Ego, you are dismissed, at least for now. Honesty is the order of the day and as I prepare to let loose, my heart pounds hard. The pounding is part apprehension about facing my present reality, part an acute reaction to the chemical stew I’ve introduced into my cells, and then there’s the good part. The anticipation of something wonderful.
In a previous post I acknowledged that I need help, but here I sit, months later, acknowledging . . . I don’t know how to ask for the assistance I need. I honestly suck at asking for help. From 7th grade to 45 years old I seemed to find answers. I faced challenges and found solutions and each challenge/solution made me wiser and stronger.
In 2005 Hurricane Wilma changed my life (read the previous posts in chronological order if you don’t yet know how). Today, after being misdiagnosed with MS, Parkinson’s, and a host of other chronic diseases, none of which I really have, I know from a biological perspective, what led to my struggle was the inhalation of mold. Along the way, over the course of the last 8 years, I’ve been told I had limited time to live, I have been subjected to debilitating periods resultant from exposure to perfumes, cleaning supplies, pesticides, and God knows what else, and I’ve incurred unfathomable financial costs.
OK. I mentioned financial. Here’s a part of the reality that I’ve only faced within the last 10 days. I totaled up the expenses. They include medical expenses (not covered by insurance), moving costs (I’ve moved 11 times in 8 years . . . never by choice), and home repair costs that fell short in trying to remedy the toxic indoor air quality that has plagued me. I put a pen to it. This hurts to say . . . but remember, this is a day of honesty. $1,000,000. One million fucking dollars down the drain. I’ve invested 8 years and over $1,000,000 in attempting to rediscover my health and it’s all been a money-sucking bottomless pit with nothing on the other side.
Don’t mistake this for complaining. I don’t complain. While, when studying the archetypes that make each of us unique, it’s clear that we all at some level host the Victim archetype, it’s one I rarely allow to surface. I don’t complain. I seek answers. I don’t feel victimized. I convince myself I’m blessed and this is a necessary part of the journey. That said, in this moment, it pains me, frustrates me, and at some level angers me how much wasted money, time, and energy I’ve been party to.
I wish I could say some of it paid off. At this moment, I’m paying rent on a home I haven’t lived in in two months and as of last month I moved all my remaining belongings out of. Over the course of the last 3 years, I gave away every piece of furniture, every book, every souvenir, every memory with the exception of my guitars and grand piano (now in storage running a tab of $85 per month). I moved my televisions, inflatable beds (got rid of the mattresses and box springs), and clothes into a new apartment, one that I cannot even walk into without suffering effects that have sent me to hospitals on far too many occasions.
There’s a book in me. Maybe several. Perhaps it will share the invisible dangers that our toxic world has brought us, dangers I’ve witnessed in the role of the canary in the coal mine. The condition named Multiple Chemical Sensitivity is such an enigma it remains unrecognized, misunderstood, and often chalked up to stress or a loss of sanity. I assure you, it’s real. I also know, there’s more to it than that was brought on by mold.
When the body becomes toxic at a cellular level, the communication between the brain, the mind, the immune system, and the gut begins to break down, and the body fails to recover from the adrenal overload that leads to autoimmune inflammatory disease. There is an emotional element that drives the limbic system to associate chemicals with danger and that perpetuates the flood of immune warriors and their misdirection so they work to attack rather than heal. I’d also have to say, while I’m being completely honest, there’s a spiritual element. Somewhere between “life is great” and “nobody understands my struggle” the spirit gets crushed and it takes a rallying of mind, body, and spirit to maintain optimism when all seems bleak.
I’ve met people who’ve been cured of MCS, but more who’ve been destroyed. I prefer to model those who were cured, but it isn’t a straight line. Annie Hopper cured herself with limbic system retraining, a variation of NLP directed to brain rewiring. Today she is one of the most inspirational speakers on the topic. Dr. Daniel Pompa cured himself with avoidance of the irritant and years of extreme detoxing. Today his practice is dedicated to helping a small army of doctors understand toxicity and its cure. Henry Wright, a Georgia-based pastor cures MCS and environmental disease by connecting people with spirituality and a surrender to Christ.
My own spiritual journey through this process has led me down some amazing roads. I’ve met and befriended ministers, rabbis, Kabbalists, clairvoyants, shamans, and spiritual healers. I’ve met whackos and knowers. I’ve seen things that evidenced there is more than what we can discover with our five senses. I realize there is a spiritual component to healing that serves in harmony with shifts in psychology and biology.
Why, then, am I still in this mess? Because, as I have shared for decades, we are all the same but we are all different. What worked for Dr. Pompa is clearly a piece of my healing, but he wasn’t affected by mold. What worked for Annie Hopper is clearly a piece of my healing, but she lived in a houseboat for a period of time before finding relief with her brain retraining. Dr Henry Wright preaches and ministers and those who come to him find freedom from MCS, but my heritage and my evolving spiritual beliefs don’t fully align with his teachings.
8 years, 1 million dollars, and 11 homes after this all started, I sit here without a place to live, without a bed to sleep in, without a desk where I can sit at my computer and work, without the clarity of thought I’ve always taken for granted, and without a single guide who has led me to cure, and while despair is an option, it’s not one I entertain. There’s an answer. I’m far from the health I’ve known but I believe very close to the solution arising. There are also lessons that I’ve learned, hard lessons that my stubborn instincts had to be crushed by before I accepted a new series of truths.
One of the greatest lessons is, after years of building a career by helping people, I’ve been taken advantage of, repeatedly, by people who put their self-interests above their ability to help others in need. I’ve never thought of myself as someone in need. Right now, I am. Honesty. I am.
Last week, as I had to physically leave the apartment I moved into because the paint fumes were robbing my health, my friend Jessica asked, “can’t someone give you a break?”
“A break?” Every landlord charged me months beyond the time I spent in the home I rented, and I’ve never failed to pay. Every doctor charged me whether or not he or she helped me. Every airline, hotel, air purifier seller, and drug manufacturer was happy to take money from me without any concern for delivering value. Is this the Victim mentality? No. It’s the wake up call.
I have to summon up a new sort of toughness. Not the bold strength I’ve always relied upon, but a strength of admission, of vulnerability, and of a willingness not only to ask, but to embrace and welcome true help. It’s time for someone to give me a break. It’s time for someone to help me find a safe place to live, a place where I can raise my daughter who was used to a beautiful 5-bedroom home on the water in a great neighborhood and now cries as she watches her Dad pack little suitcases to move from hotel to hotel wondering when we’ll again find a “home.”
I realize I have to humble myself even further, to really reach out for help. To ask, and to do whatever I’m led to do. I have to learn to trust my intuition and get in touch with the spiritual pieces that will contribute to my healing. This is a step, a vital step. I’m out of money. I’m very limited in my ability to work or to be indoors, and despite blood pressure that shoots up to insane levels threatening stroke, I can’t go to conventional hospitals or ER’s without the effects mounting. I need help.
So I’m asking. I’m going to add a section to this site. Up until this moment, this blog was a release for me. I didn’t write it for anyone else, but found it attracted a great many who suffered with invisible and misunderstood illnesses.
As my former landlord continues to ask me for money for a home I vacated, and as my present apartment complex is locked into “policy” which includes my paying for breaking the lease, my bank account nears zero. I can no longer cough up a first, last, and security, although my track record, despite hardships, has me paying every person or company I’ve ever owed. I’m not a risk of non-paying, but I do need a place that is safe for me.
It must have white paint (toxic compounds are in the tint) that’s been dry for over two years
It must have pure wool carpet or wood or tile floors.
It cannot have new cabinetry (if the cabinets use pressed wood they must have been installed at least 7 years ago).
It must have a yard, an open outdoor area, and/or a pool deck (screened or not) where fresh air circulates.
It must have at least three bedrooms as my daughter lives with me 3 days per week and I need an office space.
It must pass a mold test and have never had unremeditated water damage.
It must have clean ductwork and a powerful air handler (inside the home, not in the garage).
A few months ago I went to stay with a wonderful couple out in Forest Knoll, California, just north of San Francisco. It was an escape for me where I can breathe clean air. The restaurants serve organic food grown locally. People grab apples or berries off of local trees when they want a snack. Homes are built into nature with respect for the environment. You don’t see pesticide trucks. You don’t see synthetic landscaping in manufactured communities. The homes are built into and alongside mountains and redwood trees. It’s amazing how much different the air is than where I live.
I’m often asked “why don’t you leave Florida?” I can’t. My daughter lives here and she has been and remains my #1 priority. In that lies part of the challenge. In rental communities they jump to replace carpet and repaint as soon as someone vacates. In “communities” the homes sit on swamp land covered up and treated with pesticides before the homes are even built. The materials they use for building constitute a “kit” with mass produced drywall, insulation, and concrete all prepared, treated, and preserved with aldehydes and other toxic chemicals. That’s what makes this hunt for “safety” so difficult.
My career has been built upon my ability to communicate publicly. I’ve stepped away from that for a number of reasons and now, it’s time to revisit it as a means to finding solutions. I’ve decided to write letters. A series of letters. I’m going to write to real estate moguls hoping there’s some benevolent builder who has a situation that works for me. I’m going to write to spiritual leaders who are in touch with their communities. I’m going to write to media outlets and personalities who might help me spread this vital message of warning along with an inspirational message of fortitude and what I believe will be a dramatic restoration of health. I’m going to write to friends, colleagues, peers, and scientists. To doctors, politicians, academians, and advocates. I’m going to make these letters public and available in the hope that someone, somewhere, knows someone who can help. I welcome and invite direction or assistance from anyone. I’m being honest. I need it.
As a closing note, a huge part of what keeps me going is the awareness that millions suffer with similar conditions, and most of them suffer far worse than I do. I’ve spoken to a great many who contemplate suicide, who wish for the Angel of Death, who have been completely alienated from those they ever cared about or loved. With solutions, with my own healing, I become the Wounded Healer, the person who not only stepped in the waters of illness, but nearly drowned in them, the person who was willing to humble himself, put his ego aside, and in that find answers, answers that are far-reaching for those who suffer as well as for those who needn’t suffer in the future.