Monday, November 10, 2014

Encouragement and Dismissal

In the seven months since I lost my husband, I think I've managed to maintain a fair degree of emotional stability. There are definitely peaks and valleys in this journey, however, and a month or so ago I experienced a Very Bad Week. During that week, I wrote most of this blog post, but decided I should probably let it sit a while before posting it. Looking at it now, I do think that the issues raised during my meltdown might be helpful to discuss even though the emotional storm has passed and I’m currently feeling much less angry at the world.

The primary question that I examined during my Very Bad Week was why, when I'm struggling, the same phrase, such as "God has a plan" can sometimes sound like encouragement and sometimes sound like dismissal. I realize that messages are interpreted by hearers, and that the mood I'm in or my personal history can influence the way I perceive a statement. Still, I do think it's wise for all of us to do what we can to increase the odds of our interactions with others being perceived as helpful rather than hurtful. Here are some of the factors I see as important:

·    Validation – I believe that validation is the key difference between encouragement and dismissal. Encouragement acknowledges the reality of a difficult situation and corresponding negative emotions, while dismissal minimizes them. Validation communicates the message “You have a problem,” while dismissal can communicate “You are a problem.”
  
      As part of my work, I occasionally have reason to write about the psychological intervention known as dialectical behavior therapy, or DBT, which is an offshoot of traditional cognitive behavioral therapy. Studying DBT has helped me understand the power of validation. An article on the development of DBT notes that some patients found cognitive behavioral therapy's singular focus on change invalidating and responded with anger or withdrawal. The developer of DBT addressed the issue by adding validation strategies, which communicated acceptance and the acknowledgement that a client’s emotions and behaviors “made real sense in some way."  The National Institute of Mental Health reports that a comparison of DBT with other strategies in patients  with borderline personality disorder found that DBT reduced suicide attempts by half and more than halved the therapy dropout rate.

I can best understand the importance of validation by remembering the purpose of pain. Pain exists to be acknowledged. It tells us that something is not functioning optimally and alerts us that some sort of action needs to be taken. The pain of appendicitis tells us to get to the hospital. The pain of a sprained ankle tells us to stay off of it so it can heal. Emotional pain can play the same role. When we refuse to recognize the pain in ourselves and others, we negate its purpose.

·    Timing of suggestions – It isn't wrong to urge people to think positively or to offer suggestions and advice for addressing an issue. I think that we're more likely to listen to suggestions from each other, though, when we first feel that we've been heard and understood. So many of the Psalms follow a pattern of lament and complaint yielding to acceptance and praise. It's important to get to that place of peace, but I think it's unrealistic for us to expect people in pain to start there. When we give suggestions too soon, especially if they seem like clich├ęs (“Just trust God”), it can feel like we’re in a hurry to end the conversation and move on. It can communicate dismissal and lack of real concern. Encouragement holds back on giving suggestions until validation has taken place.

·    Listening – The more we understand the problems and emotions of another person, the more real encouragement we can offer. It’s easy to assume that we know what someone else is feeling, but the only way to approach true understanding is to listen without interrupting and to ask questions when clarification is needed. What’s the main emotion someone is feeling?  Fear? Anger? Rejection?  Are there beliefs or past experiences that contribute to these feelings?  Encouragement takes time to find out. “Active listening” which involves paying full attention to the words of another, then re-phrasing and repeating them for verification can be very helpful.

·    Belief – Although it sounds obvious, I think it’s easy for us to forget sometimes that people are the ultimate experts on their own lives. If someone tells me that they always get depressed in April, it’s important for me to believe that, even if my own worst month tends to be October. As I wrote in a previous post, it’s wise to remind ourselves that people can experience the same situation in very different ways and to believe the experiences of others, even if they differ from ours. This can be a significant difference between encouragement and dismissal.

·    Equivalence – Finding commonalities is important in relationship building. The problem, though, is the tendency to make commonalities into equivalence. Yes, to a large degree pain is pain. Surely, though, we can agree that losing a pet is not equivalent to losing a child and that having the flu does not equip us to understand the experiences of a cancer patient. No matter how well-meaning our intentions, when we say “I understand how you feel because . . .” and the “because” is something that doesn’t seem equivalent at all to the hearer, it can feel like the reality of the problem is being minimized and dismissed.

·    Assumptions – Sometimes people minimize a problem because they assume there are untapped resources for solving it. These assumptions are not always entirely logical. In the chemical illness arena, for example, I often find that people assume that others maintain non-toxic homes I can enter despite the fact that their own homes are not toxin-free. I hesitate to make this next point, because I’ve had some wonderful help from family and church members, and I’m extremely grateful for it. During my Very Bad Week, however, I got the feeling, rightly or wrongly, that the government expected my family to take care of me, my family was relying on the church, and the church assumed I would find help from the government. When we volunteer to address a need it generally communicates encouragement, but when we volunteer someone else it can feel like dismissal.

·    Platitudes – It’s easy to fall back on phrases that contain truth, but that have been repeated so often that saying them may communicate a lack of thought or attention to the realities of the situation. Often, the truth contained in a phrase is nuanced. “Everything will be OK” is true, for example, if we take the long view. There’s a promised life after this one, full of joy and free from pain. It’s not true, however, that when people experience difficult circumstances they are then guaranteed no more difficulties in this present life. We all want to believe the world works that way, but scripture and observation tell us otherwise. None of us can see the future and promise someone else freedom from struggle.

·    Prayer – Without validation, even prayer can be used in a way that feels like dismissal sometimes. When someone takes time to listen to and acknowledge a problem, then says, “I’ll pray for you,” it can be deeply encouraging. When someone says “I’ll pray for you” without first acknowledging the depth of the issue, however, it can feel like an attempt to avoid engagement. Actually taking the time to pray with someone can be very meaningful and encouraging, especially if the prayer expresses a true understanding of the issues involved.

To everyone who has encouraged me by listening to my concerns and validating them, I offer my sincere and heartfelt thanks. To people I’ve failed to encourage effectively, I offer my apologies. I hope we can all get better at this.

Monday, September 8, 2014

Disability

Many people have asked me, through the years, why I’m not “on disability.”  Since my husband died, the questions have increased.  Although everyone’s situation is unique, mine may shed some light on the struggles of others, as well, so I’ll take some time to explain the issues as I understand them.  I’m certainly no expert on the subject, but I’ve done enough reading and I’ve had enough contact with people going through the process that I think I understand the basics and can take a shot at laying out the options.  This may take a while, so if you’re not interested in the topic, you might want to bail out now.  Otherwise, pour yourself a cup of coffee and settle in.

Disability Programs

There are a number of different ways that people can receive financial assistance after becoming disabled.  Each program has its own set of qualifying criteria, and people who meet it can then apply for assistance.  The major programs include the following:

o   SSDI - Usually, when people speak of “getting disability,” they are referring to the program known as Social Security Disability Insurance, or SSDI.  To qualify for SSDI, applicants must have worked for employers who paid Social Security taxes for them, or have paid self-employment taxes if they worked for themselves.  Qualifications also include a long enough and recent enough work history. The amount paid to those who qualify for SSDI is based on a formula which includes the amount that recipients earned during their working years.

Personally, I don’t qualify for SSDI because I was a missionary when I became ill, and my mission board didn’t pay into Social Security for the married female missionaries.  A similar situation is faced by stay-at-home parents who become disabled.  People working traditional jobs when they begin feeling ill may face a different problem.  As they become increasingly disabled, it’s common for people to cut back on their working hours or to find less-demanding and less-well-paying employment.  Often, by the time people give up and apply for disability, the amount they can receive is lower than it would have been if they had not continued trying to work.

o   SSI – Those who don’t qualify for SSDI may qualify for Supplemental Security Income, or SSI.  Eligibility for SSI is based on income and assets.  SSI looks at family, rather than simply individual income, and while my husband was alive and working, our income was above the limit.  Currently, I don’t qualify because I have more than $2,000 in assets, which is the maximum amount individuals are allowed.

o   Early survivor’s benefits – When workers retire, they are generally eligible for Social Security payments.  If they die before retirement age, their widow or widower is entitled to survivor’s benefits based on the deceased worker’s earnings history.   Generally, a widow or widower is eligible for survivor’s benefits (at a reduced rate) at age 60.  However, people can apply at age 50 if they are disabled.  This is the program through which I could apply. Like other Social Security payments, the full allowable amount can only be received at retirement age, and the sooner that recipients take benefits, the lower the amount will be (and will never increase, except for inflationary adjustments.)  As an aside, sometimes people confuse survivor benefits with spousal benefits, but they are different things.

o   Private disability insurance – It’s possible to purchase insurance policies that cover future disability.  These policies may be short-term disability policies, which have a maximum payment duration of no more than two years, or long-term disability policies, which can pay lifetime benefits, in some cases.  Disability insurance can be purchased on an individual basis, or may be provided by an employer.  A Forbes article states that payment is usually about 60% of an individual’s former salary.

o   Worker’s Compensation – If an injury or illness occurs on the job, people may be covered by worker’s compensation.  As the Forbes article notes, however, fewer than 5% of disabling accidents and illnesses are work-related.

The Application Process

After the initial qualifications have been met, the question becomes one of the nature and severity of the disability.  It is much more likely for approval to be granted based on some conditions than on others.  The Social Security Administration states that “we maintain a list of medical conditions that are so severe they automatically mean that you are disabled. If your condition is not on the list, we have to decide if it is of equal severity.”  They must also decide if applicants can do the work they did previously or are able to adjust to another type of employment.

Winning a disability claim, for any condition, isn’t easy.  The Social Security Office of Retirement and Disability Policy reports that between 2001 and 2010, 28% of applicants were awarded benefits at the initial claims level.  Of those that appealed, 3% were awarded benefits at the reconsideration and 13% at the hearing levels. The experiences of others with chemical illness leads me to believe that receiving disability for the condition isn’t completely impossible, but is definitely challenging.  It can be a multi-year process and can require doctor’s examinations, court appearances and other activities that are quite difficult for those with toxic illness to accomplish and that can make a sufferer’s condition worse.

In a book relating her chemical illness journey, teacher Lorraine Smith recounts her battle for compensation.  She speaks of visiting a doctor who laughed out loud when she described her health problems.  The doctor also wore an after-shave lotion that made her feel weak and dizzy, and when she mentioned her problem, the doctor said he was we­­­aring a “special fragrance” that didn’t cause reactions.  Smith also describes her time inside the courtroom, which was filled with people wearing synthetic fragrances. She mentions her need for a fragrance-free environment and notes that it would have helped to have access to fresh air, perhaps through an open window, and would have been nice to be scheduled as the first case of the day, to minimize exposure time.  She notes, “Without these provisions, I was actually being asked to perform tasks that were the very nature of my disability.” Exactly.

The fight for disability is also hindered by powerful adversaries with strong financial interest in downplaying and belittling chemical illness. In her enlightening paper entitled Multiple Chemical Sensitivities Under Seige, Dr. Ann McCampbell writes, “Perhaps the area where the chemical industry is most aggressively fighting MCS is in the courts.”  She notes that in addition to direct attacks on plaintiffs’ credibility, industry personnel file briefs, supply “expert” witnesses, and distribute anti-MCS literature to witnesses and attorneys.  The chemical industry is also very active in attempting to revoke the medical licenses of doctors who acknowledge and treat toxic illness.  This makes doctors understandably skittish about supporting their chemically ill patients who wish to file for disability.

Among my other significant health conditions is chronic Lyme disease.  Unfortunately, the politics of that condition aren’t much better.  Since this blog is primarily focused on the chemical toxicity problem, I won’t expound on the Lyme wars.  Anyone interested might want to read the novel Over the Edge or watch the documentary Under Our Skin.

The Financial Picture

Applying for disability can be not only logistically challenging, but emotionally challenging as well.  It can feel like giving up and acknowledging the permanence of a condition.  It also caps financial possibilities.  The Social Security Administration states that for 2014, the average monthly payment for those on SSI is $534 and the average disabled widow makes $713. The average payment for SSDI is better, at $1145, but is still considerably lower than many Americans would consider a living wage. People receiving disability payments are allowed to earn a small amount of money, but not enough to make a significant difference in their standard of living.  Everyone I know on disability struggles.  Public housing is generally not accessible for people with chemical illness, and even living with family is often not possible.  Many people live in their cars or in tents.

Disability payments can be a lifeline and a great help to many people.  I’m glad the programs exist and it’s possible that at some point I’ll decide my only option is to apply.  I do think it’s helpful, though, for people to understand that being disabled doesn’t always mean qualifying for benefits and that receiving benefits doesn’t mean an end to financial challenges. 

Being disabled by illness isn’t a lot of fun.  I don’t recommend it.  Seriously, life happens and it isn’t possible to prevent all illnesses and accidents.  It’s definitely possible, however, to lower the risk of developing a wide array of health conditions by lowering toxic exposures.  There are many, many reasons to take the issue seriously.

Friday, August 22, 2014

The Journey

I’m about to celebrate a birthday, which has directed my thoughts to all that transpired since the last one. Last year, on the day after my birthday, there was a vote which led to a church split, which is a significant event for church staff members and their families. Then we had a fire. Then my husband died.

It’s been quite a year.

The fact that the path my life has taken has been so hilly and full of curves has made a recent series of events seem even more interesting than it might have been otherwise. Here’s the story.

Dan’s sisters kindly invited me to join them on a trip to Yellowstone, so I gratefully packed up my tent. My oldest son was able to join us and flew into town so that he could drive my car. He had a couple of audiobooks and a variety of music for us to listen to along the way.

We traveled with the others and were usually following rather than leading. As is often the case when exploring a new area, getting from Point A to Point B sometimes required turning around. At one point, just as the lead car was stopping to reverse direction, the singer we were listening to sang “Turn around.”  We laughed at that, and turned around.

The next day we found ourselves once again unsure of the route. We found it amusing that, as we were wandering about, the music asked “Where are we?” and added “There are mountains.”

Those who’ve been to Yellowstone know the excitement of seeing animals in the wild. They also know that the excitement is sometimes tempered with impatience at the traffic jams caused by people stopping in the middle of the road. We were following a car that slowed to watch some buffalo. At that moment, the lyrics coming through our car’s sound system were “Don’t slow down.”

We got a kick out of this narration of our trip. As we headed for home, though, things got even more interesting.

Although we had arrived by a different route, we decided to return by the roads that took us through the Tetons and near the Jackson Hole area of Wyoming. We stopped and enjoyed the beauty. Then we got in the car, turned the music on, and heard the singer sing about being led to Jackson.

The strangest incident occurred later that day. We continued our drive through Wyoming, passing through the Wind River valley. We wondered aloud whether to pronounce it with a short vowel sound or long, unsure of whether the river was named after a breeze or the circuitous route it took. We got our answer. We were listening to an audiobook about an astronaut stranded on Mars. The narrator began discussing a battery—a battery made by the Wind River Company (pronounced with a short vowel sound, by the way). The Wind River mentioned in a book about Mars?  My son and I stared at each other in amazement.

There was one day left on our trip. By this time I expected a narration moment and I got one. We had been listening to music and I had been falling asleep. I didn’t want to sleep through the end of the book, though, and I knew we needed to start listening to it soon if we were going to finish it before we got home. As I tried to rouse myself so that we could make the switch, the singer sang “I’ll try to stay awake.”

Was all that coincidence?  Some will say so, but that’s not how I see it. I think a merciful God was simply saying, “I see you, Martha. I’m with you on this journey.”

I have no idea what this next year holds. There could be more disasters or a miraculous healing. There could be both. Whatever comes, though, I’m confident that God is with me.

He’s with me on this journey. He's with you, too.

Saturday, July 12, 2014

Receiving Sight

Recently, the church where my late husband served as worship minister held a blood drive in his memory. It was appropriate, because Dan frequently organized blood drives and was a blood and plasma donor as often as he was allowed. (Sometimes he wasn’t allowed to give because of places he had recently traveled.)  Dan was also a tissue donor. After his death, skin, bone and other tissues were shared with those who needed them. I was told that two people were likely to receive sight because of corneas they would receive from my always-giving husband.

I’ve been thinking about sight lately. Dan gave physical sight, but I’m also feebly trying, through this blog, to facilitate sight, or at least insight, myself. I want us all to see and understand the connection between products we use and the health symptoms we and others face. I want to help bring attention to the deception and obfuscation that prevent us from even easily knowing what we’re buying and using.

Last month, USA Today reported on a Consumer Reports survey finding that 66% of consumers wrongly believe the word “natural” on a food label means something. Consumers believe it may mean that a food contains no artificial ingredients or that no pesticides were used. Others connect the label to a lack of genetically engineered organisms, growth hormones or antibiotics. As the article states, however, “The problem is, consumers are wrong. Under federal labeling rules, the word natural means absolutely nothing.”

The situation is no better for personal care products. An Organic Consumers Association report noted that a survey found consumers to be "widely confused" by personal care product labeling. The report notes that almost half of survey respondents believe that a personal care product labeled  “Made with organic ingredients" is composed of "all" or "nearly all" organic ingredients, but that there are no federal regulations that require that.

Of course, the labeling problem goes far beyond the use of terms like “natural” and “organic.”  Problems include the fact that many ingredients don’t have to be listed at all, and that single innocuous-sounding terms can hide multitudes of potentially-dangerous chemicals. The Environmental Working Group reports that tests of fragrance products found an average of 14 chemicals per product that were not listed on the label.

Perhaps the most dangerous misperception regarding chemicals is that personal care, cleaning, and other common products are tested for safety before being marketed. A brief internet search didn’t quickly yield statistics, but I did find a report from the University of Massachusetts that addresses the issue.  The publication, entitled “Presumption of Safety: Limits of Federal Policies on Toxic Substances in Consumer Products states, “Despite the fact that most consumers believe that everyday products are thoroughly tested for dangerous chemicals and determined to be safe by government authorities, the reality is that existing regulatory systems leave significant gaps in their capacity to adequately protect consumers from chemical hazards in these products.”

It would be nice if products were proven safe before being sold, but they aren’t. It would be nice if we could count on labeling laws to help us be informed consumers, but we can’t. Addressing problems begins with seeing problems. Lord, please give us sight.


Saturday, May 24, 2014

Flame Retardants Revisited

Flame retardants have been in the news recently. First there was news of a study finding flame retardant chemicals to be prevalent inside preschools and day care centers. Researchers examined the air and dust inside 40 child care centers, including those in urban, rural and agricultural areas. They tested for 18 types of flame retardants. including those in two different chemical categories. Both types were found in 100% of the collected dust samples. As I wrote in a previous post on flame retardants, the chemicals have been linked to a wide range of serious health effects.

The second piece of news comes from an article in the Chicago Tribune which reports that a doctor who testified in support of flame retardants has given up his medical license after being accused of fabricating stories of children burned in furniture fires. The story comes on the heels of an excellent series of reports written over the past several years which describe “a decades-long campaign of deception that has loaded the furniture and electronics in American homes with pounds of toxic chemicals linked to cancer, neurological deficits, developmental problems and impaired fertility.” 

The ongoing flame retardant saga is a microcosm of the problem of unregulated, harmful, and ubiquitous chemicals that fill our world. Here’s some of what we know.

  • Organizations with benign-sounding names are often not what they seem. In their quest to create a demand for their product, manufacturers of flame retardants used a well-known tactic and created a front group known as Citizens for Fire Safety. The Tribune reported that the group billed itself as a coalition of fire professionals, doctors, educators, and others, but that public records showed it to be a trade association with three members: the three largest manufacturers of flame retardants. The website Safer States lists the American Chemistry Council and the Toy Industry Association as other chemical industry front groups. An eye-opening article called Multiple Chemical Sensitivities Under Siege lists the trade organizations Responsible Industry for a Sound Environment and the Environmental Sensitivities Research Institute as well-funded and active groups fighting against the recognition of chemical illness.

  • Expert testimony may come from people who are more biased than they appear. The Tribune reports that when he testified in favor of flame retardants, David Heimbach presented himself as simply a concerned doctor, but that he was actually paid $240,000.

  • Experts who testify on behalf of chemical companies may not always tell the truth. Heimbach admitted that he told "an anecdotal story rather than anything which I would say was absolutely true under oath, because I wasn't under oath."

  • Written communication can be equally misleading and deceitful. Citizens for Fire Safety sent a letter to fire chiefs on behalf of “those of us in the fire safety profession.”  The letter’s author, however, was a public relations consultant.

  • Whether chemicals actually do what they are supposed to do is often a debatable issue. The Tribune notes that the chemical industry often uses a particular government study as proof that flame retardants save lives, but that the study’s lead author says that his findings have been distorted and used “in ways that are improper and untruthful.” He notes that household furniture generally contains enough fire retardants to threaten health but not enough to provide meaningful fire protection, a situation he calls "the worst of both possible worlds.”  Use of the antibacterial ingredient triclosan is similar. Another Chicago Tribune story (I’m becoming a fan of theirs) notes that advisory committees for the American Medical Association and the U.S. Food and Drug Administration state that there is no evidence that washing hands with soap containing triclosan or other anti-microbials provides any health advantages over washing with regular soap and water. The article quotes a scientist with the Natural Resources Defense Council who says, "Triclosan is what we call a stupid use of a chemical. It doesn't work, it's not safe and it is not being regulated."

  • Problematic chemicals that are removed from products may reappear later or be replaced by equally problematic ones. The flame retardant known as chlorinated tris has been linked to cancer and was voluntarily removed from children’s pajamas decades ago. However,  when problems with the flame retardant penta emerged and it was no longer available for use in furniture products, chlorinated tris came back to partially take its place. Another flame retardant taking penta’s place is Firemaster 550 and, unsurprisingly, it is linked to a growing number of health problems.

Around and around we go. We need meaningful chemical regulation and those of us who care about the issue need to make our voices heard.

Sunday, May 4, 2014

The Chemicals in Commerce Act

I've previously written about the woefully inadequate Toxic Substances Control Act, in effect since the 1970s, and about efforts to update it. Last year, the Safe Chemicals Act was introduced in the Senate, but failed to gain bipartisan support. A bipartisan bill known as the Chemical Safety Improvement Act was then proposed. Public health and environmental groups have been divided in their opinion of whether the bill is strong enough in its current form to promote.

Now a bill has been introduced in the House. It's known as the Chemicals in Commerce Act (CICA) and many groups are characterizing it as a step backwards rather than forward. Noted problems include those related to setting health standards, prioritizing problematic chemicals, and enforcing deadlines and minimum requirements for action. Opposition is coming not only from health and environmental groups, but also from a coalition of states that oppose the bill because current state authority to regulate chemicals would be undermined and largely eliminated.

The regulation of chemicals is often framed as a fight between health and economic interests. As a recent Huffington Post article reports, however, problems associated with toxic exposures have an associated financial cost. The article notes that a 2011 study found that toxic chemicals and air pollutants cost $76.6 billion in lost working hours, reduced IQ points, and children’s health care. The study included only a fraction of possible concerns. It didn’t, for example, look at childhood obesity related to exposure to bisphenol A, which is estimated to cost the economy $1.49 billion.

If you'd like to add your voice to those calling for meaningful reform and expressing disappointment in the Chemicals in Commerce Act, the Center for Environmental Health has provided a way for people to easily contact their representatives about the issue. There's also an online petition that can be signed on the website of the organization Safer Chemicals: Healthy Families.

It would be nice if regulations were in place that required manufacturers to prove products safe before putting them on the market and making it easy to remove them once problems surfaced. Since that doesn’t exist, each of us must continue to do our homework and to purchase products with the health of ourselves, our families, and our fellow human beings in mind. 

Monday, April 14, 2014

Lessons from Loss

In the four short/long weeks since my husband died, a great number of family members, friends, and strangers have talked or written to me about the importance of fully experiencing the grieving process. I truly appreciate the concern and I absolutely believe in the necessity of acknowledging emotional realities. Still, I must admit that the persistence of the message hasn’t helped ease my anxiety about the future. In addition to my concerns about finances and the simple logistics of living as a homebound, chronically ill widow, I’m also wondering if I’m doing this grieving thing right and what the long-term ramifications are if I’m not.

Sometimes when I have these thoughts, I’m soothed by the fact that I’m not completely new to the grief game. Losing my husband is new, and I’m sure there will be elements of this loss that are deeper and broader and more complicated than any I’ve experienced up to this point. I’ve felt the sting of death before, though. I was two months into my teenage years when my mother died, an event that colored the rest of my life. Then I became chemically ill. Chronic illness brings grief, and chemical illness has special challenges that deepen it.

I was a missionary living overseas when illness struck. When I lost my health I also lost my job, my identity, my home, my friends, and my culture. It was easy to feel sorry for myself and to believe on some level that my losses were greater than what most people experience. Eventually, however, I came to see that the majority of people with serious chemical illness are forced to give up all those things as well. There are also less tangible losses, such as of independence, security, and the ability to participate in things that were once enjoyable. Dreams for the future die. Family relationships change. For Christians, some of the deepest pain often comes from being unable to attend church and feeling excluded from Christian fellowship. Dr. Pamela Gibson, in her book Multiple Chemical Sensitivity: A Survival Guide states, “If the effects of MCS could be summed up in three words, those words might be loss, loss, and more loss.”

I’ve learned lessons from dealing with the losses brought by illness. I hope these lessons will help me navigate the new waters ahead. Only time will tell. Much of what I’ve learned is from watching others who’ve walked and are walking the toxic illness road. I’ve watched people who’ve been severely battered by life hang onto faith, practice forgiveness and grace, and get up time and time again after being knocked down. I’ve been truly inspired by the examples of some of the strongest, most resilient people I know.

Maybe what I’ve learned so far will help me in the next phase of my life journey and maybe it won’t. Maybe something I’ve learned will help someone else, too, or maybe it won’t. I share here in the hope that it might. Here’s some of what I’ve learned so far about handling grief and loss.


  • There can be really horrible days. That doesn’t negate the fact that there can also be good days, or even good hours in the horrible days. Life will always be a mixture of pain and joy. I can allow myself to feel both without betraying my heart. 

  • I've heard it said that pain hollows out valleys for joy to fill, and I've found that to be true.  Pain enhances appreciation for the beautiful aspects of life.

  • I need to bring my feelings into the light so I can talk to God about them. He wants my honesty.

  • Every aspect of life is better when I spend consistent time in Bible Study and prayer. It’s amazing how many times I’ve had to re-learn that truth.

  • There’s a line somewhere between acknowledging and accepting negative emotions and wallowing in them. There is power in honesty and there is likewise power in “thinking on the good things” (Phil. 4:8).

  • It’s possible to both accept things as they are today and strive for change that will make things better tomorrow.

  • Physical pain tends to enhance and deepen emotional pain. I can feel bad emotionally without feeling bad physically, but the reverse is less often true. It’s often helpful to remind myself that life will look rosier when the physical pain lessens. (And I will never stop striving and praying for physical health.)

  • Certain chemical exposures cause emotional reactions. I’ve personally found that synthetic fragrances tend to produce anger in me and mercury-based preservatives cause depression. It’s just another reason to avoid toxins as much as I possibly can.

  • Sometimes I can discover an untrue or unhelpful belief underlying an emotion. For me, the most common unhelpful belief is that things will never change.

  • There’s a lot of danger in looking too far ahead and in letting my imagination run wild. Only God knows the future. If I’m going to imagine, I can imagine positive scenarios as well as negative ones. The important thing is for me to remember that God’s presence and grace will accompany whatever the future holds.

  • Looking ahead can be positive in one important way. It’s very helpful for me to always have at least one small thing to look forward to.

  • People can’t read my mind. If I need extra support on a given day, I need to tell someone.

  • Sometimes people surprise me with their kindness and support. They aren’t always the people I would have imagined.

  • I need to guard against the tendency to become jealous of people who haven’t had the same types of losses I’ve had.

  • Small pleasures, like reading a good book or receiving a phone call from a friend, can make a big difference in my emotional state.

  • It’s enormously helpful to remember that this life isn’t all there is.

  • Life is hard, but God is good. His grace is real.

Friday, March 21, 2014

Dan McLaughlin

On Saturday, March 15, my husband suddenly and unexpectedly passed from life to life. On a beautiful day, on an enjoyable outing, in the middle of a normal, pleasant conversation, he left the limitations of earth and entered the joy of heaven. My grief is deep. I loved him. I relied on him. I’ll miss him more than I can possibly say.

I realize that I’m not an objective observer, but I can say in all honesty that Dan was a remarkable man. He was brilliant, funny, talented and faithful. Since his death, the words “most” and “best” have been spoken and written over and over by those who knew him. People have called him “the best husband and father I’ve ever seen,” “the most godly person I’ve ever met,” and “the best man I’ve ever known.”

Dan lived life wide open. Once he met you, you were his friend. Once you were his friend, he would serve you and share all of himself with you. He used to simply say, “I like to be useful.”  He was a servant, through and through.

I don’t claim to understand the mystery of the relationship between God’s sovereignty, man’s free will, and natural law. Certainly God knows the time of each person’s death. Does that mean that he sets a specific day and hour for each of us?  I’m not going to even try to tackle that question. Here’s what I do know about the timing of Dan’s death:

  • Dan had recently spent quality time with most of his family. In February, he flew to Virginia to visit his father. Not long after that, he and I took the campervan south for a wonderful, relaxing trip to Florida, stopping to visit our oldest son in Nashville on the way down and back. We aren’t left with many “I wish we had spent more time together” regrets.

  • I have a part-time job writing articles for an addiction treatment network. One of my topic assignments for the week before Dan died was on coping with the death of a loved one.

  • One of Dan’s favorite things to do was to sing with and occasionally direct a group of fellow music ministers. Two days before his death, he sang with them and directed the songs “When the Roll is Called up Yonder” and “I’m Bound for the Promised Land.”

  • On the morning of the day Dan died, he used his laptop to pull up a clip about heaven and near-death experiences he had been sent. Then he, our youngest son, and I had a nice conversation about heaven just a few hours before he got to see it for himself.

  • Dan’s heart attack took place while he was driving us around a state park. We had been on the highway for quite a while before we reached the park grounds. The circumstances of his death would have surely been much worse had we still been on the highway.

  • When I saw Dan was in trouble, I flagged down people in the area and someone who knew CPR appeared immediately and kept working until the ambulance arrived. It wasn’t possible to revive him, but I’m not left wondering whether it would have been.

  • A Christian family was among those in the area who came to help. When I said I wanted to pray, they prayed with me. I never felt alone.

  • Dan died on a Saturday. Sunday’s sermon topic, which had been prepared in advance, was “I am a Citizen of Heaven.”

  • The weather has been cooperative. My chemical sensitivities make it extremely difficult to be inside most public places. Amazingly we were able to find a funeral home with a patio, so during the visitation, I was able to be outside, where people could join me as they wished. We held the funeral service at the graveside. If the weather hadn’t been warm enough, it’s hard to imagine how I could have been part of the final goodbyes.

  • After his graduation from college, my youngest son traveled to Africa for a while. He returned to the states in December and has been living with us while he looks for a job. The fact that he’s here now is huge.

I’m glad I didn’t know when I married Dan that he would die in his 50s, but if I had known, I would have married him anyway. We had 30 precious years together. As do all couples, we had our disagreements and times of tension, but I never doubted we would work them out and I never wondered about his commitment to me. He took his wedding vows seriously and he cherished me in sickness and in health. I’ve thought several times since his death that there’s more than one way to lose a spouse. Many people with chronic illness are abandoned and deserted by their husbands or wives. Mine was faithful until death and I’m deeply and truly grateful.

My wise sister talks about living in the “tension of the and,” meaning that two apparently contradictory things can both be true. The day after Dan died I opened the curtains to see a robin sitting in a dusting of snow and it seemed like an appropriate allegory. It was winter and it was spring. I know the future holds both pain and peace, fear and faith, loneliness and love.

More than once in my life, I’ve taken a step back and re-examined my theology of suffering. I’ve done the “what ifs.”  I believe it was author Sheldon Vanauken who said that he tried to give up his faith and found that he couldn’t – that it was like moving a stone that was too heavy for him. I’ve personally thought of unbelief as a garment. I tried it on and found that it didn’t fit. I wrestle and I question and I rage against the circumstances of life, but I always come back to faith that God is still in control and still working things out for the ultimate good of his children.

I don’t know what the future holds. There are many unanswered questions and I have to fight the temptation to panic. One thing I don’t worry about, however, is whether or not my husband’s spirit lives or whether he is with the Lord. He knew and loved Jesus Christ. He was ready to meet him. If you’re not sure that you’re ready, I urge to you read this page at the website gotquestions.org.

It’s interesting to me that death feels so unnatural, despite the fact that everyone on earth experiences it. We weren’t created for time and death. We were created for eternity. My husband’s earthly body is now uninhabited, but he lives and I’ll see him again. In the meantime, life is going to be even more challenging than it already was. Please pray for me and my sons.

Monday, February 24, 2014

Our Sensitive Sons

The common belief within the toxic illness community seems to be that women are more likely than men to develop the condition. This belief is reinforced by the fact that online support groups appear to have a greater percentage of female than male participants. I was somewhat surprised, then, to read an article this week that detailed ways in which boys may be more vulnerable to environmental pollutants than their female counterparts are.

The article, published in Environmental Health News, makes the following points:

  • There’s a stronger link between air pollution and autism in boys.

  • The insecticide chlorpyrifos, found in Dursban and other products, seems to reduce the IQs of boys more than girls.

  • Boys are more susceptible to damage from low-level lead exposure.

  • Phthalates, found in vinyl and many other products, have been linked to larger behavioral changes, primarily aggression and attention disorders, in boys
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  • A study found that high in-utero exposure to Bisphenol A (BPA), another ubiquitous chemical, caused hyperactivity, aggression, and anxiety in boys, but not girls. The boys were also born with lower thyroid hormones, while female levels were normal.

The author explains the findings by noting that the pre-birth development of a female is simpler than that of a male. It takes a greater number of cell divisions to make a male, and with each division comes a greater vulnerability to toxic exposures.

After birth, these vulnerabilities continue. In females, the XX chromosome offers a bit of back-up protection, with a healthy X able to take over for one with a genetic defect. Males, with their XY makeup, have no such backup system. The article also notes that X chromosomes carry more genetic information, so the XY combination may mean a loss of brain development proteins or repair mechanisms.

In addition, estrogen protects the brain. Their lower estrogen levels mean that male brains are more fragile and prone to injury. Hormone imbalances may contribute to a wide range of chemical-related health effects, because many chemicals are endocrine disruptors which suppress or mimic hormones.

If it’s true that the common belief is that women are more vulnerable to chemical illness and the truth is the opposite, why is that?  Perhaps it’s because we still have a lot to learn as a culture about all the possible symptoms that toxic exposures can cause. There will always be differences between boys and girls, but maybe some of the “natural boy” traits we’ve assigned to the gender, such as aggression, hyperactivity, and lack of focus, aren’t entirely natural after all.

Sunday, February 16, 2014

Brain Drain

In 2006, physicians associated with the Harvard School of Public Health and Mount Sinai hospital authored an article linking common chemicals to neurodevelopmental disorders in children. Although they noted that hundreds of chemicals are known to have neurotoxic effects, they singled out five chemicals of special concern for developing brains. Last week, in an article published in the journal Lancet Neurology, authors Philippe Grandjean and Philip Landrigan added six more chemicals to the list.

Key points from the study and reports of it by Forbes and CNN include the following:

  • Young and pre-born children are especially sensitive to the effects of neurotoxins. Effects include autism and lowered IQ. Landrigan notes, "Beyond IQ, we're talking about behavior problems -- shortening of attention span, increased risk of ADHD. We're talking about emotional problems, less impulse control, (being) more likely to make bad decisions, get into trouble, be dyslexic and drop out of school. ... These are problems that are established early, but travel through childhood, adolescence, even into adult life."

  • The chemicals are known to cross the blood brain barrier. When this happens to children with developing brains the effects are permanent.

  • Chemicals of concern include pesticides, solvents, flame retardants, and more. The authors note that at least 1,000 chemicals have demonstrated an ability to interfere with brain function in animal studies. Landrigan adds, "We are very worried that there are a number of other chemicals out there in consumer products that we all contact every day that have the potential to damage the developing brain, but have never been safety tested.” Grandjean notes, "We are not just talking about single chemicals anymore. We are talking about chemicals in general."

  • The authors call for testing of all chemicals. Landrigan notes that the problem is not one of capability, but of political will.
  
The Safe Chemicals Act continues to languish in Washington. Other countries have taken action. In 2007, the European Union enacted REACH (Registration, Evaluation, Authorisation and Restriction of Chemicals). Landrigan remarks, "I find it very irritating some of the multinational manufacturers are now marketing products in Europe and the U.S. with the same brand name and same label, but in Europe (they) are free of toxic chemicals and in the U.S. they contain toxic chemicals."

Yep. I too, find it irritating.  The words infuriating and ridiculous also come to mind.  If the brain health of our most vulnerable doesn't move us to action, I'm not sure what will.

Monday, February 10, 2014

Why Christians Should Care About Chemicals

Does God care about the issue of chemical toxins in common products?  I believe the answer is an unequivocal “yes.”  I also firmly believe he wants us to care about it, too. Here’s why:

1. God created us with physical bodies. Psalm 139:13-14 says, “You made all the delicate, inner parts of my body and knit me together in my mother’s womb. . . . Your workmanship is marvelous.”  God could have created us as disembodied spirits, but he chose to house our spirits in intricately designed physical forms.
 
2. God pays attention to the state of our bodies. He knows us so completely and cares about our minds, souls, and bodies so deeply that he is aware of how many hairs are on each person’s head (Matthew 10:30). We are told in 1 Corinthians 6:13 that “our bodies . . . were made for the Lord, and the Lord cares about our bodies.”

3. Our bodies don’t belong to us. 1 Corinthians 6:19-20 says, “Don’t you realize that your body is the temple of the Holy Spirit, who lives in you and was given to you by God? You do not belong to yourself, for God bought you with a high price. So you must honor God with your body.”  Verse 15 says, “Don’t you realize that your bodies are actually parts of Christ? “

4. Because God owns our bodies, they are to be used to honor and glorify him. We are called to be living sacrifices (Romans 12:1), presenting our bodies to God for his use.

5. Being good stewards of our physical forms means doing our best to keep them healthy and functioning well. God can and does work through people with broken bodies, but that doesn’t negate our responsibility to faithfully manage the physical resources we’ve been given. The Bible instructs us on many aspects of physical health, including diet, drinking, overeating, and the importance of rest.

6. The Bible also addresses the issue of toxins. Although the man-made chemicals that saturate our present-day world didn’t exist in Biblical times, the Bible gives us some important clues on how to deal with them when it discusses household mold. Mold can produce mycotoxins, which can affect the body in much the same way that chemical toxins can. In Leviticus 14, God gave the Israelites detailed instructions on how to proceed when they found mold in a home. The instructions included scraping walls and removing affected stones, then tearing down the house if the mold continued to spread. The instruction wasn’t to expect or pray for protection from the toxin. The instruction was to go to great lengths to avoid it.

7. We are called not just to care for our own bodies, but to care for others, as well. No one can process an unlimited amount of toxic material, but there are differences, due to age, size, genetics, nutritional status, and other factors that affect how efficiently any given body can detoxify any given chemical. A product that doesn’t produce obvious symptoms in one person can cause another great suffering. Avoiding toxins is not just for our own sakes, but for the sake of those who share the air. Galatians 5:13-14 says, “For you have been called to live in freedom, my brothers and sisters. But don’t use your freedom to satisfy your sinful nature. Instead, use your freedom to serve one another in love. For the whole law can be summed up in this one command: ‘Love your neighbor as yourself.’” Philippians 2:4 says, “Everyone should look out not only for his own interests, but also for the interests of others.”

8. The use of toxic products can prevent people from hearing the gospel, participating in Christian fellowship, or using their gifts within the context of a church body. Chemicals can contaminate schools, workplaces, stores, medical buildings, and any other public place. When they contaminate a church building, however, there may be serious spiritual ramifications. When people have reactions to building, cleaning, personal care or other products used in a church building or on the bodies, clothes, and hair of other people there, they are likely to look for fellowship and spiritual food elsewhere. Likewise, toxic products used within a home limit the degree to which it can be used for hospitality and ministry.

Life is busy, and the world is full of both important and not-so-important things that claim our attention. It’s impossible to focus on everything. I do believe, however, that choosing whether or not to use toxic products is a foundational issue. Lack of health limits the extent to which we can fully address other important needs, and causing others unnecessary suffering just isn’t acceptable. We should care about this.

Tuesday, January 21, 2014

Flame Retardants

I’m not keeping up with this blog very well lately, due in part to the fact that I’m spending a lot of time putting our garage back together after a fire we had in October. It seems appropriate that when I pull myself away from that task it’s to write about flame retardants. Like so many chemicals before them, they are an example of a good idea gone very wrong.

The History

The widespread use of chemical flame retardants began in 1975, when the state of California adopted a law requiring children’s products and “seating furninture” (couches, loveseats and chairs) to meet certain flammability standards. Fill material in furniture was required to withstand a small flame for at least twelve seconds. In order to comply with the law, manufacturers began adding chemicals, mostly those known as Polybrominated Diphenyl Ethers (“PDBEs”) to their products. A typical sofa can contain up to two pounds of chemical flame retardants.

Because California is so large, manufacturers who don’t wish to be shut out of California’s market often change their entire product lines in order to meet California’s requirements. This was the case with fire standards. Most furniture and children’s products in the U.S. are manufactured to meet California’s requirements and contain large amounts of PDBEs or similar chemicals. Flame retardants can also be found in electronics, insulation, carpet padding, children’s clothing, automobiles, crib mattresses, adult mattresses manufactured before 2007, and other products.

The Problem

Unfortunately, chemical fire retardants have been linked to a wide range of negative health and environmental  effects. The Environmental Protection Agency notes that PDBEs may be “persistent, bioaccumulative, and toxic to both humans and the environment.”  They note that since they are not chemically bound to the products in which they are used, they may easily migrate from them.

The problem of PDBEs leaching from products means that the chemicals accumulate in the home environment. Duke University reports on research showing that the concentration of flame retardants in household dust is as concentrated as that found in sewage sludge. Flame retardants can be found in the blood of virtually every American, in much higher levels than found in residents of other countries. Children often have higher levels than do adults. The Environmental Working Group notes that a 2008 study found levels of fire retardants in children’s blood to be three times higher than those of their mothers.

PBDEs are chemically similar to thyroid hormones and can mimic them in the human body. Thyroid hormones are important for brain development and metabolism and many of the health problems associated with flame retardants relate to these areas. Human and animal studies have found the following health problems associated with PDBEs and other chemical flame retardants:

  • Decreased IQ
  • Poor attention
  • Hyperactivity
  • Memory problems
  • Impaired fine-motor control
  • Weight gain
  • Anxiety
  • Thyroid abnormalities
  • Early Puberty
  • Abnormal reproductive cycles
  • Reduced fertility
  • Lower birth weight
  • Birth defects
  • DNA mutation
  • Increased cancer risk
  • Increased diabetes risk

Because house pets share the home environment, they are as affected by chemicals in the home as human residents are. Seattle’s KOMO News reports that flame retardants may be killing cats. The article notes that in recent decades, millions of indoor cats have developed hyperthyroidism, which is often fatal, and that “significant association” has been found between the illness and flame retardants.

Small Victories

There’s a small bit of good news. Recently, California has changed the way in which flammability is measured. The 12-second flame test has been replaced by a “smolder” test, based on one proposed by the American Society for Testing and Materials. It should be easier for manufacturers to meet the new requirements without using flame retardants. They will still be allowed to use the chemicals, but the hope is that increasing numbers will choose not to do so.

Although the original law was undoubtedly well-intentioned, there is little data to indicate that flame retardants have significantly reduced fire risk. Treated products still burn, and the smoke they produce when they do may be highly toxic. Many firefighters have joined the campaign to reduce flame retardant use because of the dangers associated with inhaling chemical-laden smoke. The Centers for Disease Control notes that firefighters have significantly higher rates of many types of cancer.

How to Reduce Your Exposure

Flame retardants are difficult to avoid, but there are steps people can take to reduce their exposure, including the following:

  • Avoid products made with polyurethane foam when possible. Generally fillings made of down, wool, or polyester are not treated with flame retardants.

  • Minimize your exposure to household dust. This can mean cleaning with a damp rag or mop to avoid spreading dust, using air purifiers and vacuums with HEPA filters, and replacing carpet with hard surface flooring.

  • Wash hands often, especially before eating. The Duke study noted that the amount of flame retardant on toddlers’ hands was a good predictor of the levels in their blood, suggesting that hand to mouth may be the biggest exposure pathway.

  • Watch what you drink. Oddly enough, brominated vegetable oil (BVO), which is commonly found in sports drinks and citrus sodas, was patented as a flame retardant. Many researchers are concerned that the brominated oil may have the same effects as other brominated chemicals like PBDE. BVO has been banned as a food additive in Japan and the European Union, but is allowed in the US and Canada.

As with other issues of product toxicity, consumers can advocate for change by creating demand for healthier goods. When considering the purchase of new furnishings or other products, it can be helpful to call or write the manufacturer to ask about the use of flame retardants. If we care about the issue, manufacturers need to know.