By the spring of 2004, I was worn out, yet still felt driven to find a solution to this nightmare. I had lost my belongings three more times because they had been contaminated by chemical or mold exposures. I had lost my sense of identity and no longer even had my pictures or journals to conjure up memories of my past. My passions went neglected because I was unable to read or write anymore. In the mirror, I saw a pale and puffy-faced stranger with one eye drooping and a thin mess of dried frizz that had once been my curly mane of pride. I needed help.
Unexpectedly, at this time my nonsmoking stepfather was diagnosed with lung cancer. Armed with oxygen and a respirator, I made it back to New York just in time to visit with my ailing stepdad, now hairless and hollow-eyed. Although he had never before been expressive, he hugged me close and told me he finally understood my situation. My parents decided to send me to a renowned environmental health clinic in Dallas, Texas. He died the day after I left for the clinic.
The clinic didn’t produce a miracle, but it did provide validation and support, especially from the hundreds of other patients who were experiencing the same thing. There were Gulf War veterans, nurses, teachers, pilots, executives, artists, and more, all poisoned by pesticides, formaldehyde, disinfectant, mercury, black mold, burning oil fields, or other toxins. One investment banker’s health had crashed after exposure to air fresheners.
Multiple medical tests, a neuropsychological evaluation, brain scans and skin injections, all for measuring toxic injury, provided further tangible proof that my chemical sensitivity was a serious problem. I was diagnosed with toxic encephalopathy, peripheral neuropathy, vasculitis, chronic inflammation, toxic exposure to specific heavy metals and mycotoxins, severe hypothyroid, digestive disorders, impaired detoxification, gluten intolerance, autonomic nervous system dysfunction, chronic sinusitis, allergic food gastroenteritis, immune dysfunction, chemical sensitivity, and more.
I learned that exposures could make my emotional state feel like an out-of-body experience because the nasal passage connects directly through the blood-brain-barrier to our limbic lobe, which controls our most basic emotions like fear, anger, and elation. So inhaling a synthetic fragrance can immediately cause neurological changes that can affect everything from memory evocation to mood, an effect that is magnified for people with MCS.
After spending a few months in Texas, I returned to Boulder, continuing the detoxification protocol locally with daily saunas, shots, supplements, oxygen, and biweekly IVs. I also resumed the search for a safe home. But I remained nomadic—house, tent, and car hopping, fleeing in the middle of the night from mosquito spraying, fragrance emitted by neighbors’ dryers, or cigarette smoke.
But camping proved a blessing. One weekend I set up my tent near an outdoor bluegrass festival (many passions had to go, but not music if I could help it). While I was standing there, drenched in the pouring rain, a beautiful green-eyed man walked up to me and asked, “Would you like to share my umbrella?” After momentarily debating the risk of detergent on his clothing, I agreed. After all, it was my thirty-sixth birthday, why not be daring? Matthew is still with me, and I’ve never loved a better man.
After Matthew made the switch to safer products and turned off the gas heat in his condo, I was even able to tolerate his place for a while. (“Hi, I’ll be your girlfriend, but I’m homeless. Do you mind if I move in?”) Then his neighbor plugged in four air fresheners, and fumes seeped into Matthew’s condo, triggering in me a bloody nose, vomiting, and an irrational anger towards Matthew. Thankfully, he was familiar with my reactions by then and tolerated them (and my incessant sniffing of his clothes and hair).
The air freshener fumes, however, clung to the walls of Matthew’s condo, and I was homeless again. There I was at age thirty-seven brushing my teeth in the local co-op restroom, bathing in Boulder Creek, and sleeping everywhere, when in a parallel life I might have been a suburban mom shepherding her kids to school in her big SUV.
And then finally, after three years of checking out an enormous number of places to buy or rent (I couldn’t afford, or chance, trying to build a new safe house), my luck changed. An unscented acquaintance put her off-gassed, 1970s apartment on the market. After sleeping there for a while to test the place out, in October of 2005, at long last, I bought a safe apartment.
During the next year, I experienced a great deal of relief in my safe apartment, where double weather stripping and enormous air filters helped block outside fumes. I also bought safe detergent and fabric softener for my neighbors and convinced my homeowners’ association to use organic lawn care. I added a filter to every faucet and used electric appliances and electric baseboard heat. I slept on an organic, flame-retardant-free mattress. A space-age-looking vapor barrier (Denny foil) covered the concrete subfloor that remained after I tore out the carpet. My mother helped by buying me a small infrared sauna where I sweat daily to help eliminate toxins.
Something changed though, and during the summer of 2006, despite all my precautions, the apartment picked up some sort of contamination that I couldn’t tolerate. A neighbor’s renovations? A faulty washing machine issue? In trying to salvage the place, I ripped it apart. Finally, after sleeping on the deck for months while attempting every solution and praying the problem would resolve itself, I moved out. With no other options, even though I still didn’t do well at Matthew’s place with the lingering fruity fragrance from his neighbor’s air fresheners, I once again moved in with him, this time bringing portable oxygen and six air filters.
* * * * *
So this is my life now in 2006:
I’ve learned to live with many unimaginable limitations and must always be prepared to leave a situation when chemical exposures occur. I try not to get attached to places, clothes, furniture, or cars. (I’ve gone through five cars in four years. The last one leaked antifreeze.) Now I drive a dented, paint-peeling, 1992 Chrysler LeBaron with the carpet ripped out—a symbolic change from the cute Celica Convertible with which I began this journey.)
Exposures abound, and I can’t be in most public places or stores or even near houses spewing fabric softener from dryer vents without feeling awful. Even though I often wear a mask, which still embarrasses me, I have problems in these places. Overall, I remain ceaselessly on guard, knowing too well that my health could suddenly deteriorate again because of one more bad exposure, like when they start spraying pesticides in the spring.
My social life is obviously limited. Nearly every store, home, office, and public bathroom contains air fresheners. Besides a lack of places I can go to, friends are loaded with fragranced products and most would rather not change their shampoo for me.
I find balance through spending a lot of time in nature, embracing the part of life I can still enjoy. Despite a bad foot, I often navigate the mountain trails around Boulder (albeit holding my breath when detergent-scented hikers pass). Matthew and I spend most weekends camping, or in our organic community garden plot. Although I am legally disabled and surviving on Social Security disability income, I volunteer for short periods at the local co-op, spend a lot of time helping others who are newly tripping into MCS, and devote much passion to my newfound armchair activism, like fighting pesticide use and corrupt trade secret laws for synthetic fragrances. But I still dream about the next venture I will start someday when the business of health isn’t so all encompassing.
Sometimes the things I miss overwhelm me. I long to go to concerts, yoga classes, a friend’s party, or even to pump my own gas. I ache to travel, and I miss working, which is impossible because I cannot be in offices or use a computer for any length of time without having a reaction. Ultimately, I’m learning how to do less.
While I try to maintain peace within, without a safe home, there is still a sense of urgency as Matthew and I watch my health slide instead of stabilize as it had been doing before. When I lived in my formerly tolerated apartment and was following a careful diet and utilizing daily oxygen and a sauna, I was functioning at a higher level. My brain came back 100 percent. I could go into some stores. I was able to use a computer again (with the CPU in the closet) for about two hours before my hands and head would tingle and swell. My emotions and hormones stabilized. I could read new books that had baked in the sun for a few weeks. And I was writing again. Although I wasn’t cured, I felt dramatic improvement in my symptoms, and the experience taught Matthew and me that avoidance of chemical exposures through having a safe home, coupled with ongoing treatments, are key to my having some level of normalcy with MCS.
Now we are searching for land, which is rare and exorbitantly expensive in Boulder, but after checking out a huge number of existing houses, we believe we have no other choice than to build a nontoxic home in the mountains. We’ve also witnessed people I’ve met with MCS function much better when they moved into homes they had specially built. So we search, and we hope, and we wait, trying not to worry about where the money will come from or what would happen if we spent everything building and it didn’t work for me. Instead we drive around and fantasize about the healthy home we’ll enjoy one day, about the kids we’ll be able to have, about what it would be like to be able to open up our windows and breathe fresh air.
I used to believe in a magic-bullet cure, and I tried all the treatments that promised such a dream. Today, while I can’t bury that unfounded hope entirely, I have a deeper understanding of how this condition works, and so I put my energy instead toward finding a way to manage my symptoms, creating a safe space, helping others through this, and finding joy in the smallest of moments. Although I keep researching new theories and treatments diligently, I know that for me avoidance is the best way to live symptom free because when I am not around any irritants, I feel strong, sane, and clear-headed.
I have bounced around all the emotional phases of illness. I’ve gone through the stage of feeling enormous regrets, of attempting to justify why I should be sick now. I’ve experienced rage and depression, bitterness, hope, and acceptance. And I know my situation can and will change all over again.
Now, although I have mourned the loss, it seems useless to wonder what my life would be like if I had never been exposed to the 9/11 toxins and then the mold in the old house in Virginia. Instead, the enormous challenge lies in creating a new sense of purpose. In the past, so much of my identity was tied with my career. But today I am only just beginning to understand how all that has happened to me matters only in who I become. To me, this means having better, healthier priorities—focusing on treating myself, others, and the environment well, following my passions, and loving deeply, while also being careful not to tie my identity only to my disability.
I’ve also had to accept how vulnerable we all are. And while there may be reasons I’m more susceptible than others, the reality is that these toxins can affect anyone. To that end, I hope there is purpose and meaning in telling my story and that my doing so may help keep someone else from going down the path to chronic illness.
It is now August, 2008. Matthew and I are married and on April 16, I gave birth to our beautiful baby girl, Isabel. Although she has digestive issues and allergies to foods I eat (I’m breastfeeding after years of detoxing), she is otherwise happy and healthy. The pregnancy and labor were extremely difficult with complications, but Isabel is well worth it.
We also just broke ground on our healthy house in the foothills of Boulder. Having a loving partner and an amazing daughter has brought such meaning and joy to my life. Every day, however, I remain challenged by MCS issues.
Alison Johnson’s note in 2018: Unfortunately, Jill and Matthew’s dream of building a healthy house in the foothills of Boulder collapsed because they had an enormous bill from an excavator for removing some huge underground boulders so that the site would be buildable. It was clear at that stage that their modest funds couldn’t possibly suffice to construct a healthy house on the site.