David’s Story: Fragrance Sensitivity Leading to a Divorce and a Difficult Search for a Safe Place to Live

 

My father was an analytical chemist and an inventor. He had a lab in our house just across the hall from my bedroom, so I was exposed to a lot of chemicals as I was growing up. I remember that when I was about ten years old, I would react to these chemicals with sudden fatigue on some occasions and would have to sit down or lie down and rest. I learned that some foods caused gastrointestinal distress and fatigue as well.  In junior high and high school, I was easily distracted and often confused about assignments. Teachers told me and my parents that I was a  gifted underachiever.

Despite these developing health problems, I succeeded in getting a Ph.D. degree in psychology, and before collapsing from MCS, I was engaged in private practice and hospital work.  I also devoted a significant portion of my time to evaluation and expert witness testimony in the field of forensic psychology.  My wife and I had been married for thirty-three years and had five terrific children.  

As the years went by, however, I lost ground little by little.  I began to notice that I would suddenly have to sit down or lie down. The problem was diagnosed as hypoglycemia, but it didn’t follow the regular pattern.  Environmental exposures like cigarette smoke, car exhaust, or bug sprays would trigger episodes. 

Perfumes started bothering me a lot, although I didn’t find them debilitating until the late 1980s.  Unfortunately, my wife loved to wear perfume and liked to have scented candles around the house.  She even used one of those plug-in air fresheners that periodically spray perfume into the room.  When she cleaned the house, she put perfume on a piece of cloth inside the vacuum cleaner so that the air blowing out of the vacuum would add a fragrance to the rooms.  

Of course, I found it quite overwhelming to live with this much perfume.  Plagued with cluster migraines that went on for months at a time, I finally had to stop work.  When I collapsed, my family said I was “going through a mid-life crisis” and “being a malingerer.”  They thought the condition was “all in my head” and came up with other even less complimentary or sympathetic labels.  This illness places an incredible stress upon a marriage, and like the marriages of so many others with MCS, mine ended in divorce a year after I closed my practice. 

I moved to a cabin we owned in the mountains an hour away to get some control over my environment. There my big adventure started.  I had previously lived surrounded by people and had spent every day listening to patients and interacting with hospital staff.  Instant isolation requires a very difficult adjustment, but there was no choice for me.  I met a few fellow MCS people but found that the label applies to people with a wide range of symptoms.  Some are simply irritated by perfume or cigarette smoke, others must live in virtual isolation. I began to learn how to take care of myself, what to avoid, and how to solve some of the problems faced by the chemically sensitive.

After the divorce went through, my ex-wife gave me some of my old clothing, but I found that I could no longer tolerate the scented detergent and fabric softener residue on the garments.  Repeated washings accomplished nothing. I had no coat I could use that first winter, which happened to be record-breaking cold.  Every day I basically wore everything I owned that I could tolerate.  Four shirts, two pairs of pants, lots of socks, snow boots, and a ratty old hat.  Getting up in the morning was easy because I was already dressed.  With temperatures frequently five or eight degrees below zero, I had to wear my clothes to bed to stay warm. Although I was using electric baseboard heaters to heat the cabin, it never got very warm, and I could not regulate my body temperature normally.

The winter of 1996-97 brought heavy wet snow that saturated the ground and filled the fields with three feet of white.  I had finally gotten a settlement from the divorce and indulged in a satellite dish so I wouldn’t go crazy that winter with cabin fever.  That year I was alone for Thanksgiving and Christmas, as I would be for the next few years, but I still felt blessed knowing that as hard as things were, there were others experiencing much worse.

On New Year’s morning that year, the wet snow became super-saturated with warm rain and slid down the mountains, damming the river, flooding the canyon, destroying homes, knocking out telephone service, and cutting off the power as the heavy poles snapped like matchsticks.  Two trucks were swept into the raging waters of the river, and it would be almost a month before power was restored. The only road out was a narrow, rutted jeep trail that wound through the mountains to eventually reach the valley 65 miles away.  The main road was blockaded by the police, and only emergency or high-clearance vehicles with four-wheel drive were permitted to go through.  The police feared that small cars like mine would get stuck and block the road completely.  I had no electricity, which meant that I had no heat, no way to cook food, no water (the well pump used electricity), and no toilet. At first I thought they would get the power up in a few days.  Those who had generators pumped water for neighbors to use, and they could cook and heat with their wood-burning stoves.  (The smoke from a wood-burning stove was something I couldn’t tolerate.) 

I sat quietly in my darkened cabin waiting for some news, some hope.  I began to wonder about chartering a helicopter to get out because one afternoon I walked up near the highway and saw a small plane land on the road to deliver mail.  After a few days, the cabin became unbearably cold, and I was sinking into a stupor from which I realized I might not awake.  I unwrapped the blankets that I was wearing, took all the money I had, my checkbook, and my two credit cards, and went up to the cafe, where I met a friend from church.  As we stood talking about what could be done, two men came out of the cafe and heard us.  One said that they were going into town on the back road, and he asked if they could help.  When I explained my problem, they said they would try to buy a generator for me and bring it back later that day if I would give them the money and tell them where my cabin was located.  Everything I had I gave to two strangers who got into a very large truck and drove out of sight in the foggy and frigid winter air.

I went home and waited.  Night came and the cabin grew even colder after the sun had set.  Finally at 10 o’clock I decided that they were not coming back, so I crawled into my bed, which was piled high with everything I owned that might help keep me warm, including a couple of cotton throw rugs.  Shaking with cold, I tried to fall asleep.  After a long time, I heard the rumble of a powerful engine, and then headlight beams flashed across the wall, sliced in narrow strips by the venetian blinds.  I got up and found these two good men working by the light of their truck in the freezing cold to set up my generator and connect it to the wires I had prepared for them.  Then there was the clatter of a small engine, and a light came on in the cabin.  Soon I would have heat.  When I tried to pay them, they refused and said they had been glad to help someone in need.  I shook their hands and returned to the house.

It was clear that staying through the winter was quite dangerous, and I continued to get weaker. I tried a new medication that spring that made me much worse. By the fall of 1997, I was rapidly declining. Something had to change, so I moved to Arizona. I was planning to stay for three months, and I have been here almost two years. 

Note from Alison Johnson: David sent me this story in 1999, and I have lost contact with him since that point.