Daniel Brainerd’s story: A youth’s sad battle to cope with chemical sensitivity after school renovation

 

This story, written by Daniel’s mother, Sara Cramer, appears in my 2008 book titled Amputated Lives: Coping with Chemical Sensitivity.

 

My son Daniel committed suicide in 2005. What makes his life note-worthy is the way he had to live it. In the fall of 1993, Daniel was a nine-year-old student in the fourth grade at Blakely Elementary School on Bainbridge Island, Washington. His life was irrevocably changed that fall by his exposure to chemicals used in the renovation at his school. Prior to this time, Daniel had been so healthy that he had never been to the doctor except for check-ups and immunizations.

During the summer of 1993, the grade school underwent a massive renovation. To keep the asbestos in the old linoleum tiles from becoming airborne, solvents were used to remove the floor tiles. These solvents were absorbed into the concrete below and into the surrounding wallboards. Petroleum naphtha was one of the primary substances in the solvent. The renovation was finished just a few days before school started; new laminate, carpeting, and paint in a building that was built in the 1970s made for a very toxic environment. The smell of chemicals struck anyone who stepped inside. When I volunteered in my son’s classroom that fall, I felt some effects but thought I just had a cold or other illness.

Although more than a dozen students and teachers reported adverse symptoms related to the chemical exposure, these reports were labeled “group hysteria.” School officials were quick to claim that the situation was not “unhealthy” and did everything possible to prove it. It took over eighteen months before school officials acknowledged the situation and took even limited action. A year after the renovation, one teacher had cancerous nodes removed from his vocal cords; another was diagnosed with lupus, and another with asthma.

In the first few days of the exposure to chemicals in his school environment, my son Daniel suffered severe stomach pain. He would lie curled up in bed, crying. After a few weeks at school, his lymph nodes were swollen to the size of pecans, and his skin was pale. There was no color on his ears, which now looked as if they were made of wax. Blood tests showed nothing. Daniel’s doctor conferred with a colleague in the Department of Environmental Science at the University of Washington. At his suggestion, our doctor wrote a letter to the school, recommending that my son be placed near an open window to help alleviate his symptoms.

Daniel experienced so much fatigue that he would sleep up to eighteen hours a day. I often had to wake him to eat dinner. In the past, he had eaten enough to choke a horse; now he ate barely anything and complained that food tasted funny. Red meat tasted metallic to him, and he just wasn’t hungry. He had been a slim boy, weighing sixty-nine pounds, but because of his loss of appetite, he lost seven pounds in five months. By spring he looked like an AIDS patient. His ribcage was visible, and he had so little energy that he couldn’t ride his bike for more than five minutes at a time. His physical symptoms were alarming enough, but some of changes in his personality were even harder to bear. My once lively, super-charged, completely upbeat child was reduced to a quiet, lethargic lump on the coach. His class was instructed to keep a journal, and it captured what he was experiencing as his former good health slipped away:

September 27: “I’ve been feeling very weird. I think I’m going to die for some reason.”

September 28: “Today I’ve been sick to my stomach. Very low and bored.”

October 3:  “I haven’t been doing well in school, I think its because I’ve been really tired.”

After several months, Daniel began to have nosebleeds more and more often, and sometimes they lasted through the night. He got no relief from analgesics for his headaches, and antacids did nothing for his stomach. His symptoms would get better over the weekend, but after a week back in school, his symptoms would be worse than ever. I had no idea, however, that the health effects from the renovation would last his lifetime. I ignorantly thought, as did everyone around me, “It will pass; he’ll get better.” But weeks turned into months, and then the years passed and Daniel did not recover.

A few months after Daniel’s initial exposure in his school, his symptoms started occurring in response to common chemical exposures in everyday situations. Over the course of two years, the extent of his disease became very apparent. Our only recourse was to avoid places that did not have good air qualitystores, certain houses, cars, etc. Daniel experienced the fewest symptoms when he stayed in his room with an air cleaner running. He did a lot of reading, and I finally gave into the computer game craze. It was one of the few things he could still do. He had lost the energy to take part in sports and dance.

In the months that followed Daniel’s exposure and subsequent illness, I tried to work with his school to address the problem. The district hired experts to measure the levels of chemicals in the classrooms, and they tried to bake out the fumes during the weekends. The overall message was that the school was “safe.” Parents’ concerns continued to be attributed to mass hysteria. The hardest part of going through this experience was the lack of understanding even from friends and family members. The idea that our environment can sometimes be unsafe was more than most people were willing to accept. I was very alone as I fought my battle, sustained only by the knowledge that I was right. I knew my son was not psychosomatic, and I knew he was becoming more and more ill. On top of the illness from the chemicals, his immune system could no longer fight colds and flu. Always in the past, he would go to bed early when he felt a little sick and wake up the next morning completely over it. That first year after the renovation, he had the flu three times, and each time it took longer and longer to recover.

Feeling mounting frustration with the school officials, I turned my attention to things I could control. I educated myself and read all about green living. I took great efforts to make our houses as free as possible from volatile organic compounds (VOCs). I installed industry-quality water filters and air filters, used non-VOC paints and finishes, and learned to lay tile so I wouldn’t have to use vinyl flooring or carpeting. I bought carbon-filter air cleaners.

Daniel resorted to wearing a cannister gas mask to reduce his symptoms in the car and outside when he was near cars. His nosebleeds stopped almost completely as a result, and he no longer had stomach aches after riding in the car. But he endured years of harassment about wearing the mask, not only from kids but from police as well. Security at a concert forced him to throw his mask away before they would allow him in. After that exposure at the concert, he was bedridden for four days, unable to eat and in severe pain. Sometimes he chose to endure a reaction from exposure rather than face the ridicule of the public. Daniel was even targeted as a threat because he was seen mailing a letter with his gas mask on; police came to the house to investigate him.

Ever since he became sick when he was in the fourth grade, Daniel was not able to attend school for more than two hours a day. He was classified as a health-impaired student, which entitled him to certain special education services. The school district that we lived in refused to accommodate him, however, and I had to take legal action several times to ensure his education. Each time I prevailed, but it required many months and a substantial outlay of funds. When we moved to New Jersey, we tried having him attend school as a regular student, but after a week it was clear that his health was not strong enough. I ordered his school records from Washington but really didn’t expect much accommodation from his new school. I was surprised when not only did they readily accept his classification, they provided qualified tutors and I didn’t have to fight to get him help.

As you can imagine, Daniel did not lead a normal life. He was limited by his illness and was unable to do many ordinary things. It was not easy for him to take part in after-school activities or just hang out with friends at the movies because the exposures he encountered would put him over his threshold. His life became quite empty because it was so hard for him to socialize. Daniel had one close friend from early childhood and made a few friends when he joined the computer club at the high school. They would take turns hosting the meetings at people’s homes, playing computer games and sharing programming ideas. Despite the limitations of his life, I hoped that Daniel would eventually regain enough of his health to lead a normal life.

When Daniel was fourteen years old, I happened to watch him pick up something in the kitchen, and my heart dropped to my stomach. He was shaking as he lifted the object. I had noticed how bad his handwriting was becoming but hadn’t really thought much about it until then. When I sent him for neurological testing, the neurologist concluded that his tremors, which occurred all over his body, not just his hands, were what are termed nonspecific. In other words, the neurologist could relate Daniel’s tremors to no disorder, but said my fourteen-year-old son was experiencing the same type of tremors that appear in geriatric patients.

Daniel and I used to talk about all the ways he could improve his health and strategies for dealing with his illness. I bought lots of vitamins, antioxidants, and organically grown food, despite the cost. He dutifully took the vitamins, and unlike most teenagers, he ate a very good diet. He would save up his “exposure” time so he could go to a friend’s house for a while. He was very cooperative with most of the changes that were necessary in his life, but it was clear that his deepest desire was just to be normal, to be able to go places and do things like all his friends.

Shopping was such a hassle because of the formaldehyde and other chemicals in the various products. Daniel would run into a store after I had checked it out and told him where to find the things he wanted to buy. He would quickly pick some things out and run back outside. Sometimes I would buy a bunch of things and bring them home for him to choose which he wanted. I watched him slowly withdrawing from activities outside of our home because it was just easier to stay home and avoid getting sick. The cost of a bad exposure was not just feeling lousy for the few minutes that he was exposed; it was days of torturous pain that few people acknowledged existed.

When Daniel finally went to college, he took some of his courses through correspondence to reduce the time he would need to be on campus. After Daniel moved out to room with a friend, there were two things I especially worried about. One was that he would live a lifestyle typical of other young men, which would be risky, given his chemical sensitivity. The other was that Daniel would be unable to self-monitor his emotional well-being. In fact, he was still very self aware, and even up to the time he committed suicide, he was still going running and getting his laundry done. I often e-mailed him notes to encourage him and say that if he needed anything he should let me know.

In 2004, eleven years after Daniel’s health was so severely impacted by the renovation in his school, his liability lawsuit was finally settled out of court with the four defendantsthe abatement company, the chemical company, the school district, and the managing contractor. The monetary cost and time invested in all the litigation had been very extensive.

The settlement gave Daniel some money, but it could not give him back his life. On November 29, 2005, he decided he could no longer deal with living in such a restricted way. The helplessness of his situation, the isolation he felt, and the sheer weight of dealing with such a limiting illness led to his suicide. As a young boy of five, he once told me he knew he wanted to be a dad of five children and then with some thought, he added: “Well, maybe just two for starters!” It’s still hard for me to accept that even after a painful twelve-year struggle, he had decided that there was no way he could make life work for him.