Life and Death

I’ve discovered something about myself. It’s extremely difficult for me to write about people who lose their lives because of avoidable chemical exposures.

Of course, that category is very large when you consider the role that chemicals can play in conditions like cancer and heart disease. The long-term consequences of using common chemicals can be heartbreaking, but I don’t find them as difficult to write about as the more sudden deaths.

When I hear about people who have a chemical exposure that immediately takes their life, my writing muscles seem to freeze. I just can’t come up with anything to say. On this blog, I did manage to write about three different young people who all died after using spray deodorant, and in my book, I shared the story of two babies who died after pesticides were applied in a neighboring apartment and of workers who died after using a wax remover.

What I’m currently having trouble wrapping my words around is a different sort of life and death scenario. It’s the story of two women with MCS in Canada. Both looked for safe, affordable housing for years and had doctors and others advocating for them. Both were unable to find an affordable home that kept them free of chemical exposures. Feeling they had no other options, they applied for MAiD (Medical Assistance in Dying) and were approved. Sophia ended her life in February. Denise is currently still alive.

Once again I find myself freezing up, unable to find the words to express my horror at this. It’s not that I’m shocked when people with chemical illness choose to die. During the first six weeks after I moved to Tennessee, there were three suicides among my online acquaintances. The pace isn’t always that brisk, but it certainly isn’t a rare occurrence. What makes this worse is that it’s officially sanctioned. People in positions of power decided that it’s acceptable to help people die instead of helping them find a way to avoid the very preventable suffering they endure from chemical exposures.

Fortunately, I don’t have to come up with the right things to say. I can just paste in this link, which takes you to two video clips and a written account of Denise’s story. I really hope you’ll take a look.

I do have one small complaint about the otherwise good coverage. In one of the video clips a reporter says that Denise needs “incredibly specific living conditions.” She has mobility issues, which makes housing more challenging than for someone without them, but avoiding the chemicals that make her so sick she wants to die is completely doable if people care enough. The article says Denise needs to avoid cigarette smoke, laundry chemicals, and air fresheners. Sophia, who died in February, had a similar wish list. She just needed a place to live that was free of cigarette smoke and chemical cleaners.

These quotes sum up the issue.

About Sophia: “It’s not that she didn’t want to live. She couldn’t live that way.”

About Denise: “Denise says she does not want to die, but she can’t find a place to live.”

There are a lot of reasons to force myself to write this post. One is to ask people to pray that Denise will find a safe affordable place to live before it’s too late. Another is to say this: People with severe MCS don’t get symptoms that are simply uncomfortable or inconvenient. Reactions can be life threatening or so incredibly painful and hard to manage that people no longer want to live. We don’t practice extreme avoidance just for fun.

To a large degree you hold our lives in your hands. What you do in your home matters to people around you. It matters a lot if you live in an apartment building, but it can also matter if you live in a detached home. Fumes from your laundry products are pumped into the neighborhood from your dryer vent. The chemicals you use on your lawn fill your neighbors’ air. If you idle your car in the driveway, paint your house with a toxic paint, or spray the exterior of your home for bugs, everyone around you is affected.

Choosing products to use in and around your home may seem like a minor choice. Sometimes, though, it’s actually a matter of life and death.

A Hairy Problem

‘Tis the season for ads that tell us all the ways we don’t measure up and promise to fix it for us. Among all the “keep up with the Joneses” commercials are a good number of “you don’t look good enough for holiday gatherings” offerings. You must whiten your teeth! You must get rid of your wrinkles! You simply must do something about your hair!

I’ve been thinking about hair in particular ever since I watched the CMA awards this year and saw Mickey Guyton’s show-stopping performance of “Love my Hair.” Guyton, who’s black, wrote the song in response to an incident in which a young black girl was sent home from school because her hair didn’t meet the school’s dress code requirements.

Most of us haven’t faced anything quite that in-your-face when it comes to not meeting appearance standards, but it doesn’t mean we don’t get the message. Every culture has a standard of beauty, and the farther we think we are from it, the more time, energy, and money we’re likely to spend on trying to hit the mark. Unfortunately, that’s not all it can cost us. Beauty products are mostly unregulated and untested and can also cost us our health.

Sickening Beauty

We don’t know all we need to know about the health effects of commonly used products. We don’t even know everything that’s in them. As a Guardian article notes, the single word “fragrance” can mean a combination of 50 to 300 different chemicals. The same article also quotes an expert who says, “No state, federal or global authority is regulating the safety of fragrance chemicals. No state, federal or global authority even knows which fragrance chemicals appear in which products.”

What we do know about personal care products is alarming. The documentary Toxic Beauty (which is well worth watching) notes that many products we use every day contain chemicals which are endocrine disrupters, meaning they mess with our hormones. We have over 50, including insulin, serotonin, melatonin, cortisol, thyroid, and reproductive hormones, and disrupting them can have wide-ranging effects. The film reports surprising product ingredients, such as coal tar in soaps, creams, and lipstick; arsenic in toothpaste; mercury in skin lighteners; and formaldehyde in deodorant and shampoo. The long list of potential health effects of the nine products they list includes cancer, heart disease, infertility, miscarriage, tremors, cognitive dysfunction, lung disorders, kidney damage, insomnia, and depression.

The Gender and Color Gap

There are products almost all of us use (soap, shampoo, deodorant, and toothpaste), products more women use (makeup and nail products), and products used more by women of color (skin lighteners and hair straighteners). A Popular Science article reports that the average white woman in America is exposed to 168 personal care chemicals every day and that for women of color, the number is even higher. Not surprisingly, women, and black women in particular, have a higher body burden of the chemicals generally found in cosmetics.

Most of us aren’t going to give up soap and shampoo, but we could give up other products if we decided not to try to conform to arbitrary standards. It’s a great goal, but there are reasons we don’t. There’s plenty of research showing that physical appearance affects career success and all sorts of other things. Personally, I wear less makeup and use far fewer products than I once did, but I do still make a bit of an effort to look culturally acceptable. I feel the pressure as an aging white woman. I can only imagine the pressure for women of color.

Actually, I don’t have to just imagine. I certainly have no idea what it’s like to be black or brown in the USA with all the history and cultural baggage that entails, but I did live in Central and South America for a decade, so I know what it’s like to have skin and hair that don’t fit. I know what it’s like to be told by my friends about places I shouldn’t go because the color of my skin made it too dangerous. I know what it’s like to be pulled over while driving because of how I look.

On one hard-to-explain occasion I realized how much I had internalized the message that a normal skin tone was one that was different than mine. I drove past a brown skinned woman holding a white skinned baby and thought “That baby looks odd. He’s so white.”  It took a few beats for me to remember that I was pregnant and that my own baby was going to look like that. It took a few more beats to recall that I myself had that same strange skin.

And then there’s hair. There’s only so much we can do to change the color of our skin, but there’s a lot we can do to our hair. When I was younger and sillier, the combination of not loving my hair and not focusing on chemical dangers prompted me to get a perm. Because I lived in a country where my hair was different from the norm and the hairdresser was unfamiliar with hair like mine, the results were fairly disastrous. It led to the following conversation with my 3-year-old son.

Son: Why did you get your hair big?

Me: I thought it would be pretty. Do you think it’s pretty?

Son: No.

My point is simply this: As much as I believe the goal (for all of us, white, black, and brown) should be to get to a point where we celebrate ourselves and each other for the uniquenesses of our individual bodies, I know there are also valid reasons we try to fit in. I also understand the added pressure of being farther from the norm. So if we aren’t going to give up all the things we think will improve our appearance, we need to make sure that what we’re using isn’t going to make us sick.

Choosing Healthier Products

Fortunately, not all personal care products are created equal. The Skin Deep database is a good place to look for information on healthier options. Unfortunately, there’s disparity in product offerings as well. In 2016 the Environmental Working Group evaluated more than a thousand products marketed to black women and concluded that there were fewer healthier choices in that category.

The good news is that often we can achieve our goals without having to purchase manufactured products at all. Simple, natural ingredients can work surprisingly well in many instances. It does take time and experimentation, though, to find what works best for you. As people around me may have noticed, my experimentation with DIY mascara isn’t going particularly well (but I haven’t given up!) At least I haven’t had the experience one chemically sensitive woman shared. She used something a bit sticky on her eyelashes, then went to church and shut her eyes to pray. When she tried to open them again, she found they were stuck together.

Whatever the current state of your eyelashes, I hope you feel beautiful today (or handsome, for the guys reading this). I hope you never have to choose between trying to meet beauty standards and your health, but if you do, I hope you choose to protect your health. I hope you’ll remember that you’re made in God’s image and are his absolute masterpiece. I also truly hope you love your hair.

Progress, or Lack Thereof

Some blog posts are definitely more fun to write than others are. This one isn't fun at all. I find, however, that I can't keep ignoring a news story that someone recently posted to Facebook. I've tried, but it won't leave my brain.

It's a very sad story. Something heartbreaking happened to a family and a 12 year old girl. What happened to her isn't new, however, but has happened before to other young people. In fact, I've written about it. In 2012 I wrote a post I called "Death by Deodorant" about two boys who died ten years apart, both from the toxicity of deodorant fumes. I wrote, "What improved between 1998, when the 16-year-old died and 2008, when the 12-year-old met the same fate? Did the products get safer or did society become more aware of the dangers? It doesn’t appear so. How about 2018? Will things be different then?"

We haven't reached 2018, but the answer to whether things are different in 2017 is apparently "no." A news story from March reports on the sudden death of 12-year-old Paige Daughtry. A pathologist found that she died from the inhalation of chemicals found in the deodorant she had been using. He stated, "There was no natural disease that has contributed to her death. There was no evidence of heavy use and no direct evidence that there was chronic use." In other words, it appears that she was a healthy girl who died from using a common product for its intended purpose.

It should be noted that the deodorant deaths took place in Europe, where spray formulations are more common than they are in the United States. However, "body sprays" are very common in the United States, and the popularity of spray deodorants is rising. The propellants implicated in Paige's death (butane and isobutane) are the same ones found in Axe and other body sprays.

There are a number of issues raised by these stories, but if nothing else, surely they serve as a stark reminder that the great majority of personal care products in use have never been tested for safety. We can't trust that simply because a product is on the market or is widely used guarantees that it isn't harmful, either to ourselves or those around us. Many, many products may, in fact, be deadly, but tend to kill slowly, by contributing to cancer, heart disease, or other illness.

This story saddens me deeply, in part because it highlights the lack of progress we seem to be making on this vital issue. I can, however, think of at least one way in which things have improved. It's much easier than it used to be to determine the safety of a product by using websites such as EWG (Environmental Working Group) or by simply doing an internet search. The caveat, however, is that sites are only helpful if people use them. We have to care enough to look for the information, and when we have the information, we have to act on it, by voting with our dollars, purchasing the kind of products we want to see more of on our store shelves.

This is what I wrote in my post about the boys. It still reflects my thoughts. "If anything is going to change, I suspect you and I are going to have to be part of changing it. I believe there are things worth dying for. Deodorant isn't one of them."

Death by Deodorant

When I'm not reading and writing about MCS, I'm often reading and writing about addiction, because I work part-time from home writing articles on the subject. My entry into the field was more by happenstance than design, but I find the topic interesting, especially the research into drug-related brain effects. There's a lot of overlap between MCS issues and addiction science.

The abuse of inhalants, often known as "huffing," is especially interesting to me because of its obvious tie-in to chemical sensitivity. As a culture, we seem to be a bit double-minded on the issue of whether we think common chemical products can harm us. We sell them, buy them, and use them in huge amounts without seeming to think about their safety too much, but we do seem to acknowledge the dangers of inhaling them intentionally. Unfortunately, although dosage does matter, our bodies react in much the same way whether we're huffing in an attempt to get high or we're inhaling products in the air around us because we have no way to escape them.

Do you wonder if a product may be affecting you or someone around you? A look at some of the known effects of huffing may help you figure it out. The National Institute on Drug Abuse and the Substance Abuse and Mental Health Services Administration note the following among the possible effects of inhalants:

• Headache

• Dizziness

• Lightheadedness

• Drowsiness

• Lack of coordination

• Confusion

• Nausea

• Hypoxia (oxygen deprivation) which damages brain and other cells

• Memory impairment

• Difficulty holding a conversation

• Breakdown of the myelin sheath around nerves, leading to possible muscle spasms, tremors, or difficulty walking

• Hearing loss

• Peripheral neuropathy

• Damage to the central nervous system

• Bone marrow damage

• Liver and kidney damage

• Blood oxygen depletion

• Loss of inhibition

• Violent behavior

• Heart palpitations

• Diarrhea

• Abdominal pain

• Sneezing

• Coughing

• Wheezing

• Excitability

• Low blood pressure

• Slow or rapid heartbeat

• Lack of concentration

• Poor memory

• Poor learning skills

• Anxiety

• Irritability

When people abuse inhalants intentionally, there is a significant risk of Sudden Sniffing Death Syndrome, which is exactly what the name implies. Those who are simply exposed to inhalants throughout the course of their day are less likely to suddenly die from them. It's not impossible, however. I vividly remember hearing the story a few years ago of a 12 year old boy who collapsed and died after applying deodorant in his family home. A report of the event notes that the boy was fit and healthy and the pathologist found no evidence of substance abuse. Interestingly, when looking for the story, I found an almost identical one reported 10 years earlier. In 1998, a 16-year-old boy described as a "normal, healthy teenager who was not engaging in any form of substance abuse" was overcome by deodorant fumes and died.

What improved between 1998, when the 16-year-old died and 2008, when the 12-year-old met the same fate? Did the products get safer or did society become more aware of the dangers? It doesn’t appear so. How about 2018? Will things be different then? If anything is going to change, I suspect you and I are going to have to be part of changing it. I believe there are things worth dying for. Deodorant isn't one of them.