This story appears in my 2008 book Amputated Lives: Coping with Chemical Sensitivity. Linda’s case of multiple chemical sensitivity and chronic fatigue syndrome was a particularly extreme one, and her husband gives a poignant and insightful account of the frustrations she encountered with a range of chemical exposures, including to fragrances and fabric softeners. A great many people whose loved ones suffer from multiple chemical sensitivity or fragrance sensitivity will find this account deeply moving. And it is yet another example of the loss to society and our economy when illnesses like MCS are ignored or not accommodated through measures like fragrance-free workplaces.
My wife, Linda, was born in Lakeview, Michigan, in 1952, and she graduated as valedictorian of her high school class in 1971 with a perfect 4.0 GPA. Just three years later she received a B.S. degree in Computer Science from Central Michigan University, again with a perfect GPA.
Linda was not a sickly child, and there was nothing that seemed to foreshadow what her life would later become. She was hired by Upjohn as a computer systems analyst, a job that she loved and distinguished herself at. In 1975, having barely launched a promising career and having been married less than a year, she came down with an intense flu-like illness that would not go away. For six months, swelling from throat inflammation would sometimes almost shut down her airways. Her tonsils ulcerated and fever ravaged her, but doctor after doctor assured her that her illness would all be over in a week or two.
When Linda finally recovered—after a fashion—she returned to work, only to relapse a few weeks later. It was like that for years: a few weeks of being “well” enough to drag herself to work followed by a few weeks in bed, over and over.
When I recently met Linda’s boss from those days, he told me that Linda was the first person in the history of Upjohn to do something that was unheard of in those days. The company paid several thousand dollars to run a dedicated phone line to her home and gave her a time-sharing terminal so she would not have to come in to work. It was telecommuting before there was a word for it. “Linda accomplished more in a half day than some of the other people in her group did in a whole week,” her former boss said. “It was a no-brainer decision to keep her working as long as possible.”
Eventually, Linda was given a diagnosis of chronic fatigue syndrome (CFS). Then at a later point she was given a diagnosis of myalgic encephalomyelitis (ME), the term used in the European Union for particularly serious cases of unrelenting fatigue and recurring fever like Linda’s. Her deteriorating cognitive abilities eventually forced her onto disability, which she received on the basis of a measured drop in IQ from 180 to 102 over a two-year period.
Characteristically, despite this staggering loss, Linda simply re-invented herself. She had grown up on a dairy farm and had always had a special relationship with animals. She became a gifted breeder and trainer of Shetland sheepdogs “Shelties” and raised several who became U.S. and Canadian champions. Her top champion, Chris, graces the cover of one of the popular Sheltie books to this day.
Linda established Dayspring Kennels at a beautiful farm in Allegan, Michigan, and branched out into Shetland sheep—after all, that is what Shelties were bred to herd. Because of the delays and hassle of dealing with the Shetland sheep registry in the U.K., she founded a registry for North America that eventually grew into the North American Shetland Sheep Association.
Unfortunately, deteriorating health and the end of her first marriage forced Linda to sell her beloved farm and nearly all her animals. She moved to Kalamazoo, Michigan, with her retired champions Chris and Sonny to figure out what awaited her next.
That’s when Linda came into my life. Neither of us exactly believed the ensuing whirlwind courtship; we were married in 1994, less than six months after we had met. It wasn’t really either of our styles, but in retrospect, I am eternally grateful for all the living and loving we packed into the next six years.
Those familiar with the “push/crash” phenomenon in chronic fatigue syndrome know that the only way for someone with that illness to do “normal” things is to “push through” for however many hours or days they can and then “pay the price,” often being bed-bound for some weeks thereafter. This was the only way Linda was able to realize her love of travel and other activities that I had the honor of sharing with her. We made it all the way to London in the late spring of 2000, but it was even more difficult than usual because Linda was increasingly sensitive to the perfumes, fragrances, and petrochemical fumes involved in such a trip.
Over the next three years or so, it became obvious to us that Linda’s life was shrinking still further, and probably for good. Fortunately her physician, a specialist in chronic illness, was as familiar with MCS as he was with chronic fatigue syndrome, and he recognized her chemical sensitivity immediately.
One of the largest problems for Linda was that she became acutely sensitive to the mycotoxins given off by mold during this period. Living as we did in a desert in Arizona, mold was not nearly the problem it would have been in other climates, but Linda had a lot of books, papers, award certificates, and the like from her years in Michigan that had originally resided in a moldy basement back on her farm. By disposing of all these treasures, most of our books, and replacing all the carpeting in the house with tile, we were able to pretty much eliminate mold as an issue in our home environment, but by then the damage had already been done.
Linda became sensitive to the slightest amounts of volatile organic chemicals (VOCs) to the point that she was unable to leave the house, except to see a doctor. Even that excursion out of her controlled environment usually produced more harm than any help the medical appointment could yield.
Many aspects of daily life became a struggle. For example, the neighbors on one side used fabric softener copiously, filling our backyard with clouds of strong-smelling fumes whenever they ran their dryer, which was frequently. For this and other reasons, it was very risky for us to leave the windows open for fresh air or for Linda to venture outside in the sun to enjoy the lush backyard whose landscaping she had designed and nurtured.
Because of neurological problems, Linda could no longer stand to watch videos and could not read more than a paragraph or two at a time. No more books, virtually no form of mental escape from the daily torment. Linda said that she would not wish this disease on her worst enemy, a sentiment I’ve heard from more than one MCS patient.
No disease is a respecter of persons, but there seemed to be some-thing particularly awful about the combination of Linda and MCS. Linda loved and relished life in an extraordinary way; MCS brought her every imaginable form of death. She had experienced a lot of physical suffering in life with dignity and grace; MCS raised that suffering to unimaginable levels. She was the antithesis of the self-centered drama queen, yet MCS put her in the middle of crisis after humiliating crisis and rendered her helpless. Linda was all about transcending her limitations, but MCS required her to adopt an ever-vigilant stance to protect herself from the everyday trappings of life that she used to embrace with enthusiasm. She had been a powerful, strong, intelligent woman; MCS reduced her to a confused wreck who at times could not remember my name.
I find it difficult to describe my feelings about what I witnessed happening to Linda at the day-by-day, minute-by-minute level that no one else saw. In its worst forms, MCS seems to be designed by hell itself to destroy a person at the most fundamental level. It is not simply a mindless tumor crowding out healthy tissue; it is not simply a fact of biology compromising one’s bodily functions. There were times in Linda’s case when MCS seemed to me like a malevolent intelligence bent not just on taking life but on exacting the maximum possible mental, emotional, spiritual, and physical suffering.
The whole experience did far more to undermine my faith, however, than it did Linda’s. Sure, Linda had tears of loss and frustration, but she never stopped believing that there was some kind of overarching reason and purpose for even what her life had become. “God is there in the really big, important crossroads,” she was fond of saying. She believed he would provide for her at that moment when she left this world for whatever comes next.
Somehow she was still able to tell her family, “I’ve had a good life.” Somehow in her final months she worked hard to pull together a life scrapbook and to write a barely legible but heartfelt personal note to each and every one of her loved ones and closest friends. Somehow she chose a simple bequest for each person and saw to it that I packed them in a box and that it was all noted down on a checklist so that I would be sure these things got to the right people despite the chaos and grief right after her death.
When she finished these tasks in late June of this year, it was down to a simple waiting game. “I might last another year,” she said, “but sometimes it seems like there can’t be more than a few days left in me.”
We lay on our bed the Sunday before she died, watching a gentle and much-needed rain fall on the desert vista outside the window. “It’s so beautiful,” she said softly, struggling to focus, a little echo of the awe and wonder coming back to her voice for a few seconds. “I have gotten to see so much beauty.”
One morning I had gotten up early, leaving Linda to sleep. She had been up off and on all night as usual and had changed her nightshirt three times because of the massive sweats she had pretty much continuously. These night sweats had apparently become her body’s main method of getting rid of toxins. I did a little work and went to have coffee with some friends. When I came back, Linda was gone, and I was grateful that her end appeared to have been peaceful. She was only fifty-four.
I am not sure what happened to the rest of that day. The authorities asked questions, and as is always the case when someone dies at home, gathered evidence and took her body off for autopsy. I won’t know for months, I’m told, an official cause of death, but the details are not a matter of much curiosity to me, other than to know it wasn’t agonizing for her. And as agonizing as her life had become, even that wouldn’t bother me as much as one might think. Linda had said to me some weeks earlier that she felt now she could bear anything as long as she knew it wasn’t going to last too long.
Perhaps in death, as in life, the medical professionals will not know the right questions to ask or how to recognize what is in front of them to see. I’m certain of this much: the cause of Linda’s death will be listed as anything other than “multiple chemical sensitivity.” The disease will be invisible to the end. “MCS,” they’ll say to themselves, “doesn’t kill people. We’re not even sure it exists.” Linda and I know better.