Living with Multiple Chemical Sensitivities

by Heather Burke

There is a birdcage with a toy canary in it in Judy Spence's family room. Judy considers that canary to be her symbol: like the canaries in coal mines that would collapse from poisonous gases long before humans were affected, signalling the need for an evacuation and actions to clean up the air.

Judy's family is now on the fourth generation known to have environmental sensitivities. Her mother had hay fever, and her grandfather was regularly hospitalized for asthma. Her two children are also somewhat sensitive to certain chemicals.

Although Judy always had some allergies, the onset of Multiple Chemical Sensitivities (MCS) was sudden. She was renovating her home, which is in Ottawa, at the time, using alkyd paints and lacquers. She thought she would be safe if she left the windows open, since there were no other warnings on the labels.

After about a month, she started getting headaches that would not resolve, even after taking up to six aspirins. Her doctor said she could continue the renovations. Judy believes that what he should have said was stop and get out of the house. After two months of renovations she had the first asthma attack of her life. Things settled down for a while, and then she had a major attack. "Within a matter of four hours my life changed. I was no longer Judy Spence the healthy, I was Judy Spence the totally disabled. I was in bed for over three months."

After that incident, Judy became hypersensitive to many substances. Her sensitivities manifest themselves in many ways. Some of her reactions will be like traditional food allergies: her throat swells up, she becomes asthmatic, and she can have an anaphylactic reaction. Judy also suffers from numbness, muscle spasms, diarrhea, passing out, migraines and seizures. She can experience what she calls "brain fog," where she becomes very distracted--she goes through the motions but her mind is not really there. She says that many people without MCS can experience this too while walking by perfume counters in department stores.

MCS is often not recognized by doctors. Judy Spence's case was so clear-cut in its onset that one would have expected she would have been diagnosed rapidly. She was finally diagnosed only after six months--and that was due to her own initiatives. After three months of being totally debilitated, she started to do a lot of reading on her own. She contacted Health and Welfare Canada and Canada Mortgage and Housing (CMHC) for information. When, after a four month waiting period, she finally saw one of the two environmental doctors in Ottawa, she received confirmation that she had MCS.

Judy Spence is what is known as a universal reactor: she reacts to almost everything in her environment to some extent. Perfumes, auto exhaust, pesticides and nail polish cause severe reactions. She will get writhing pain, seizures and muscle spasms from being in the same room with someone who used Head & Shoulders the day before. She notices fireplace smoke coming from four blocks away. She is also very allergic to wood.

Judy cannot be in the same room as a newspaper, since she reacts to the ethanols found in ink. She is allergic to formaldehydes, which are found in such common items as toothpaste and particleboard furniture. Even some natural shampoos affect her.

Judy goes through a yearly cycle. She is healthiest from January to April, her "window of opportunity." Then, the moulds start to appear. Eventually, the moulds dry up, but by that time the leaves are out and there is pollen in the air. Pesticide spraying starts in May and does not end until October. This combination makes summer her worst time of year. Usually from the end of June until the end of August she is flat on her back. By the end of August the leaves die, and her health starts to improve for a month. By October the leaves have fallen and the moulds reappear.

When the snow starts to cover the ground, Judy experiences another good period, but then people start to use their fireplaces. Judy reacts severely to wood smoke, so she cannot walk around the neighbourhood on weekends when people are using their stoves. Luckily, by January most people are running low on wood. She then reenters her healthiest period of the year.

Judy still has twenty to thirty reactions a day, but they are controllable for the most part. Although she is not working, she says that she is "working towards working." When her condition improves, she wants to counsel people with MCS. She says she would be good at doing environmental home assessments, since by now she has a nose "like a German Shepherd."

To make her environment free of the chemicals that she is sensitive to, Judy has had to undo the renovations that triggered her illness in the first place. To protect herself from the fresh wood and particleboard, she sealed up all the surfaces, using special chemical sealers that do not give off chemicals and do not allow chemicals to pass through from the material underneath. Judy can use LifeMaster 2000 paints, a brand from Glidden Paints which is free from volatile organic compounds (VOCs), virtually without a mask.

Judy has had to seal up the house to keep out diesel and fireplace smoke. She sealed off the dryer with a cap to keep out the chemicals that came in through the dryer vent.

Judy says, "I used to dream about standing between the inside and outside doors, because both the inside and the outside world were hurting me."

A before and after case study of the Spence home by CMHC showed that their furnace spilled a lot of chemicals, so changes have been made to the furnace as well. CMHC tests show that there are now virtually no VOCs or other chemicals coming out of materials in the house.

Judy and her family have had to make changes to common household products to accommodate her needs. Toothpaste for Judy is now baking soda, salt and peroxide. For cleaning, the Spences use Borax, baking soda, and laundry soap from a health food store. No products with perfumes or chlorines are used. Occasionally they have to use chlorine bleach to get rid of moulds--a matter of the lesser of two evils, since the chlorine bleach causes a reaction but a buildup of moulds would be worse.

Judy is allergic to most foods to some degree, but there are ways she can minimize her reactions. She eats organic foods. She rotates her foods so that she does not eat the same food more than one day in a four-day period. This prevents a buildup of any harmful substance and keeps down the total load on her system. She has to avoid certain foods such as yeast. Her typical diet is very bland, as spicy foods make her sick, and she avoids coloured pasta, since some food colouring is petroleum based. Canned tomatoes and orange juice contain moulds and have to be avoided.

On a good day, she may go off her diet somewhat. When Judy goes shopping, she avoids early in the morning and just before dinner, since that is when the heavy perfume wearers tend to do their shopping. She picks Thursday nights to go to a movie theatre, since that is the quietest night of the week. Her family puts coats on the seats all around them so no one will sit near them. They go to restaurants like the Green Door because their customers do not wear a lot of heavy perfumes.

Hospitals pose a big danger for Judy, because they use floor polishes, alkyd paints, and floor waxes, and hospital staff use perfumes. Once when Judy was rushed by ambulance to emergency, the staff put a vinyl mask on her, which she is allergic to, and left her stretcher next to the cleaning cart. She was sent home after a couple of hours, because it was decided that even though she was reacting very badly to exposure at home, the hospital was worse. "It's very scary because you always rely [on the fact that the hospital] is where you will finally have sanctuary."

Judy has worked with the Allergy and Environmental Health Association to try to ensure that there is at least one hospital in each city that will not endanger people with allergies. For her, the Ottawa General has the best indoor air quality. Unfortunately, she says, the staff are heavy perfume users, so improvements could be made. She points to hospitals in the U.S. that are perfume-free to show that this is a reasonable option.

Judy feels there are ways that government legislation could help MCS sufferers. Banning the cosmetic use of pesticides would allow her to stop being a prisoner in her home during the summer months. She once rode her bike a couple of blocks to a friend' s house. Just about everybody who uses Chemlawn on that street had been sprayed that day, and she fell off her bike in muscle spasms. Ironically, it was the first time she had gone without her emergency kit which contains alrenalin, because she was feeling especially strong that day. She has never gone anywhere without it since.

Judy made a compromise proposal to Nepean City Council to divide the city into sectors and spray in each sector on only one day of the week. Then people would know which sections of the city to avoid. Judy wants everyone to know that they have the right to ask chemical lawn care companies to give them twenty-four hours notice before spraying in their neighbourhood.

Judy believes the government should also be looking at fuel emissions. For example, she points to the policy against letting school buses idle in school parking lots, which she says is not enforced. Judy has gotten into disagreements with ParaTranspo drivers when she has asked them to turn off their engines while they are waiting for someone.

Judy believes that all products should be labelled with the chemicals they contain, especially cleaning products and cosmetics. Even food products are not labelled well enough to protect her. Judy thinks environmental medicine offers some hope for people with MCS. She is presently on a desensitization treatment which gives her immunity to the principal items that she is exposed to, so she can start to cope with the other allergens.

Judy does not think people take allergies seriously enough. Television commercials make it look so simple--pop a pill and you' re fine. Until she had her first asthma attack, she did not herself understand what it is like--you are on the brink of death and there is a vice grip on your chest and you really can't breath. "It's very scary to not be able to breathe, but we just dismiss it as it is so commonplace."

One of Judy's goals is to learn as much as possible about MCS so she can protect her children, who tend to be allergic. She is fighting to have the medical community recognize MCS as a real illness and environmental medicine as a legitimate means of treating it. Judy says that many people are actually thankful when they find they have MCS: it "beats finding out at 50 that your liver is filled with chemicals."

Reprinted from the Peace and Environment News, June 1995, with permission.

Update: Judy has now recovered sufficiently to work again as a nurse, in premises she can control.