One journey

17 03 2016

We received this story from a reader, Stacey Skold, who is working on her PhD at the University of Nebraska-Lincoln.  Her area of study is Human Sciences. With the birth of her daughter, she learned about the impact of chemicals on children and our world generally. She subsequently applied environmental education to her studies in the Department of Textiles, Merchandising, and Fashion Design.  She will have an exhibition, “Canary Concepts and the Hidden Danger of Ubiquitous Things”  from April 11, 2016 through April 22 at the Hillestad Textiles Gallery at the University of Nebraska-Lincoln.   This is in partial fulfillment of her dissertation research, “Ecological Art as a Transformative Tool in Cultilvating Environmental Knowledge, Environmental Sensitivity, and Environmentally-Responsible Behaviors.”  But let her speak for herself:

The After:

…Like the albatross, we first-world humans find ourselves lacking the ability to discern anymore what is nourishing from what is toxic to our lives and our spirits. Choked to death on our waste, the mythical albatross calls upon us to recognize that our greatest challenge lies not out there, but in here.  Chris Jordan. February, 2011

There are events in life that are transformative…

They are a select few. They separate what was before from “the after”.  They change our lives so deeply that the world after is new…

You might be wondering what this has to do with textiles… It so happens that thinking critically about fabric, the textile industry, and the world in general has become a big part of “my after”…  For many, such events might be birth, death, or marriage… Or it might be something unexpected… My After event involves my oldest daughter.

She was an early bird. That is a light-hearted way of saying she was a preemie. At thirty-four weeks, her lungs needed more time. Having a baby in a neonatal intensive care unit (NICU) was an intense experience; her first days of life were close to death. It changed us as did the complexity of the neonatal experience overall.

Close to her due date, we brought her home—home with a heart monitor, oxygen tank, and a lot of love—love tempered with a certain amount of anxiety about caring for our baby girl whose needs were met exclusively by equipment and a team of NICU nurses her first month of life. We never learned exactly why she was early, and over time, she still had trouble breathing. Other things were challenging such as hearing, eating, talking, digesting, growing, and even recovering from a cold… We acquired multiple doctors and diagnoses. I grew not to care about the labels as long as they got us some kind of help. But nothing really seemed to help.

Her birth was certainly a transformative life experience. But for us, it was a blood test that turned our world upside down—it began “our after”…She had a lot of them. I didn’t keep track, and she didn’t even cry anymore… As always, I squeezed her free hand, smiled, and said “you are a tough cookie”. I was proud—very proud—very very proud of her. But truth-be-told, I was equally sad. I was the one who was going to cry. And many times I did when she was sleeping. Should one so young need to be so tough?

But this blood draw was different. These tests were different…

We hit that point.

Our before was filled with questions without answers even with a multitude of doctors. The antibiotics, steroids, and bronchodilators seemed to catalyze more of the same. It is a point when people begin to consider the other biomedical doctors. Their tests were new to me. They involved my daughter’s liver enzymes, her vitamin and minerals, her methylation pathway as well as heavy metals. We soon learned that her vitamin and mineral levels were down and other levels were up… others including antimony.

I wasn’t entirely sure what it was… or why she would have it in her body. I also wondered why it was up and why her minerals would be down. She was drinking prescribed pediatric drinks packed full of vitamins and minerals, and I certainly would not feed her anything that would hurt her or allow anything dangerous in our home… or so I thought. These were questions with answers. When it came to the antimony, I remember the doctor nonchalantly saying “…oh yeah, that’s the flame retardants….”

That was IT. That was our event—and so began “our after”…. 

His words inspired a new set of questions… What possibly could be wrong with something made to protect my daughter and the rest of my family from fire? I came to learn that flame retardants (FRs) are a class of chemicals added to or bonded to materials or their surfaces to meet flammability standards and to delay the spread of fire. I also came to learn their efficacy is in question and that some are quite toxic.

This is where my story becomes a little less like a story and a little more technical for a while. But to understand why a toddler would have antimony in her body, we must consider science (and the lack of it) as well as legislation and money. I do understand if you want to skip a few paragraphs—10 to be exact. I hope I don’t lose you completely…

Back to Antimony…

So, why did she have antimony among other undesirable things in her little body… Antimony trioxide is a FR synergist with halogenated materials (Grund, 2005). This means that the antimony enhances the effect of the halogenated FRs commonly found in electronics, polyurethane foam, building insulation, wire, and cable. This also means that the antimony is the tip of the toxic iceberg…

There are multiple different FR compounds. Two major types are Organohalogenated FRs (compounds in which carbon is bonded to bromine, chlorine, or fluorine) and organophosphorous FRs (compounds in which carbon is bonded to phosphorous). These FRs are especially dangerous, as they are not chemically bonded and easily fall off the objects in the form of dust, which is easily ingested or inhaled. According to the Green Science Policy Institute, these chemicals are often toxic, persistent, and bioaccumulative in our bodies and the environment. All 21 chemicals globally banned as Persistent Organic Pollutants under the Stockholm Convention are organohalogens. The health risks related to these FRs include cancer as well as impaired reproduction, fetal and child development, and neurologic and immune system function (Green Science Policy Institute, Flame Retardants, 2014). In addition, the brominated-flame retardants (BFRs) are considered endocrine disrupting chemicals (EDCs). The endocrine system is responsible for our hormones, which are vital to all functions of life. EDCs impact our naturally-occurring hormones including estrogen, testosterone, growth hormones, insulin, and thyroid hormones in a variety of ways. This can affect our immune system, development, bonding behaviors and a wide range of other bodily functions (Landrigan & Etzel, 2014). Billions of pounds of EDCs are manufactured per year and include bisphenal A (BPA), certain pesticides, as well as the BFRs (Endocrinedxisruption.org).

These chemicals are ubiquitous, as FRs are found in a vast range of everyday objects ranging from mattresses and furniture to TVs and toys. While FRs were developed to improve safety, much scrutiny exists regarding their efficacy and health impact (Green Science Policy Institute, Flame Retardants, 2014).

We are Pre-polluted

As a result, humans are being born “pre-polluted”… Babies are not born with a clean slate… Even before birth, they are facing the challenges of modern life. In addition, to being exposed to toxins while in the womb, humans are also exposed immediately after birth in the form of breastmilk, as outlined in the Environmental Defense Study “PRE-POLLUTED: A report on the toxic substances in the umbilical cord blood of Canadian newborns” (2013). In a 1999 groundbreaking study, Swedish scientists found that women’s breast milk contained poly brominated diphenyl ether (PBDE). What is even more troubling is that while this EDC FR had been phased out, it has been doubling every five years since 1972. Even when it is no longer produced, a FR such as the PBDE, can be tenacious and impact humans, animals, and the environment decades after exposure (Meironyte, et al.,1999).

So, why is this stuff in our stuff?

FRs are not new. They have been used throughout history. The Chinese utilized vinegar and alum on wood and the Egyptians soaked grass and reeds in salt water to attempt to control fire-related disasters (Horocks, 2001). But it was the US petro-chemical revolution with the development of synthetic fibers that prompted FR legislation and their use on a wide scale. Synthetic fabrics are derived from petrochemicals, and petroleum is a fire accelerant. This change in conjunction with the increase in cigarette smoking laid the groundwork for numerous regulations and legislation mandating FRs in our products. Rather than utilizing natural fabrics, many of which are naturally flame resistant such as wool, the approach to minimizing fire-related injuries was to mandate FRs. They were required in furniture, electronics, clothing, and cars. Ironically, FRs do not necessarily slow down or prevent fires and when FR products burn the gas and smoke they produce is more toxic—especially to firefighters. This is why standards are changing and certain FRs are banned. But even when FRs are not required, they can be found in products, as the manufacturers still include them.

If FRs are so dangerous, how can they be allowed in all of our stuff?

In my before, I felt that the system and our government protected us. I thought that anything mandated on such a scale had to be safe. Unfortunately, that is not the case. The Toxic Substances Control Act (ToSCA) is the 1976 United States law that sets standards for the industry and is supposed to regulate chemicals to protect us. Unfortunately, this law is ineffective and outdated. The primary problem with ToSCA is that the government has to provide actual harm in order to control or replace a dangerous chemical. This is in contrast to other countries who must demonstrate that their products are safe before they are available to the public. As a result, chemical companies have been spending an immense amount of money developing FRs that could be made cheaply while increasing their marketing and lobbying efforts related to FRs. Even when one FR such as PBDE is proven to be harmful and removed from the market, it can be replaced with chemicals that may be equally or more toxic (Safer Chemicals Healthy Families, 2014).

These hazardous and multigenerational, toxic chemicals are ubiquitous. Humans are ingesting and breathing FRs in their homes, workplaces, and cars. Even before my daughter was born, it seems they surrounded us in our newly-built home in the insulation, new couch and bed, electronics, and our dust. After she was born, there were even more. They were in her pajamas, her mattress, floor mats, and car seat. The dust from these objects lands on the floor where she crawled and on the toys she played with and mouthed. These chemicals are especially pervasive in infant and children’s products. If that weren’t enough, infants and children have a lower threshold for toxic chemicals. Fetuses, infants, and children are more susceptible to such exposures than adults.

Children are not little adults…. 

This concept is more widely acknowledged thanks to groundbreaking books such as Textbook of Children’s Environmental Health (2014). Doctor-epidemiologist authors Philip Landrigan and Ruth Etzel devote an entire chapter to children’s “exquisite vulnerability to environmental exposures”. They explain how fetuses, infants, and children have proportionately greater exposures than adults to toxic chemicals on a body-weight basis. This is for various reasons. For one, their metabolism is immature so their ability to metabolize and excrete toxic chemicals is different. In addition, infants and children spend time in different locations and are exposed to more dust and vapors near the floor. They also put their hands and other objects in their mouths more and wash their hands less (Landrigan & Etzel, 2014).

Our skin is a primary means of toxin absorption….

While most are aware of toxic exposures via digestion and the lungs, the high permeability of our skin is an under-appreciated source. Unlike toxins that enter the body via the mouth and end up in the intestines where they are transported by the blood into the liver—the body’s detoxifier, toxins absorbed via the skin bypass the liver. According to toxicology specialist, Dr. Samuel Epstein, who is cited in Killer Clothes (2011), our skin is a primary means of toxin absorption. It is more permeable than the intestines, and a child’s skin is even thinner and more permeable than an adult’s. This makes synthetic and flame retardant-fabric especially problematic for them (Clement, 2011).

Varying thresholds for toxins…

Other individual differences account for varying thresholds for toxin exposure. In addition to liver function, genetics and variations in the Methylation Cycle mean differences in susceptibility. The Methylation Cycle is a biochemical pathway that manages or contributes to a wide range of crucial bodily functions, including: immune function, maintaining DNA, energy production, mood balancing, controlling inflammation, as well as detoxification. While knowing one’s genomic profile can be empowering, realizing that FRs were just the beginning was was disheartening. We are surrounded by a multitude of harmful chemicals found in everyday things… I learned that after pumping for fourteen months, her baby bottles contained BPA (another EDC). In addition, many of the toys she played with and mouthed had BPA as well as FRs. The tubing and bags among other equipment in the NICU contained phthalates, and the recommended sanitizer contained triclosan. Unfortunately, the list goes on. These and other chemicals such as my terbutaline shots to attempt to stop early labor, my daughter’s fluoride drops, and synergistic lasix and gentamicin meds for her lungs and potential infection were all given with good intentions, but more than likely also caused harm. We truly live in a world where it has become hard to distinguish what is healthful from what is harmful. What we think is helping could be hurting… or both.

Thus began the work of the new after… 

The more I learned, the angrier I became and the more overwhelmed I felt. The FRs were everywhere, but I was not about to let these invaders continue to take over my child, my family, my home, or my life. Never underestimate the power of an angry mother—especially one with unlimited access to caffeine and the internet.

We became very conscientiousness consumers.  I learned about avoiding and removing FRs as well as other chemicals. The amount of time I spent researching and assessing objects and consequently trying to remove or mitigate what others were putting in or on products in our house was disheartening to say the least… Ultimately, many of the things we bought for our daughter ranging from pajamas to floor mats—items purchased with the intent to comfort and protect her—had great potential to contribute to her poor health and challenges. I had researched and ultimately removed most of her pajamas from our home as well as her boppy and blankets. Many such items were heartfelt-gifts from family and friends.

Building a bubble…

We changed many of her toys, bottles, clothes, bedding as well as our food, utensils, dishes, pans, soap, sanitizer, clothes, pillows, sheets, and stores. While I couldn’t rid the world of FRs and other toxic chemicals, I thought I could at least rid our house of them and create a safe bubble for my family—or at least I would try…

Shopping became less enjoyable and more stressful. I simply did not buy toys or clothing without some level of research. And rather than looking for infant child pajamas that indicated they were flame retardant, I had to look for infant and pajama labels identifying that they were not flame retardant. How ironic that one should expect neurotoxins in what they buy unless it is states otherwise.

Over time, I concluded that I simply could not keep my family in a bubble and that a bubble was inadequate anyway. I realized this as I was encasing our mattresses in 6 millimeter food-grade polyethylene sheeting (PVC-free of course). Given the high price of organic mattresses, this option is popular for health-minded consumers. Initially one might consider encasing a mattress in plastic to protect the mattress. But I encased the mattress in this non-toxic plastic to protect her from the off-gassing chemicals. Although unsustainable, the polyethylene sheeting doesn’t off-gas, and applied correctly can protect the sleeper from the toxic chemicals in the mattress. The directions even specify where to cut the holes in the bottom side so the gases can exit away from one’s face…  Exhausted, I sat on the floor staring at the mattress… The process of encasing a mattress was not for sissies,… and neither was “the after.” It was War. The idea of one’s home being a protective bubble was no more. I couldn’t keep the invisible enemies out of our house and needed a bubble in my bubble. While I couldn’t keep my family in a bubble, I was going to be happy to keep my mattress in one.

Happy is an overstatement.

Truth be told, I was sad. I had a hard time identifying it with all of the anger, but it was there. Ultimately, I realized I was grieving in the after…

I was grieving the loss of a normal birth experience, and yes a normal baby. She wasn’t what I expected… She was more. It turns out much of  “the after” has been a gift. It has made us stronger and more resilient.

I was grieving the loss of our “normal” life.  The changes one has to make in attempting to minimize exposure to harmful chemicals impacts everything and everybody. The “war on chemicals” impacted our marriage, our jobs, our time, our mental stamina, and our sleep—or lack of it.

I was grieving the loss of my old self. I was a different person in “the after”. The person people liked to talk to at cocktail parties was gone. The person who went to cocktail parties was gone. The person who people liked was gone.

Most of all, I was grieving my loss of trust—trust in products, trust in the system, and trust in the world around us.

Such is life in “the after”…

My before was very safe and filled with trust. “The after” was uncertain and full of new responsibilities. I couldn’t count on our products, our food, our clothing, or our furniture to be safe. I could only count on me, and I wasn’t sure if I was up for the challenge. I’m not sure any person is truly up to such a challenge—the challenge of discerning what is safe from what is harmful in our world with invisible pollution.

The “new normal” 

Slowly we are all healing. Our family has grown in many ways… Navigating our way through the stuff is routine in a world where health problems are the norm and chemical-free products are not. We have not accepted it, but are finding productive ways to deal with it. We celebrate changes….changes such as Technical Bulletin 117-2013 (TB 117-2013), a new standard that allows fire safety without the need for FRs. We celebrate the increase in awareness from a variety of sources including the documentary Toxic Hot Seat as well as Kaiser Permanente’s public announcement that it will stop buying furniture treated with flame retardant chemicals (Green Science Policy Institute, Furniture, 2014). We also celebrate the increase in state legislation related to toxic chemicals. As of March 2016, 24 states are considering 91 policies to protect people from toxic chemicals. 159 state policies have been adopted in 33 states. In regard to FRs, there are 18 current policies in 13 states and 30 adopted policies in 12 states (Safer States, 2016).

With such changes, I have gained more trust trust back in the world and in the integrity of our bubble. I have become increasingly satisfied with minimizing our exposure and with doing my best. This is the gift of “the after”… a renewed confidence and understanding about our world and our selves with a new passion to protect them both.

We also celebrate each success with our daughter. She continues to be a tough cookie during those blood tests in “the after.” The results have enabled us to help her more effectively. With many changes and interventions her vitamins and minerals are up and so is her weight. She is healthier and happier than she has ever been. While we may never know to what degree the antimony and other chemical exposures played a role in her challenges, it has become clear that such chemicals are harmful to humans, wildlife, and our planet.

Like Chris Jordan’s albatross birds who eat and feed plastic pollution to their young, my daughter was polluted albeit invisible to the naked eye. His tragic birds and my early bird showed me what I knew in my before, but didn’t see until “our after.”

It got personal…

In The Failure of Environmental Education and How We Can Fix It (2011), authors Saylan and Blumstein point out that learning about our environmental problems hasn’t been enough to change our behaviors. People need relevance… the world’s problems need to become personal.

In my before I heard about toxins and knew there were concerns for humans and the environment. But for me, and I suspect others, even after reading it, hearing it, and knowing it, it couldn’t have become real until that transformative event—that blood test. The number on the paper was a physical manifestation of the invisible pollution. It became all too real and impossible to ignore or to think about at a later date. It is very real in “our after.”

The problem got personal for me, for many others before me, and is going to get personal for many others in the future. They too will change. There will be greater environmental sensitivity and more responsible behaviors. But for how many, how much, and how soon? To change our system and revise ToSCA, environmentalism needs to transcend what is considered a political concern to be a human health concern. To more effectively address what many consider “environmental” issues, perhaps we need a more human-centered focus.

We have been talking about saving the planet for a long time. But it may be in our best interest and our planets’ best interest to talk about saving ourselves—not to mention our children. In doing so, more will understand that the problems in our environment are intertwined with human health. When we are getting sick so is our wildlife, and so is our planet and so are our resources… And slowly we will heal—we have to… the human race depends upon it.

We are trying to give our children the tools to live in “the after.” In The Green Boat, Mary Pipher writes  “…If we don’t sail carefully and tend to those on board, we will perish. If we manage to keep our boat afloat, our world can sail on, not as it is today, but in a more joyous, peaceful, and beautiful way….” (2013). It is my hope we are fixing it enough for them—and even more for their children. I long for a world more beautiful than my before and “my after”—a world with fewer and safer chemicals, better legislation, and a whole lot more trust. That is a beautiful world.

After Words

Thank you O Ecotextiles and Two Sisters Ecotextiles for giving me a reason to write my story. But more importantly, thank you for being a part of “our after” providing us with exquisite fabrics we can trust.

References

Clement, Anna Maria & Brian R. (2011). Killer Clothes: How Seemingly Innocent Clothing Choices Endanger Your Health… And How to Protect Yourself! Summertown, TN: Hippocrates Publications.

The Endocrine Disruption Exchange. Prenatal Origins of Endocrine Disruption: Critical Windows of Development. Retrieved from http://endocrinedisruption.org/prenatal-origins-of-endocrine-disruption/critical-windows-of-development/chemicals-in-the-timeline/bisphenol-a

Environmental Defense. (2013, June). Pre-Polluted: A Report on Toxic Substances in the Umbilical Cord of Canadian Newborns. Retrieved from http://environmentaldefence.ca/prepolluted

Green Science Policy Institute. Flame Retardants. Retrieved from http://greensciencepolicy.org/topics/flame-retardants/

Green Science Policy Institute. Furniture. Retrieved from http://greensciencepolicy.org/topics/furniture/

Green Science Policy Institute. San Antonio Statement. Retrieved from http://greensciencepolicy.org/?s=san+antonio

Grund, S. C.; Hanusch, K.; Breunig, H. J. & Wolf, H. U. (2005). Antimony and Antimony Compounds, Ullmann’s Encyclopedia of Industrial Chemistry. Hoboken, NJ: John Wiley & Sons.

Horocks, A. & Price, D. (Eds.) (2001).Fire Retardant Materials. Boca Raton, FL: Woodhead Publishing Ltd.

Landrigan, P. & Etzel, R. (Eds.) (2014). Textbook of Children’s Environmental Health. New York, NY: Oxford University Press.

Meironyte, et al., (1999) Analysis of Polybrominated Diphenyl Ethers in Swedish Human Milk: A Time-Related Trend Study, 1972-1997. Journal of Toxicological Environmental Health, 58, 329-341.

MTHFR.net. Retrieved from http://mthfr.net/mthfr-research/2012/01/27/

Peeples, L. (2014, June 3). Kaiser Permanente Pledges To Stop Buying Flame-Retardant Furniture. Huffington Post. Retrieved from

http://www.huffingtonpost.com/2014/06/03/kaiser-permanente-flame-retardant-furniture_n_5441011.html

Pipher, M. (2013). The Green Boat: Reviving Ourselves in Our Capsized Culture. New York, NY: Riverhead Books.

Safer Chemicals, Healthy Families. What is TSCA? Retrieved from http://saferchemicals.org/get-the-facts/what-is-tsca/

Safer States. Bill Tracker. Retrieved from http://www.saferstates.org/bill-tracker/

Saylan, C. & Blumstein, D. (2011). The Failure of Environmental Education (And How We Can Fix It). Berkeley, CA: University of California Press.

Stockholm Convention. Retrieved from http://chm.pops.int/Countries/StatusofRatifications/PartiesandSignatories/tabid/252/Default.aspx


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5 responses

17 03 2016
mary bennett

Wow….thanks lavd…

17 03 2016
Jen

Spot on, very well said. Your words illustrate exactly what my husband has tackled / been through. Our daughter is now 5, and he has created a wonderful (almost) toxin free life for us. There has been, is, and always will be significant stress, but i have never been more grateful for his care, passion and concern. These words particularly chimed:

…”I was grieving the loss of our “normal” life. The changes one has to make in attempting to minimize exposure to harmful chemicals impacts everything and everybody. The “war on chemicals” impacted our marriage, our jobs, our time, our mental stamina, and our sleep—or lack of it.

I was grieving the loss of my old self. I was a different person in “the after”. The person people liked to talk to at cocktail parties was gone. The person who went to cocktail parties was gone. The person who people liked was gone.

Most of all, I was grieving my loss of trust—trust in products, trust in the system, and trust in the world around us.”

Bang on. You are absolutely bang on. xxx

17 03 2016
Johanna (Hansie) Armour

How fantastic that Stacey was able to write her story!! so clearly and NO she did not lose me.
As a 6th generation woolgrower having had to come to terms with the fact our beautiful fibre during processing is covered entirely , each fibre , with a coating of plastic ,I grieve with her !!
When I approached the Australian Wool Board , the CEO and the Chair of the board , and posed the question to them ” with the processing you have killed the natural benefits of wool which you use to promote our wool especially its fire retardant property? ” the simple answer was and I quote Jimmy Jackson, the man in charge ” Don’t know why you are so upset…… we resolve that by then covering the plastic with a fire retardant ”
Our “new after” has been to try and expose this and to try and change our supply chain from the farm to the textile. We have succeeded to a point…. we produce our own textile Te Kooti Milymerino R but have been undermined every step of the way by the industry itself…business partners and even friends.
All is commercially greed , and it is so sad that it will have to become much more “personal” before things might change
Hansie

18 03 2016
scomen

Your story is beautiful! I had a similar “After” when I was diagnosed with cancer at 23 years old. I am now 56. We will slowly relearn how to live in the ways that have been part of human life for thousands of years. Think older and simpler. It does not have to be difficult, but it often takes more time…
Congratulations!!
sc

8 04 2016
Harmony

Thank you for sharing this. May our collective voices and strength bring the changes we desire. “Love inspires, illumines, designates, and leads the way” – MB Eddy

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