, and I knew it was going to be life-changing, not only for me, but likely for millions of people worldwide.
I read about Edward Taub who was restoring function to brain injured people simply by activating new thought patterns. I read of how Taub, using monkeys as subjects, was able to map brains to determine what specific neurons fire in what specific order to facilitate an action or a thought. The brain has untapped power, and a part of its power lies in its ability to design its form, function, and the infinite potential of active pathways that link emotions, thoughts, actions, and habitual behaviors.
As I sat on the balcony wrapped up in this book, a crow landed on the railing. Off in the distance, out in the Everglades, there were brush fires and I could smell a hint of smoke. Here’s where the brain starts to form associations. I was excited about understanding a new brain science, I smelled smoke which I associate with fire, and the visual stimulus in front of me was a black crow.
I looked at the crow as I thought about my conversation with Candy and I thought about the newly recognized intensity of what I might now refer to as the trauma I had been through. In my mind, I equated the trauma with a blazing fire, and I realized that anyone who had been through a fire would have a deep-rooted fear reaction anytime they saw flames, much as I feel anxious whenever I hear of the hurricane warnings that are a part of Florida living during a recurring season every year. I flipped back and forth, in my mind, between the fire and the hurricane, and the crow sat watching me. “Imagine,” my brain went on, “if you were trapped in a fire and right there beside you was a crow.” I started to create a theoretical association. “If I was in a traumatic fire, and as I panicked and tried to escape a crow remained in my field of vision, my brain (per what I had already learned from years of studying NLP and just a few short pages from the book Candy recommended) would “link up” the crow with the fire experience, and from that point forward, whenever I saw a crow, it might summon up the anxiety I theoretically attached to fire.
I wouldn’t have any rational reason to fear a crow, and consciously I might not even be aware of it being a trigger of a stress response, but my brain, in its protective wisdom, wants to keep me away from anything associated with potential harm or trauma.
Using that line of thinking, if I could disassociate the crow from the fire, f I could recreate my brain map, the stress response would reserve itself for true danger and no longer serve as a reaction from the sight of a crow.
No, I’m not losing my mind at this point. I’m using it! I went on . . .
I developed a chemical sensitivity when I was living in a high state of anxiety and breathing in a chemical soup from the repair of my hurricane-damaged office. If, therefore, I could disassociate the “chemicals” that my brain has linked with trauma from the actual stress response, I might be able to overcome this debilitating condition. The crow in the fire stood for me as a clear representation of the mind’s ability to link unassociated events or objects and it gave me a new perspective, a new opening.
I devoured the book and was certain “I can fix this.” I can harness my brain’s ability to change and stimulate new wiring that supports me.
I registered for Annie Hopper’s workshop in Boston and made the trip two weeks later.
Before heading up to Boston, I fully connected with this new belief, this idea that the brain can change itself and I have the power to stimulate my own recovery. I started to grasp the idea of my brain linking up the stress of my marriage, the hurricane, the illness, the destruction of my business, and the mold and chemicals I inhaled and with that, the idea that I can separate that wiring.
I didn’t, at that point, have a strategy, but wheels started turning . . . and turning . . . and turning.
Thoughts and memories flooded my mind. I started to relive moments from my marriage where I felt that inner turmoil. I started to relive feelings and emotions that ran the gamut while Brooke grew inside Amy. I couldn’t turn off the thoughts, so I decided to write them down.
For 3 ½ hours I scribbled in a notebook frantically trying to keep up with my thoughts. I was in some kind of weird zone . . . reliving the past and trying to keep up with my pen. Was my writing legible? Nah. As a result of the neurological damage I suffered, my handwriting looks like a child’s random crayon propulsion, and with the speed I felt compelled to write with, I wasn’t creating a work of art, but I wasn’t writing it so I can read it. I was writing it to, in a sense, get it out of me.
I put down the pen, stepped into my walk-in closet to toss some clothes into the hamper, and suddenly, THE LIGHTS WENT ON! Everything lit up! It was as if, while I stood in that closet, someone switched on a spotlight! I know for people who have not experienced the bizarre unrelenting symptoms of MCS, this is hard to grasp, but for those who have been dodging symptoms and striving for survival, you get it. I didn’t realize how dull my sense of color had become, and within a moment, something changed in my brain. It was as if a curtain was lifted. I stood and looked through my ties as if I were an art student at the Guggenheim. I could see the differences in shades of purple. Colors were bright and vibrant, and I realize, that’s how I saw the world before the onset of this dis-ease.
I don’t know the significance of that experience, but I do know it demonstrates some sort of brain-mind shift that occurred as a result of releasing the pent up trauma.
By the time I left for Boston to meet Annie Hopper, I felt a sense of control. While I wasn’t back to my old self, I felt that I was on my way. I could consciously control some of the reactions. I began to sleep through the night which I hadn’t done since 2005. Something was changing. I was using neuroplasticity, without fully understanding it, to rewire my brain.
When I arrived at Logan airport, my heart pounded hard as I stood in the car rental line dodging wisps of perfume and cologne. I stepped into my car and it had a mix of new car smell and cleaning supplies and my head started to spin, but somehow, within seconds, I was able to quiet the reaction, and within a minute or two, my sense of smell calmed down so the odors became the background rather than the primary feature.
I checked into the Marriott Courtyards. They had a fragrance sprayer that blew bursts of chemical fragrance into the lobby at regular intervals. Again, I felt the initial reaction, and was able to quiet it. I’m not quite sure what I did to quiet the reactions, but I knew it had something to do with thinking differently to create a different neural path . . . somehow steering the stimulus away from reactivity.
When I met Annie the next day, I was elated, excited to be at what I believed was a turning point. I’ll share the Annie Hopper experience in my next post.
For those who are anxious, who struggle with MCS or similar invisible ailments, I won’t leave you in suspense. I will urge you to reach out to Annie Hopper. While she didn’t erase my struggle, she absolutely held it in a new light, one that I had some real sense of control over. Find Annie and her Dynamic Neural Retraining program at http://www.dnrsystem.com/
More to come . . . stay tuned!