Monday, May 04, 2009

May is MCS Awareness Month (Multiple Chemical Sensitivity)

A Man Unmasked: Living with Multiple Chemical Sensitivity

Copyright 2004
Carolyn Cooper, MPH, RN

Cloudcroft, a village nestled 9,000 feet above sea level in southern New Mexico’s Sacramento Mountains, boasts an idyllic setting. In the winter months, Cloudcroft, named for the “field of clouds” that sometimes hovers beneath it, is a popular weekend getaway for ski enthusiasts. In the summer, the cool mountain temperatures attract nearby desert-dwellers seeking respite from the heat. Surrounded by a national forest populated with coyotes, deer, and elk, Cloudcroft’s year-round-residents are privileged to enjoy a seemingly pristine environment.

For Rodger and Jean Norris of Cloudcroft, a pristine environment is not only desirable, it is a necessity—both indoors and out. The sign at the foot of their driveway may bewilder some passers-by, but by designating his property as “Southern New Mexico Confinement Facility,” Rodger, 53, tries to find some dark humor in the illness that does indeed confine him.

For the past 8 years, Rodger has been afflicted with a chronic debilitating disorder known as multiple chemical sensitivity disorder or (MCS). MCS is also sometimes called “20th Century Disease” or environmental intolerance (EI). All of these names refer to a syndrome that medical science finally recognizes, but still finds hard to explain.

“My doctor’s have candidly reassured me that I have the body of a 65-year-old, however, the problem is that I am about 15 years shy of making that mark,” Rodger, age 53, explains with a wry smile. His self-deprecating humor is tempered by the frustration he endures as a result of the illness that keeps him from living a normal life.

For Rodger Norris, “It’s not the flowers, not the trees . . . ” that trigger a reaction that tightens his lungs into a spasm that requires him to retreat from the offending agent, don his protective mask and administer the oxygen that he keeps for use in emergencies. But artificial fragrances and a growing list of other usually harmless odors have caused him, by necessity, to retreat into a life of virtual isolation.

Chemical exposures are certain and unavoidable in our modern day-to-day lives. Recent studies have reported that up to 15 percent of the population claim to experience unusual sensitivity when exposed to common chemicals. Exposure to such chemicals may cause physical reactions such as headache, fatigue, weakness, or breathing difficulty. Persons afflicted with MCS experience these reactions as a result of hypersensitivity rather than an allergy. An allergic reaction results in inflammatory symptoms that are usually relieved by antihistamines. Reactions based on hypersensitivity are less easily dealt with.

Before being diagnosed with MCS, Rodger was successfully treated for skin cancer, a malignant melanoma, but otherwise enjoyed good health and an active lifestyle.

“At first my symptoms seemed to be nothing more than common allergies,” Rodger recalls. “Then as it progressed, I could no longer speak or communicate with even the doctors. First, my doctor thought that the melanoma had moved to my lungs—however, all the tests were negative.”

His more recent medical history is extensive and, along with his respiratory symptoms, includes spinal degeneration which has required several surgeries, a calcified left kidney, hundreds of painful kidney stones in the past eight years, and a heart condition that required the placement of a pacemaker last year. His recovery was complicated by the fact that he has also developed sensitivity to medications that are routinely used to treat heart problems.

“Now I am 'aspirin sensitive' and allergic to sulfa drugs, iodine, Celebrex, peanuts, and almost any petrochemical based product or drug . . . . Petrochemical products are deadly,” Rodger stated.

Rodger’s experiences with MCS are typical, “I saw a total of 20-some different doctors in a period of about 18 months before anyone figured out what was going on, and I still see at least two doctors every month.”

As an illness, MCS has always been difficult to diagnose. Dr. Theron Randolph was one of the first physicians to link environmental causes to chronic illness in the 1950’s. He pioneered the sometimes controversial field of medicine known as “clinical ecology.”

Some scientists contend that MCS is a psychosomatic disorder, because existing tests make it difficult to attribute the physical symptoms to an exact cause. However,
multiple chemically sensitive individuals are thought to have received a chemical exposure that precipitated their condition. Two scenarios have been theorized: either a long-term exposure to one or more chemical agents, or a single-massive chemical exposure, may be responsible for a physical injury that gradually progresses into a chronic course of hypersensitivity.

Symptoms, such as severe shortness of breath, result from exposure to a “triggering” chemical, even though there is typically no history of previously existing lung disease or asthma. Blood tests may not reveal abnormal results, and allergy tests are often negative. MCS patients often feel stigmatized and discouraged when their symptoms are dismissed as being “imagined” because no precise physical cause can be pinpointed.

Rodger doesn’t know exactly what exposure caused him to develop MCS. “It could have been something from Vietnam.” But he harbors stronger suspicions about the years he spent handling wood treated with pesticides and preservatives. For 15 years, Rodger and Jean ran their own sign business in El Paso, Texas. They contracted with a number of realtors and were responsible for placing thousands of “for-sale signs.”

“Our whole business consisted of 10,000 pieces of wood. We were advised that we needed to treat the wood to prevent termites and damage from insects,” Rodger recalls.

The “colonial posts” used to hang the signs had been pretreated with Chromated Copper Arsenate (CCA), a chemical agent once commonly used in wood preservation. Arsenic, a component of CCA, is highly toxic and a known human carcinogen. The FDA now forbids the use of CCA treated wood in residential areas, and as of December 31, 2003, the United States banned CCA treated wood from both import and export. Wood treated with CCA is still available until current supplies are exhausted, but it is now tagged with explicit warning labels.

“There were no warning labels when we used it” Rodger said. “I applied diazinon, malathion, and Sevin to the wood, because I was told back then that was the way to handle it. I cut the wood treated with CCA and I didn’t wear a mask when I did it. Now the label warns against it, and you can’t even get the people at Home Depot to cut a piece of it. They know that it’s poison.”

Medications have not been very successful in treating hypersensitivity reactions; instead, MCS patients find that preventing a reaction by avoiding the offending agent offers them the most reliable management of their condition. What makes life even more difficult for the chemically sensitive is the curious progression of their illness. In a phenomenon known as “broadening,” they become sensitive to more and more unrelated chemicals, at levels of exposure that the average person barely notices or may find pleasant. Perfumes, many artificial fragrances (including those in scented soaps and toiletries), smoke, paint, and even fresh newsprint are frequently cited as irritants to the chemically sensitive. In addition, the odors that are emitted as a result of “outgassing” from new synthetic materials such as carpeting, clothing, furniture, and building materials also provoke symptoms.

Over time, avoidance becomes increasingly challenging. Reactions are experienced not only to an increasing amount of chemicals, but the reactions also become more severe and long-lasting. Symptoms spread to a variety of body systems. Stomach upset, short-term memory loss, muscle and joint pain, and kidney problems have been described among frequently reported symptoms. MCS patients are forced to make dramatic concessions in their daily lives. Eventually, many are forced to adopt chemically-free lifestyles and as a result often become socially isolated. A respirator mask may be worn in public places when exposure to chemicals can’t be avoided.

“It is just amazing when you come down with this, the way your life has to change. It all comes back to slap you in the face . . . I didn’t expect to get ill. I was outside working every day,” Rodger reflects.

Now, Rodger wears his respirator mask in public and, like others afflicted with MCS, he has been gradually forced to adopt a lifestyle based on avoiding the fragrances and chemicals that aggravate his condition. He and Jean fondly recall trips they made to Ireland before the illness changed their lives. Now traveling on a commercial airliner is impossible. He hasn’t eaten in a restaurant, stayed in a hotel, or attended church services in the past 7 years.

Rodger finds that his respirator mask intimidates some people: “People say I’m an ‘unfriendly person,’ I’m ‘standoffish.’ I’ve watched my friends slowly move away from us because of me. There are people who think you are going to give them this illness.”

Rodger observes that “children are the best” however, because,“They just ask why I wear my mask. Most of them understand and respond with questions about how pollution hurts lots of things.”

The role of a devoted partner cannot be overemphasized when one must live with a complicated illness as Rodger attests to.

“My family has dealt with this, but my wife has been the rock and foundation for my survival. She never expected to be put through what she has had to endure with me, and she could never have been asked to do it. She has been with me every minute providing protection and care. When I married her 28 years ago, she said for better or worse and in sickness and in health, but she never expected this. The stress on her has been beyond belief, but she is still at my side,” Rodger pondered.

“I’m his first-line of defense,” Jean admits as she describes the preventative measures she takes to ensure Rodger’s scent-free environment. Her sense of smell is heightened because she is forced to avoid products harmful to her husband, so she is able to pick up on fragrances that may trigger a reaction. If people are to be admitted to the house, they enter through the mud room where Jean first performs the “sniff test.”

Meanwhile, pollution is increasing as more people build in Cloudcroft. Diesel pick-up trucks are popular, and traffic is increasing. As a result, Rodger sometimes cannot even tolerate a walk in his yard without donning his mask for protection from fumes. Rodger reports that the side effects of his hypersensitivity reactions can endure from two to seven days.

“When the highway department sprays for weeds, or if a neighbor sprays for insects, that will normally put me in bed for 5 days.”

Guilt tops the list of Rodger’s reaction to his illness. “We were building a retirement life, and this illness has taken it all from us. More than $2,500 per month for prescriptions ate our savings almost as quick as the doctor bills after our insurance was cancelled. Now my wife and I live on a small monthly disability check.”

Financial concerns are all that are keeping Rodger and Jean in Cloudcroft. They would like to move soon, to the more remote New Mexico community of Timberon where a friend has given them a suitable lot. They expect Timberon to afford them fresher air and more seclusion. However, Rodger is finding it a challenge to raise the $15,000 they need in order to afford the move. A bank has already turned down his request for a loan, but the couple plans to persevere.

“The bankers may think I will not be around to pay them back,” Rodger acknowledges, but, actually “this [move] may be our last hope to extend my life”.

For now Cloudcroft remains home to Rodger and Jean, and still a more pristine environment than many other communities could offer. MCS has altered Rodger’s perception of home as he sardonically explains, “I tell everyone that my home is my prison, and that it is a life sentence.”

(Five years have passed since I worked with Rodger and Jean to prepare this article. I'm happy to say they are happily settled in Timberon. MCS is still very much a battle that the Norris' face together. Visit their website to find out what's new in their lives.)

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