Thursday, December 21, 2017

No Place for Them

I’ve identified with Mary and Joseph in a variety of ways throughout the years. Four times in my life I moved during the Christmas season, and in one late December I gave birth to a ten pound baby. (I was GREAT with child.) More recently, the part of the nativity story that resonates most deeply with me is the fact that the couple were shut out of their desired place of rest. Luke 2:7 tells us that “there was no place for them.” (ESV)

There was no place for them. There doesn’t appear to be a place for me, either, or for others like me, who suffer with chemical illness. Where do we shop?  How do we access medical care?  How can we be part of a church community?  We knock on doors and are turned away again and again.

Earlier this year, an online friend put together a survey about church experiences. Although it was open to anyone, it was widely circulated among people with chemical sensitivities, and many of the responses reflect that. Of the people who said it was difficult for them to attend church, 78% mentioned fragrance and chemical exposures as significant barriers. Many people also mentioned mold, and some mentioned electromagnetic fields. There’s plenty to say about the survey, but I think I’ll just let people speak for themselves.

Encouragingly, the news wasn’t all bad. There were a few notable and hopeful success stories. Respondents said this about their churches:

They avoid cleaning the room where our low fragrance Bible study meets on our meeting day.

They made a section designated for people who are sensitive to fragrances. Although, it did not work for everyone since people have different levels of sensitivity.

They have posted a notice in the bulletin.

The congregation uses fragrance-free soaps and cleaning products. So glad I can attend. Had to quit for three years when our former church was too perfumy.

My favorite two responses, by far, were these:

We are made to feel welcome and treated like all the other members. We know we are very blessed to attend such a kind and caring church! Our church board wanted to know about our chemical sensitivities and asked what they could do to help us be able to attend. Then they did it!

Our church, though poor, renovated the building to provide a safe room with MCS safe materials and filtration that will allow any MCS folk to attend.

As hopeful as those responses are, they don’t reflect the experience of the majority of respondents. The person who shared one of the success stories added this:

P. S. Our former church did NOT treat us with respect. They always treated us like we were a bother and sprayed the church with pesticide behind our back. (Of course, our bodies knew.)  This church cared more about its "public image" than it did the health of its members.

Here’s a sampling of typical experiences.

I have requested a roped off area where it would be a perfume free zone. The pastor promised to look into it, but after that wouldn't return my calls.

I asked for help several times, and got poor response.

I was brought communion twice, but since then nothing.

They don't return my emails or phone calls. Nobody ever called to see why we stopped coming or offered to visit me at home either.

The church as an entity has been rather unaccommodating, refusing to change cleaning products or ask members to forego fragrance for services.

They put me on a prayer list in the bulletin. Then after learning of my details, they forgot me.

A few people pray for me when asked. I have no access to fellowship or bible study of any kind.           

Since I got sick and cannot attend we cannot get them to return emails or phone calls.

The church for a while had "fragrance free" labels for the first two rows. They didn't continue it for long.

Virtually no access is provided to me from any local churches.

Many people mentioned how involved they had once been.

The isolation after being a very active volunteer is bizarre. To think I once participated in volunteer services 4-6 days a week, tithed 10% and promised 10% for church development costs, to be forgotten. My children question my faith. The church never hesitated to ask for my service but once I became disabled, I'm out. I will continue to remind my kids that the Lord has not forgotten me. That he is not the church.

Others mentioned how much they would still like to be involved.

My best fellowship in the past has been in home Bible studies, meeting in someone else's relatively low toxic home. In the past I have taught those, and I really miss that now. But how am I supposed to find other women who need a fragrance free Bible study/prayer group when neither they nor I can come to church?

Anger and hurt came through in many of the responses. 

I have never come to terms with not being able to attend church or the total lack of understanding or concern. I was taught you should never do anything that would prevent someone else from coming to church and I feel that wearing fragrance falls into this category.

I'm disheartened that the only thing keeping me out of church are the fragrances of people and cleaners. There are so many fragrance-free cleaners and soaps on the market. And I don't understand why people can't leave off their scents just one day a week so another believer could have access to church. It seems so selfish and uncaring that folks would rather keep me from church than to give up fragrance for three hours a week.

There is a huge population group that is unchurched simply because the people in the church deem their right to wear perfume/cologne more important than for others to be able to fellowship. It's very sad how selfish the church can be.

I'd like my beloved (now former) church board to encourage listening and learning about things they don't understand rather than dismissing them as "unbelievable" or "made up." Chemical injury is real. And it's not that rare.

Sometimes people just give up.

We know we're a challenge so generally we just disappear.

I am no longer interested in church.

Others still long to be part of a church and long to see churches take leadership on toxicity issues. Here’s what people have to say:

[We] desperately want church access and fellowship.

Fragrance and cleaning chemicals are everywhere. There must be a better way.

The church could do a wonderful service by educating their members.

I would ask that churches all over the world would educate members about chemical sensitivities so that people with MCS could attend without suffering consequences.

The MCS life is hard. We need support and Christian fellowship. Please hear us.  Please see us. Please make a place for us.  

Monday, October 30, 2017

Millennials, Chemicals, and Church Attendance

I’m not a millennial and I don’t play one on TV. (The fact that I used that reference and actually remember where it came from is proof, if you needed any.)  I often read articles about millennials, though, partly just out of general curiosity and partly because I have a couple of sons in that age group. Lately there seem to be a lot of articles about things millennials aren’t buying or using. If you type “millennials don’t use” into the Google search bar, suggested endings to the sentence include “doorbells,” “credit cards,” “napkins,” “email” and “fabric softener.” 

In part I read what I can about millennials because I’ve been trying to figure out whether our society is making progress in understanding the enormous problem of toxins in common products. Is the younger generation more aware of the issue and more likely to make changes?  Sometimes I think so and sometimes I don’t. The decline in the use of fabric softeners, for instance, has been seen by some as a sign that millennials prefer to use fewer chemicals. Others say it’s simply related to economics and lifestyle. There are confusing trends. While fabric softener use is declining, the use of “scent beads” in the laundry is increasing, which is certainly unfortunate.

One widely publicized fact about millennials is that they’re much less likely than previous generations to attend church. There are certainly plenty of theories about why that is. I tend to pay most attention to the articles written by millennials themselves, and one in particular got my attention.

It’s titled "12 Reasons Millennials Are Over Church” and what made me sit up and take notice is reason number nine. The author writes,  "We want you to talk to us about controversial issues (because no one is). People in their 20’s and 30’s are making the biggest decisions of their entire lives: career, education, relationships, marriage, sex, finances, children, purpose, chemicals, body image. We need someone consistently speaking truth into every single one of those areas.”  Did you catch that?  “Chemicals” was on the list. The author says, in essence, that one of the reasons people from his generation are leaving the church is because no one is speaking truth to them about chemicals. Wow.

There's a truth about chemicals that needs to be spoken. The truth is that there aren’t sufficient regulations in the United States to keep unsafe products off the market or to remove those already being sold, and the implications for human health are staggering. Health advocates continue to wage a David and Goliath battle against well-funded industry interests in an attempt to introduce meaningful legislative change, but as it now stands, we must each take responsibility for educating ourselves and acting on what we learn. I believe with all my heart that the people of God have a responsibility to confront this issue and to be the ones who demonstrate that we value human beings enough to be counter-cultural in the products we buy and use.

How about it, friends?  Can we open our eyes to the importance of this?  Can our churches start with easy steps like removing synthetically scented air fresheners, switching to fragrance-free soaps, and using less toxic cleaning products?  Can we get to the point where we think about toxicity when we build or renovate?  This is an issue of health — not just the physical health of humans made in the image of God, but the spiritual health of a generation that is watching us for signs of leadership and courage. We can do it. Let’s start now.

Saturday, July 15, 2017

Justified and Vindicated

I’ve been studying the book of Romans with some friends, which has brought to mind the word “justify” and its various definitions. Theologically, the word means to be declared righteous before God. The mnemonic device I learned growing up was that being justified made it “just as if I” never sinned. I remember once looking at the keyboard on a digital typewriter (in pre-computer days) and seeing the “right justify” key, which would line up the text with the margin of the page. It struck me that what Jesus did for me was similar. My own righteousness couldn’t reach God’s standard, like unjustified text couldn’t reach the margin. I realized that Jesus was my “justify” key and that he could take what I offered him and fill in the gaps, so to speak, to make it line up with the standard of holiness I could never reach on my own. It’s not a perfect analogy, but it helped me appreciate being justified.

Ironically, the common usage of the word “justify” is almost the opposite of the theological one. Theologically speaking, justification starts with the truth that no one is fully righteous. In everyday usage, however, being justified involves a person being unjustly accused or doubted, then being shown to be in the right.

I find I need both kinds of justification. I’m certainly a sinner in need of great grace. I also find, however, that in specific situations, I long for someone to step in and defend me. In my last post, I asked God to vindicate me, which is a similar concept. Someone asked what I meant and I had trouble articulating it well. This is my attempt at a fuller answer.

I've learned that I feel beaten down, not only by things that people say directly to me, but things that people say about others with whom I identify. I suspect that we all have this tendency to some extent, but maybe some of us are more sensitive to it than others. Take, for example, what people say about other widows. Recently, within the span of a few days, I heard two different people make offhanded comments about widows they knew. The first commented that one seemed to be having a hard time. (Note to self – don’t share with anyone when you’re grieving). The second person commented that she was afraid another widow was too stoic and not allowing herself to mourn. (Note to self – make sure to share with everyone when you’re grieving.) 

A few days after I heard those comments I ran across a blog post by a widow defending a widower who had recently announced his engagement. (Don’t read it if it will bother you that the post contains both a Bible verse and the phrase “dear ignorant, judgmental a**holes.”)  The writer’s palpable anger, which was echoed in hundreds and hundreds of comments, reinforced the truth that when you attack one of us in this widowhood club, it feels like an attack on all of us.

The chronic illness club is another one I find myself a member of, and negative judgments about people who are ill pour down like rain. The list of accusations feels almost endless: people have made themselves sick, they remain sick because they are afraid or don’t really want to get well, they use their illnesses to manipulate people, they exaggerate their symptoms, they aren’t trying hard enough to heal, they aren’t smart enough to know the right treatments, and on and on it goes. In the Christian world other messages get piled on: they aren’t praying enough, they don’t have enough faith, they’re being punished for sin, they’ve let Satan gain a foothold in their life. There are also accusations that are specific to given conditions. People with chemical sensitivities are often freely ridiculed and maligned for things like wearing masks to protect themselves or asking for accommodations. Yesterday I read an article that used the word “tyrants” when referring to us.

I feel very grateful to live in the digital age, when information and connection is so easy to access. There’s some information, however, that I’m not sure I want to know. Blog and social media posts, along with their associated comments, pull back the curtain of denial and paint a stark and depressing picture of how judgmental and accusatory we all tend to be. I’m not saying anything new when I note how easy it is to type things online we would never say to someone’s face or in the physical presence of bystanders who might be sensitive to the message. I read things every day that make me sad and angry, and I don’t know what to do with those emotions. Sometimes people do say accusatory things directly to me, which is painful, but at least gives me the option of response. But what do I do with the anger I feel at the accusations of countless unnamed fellow humans who all seem to have an opinion about widows, women, those with low incomes, Christians, people over 50 and the chronically ill?

It’s easy to say that it doesn’t matter what other people think. There’s certainly some truth in that. At the end of the day, only God’s opinion really counts. But caring what people think also serves a certain purpose in society, helping people understand norms and promoting cohesion. It’s a natural human behavior. Biblical writers, especially psalmists, asked for vindication or justification frequently. Here are a few examples, taken from a variety of translations:

Psalm 7:8b – “Declare me righteous, O LORD, for I am innocent, O Most High!”

Psalm 26:1 – “Vindicate me, O LORD, for I have walked in my integrity, and I have trusted in the LORD without wavering.”

Psalm 35:24 – “Declare me not guilty, O LORD my God, for you give justice. Don't let my enemies laugh about me in my troubles.”

Psalm 43:1 – “Declare me innocent, O God! Defend me against these ungodly people. Rescue me from these unjust liars.”

Psalm 82:3b – “Vindicate the oppressed and suffering.” (Another translation says “Justify the poor and the meek.”)

I believe that my anger is justified (there’s that word again), but it doesn’t feel especially helpful. As I work through this issue and try to process my feelings, I’ve found solace not only in realizing that Biblical writers shared the same desire to be defended from unfair judgments, but that God promises to do just that. This is my hope:

Isaiah 50:7-9a – Because the Sovereign Lord helps me, I will not be disgraced. Therefore, I have set my face like a stone, determined to do his will. And I know that I will not be put to shame. He who gives me justice is near. Who will dare to bring charges against me now? Where are my accusers? Let them appear! See, the Sovereign Lord is on my side! Who will declare me guilty?

Monday, May 22, 2017

A Psalm of Lament

I've tried to hold the world for countless years
Assume its pain and take its blows
Punched, bruised, knocked face down
I spit out rocks and teeth
Mud caked and bleeding, I crawl back to you, my God

You ask much
From your servants
You ask much
I've been faithful
Pouring myself out
Until only drops remain

Isn't enough enough?
Hasn't the time arrived for healing and relief?
I wait
I wait
I wait

I wait my turn as those who've never tasted suffering skip around me
They glance my direction, fling accusations
Then dart away

Vindicate your child, my Lord
Vindicate and heal
Pull me from the dirt into your lap
Let me rest there as you set the world in order

I cannot hold the world
Not even my own
My hands are far too small
Teach me what to hold and what to free
Help me be faithful in a world that's just too big
A world that, like a child in pain, fights back

You, oh Mighty Creator, dwarf the world you made
Your majesty envelops and overwhelms
You hold it all
Nothing will slip away

You hold me and I am secure
You encourage and teach
Comfort and restore
You see the blows, wash my wounds, and share my tears

The waiting will one day be forgotten
You will set the world in order
You will vindicate and heal

Until that day
I will always crawl back to you


Thursday, May 4, 2017

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."

Wednesday, March 15, 2017

From my Heart to Yours

On this date three years ago, my husband's heart stopped beating. He was in his 50s, seemingly healthy and robust, and most people were genuinely shocked at his death. I didn't wake up that March morning believing that my husband would die that day, but in a general sense I was less shocked than many others seemed to be. That was partly due to life experiences (my mother died when I was young, so I grew up understanding the unpredictability of death) and partly due to understanding some of his risk factors. 

I'm going to mark this anniversary by writing about heart disease and talking about some lesser known causes. At some point I'm going to talk about a risk factor or two that I wish Dan would have taken more seriously. I imagine that last sentence put some of you on edge. Believe me, I spent a lot of time debating whether or not to write this post, but I decided to do so for multiple reasons, including that I'd like to think that Dan would want me to. 

Heart disease is the leading cause of death in the United States. The Centers for Disease Control notes that it causes one out of every four American deaths. Risk factors listed by the CDC include high blood pressure, high cholesterol, smoking, diabetes, excess weight, poor diet, physical inactivity, and excessive alcohol use. I believe these are fairly well known by the general population. There are many other risk factors, however, that are less understood.

This is by no means an exhaustive list, but some of the lesser known contributors to heart disease include the following: 
Air pollution - Air pollution is a broad term, but in general, fine particulates in the air, such as from industrial and traffic fumes, are associated with higher rates of heart disease. The American Heart Association reports research showing increases in death and hospitalizations when there are higher rates of smog. ABC News reports on a study finding that being stuck in traffic more than triples the risk of having a heart attack. 
Non-stick chemicals - As I've noted many times, chemicals in our consumer products are generally not tested for safety, so the health effects often remain unknown. Some, however, have been linked to heart disease, including a family of chemicals used in products such as non-stick pans and stain resistant coatings. A 2012 study found that people who had the highest rates of the chemical PFOA in their blood were twice as likely to experience heart disease, heart attack, or stroke as those with the lowest levels. Because of the bad press, PFOA is being replaced by other similar chemicals, but many health experts warn that there is no reason to believe that the newer versions are any less problematic.
Chemicals found in food and beverage containers - A 2014 study in the International Journal of Environmental Research and Public Health concluded that the chemical BPA, found in many places, including plastic bottles and in the lining of food cans, was associated with heart disease in both acute and chronic low-dose exposure situations. As with PFOA, the bad press about BPA has led to some changes, but a 2016 study found it present in 67% of cans tested. 
Heavy metalsUniversity Health News reports that researchers have implicated at least four heavy metals associated with clogging arteries: lead, mercury, cadmium, and arsenic.  
Mold and other toxins found in water damaged buildings - Water damaged buildings, or those with high indoor humidity levels, tend to be breeding grounds for a multitude of  organisms, including a wide variety of fungi and bacteria.  Exposure can lead to chronic inflammation, which can contribute to heart disease. A study in the Internet Journal of Toxicology found an association between exposure to molds in damp buildings and high cholesterol levels.
Sleep apnea - The American Heart Association notes that sleep apnea is associated with high blood pressure, arrhythmia, stroke, and heart failure. I'm almost certain that Dan had sleep apnea, and I wish I had been successful at convincing him to get tested.
Sugar consumption - This is the big one that I worried about for years. Dr. Mark Hyman's summary of the research notes that people with the highest sugar consumption have a 400% higher risk of experiencing a heart attack than those who consume the least. Sugar (in all its various forms) is not just a problem because of its "empty calories," adding to weight without contributing nutrition, but because it is inflammatory and dangerous in and of itself.  
Americans eat a lot of sugar, and the amount continues to climb. A Huffington Post article reports that the American Heart Association recommends that women cap their consumption at six teaspoons a day and men at nine, but that the average American consumes 30 teaspoons daily. There are a number of reasons for this. One is simply that American food manufacturers sweeten almost everything. I remember returning to the United States after living overseas and being astonished to find sugar in canned kidney beans. Dr. Hyman notes, "Most of us don’t know that a serving of tomato sauce has more sugar than a serving of Oreo cookies, or that fruit yogurt has more sugar than a Coke, or that most breakfast cereals — even those made with whole grain — are 75% sugar. That’s not breakfast, it’s dessert!"
Americans also eat a lot of sugar because we're addicted to it. I don't use that term lightly. Sugar affects the same reward centers of the brain that other drugs do, and produces tolerance in the same manner. People find themselves needing more and more of it to satisfy their sweet tooth and may experience withdrawal symptoms when they don't consume it at regular intervals. To quote Dr. Hyman again, " Recent and mounting scientific evidence clearly proves that sugar — and flour, which raises blood sugar even more than table sugar — is biologically addictive. In fact, it’s as much as eight times more addictive than cocaine."  A 2007 rodent study reported that 94% of the animals chose sugar (or an artificial sweetener) over cocaine when given the choice.  
Drug abuse is a serious and growing personal and societal problem that I don't want to trivialize in any way.  An Associated Press article reports that almost 13,000 people died of a heroin overdose in 2015 and prescription painkillers killed over 17,500 people.  A  2015 LA Times story reports another serious statistic: sugary drinks are linked to 25,000 deaths in the United States each year.  
It seems likely that many, if not most Americans are addicted to sugar to some degree. I believe I was, until my health forced me to radically change my diet. I believe Dan was. We talked about it some through the years, and he never quite denied it, but he never quite addressed it, either. About a year before he died, he developed a persistent itchy rash that doctors had trouble diagnosing. At some point I sent him an article which suggested giving up sugar for two weeks in the case of mystery skin ailments. Not long afterwards, he remarked to me that he had decided that he wouldn't cut sugar out completely, but that maybe he would try to cut down.
I remember that conversation clearly. Dan was itchy and miserable, but not fully willing, for a a brief two weeks, to trade sugar for the  possibility of relief. The basic definition of addiction is continuing to engage in a behavior despite negative consequences, and I remember feeling a wave of deep sadness and thinking, "This is a strong addiction. It could kill him."  I thought there was a good possibility that his heart would cause him major problems some day, but I didn't know how soon the day would come. I think my vague thought of what might happen was that he might have a heart attack in his 60s, and that, if we were lucky, he would live through it and then maybe get serious about changing his diet. 
Obviously, I don't know that sugar consumption had anything to do with Dan's sudden death. He had plenty of other risk factors, including genetic ones, and had a period of high work stress in the time period before he died, which could well have been the final straw. I'm also certainly not unaware that my own health limitations added a significant degree of stress to Dan's life. (On the flip side, I think my need to live a low-toxicity life was protective for him in some ways, as well.)  I can't point to sugar and say that I know it killed my husband, but the research is clear that it is, in fact, a killer.

I'm very sensitive to "blame the victim" messages and absolutely don't want this to come across that way. This isn't blaming, but warning. It's remembering the events of this day three years ago and deeply and sincerely wanting to spare other people a similar experience. Sometimes people take things more seriously when they know people who have been affected, which is my sole motivation for sharing personal stories.

As I was debating whether or not to write this post, I ran across Leviticus 5:1which says  "If you are called to testify about something you have seen or that you know about, it is sinful to refuse to testify." Yes, it's Old Testament and no, it wasn't written about blog posts, but it convinced me. What I can offer the world these days is limited, but I can testify about things I have seen and know about.

I imagine I've made a lot of people mad by this point. To those who are mad because they loved Dan and are angry that I wrote some negative things about him, I'll simply say that I loved him, too, and miss him greatly. I've cried every day this month so far. I'll also remind you that I wrote a very different sort of post about him three years ago.

To those who are mad because in addition to harping about chemicals, I'm now harping about a very prevalent food choice which is a source of comfort and pleasure, I'll simply say that I get it. Those of us who became addicted to sugar were simply eating the standard American diet or found ourselves eating more sugar because we were avoiding fat and dietary cholesterol like the experts recommended. The sugar industry manipulated studies and public policy just like the chemical industry does today.  It's easy to understand how we ended up in this place, but now that we're here, it's time to accept that there are real consequences.

I write because I care about you. Whether I know you personally or not, you matter to me simply because you've taken the time to read this post. I know other people care about you, too, and we all want your heart to keep beating for a very long time.

Monday, March 6, 2017

Notes from a Webcast Watcher

My health has kept me from attending church for more than a decade and a half now. Over that time I unfortunately haven’t seen much progress in churches addressing toxicity issues. One way in which things have improved, however, is that a greater number of churches are now streaming their services, which, although it certainly isn’t a substitute for attending in person, is a great blessing for those of us who can’t access corporate worship services otherwise. There are enough churches webcasting on Sunday mornings these days that I thought it might be helpful, as someone who watches regularly, to give a bit of feedback on what I most appreciate.

The best place to begin this list is with a genuine expression of gratitude to all churches who’ve made the decision to stream their services and all the individuals who make it happen from week to week. It’s very much appreciated. Online sermon archives are helpful and good, but I personally find the ability to watch a live service exponentially more emotionally satisfying. I feel less excluded and more an actual part of the congregation. When I was able to watch the same church my family members attended, we shared a common experience, at least to a degree, and were able to discuss the service over lunch. Thank you for the effort, webcasting churches everywhere. That said, here are some suggestions for optimizing the experience.

1. Identify your audience. Who are you hoping to serve? Is the stream primarily for regular church members who are unable to attend now and then? Is it for people checking out your church before visiting in person? How about folks outside of your geographic location? Your answer to these questions will determine how you handle other issues.

2. If the stream is for people other than church members, make it as easy as possible for them to know that you webcast your services and when and how to access them. I personally haven’t found any sort of central database, at least for the geographical areas I’ve searched. It would be helpful for denominational and interfaith organizations to compile and post that information.

In my quest to digitally visit as many churches as possible in my new geographical area, I’ve spent much more time than anticipated simply trying to identify my options. A simple google search for churches in my city that stream their services yielded a handful of helpful results and a lot of unhelpful ones. I also had mixed results searching the Livestream and Ustream sites. There were many dead links, but one church provided their new streaming address, which was helpful. A surprising number of churches didn’t provide their name anywhere in the video description. Some gave initials, which was at least a clue. I know the search results were incomplete, because I’ve watched services from at least one church on Livestream that didn’t appear in the results list. I’m guessing the church didn’t include the city name in their description.

Searching YouTube's "live" page wasn't very successful, and if there's currently a way to search for churches that use Facebook Live to stream their services, I didn't discover it. I was also unable to search the sites of Streamspot, Sunday Streams, ChurchStreaming, or Churchvu.

All that said, since there doesn’t seem to be any sort of comprehensive database, I suggest you make the information about streaming very clear on your website and/or Facebook page. (I’ve been surprised at how many churches apparently still don’t have either one of those things, but I’m assuming that if they don’t, they aren’t streaming, either.)  If you don’t stream every service, clearly indicate which ones are going to be available. If you want to make things easier for online visitors outside your geographical area, it’s helpful to note what time zone you’re in. Sometimes a webcast works better in one browser than another, or doesn’t work well on a mobile device, which is also helpful for potential watchers to know.

3. Monitor the feed to make sure it works consistently and have someone available to address issues as they arise. Over my years of webcast watching, I’ve spent a lot of time trying to decide whether, if a stream has consistent problems, it’s better than nothing, or it’s better for that church just not to try at all. I’ve never quite made up my mind. What I do know is that my frustration level was often very, very high when trying to watch services from a church with ongoing webcast issues. I often felt like Charlie Brown. Charlie kept believing that Lucy would hold the football long enough for him to kick it, despite her habit of yanking it away. I kept believing that the webcast problems were fixed, but they kept recurring. During some of those years, I had a way to communicate during the service that there were problems, but most of the time I didn’t. For those of us who are mostly homebound, watching a church service from home feels a bit like watching through a window because the door to church is locked and we don’t have a key. When the webcast stops working, it’s as if the curtains on the window close. The frustration level is lower when we believe someone has noticed that the window is covered and is working to open the curtains again.

4. If there are ongoing problems, look for patterns. I’ve noticed some churches seem to consistently have problems streaming the music, but not the sermon, and the pattern is reversed for other churches. Perhaps it relates to bandwidth or interference as certain equipment is used. I’ve been trying to watch services from one particular church here in town and have found that there are almost always problems near the end of the sermon. I don’t know why that is, but it’s difficult for me to relax when I tune in because I’m always waiting for the moment when the feed will stop working.

5. Start streaming on time, or, better yet, a little bit before the service actually starts. When I tune in at the projected start time and nothing is happening, I never know whether the church no longer streams its services, there are technical problems that day, or they’re just getting started late. I don’t know whether to bail out and find another service to watch or to stick with the one I’m attempting to access for a while. To compound the problem, I’ve found that for some streaming programs, if I tune in and nothing is happening, the video stream won’t automatically start on my end when the church begins the webcast. It will still show no feed until I refresh the page. That’s a very unfortunate system, especially for watchers who have no way to know they need to keep refreshing if they want to know when the service has actually begun.

6. If you have any interest in reaching people other than your regular church members, don’t ask us to create an account and log in to simply watch a Sunday service. It’s an unnecessary barrier and just doesn’t feel very welcoming. This doesn’t appear to be a common situation, but I’ve encountered it.

7. Give people who are considering visiting your church as much information through your webcasts as possible. If you have both a traditional and a contemporary service, for example, consider streaming both. Even if you have multiple services that follow the same pattern, it’s helpful to stream them all. This gives viewers options for choosing what best fits their schedule, and provides other information as well. Hope springs eternal, and I haven’t given up hope of being able to attend church in person someday. I find it helpful when the camera pans out and I can see where I might be able to sit and have potentially clean air. I also notice what people wear. Sometimes people dress up more for one service than another, which often correlates with more perfume use, a health and barrier issue for me. Other viewers may be interested in things like how many children are in the service, or if the aisles are wide enough for easy wheelchair access.

8. Make it easier for people watching at home to sing along with the congregation by providing us with the song lyrics. The easiest way to do that is to simply point the camera at the projector screens in the sanctuary when lyrics are being projected. I’ve watched webcasts from churches who project lyrics over the shots of the praise team, which is a good option for churches with the capability. One church in town has consistently wonderful music that always touches me deeply, but the camera tends to pan from the worship leader to the choir to the praise team and only occasionally gives a shot of the projector screens. I can worship with the congregation when I happen to know the song, but am left simply watching when I don’t. I was spoiled for many years by a worship leader husband who gave me a copy of all the music that was going to be used in the service that day. It’s very odd for me, since his death, to find myself in the position of not knowing many of the songs being sung, but it’s safe to assume that most webcast watchers aren’t married to the worship pastor and are in a similar position. For multiple reasons, I've often thought it would be helpful for churches to post their bulletins or order of service on their websites.  This would be especially helpful for churches that don't provide song lyrics during the webcast, because if I know what songs are going to be sung, I can look up the lyrics online.

9. It’s nice to be acknowledged. I know one pastor (my brother-in-law actually) who walks up to the camera at the end of the service and talks directly to those of us watching, telling us he’s glad we were able to join the congregation that day. I love that. It’s a small gesture that means a lot.

Again, many thanks to all churches who stream their services. Those of us watching at home certainly don’t expect perfection, and we know this is relatively new technology that requires some learning and experimentation. My suggestions are simply meant to spur thought and point out some things you might not have considered. May your efforts bear much fruit for the kingdom of God.

Monday, January 23, 2017

The Connection Conundrum

Moving is never an easy process, but for those who are significantly limited by toxic illness, the challenges are magnified exponentially. How do you even begin to build a life when you’re shut out of most public places?  How do you meet people?  How do you find your tribe, your support, your place of service and belonging?

My goal has been to get my construction project completed, and then to turn my attention to trying to answer those questions. One thing I’ve been doing already, however, is watching as many webcasts as possible from churches in the area. I need the spiritual nourishment, of course, but I’m also trying to get a feel for what the church options are on the remote chance that I can somehow find a way to be connected to one.

This blog post is prompted by a survey I took for an area church a couple of weeks ago (which was open to guests and to people watching online) and by the sermon I heard yesterday from another. The theme of both was connection, and why people aren’t as connected to the church as the leaders would like them to be.

I don’t remember all the details of the survey. I do remember that there were questions about church attendance, small group attendance, and ministry participation. I seem to remember that one or two questions had a fill-in-the-blank type option, but most were multiple choice.

Completing the survey was exceptionally frustrating. Generally, the questions were something like “How often do you do x or y, and if it’s not very often, why not?” The possible answers rarely fit my circumstances and I don’t remember a single answer that acknowledged health limitations. The possibilities seemed to generally assume either a lack of knowledge or a lack of desire.

By far the most frustrating question for me was about participation in mission projects. None of the possible answers fit at all, so I finally settled on the last option given: “I don’t know.” That’s a fairly blatant lie. Of course I know why I don’t participate in mission projects. It’s because at some point in my life, most probably after I had been appointed as a missionary, and while I was studying at the Missionary Learning Center, I was infected with Lyme disease and not diagnosed. It’s because I got sicker and sicker as I served overseas. It’s because doctors didn’t take me seriously and the toxins overwhelmed my genetically weak detoxification system to the point that I could eventually no longer serve as a missionary, no longer enter most public places, including churches, and no longer participate in mission projects without accommodation, which people don’t generally seem willing to give. That’s why.

The sermon I heard yesterday, from a very different type of church, was entirely about small groups. The preacher spent time talking about the importance of Christian fellowship, then listed the reasons he imagined for people not participating in small group ministries. The reasons he proposed included being too busy, fearing vulnerability, and being unwilling to engage with people different from ourselves. At one point he mentioned “getting in our own way.” Again there was no acknowledgement that some of us need some of you to make changes if we’re going to be able to study, pray, and worship together.

I’m not sure I can explain what these sorts of messages, which are constant, feel like to those of us who are shut out of the broader church community. Maybe the spiritual and emotional hunger can be compared to the need for physical nourishment. Imagine (or remember, if you’ve experienced it) not having access to a steady source of food for years at a time. You’re constantly thinking about and looking for options, and you spend a great deal of time and energy focusing on how to feed yourself enough that you can stay upright and not pass out. On a regular basis, while hunger pains knot your stomach and you’re wondering where to find your next meal, well-fed people come and lecture you about the importance of eating right. “Eating is very important,” they tell you. “You should really eat more and not sabotage yourself.” They say you should come and eat with them, but the door to the room that holds the food is locked, and although many people appear to have a key, you don't. When you mention the problem, you’re told that unlocking the door would be too difficult, or you’re simply ignored.

It’s hard to be locked out. It’s also hard to be implicitly blamed for the inability to access longed-for resources. Reading and hearing church and small group slogans is often hard. When I hear something like “There’s a place for you,” my automatic mental response is “I seriously doubt it.”   

Won’t you consider letting us in?  Won’t you consider keeping toxicity in mind when making decisions about building materials, cleaning and pest control methods, and personal care products?  Please unlock the door. We’re very hungry.