This is not a Stephen King script, but the story I’m about to share certainly has a King-esque feel to it. What am I talking about? I’m talking about (eerie music plays) . . . . B…b….b….building Seven!
If you’re reading this you likely know some things about my journey taking me from mold toxicity to extreme chemical sensitivity. It’s the most frustrating experience I can imagine. It’s been an unprecedented drain and somehow every day I find the outlook of impending betterment. I realize, if I’m going to beat the medical diagnoses I’ve received, if I’m going to return to optimal health, the journey must include a search, and in that search I’m certain to take some wrong turns.
As I learned to separate the few “doctors who get it” from those who nod their heads and think “the poor guy’s losing his mind,” I developed my own network of physicians I trust to help me through this process. None of them are cheap. None of them are covered by insurance, at least not for my “condition.” Few of them are local, so every visit requires airplanes and hotels.
About 6 months ago I spent two full days reaching out to the trustworthy medical experts within my network and asked this question. “If there were one thing I can do, one resource, one treatment, or one expert that you believe would most help me, what would that be.” The opinions gelled. I came to know the name, Dr. William Rea.
Dr. Rea runs the Environmental Health Center in Dallas. He’s written books, conducted research, and has faced what I would call undeserved scrutiny by the power forces of the American Medical Association. Apparently, Dr. Rea, a cardio-pulmonary surgeon, began developing a sensitivity to the soaps doctors used to wash pre and post surgery. This happened over 40 years ago. There was no, or little, reference at that time for the condition now known as MCS (multiple chemical sensitivity) and our world was nowhere near as toxic as it is today (1500 new chemicals are released into our environment annually). A trained physician, and now I can safely say a pioneer, Dr. Rea sought to understand what the medical field is slowly coming to recognize as Environmental Medicine.
I read his articles, read one of his books, and called his office to set an appointment. My friend Kelli lives in Dallas so I thought I’d mix a social visit with the next step in my treatment. The challenge is, it’s difficult for me to travel, to ride in new cars, and to stay in homes that have any new furniture, paint, carpet, or furnishings. Still, if Dr. Rea is the king of Environmental Medicine and made the treatment of chemical sensitivity the entirety of career, he was the guy I wanted to see.
When I called I spoke with Sue, the new patient coordinator. She was nice, professional, concerned, and wasn’t in the least bit thrown by what I told her I was experiencing. Clearly, she had heard it many times before. I felt good about setting the appointment and she asked me if I’d like to stay in their Non-Toxic housing. That sounded ideal. No chemicals, no formaldehyde (which is in almost all building materials today), and no irritants? I imagined a good night’s sleep for the first time in years. Of course I’d stay in their Non-Toxic housing, and so the appointment and reservation were entered into my Outlook calendar which is the equivalent of being set in stone.
I flew into Dallas in the morning. Non-eventful flight. Kelli picked me up at the airport. We caught up on our respective life experiences and had a few laughs as we drove downtown. We found a great Mexican restaurant for lunch. I smelled it (I know that sounds bizarre, but my nose is my best defense for avoiding chemicals). I smelled fresh food. That was a good thing, so we sat in a huge round booth where my feet barely touched the floor and we ordered lunch. The waiter made fresh guacamole at the table. Awesome! Then he brought our fajitas.
Now, here’s yet another bizarre reality that is presently part of my life. Throughout a day I might have over 100 different symptoms, and they change depending on the environment. It’s honestly been near five years since I felt well. Even though I function OK, my vision, my motor skills, my circulation, my speech, my muscles, my joints, and my digestive tract are all prone to throw weird things at me at any given moment. So there I am, feeling relatively OK. Just a bit of brain fog. A little tunnel vision. Fingers a bit numb. The usual, and right smack in the middle of that plate of chicken and shrimp I saw a big fat chili pepper. It seemed to be calling me, but I’m no fool. I know those suckers can bite, so I took the necessary precaution. I asked the waiter, “is it spicy?”
He shook his head. “No, it’s very sweet. Not a spicy pepper, a sweet one.” I decided I’d cut off a little piece and give it a try. Suddenly, lightning hit the back of my neck, someone lit a flame thrower and aimed it directly at my mouth, and my face started melting. At least it felt that way. I would have screamed but my voice left me.
Kelli looked at me with a mix of concerned eyes and hysterical laughter. Here’s the amazing part. Although I was experiencing the feeling of eating the sun, all of my symptoms cleared up. Colors became very bright. My senses became acutely aware of every sound and movement. I felt like I could get out of my seat and start doing back flips through the restaurant. My eyes were watering and so were Kelli’s, mine from the pepper, hers from laughter.
Wow. What a mix of pain and pleasure. I’ve never been accused of being masochistic, but I must say it was a horrible experience that I thoroughly enjoyed. I wasn’t finished. I had to make the waiter pay!
He came back, poured some iced tea, and I put what remained of the pepper in front of him.
“OK Mr. Sweet not Spicy, you eat it.”
He shrugged. “I could eat. No problem. I eat pepper all the time. Not spicy.”
“OK, then eat it.”
Reluctantly he cut off a small piece and threw it in his mouth. He smiled, attempted to escape, but I wasn’t letting him get away that easy. “Wait, let me see. Stay here.” Suddenly tears rolled down his suddenly red cheeks. He tried, at first, to laugh it off, but that wasn’t happening. He stifled a cough as he slithered away in defeat.
I was in a good mood. We were having fun, and we drove to find Dr. Rea’s non-toxic housing.
We set the GPS for the address, but it kept leading us to a parking lot between the Marriott Courtyards and the Marriott Residence Inn. Kelli pulled in front of the Residence Inn and I looked up at the address. It was the same one we were looking for. Ah, so the non-toxic housing was in a hotel . . . and even better . . . I’d get Marriott points!
Kelli waited in the car at first. I went to check in. The very nice woman behind the counter smiled, I told her my name, and she looked at the computer. Suddenly her smile went away. “I’m sorry Mr. Kaplan, they made a mistake.”
“Yes, they put you in (pause, shaky voice) BUILDING SEVEN! (if there were eerie music available, it would have played again). Let me call Jane and straighten it out.
I waved Kelli in. She stood with me as they found me a “normal room.”
“Wait,” I asked the front desk attendant, “is Building Seven where Dr. Rea’s patients stay?” Her eyes opened wide. She looked at me curiously, and reassuring herself that a mistake was obviously made, she said, “yes . . . but you’re not one of them.”
“One of . . . . who? Or what?” I felt the proverbial chill rise up my spine.
Just then the door opened and in walked Jane, a long-time associate of Dr. Rea, dressed in her nurse attire, stethoscope and all. She seemed . . . normal. Nice even. She addressed the attendant, “He is going to stay with us, just for tonight. We’ll put him in 714.”
The front desk lady went with it, but she certainly had me concerned. As I introduced Jane to my friend Kelli, the front door again opened. Slowly. In shuffled a very thin man with pale complexion, a loose fitting white t-shirt, and . . . . a face mask. Not like a Spiderman mask, but like . . . a doctor’s face mask. While it covered most of his features, you couldn’t miss his wide eyes. He looked scared.
“Jane, the caulk! It’s the caulk!” came from behind the mask. “The caulk! The caulk!” The front desk lady looked at me as if to say, “he’s one of them.”
Jane, very authoritative and professional, said, “don’t worry Chase, we’ll move you to a different room. “ Apparently Chase, who was highly chemically sensitive, started feeling the horrible symptoms I’ve come to understand after someone repaired the stove in his room.
Trying to create a bit of levity, as is my nature, I put my arm around Chase and said, “hey, how about after they move you to the new room, you and me invite a bunch of hot ladies over for a perfume party.” I was kidding. Perfume would kill me, but I thought the “joke” might create a sense of kindred spirits. Chase’s eyes opened even wider. I had to apologize and explain it’s my warped sense of humor.
Together we walked to Building Seven, Jane in the lead, Chase shuffling on her heels, Kelli and I tentatively following behind. Jane gave Chase a key and told him to try a different room.
The rest of the property felt OK, but something changed when we got to Building Seven. I’m not quite sure what was different, the air, the aura, the drab look of the place, but It just felt uncomfortable. As Chase entered his new room, I looked up at the second floor. I saw a woman with the same face mask Chase wore peeking through the blinds. I felt like the newcomer in one of those movies where the town residents invite someone as a guest and sacrifice him to their deity. Creepy is an understatement.
Jane, with a big smile on her face (there’s always someone in those movies who makes the doomed stranger feel welcome) offered to “show us around.” As we walked, she spoke, almost like someone trying to sell time shares in a haunted house. She was enthusiastic, but somehow there was a mismatch between her exuberance and the scenery.
“This is the laundry room. We don’t allow any scented detergents or fabric softeners and ask that our residents use baking soda instead of standard laundry soaps.” We stepped into the laundry room and there I saw another resident. He had the same pallor as Chase, but appeared older, maybe in his late 60’s. He didn’t have a mask, but had the same fearful wide eyes as Kelli and I stepped in. Jane said hello, and he took a step back. He seemed to be staring at my hands. Jane instantly picked up on his stifled panic and reassured him, “don’t worry, he is going to use that here.”
Not going to use my hand? Hmmm. What did they think I was going to do?
“Your cell phone. He, as many of our residents, is sensitive to electro magnetic frequencies. We don’t allow cell phones and there isn’t any wireless internet.”
The tour was brief, as there wasn’t much to see, so we entered Room 714. If the walls were padded, it would have served as a good set for a movie about an insane asylum. The couch was a metal frame covered with foil, and on top of the frame sat a cotton cushion. I sat on it. That cushion was about as comfortable as . . . laying on a metal frame. OK, so it isn’t the Ritz, but I wasn’t here for luxury. I was here to get well.
The walls were white, the cabinets were white, the countertops were white, the beds were white, and I don’t believe there were any decorations at all. Kelli laid on one of the two beds. I had to laugh as I watched her, obviously void of a sense of comfort, trying to assure me, “it’s not too bad.”
The beds were metal frames with cotton mattresses and light cotton sheets. I debated whether I should stay or not. Jane said, “since you’re here, you may as well stay here and see how you feel after sleeping in a room without any toxic chemicals.” She was right, but I just couldn’t see sitting in this room from 5:30 PM until morning.
Kelli had a brainstorm. “Wanna go to a movie?”
“YES” came out of mouth before she finished her question.
We went to a mall, ate at the food court, and saw the premier showing of Super 8. Cool movie. Vintage Stephen Spielberg, but now, I had to go back to the Stephen King environment.
Kelli dropped me off. I sat on the couch-thing. I turned on the TV. A rerun of the Mentalist was on. I couldn’t get into it. I just felt uncomfortable. I don’t know how much of it was psychological and how much was the actual absence of comfort but it was a very long night. I didn’t sleep for a moment. I kept looking at the clock thinking hours had past and only 7 minutes had gone by since my last clock check. I had visions of pale white people with face masks storming my door with torches, taking my cell phone, and putting me through some ritual where I became “one of them.”
Here’s the reality. I am one of them. They suffer from Chemical Sensitivity and although I make light of it, it is extremely debilitating. It puts extreme limits on an individual’s ability to function in the real world. These people were suffering, and although I still had a great hope and optimism, seeing them was a reminder of what lies ahead if I fail to defeat this condition. Perhaps that freaked me out the most.
When I got out of bed at 6 AM, I went for a walk and a light jog. I then went into the hotel next door, the Marriott Courtyards, so I could order some breakfast and use my cell phone. I wanted to reconnect with the world before I took the shuttle bus to the Environmental Health Center. Egg white omelet, a call to my assistant Stacey, and I was feeling a sense of freedom, a renewal, and I have to admit, despite the lack of sleep and oddity of Building Seven, I felt pretty good.
With a skip in my step, I headed back toward Building Seven, anxious to meet the revered Dr. Rea. I went out behind the building where Jane told me the shuttle would pick me up in the morning. I was the first one there. It was 8:25, the shuttle was supposed to arrive at 8:30. Two minutes passed and a door opened. I was about to meet other residents of Building Seven, but this morning I was approaching it with a new attitude. These were people, like me, who were suffering with a misunderstood disease, and they all had stories to tell, experiences to share, and perhaps I could help to reignite some hope in those who felt they ran out of options. A woman came out of the room and she looked . . . I daresay . . . normal . . . not like the people I had met the day before. I didn’t realize in that moment that she wasn’t a patient. She was a private nurse, and she soon after wheeled out a very fragile older man in a wheelchair. He had the classic Parkinson’s symptoms, his head tilted sideways, hands and legs trembling. I said hello and they both gave me a kind but tentative nod. There were others who funneled out shortly after, all carrying canvas bags, some wearing face masks, all keeping to themselves, and all carrying glass bottles of water. I came to understand that they would spend entire days at the Environmental Health Center going through a host of tests, treatments, and exams. I learned that some of them lived in Building Seven . . . for over two years! It was the ONLY place they felt safe.
The shuttle pulled up and the nurse struggled to lift the man from the chair. “Do you need help?” I asked, and she squeaked, “please,” so I leaned forward, thinking I would help him up from his left side, she from his right. As I bent forward, he fell toward me, throwing his arms around my neck, so I lifted him and carried him into the back seat of the shuttle. He thanked me. I had such an uncharacteristic mix of emotions. I felt sad for these people, but also fearful that they had debilitated over time, and perhaps I was now where they were just a short time ago.
I sat in the front and had a cheery conversation with the driver. She told me about her kids, her work, and . . . she told me many people told her D. Rea saved their lives. I thought of Pet Sematary. The pets came back to life, sort of, but they were never quite the same. Then I wiped it out of my mind, walked into the facility with a smile and nothing but optimism, and I met Dr. Rea.
He had wisdom. I don’t use that word often. I’ve used it to describe Joe Weider, Dr. Michael Colgan, and a handful of other older-than-I mentors with real life experience, a deep intelligence and continued curiosity. Dr. Rea, I’m guessing, is near 70, but he knows of what he speaks. Throughout the Environmental Health Center, people move from infra-red sauna to yoga, from breath testing to hair testing, from counseling to examination. Dr. Rea examined me, noted my loss of balance and impaired fine motor function, discussed the ongoing muscle loss, and helped me understand the process of getting better. Then he threw a dart.
“Most of the people who come here do NOT get better.”
I froze. As I’m summoning up optimism, he pierced my new-forming belief with a single sentence. I asked, a bit angrily, “why?”
I understood his answer. It reminded me of something I’ve dealt with for many of the early years I spent trying to master personal training. “Most people aren’t willing to do the work. Everyone here has been affected by the environment, but some, like you, have mycotoxin damage from mold. Others have been exposed to high levels of pesticides on farms. Some have been damaged by chemicals in the workplace. Some have filled their lungs and ultimately their cells with formaldehyde from new building supplies. Bad air, bad water, unnatural pollutants, food additives, and individual levels of oxidative stress all contribute to filling the rain barrel.” He pointed to an illustration of a rain barrel on the exam room wall.
“As long as you’re detoxing as quickly as you’re taking on compounds, you’re OK, but once the rain barrel overflows, your body starts to suffer damage, and from that point forward, unless you clean things up, you are sensitive to items and compounds that never affected you before.”
I went back to my earlier question. “I understand some people aren’t willing to do the work, but what, specifically, does the work involve?”
“First, although we know you’re chemically injured, every patient has their own figurative finger print. We have to test to find out what’s going on specifically with you, and there’s lots of trial and error. First we have to test the air in your house. Then we have to test your hair, your blood, your saliva, and your urine to explore what foreign substances have moved into your body. Next, we have to identify which ones you’re sensitive to, and we do that with a lengthy series of skin tests. The skin testing can take a week, so you’d have to be here for at least a few days. Most people who come here just want a drug, a cure, a prescription, but it just isn’t that simple.”
“Doc, I’ll do the work, but once we figure things out, what’s the treatment?”
“Well, we connect you with our nutritionist to determine what foods may be affecting you. We look at how you’re digesting because if your gut is compromised any oral treatments will be limited. We try a variety of detox techniques including sauna, hyperbaric oxygen, and chelating agents. We have to be careful, if you have heavy metal toxicity, as is common with most people in your condition post-mold exposure, you’re going to have to make sure you gradually release the metals or you can wind up really sick. We then, with a better understanding of your individual sensitivities, use your own blood to create an antigen. It’s all a process that becomes unique to each individual. For some people who do the work, they find themselves miraculously better in 3 months, others it takes 3 years, but if you’re willing to do the work, we’ll help you get well.”
There are a lot of lessons in here from me. Prior to 2005, I never knew illness. I never knew what it was really like to not feel “well.” I also never knew what it was like to be a patient caught up in a medical system that doesn’t understand or recognize the ailment.
I learned from all the people I met. I had a chance, while I was in the Environmental Health Center, to talk to some of the Building Seven residents. I am, in fact, one of them. I met a woman from Iowa who was diagnosed as depressed, medicated, and one step away from being institutionalized when she learned the chemicals used on her Dad’s farm had invaded her cells. I met a man who moved in with his ailing mother into a water damaged building. He spent two years caring for her, and when she passed, he was unable to function. He learned what mold can do and was trying to get better. I met a man who worked in a factory in West Virginia, another who inhaled chemicals coming through the air vent that sat over his desk at work, and another who apparently had a shocking chemical soup in her town’s water supply.
I didn’t meet many happy people there, but I did meet good people who appreciated a caring peer, a new friend, an ear that would really listen. I feel as if I have a responsibility, not only to myself, my family, and my daughter, but with my newfound knowledge to take this to a point of complete reversal and then empower everyone who suffers with chemical injury and its residual effects to do the same.
So, $2100 later, I wound up leaving the Environmental Health Center and the next step was to order a $700 air testing kit to determine what chemicals are in my home. I stopped in my tracks. “There’s a kit?” My blood boiled. I’ll tell you why in the next installment. Until then I remain ALIVE and moving toward greater enlightenment and ultimately recovery, and perhaps in search of the next hot chili pepper.