Why Have Online Church Options Gone Away?

I wish I had actual statistics, but from talking to others in the chronic illness/disability community, I gather that most churches have removed or cut back the online access options they had in place during the height of the pandemic. I know of churches that opened their digital doors during Covid, but have now shut them again completely, and others that were offering interactive options (Bible Studies and Discipleship Groups) that now only provide access to their worship services. Since churches proved they can offer online options when the desire is there, it seems important to examine why so many of them have stopped. 

A helpful article by Karl Vaters titled No, Pastor, Online Church Is Not Slowing Your In-Person Attendance relates this common conversation among pastors.

  • Pastor 1: How has your attendance been, post Covid?

  • Pastor 2: Rough. A good one-third haven’t come back yet.

  • Pastor 1: It’s half for us. I blame online church. They’d rather watch at home than show up in person.

  • Pastor 2: I agree. We may stop our live stream so they have to come back. Maybe that will work.

  • Pastor 1: We’re thinking of doing the same thing.

I’ve seen many conversations like this play out on social media. My gut tells me this is probably the biggest reason that churches are turning off their cameras and internet connections.

Vaters pushes back against this line of thinking. He points out that in-person church attendance was already dropping long before online church became common. He notes that churches that stop streaming don’t see an in-person attendance rise. He also says this. “According to the latest reliable stats from Barna, around 20 percent of church attenders only watch church online. And there’s plenty of anecdotal evidence to suggest that most of the 20 percent who only do online church didn’t stop going for convenience, but for many reasons, including illness, distance, age, trauma, and more.”

I’m tempted to highlight that quote in red or type it in all caps. It’s such a basic point that seems to be missing in almost all the conversations I’ve witnessed. Those of us who join you from home aren’t just lazy. We don’t stay home because it’s easier or we don’t want to be pressured into serving or giving. We want to be part of your church, but things we can’t control keep us from being with you in person. Very often, that reason is chronic illness or disability.

Cognitive Biases

Maybe there are also other factors at play when churches shut their digital doors. A Psychology Today article on Why Leaders Find It So Hard to Accept Remote Work points to three cognitive biases that make bosses skeptical. I think they’re also applicable in the church context. 

  1. The first bias is ambiguity aversion. This is the tendency of human beings to prefer known risks over unknown ones. Having workers or church attenders online instead of in person feels like an unknown risk.

  2. The second bias involves social distance, meaning that we tend to like and trust people more when they’re physically close to us. People who aren’t physically close seem less trustworthy and more suspicious.

  3. A third cognitive bias that may play a role is the sunk cost fallacy. That’s the tendency to avoid change once we’ve already invested time or money in something.

What’s the Goal?

So is it worth it to overcome our biases? Are online options good or bad for churches? Vader says they’re good. He notes the following:

“The first purpose is as an alternative for those who can’t attend in person. The family on vacation, the senior who can’t make it due to illness, and so on. They want to be there, but are temporarily absent. And they’re grateful for the chance to check in with their home church online for a week or two.

The second purpose for online church is to serve as a sneak peek for those who are looking for a church to attend. They’re not watching online instead of coming in person, they’re watching several online church services hoping to find one to attend.

In both circumstances, online church isn’t keeping people from attending, it’s helping connect them to the in-person experience. Online church is a step toward in-person attendance, not away from it.” 

I appreciate his point, but he leaves out something important. What about the people who can’t attend in person ever? What about people with illnesses that are chronic and not temporary? What about people with disabilities, who can’t enter the church building unless the building is made more accessible? Do we matter, too? Is the goal to get people in the building or is the goal to minister?

Lifeway Research asked pastors the question, “Does Online Church Attendance ‘Count’?” The responses are interesting (pastors were split on whether online viewers could be counted as regular attenders), but for me, the question itself is equally as important. When I read the question of whether it counts, I translate it in my head as to whether I and others like me count.

Dave Adamson, an online pastor I follow on social media, says this: “For the first time in human history, we have the technology to literally ‘go into all the world’ in an instant. And yet church leaders still insist on using this technology to invite people to events, instead of inviting them to conversations.”

Do you want to go into the chronic illness/disability corner of the world? Do you want to invite us into your conversations? We’re watching to see.

Religious Organizations and the ADA

In a previous post about the Americans with Disabilities Act (ADA) I made a brief comment about churches being mostly exempt from the law, but I didn’t give the reason. Simply put, religious organizations are exempt because they fought to be.

I knew that, but assumed it was only because of financial concerns. Recently, though, someone in one of my online support groups posted a link to an eye-opening article and I learned I was wrong.

The author, Shannon Dingle, notes that the representative for an association of Christian schools argued for exemption because religious institutions are “morally required . . . to discriminate against carriers of AIDS where AIDS was incurred through immoral conduct.” In other words, the argument was that it was morally right to deny access to people with chronic illnesses and disabilities because of the possibility that some people’s challenges might be their own fault. That’s a truly amazing and appalling line of reasoning.

The representative also argued that “nothing has been shown to indicate that there is a national necessity to apply the ADA Bill to churches, religious schools, and other ministries.” Nothing? How about the teachings of the Bible?

How about the story of the Good Samaritan in Luke 10? Jesus compared his compassionate concern to the actions of religious leaders who ignored the needs of someone with an injured body. How about Jesus’s anger at the money changers in the temple (Mark 11)? They were keeping a group of people from accessing their place of worship while the religious elite were able to worship freely in theirs. 

What about passages like Ezekiel 34? God says to the religious leaders, “You have not taken care of the weak. You have not tended the sick or bound up the injured. . . . You abandoned my flock and left them to be attacked by every wild animal.” What about Matthew 25? God says that when we meet or ignore the needs of those who are sick or otherwise suffering, it’s as if we’re doing it to him.

The fact that churches aren’t required to provide access to people with disabilities leads them to forget we exist. I don’t think the average church leader or member has any idea how many of us there are (26% of all adults in the United States) or how completely inaccessible places of worship tend to be. 

It's no surprise that there’s a great deal of emotional pain among the chronically ill and disabled from being systematically shut out of church. Whether or not government requires them to do the right thing (the actual right thing, not the right thing as it was defined in the exemption argument), every church has the choice, and disabled people are acutely aware of the choices that are made.   

Dingle puts it this way: “Disabled people didn’t leave the church. The church didn’t even leave us. No, we were never welcome.”

She adds, “It takes all the forgiveness we can find to love churches that didn’t want us. . . . Hopefully, someday the church will love us back.”

Abused: The SBC Report and What It Can Teach Us

I imagine most people with Southern Baptist ties are reeling this week from a bombshell report that concluded that leadership consistently chose to protect themselves legally instead of protecting church attenders from sexual abuse. As one Twitter user put it, when something is outrageous, the proper response is outrage.

I’m outraged. I’m also not completely surprised, because I’ve already seen the dark side of church culture. Once I was an insider – a preacher’s kid who grew up to be a minister’s wife and a missionary. Then I became an outsider – someone with a chronic illness/disability that keeps me out of most church buildings because of the product choices people make. Believe me, the view is different from here.

The way that leadership treated the women who came forward with abuse allegations is eerily similar to the way that people with chemical intolerance or other illnesses or disabilities have been treated. As I put it in my book, if ignoring us doesn’t work, we’re labeled, blamed, viewed as a problem, beaten with the Bible, and judged like Job. Abuse survivor Christa Brown said that church leaders shunned and disbelieved her and communicated “you are a creature void of any value—you don’t matter.” I can’t count the number of times that someone in the chemical illness community has said the same thing.  

People in power are saying the right things now. Here are a few good quotes from denominational leaders. 

“This is the beginning of a season of listening, lamenting, and learning.”

“This much is clear: we have much, much work to do.”

“Every cry for help deserved to be heard.”

This is a time to deal with the issue of sexual abuse and to listen closely to what survivors are saying. I also pray that the courage and tenacity of those who came forward will change the culture enough that the disability community will be heard, too.  

As churches are wrestling with the report, I hope they’ll take a broad view when they answer these questions.

1.     Is it dangerous to come to your church? In the context of the report, the danger is sexual abuse, and it’s a real danger which deserves focused and intense attention. However, it’s not the only threat. When you don’t choose non-toxic options when you build, renovate, clean, treat your lawn, or deal with pests, you put people’s health and sometimes their very lives in danger. I know it’s hard for people who haven’t had to learn about the dangers to really believe that, but it’s true. For people dealing with chronic illness or disability, church can also feel emotionally dangerous, for reasons I’ve already mentioned and more.

2.     Who or what are you defending?  This is a question that has stuck with me since I heard a women’s minister say it during a forum on racial reconciliation.

The report indicates that leaders were defending the image of the church instead of defending the people that attended. Are churches doing that when they choose to build a building that looks impressive instead of one that doesn’t make people sick? What about when they say they can’t put a notice in the bulletin about coming fragrance free because it might offend people? Who are they defending? People who have power or the vulnerable and outcast? 

When I first became part of the chemical illness world and I started hearing the stories of how people were ignored, dismissed, or denigrated by their faith communities, my first reaction was to defend the church. At some point, though, I realized I couldn’t do that anymore. I still love the church and the people in it. In fact, it’s because I love it that I want it to be safe and accessible for everyone. I can’t defend it, though. Something is very wrong and we need to fix it.

SBC president Ed Litton is optimistic. He says, “I think the trauma of what we’re seeing at this moment is waking people up to the need for culture change.” May it be so.

I Hear Doors Slamming Shut: A Response to Tish Harrison Warren

I saw the headline “Why Churches Should Drop Their Online Services” and I felt myself tensing up. Would writer Tish Harrison Warren even address the issue of people with chronic illness or disabilities? What would her reasoning be for shutting the doors of access that had so recently opened? 

Because the New York Times opinion piece was behind a paywall, I wasn’t able to read it until Saturday, when a friend with a subscription shared it. As a result, I’m a little late to this conversation. On the positive side, the delay has given time for plenty of other people to say important things that I can quote.

First, here’s a brief synopsis of the argument Warren gives for dropping online services. She says that dropping the online option is “the way to love God and our neighbors” because our bodies “are part of our deepest humanity, not obstacles to be transcended through digitization.” She believes that online worship diminishes us as people because only in-person gatherings let us worship with our whole heart, soul, mind, and strength. She doesn’t think having both online and in-person options is appropriate, because “offering church online implicitly makes embodiment elective.”

Warren did address the illness/disability question. She said, “No longer offering a streaming option will unfortunately mean that those who are homebound or sick will not be able to participate in a service. This, however, is not a new problem for the church. For centuries, churches have handled this inevitability by visiting these people at home in person.”

I have many, many thoughts about what she has to say. Here are a few of them.

1.     When Warren asserts that dropping the online option is the way to love God and our neighbors, the question that comes to mind is the same one that the law expert asked Jesus in Luke 10:29: “Who is my neighbor?” The parable of the Good Samaritan, which followed the question, contained an account of religious leaders who ignored someone with a wounded body. They evidently didn’t consider him a neighbor, so the instruction to “love your neighbor as yourself” was one they could comfortably ignore. Am I your neighbor? Restricting my access to corporate worship is certainly not the way to love me.

I also truly fail to see how shutting people out is somehow the way to love God. Matthew 25:40 tells us a good way to do that. “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’”

2.    When Warren says that bodies “are not obstacles to be transcended through digitization” I wonder if she believes in trying to transcend our physical limits at all. Should we stop praying when we’re hungry or sleepy? Should we stop singing praise songs when we have an itchy mosquito bite? We find ways to transcend the challenges of our bodies all the time. Transcending is a good thing. If my body won’t let me in your church building (or, said another way, you won’t let me in by not making your building accessible), give me an online option so I can transcend.

3.    Worshipping with our whole heart, soul, mind and strength looks different to people with varying levels of physical health. When I worship from home, I AM worshipping with all my strength. My physical limitations and need for online access don’t “diminish” me and my online presence doesn’t somehow weaken the church.

4.    The idea that offering an online option makes in-person worship an elective only applies to people for whom it was already an elective before the online option arose. It was impossible for me to attend in person before online options came to be and it will be impossible if online options go away.

5.    No, the fact that there are people who are homebound isn’t a new problem, but we have new solutions, and when they’re already in place, it seems foolish (and greatly lacking in compassion) to remove them. I also take issue with the assumption that churches have met the needs of the disabled and chronically ill population by visiting people at home. There’s so much I could say on the topic, but I’ll simply note that only a tiny percentage of homebound Christians I know get any sort of in-person visit, and even when they do, they would still like to hear the sermon. Also, how do you reach new people? How do you identify the homebound who are shut out of your church?

6. A few months ago I read Warren’s book “Prayer in the Night.” In it, she talks about the vulnerability of joy — the idea that even in joyful moments, there can be a sense of melancholy because we feel their impermanence. I felt the vulnerability of joy when churches began to digitally open their doors to those of us who’ve been shut out. It’s ironic and sad that Warren is now advocating for making a joyful reality unnecessarily impermanent.

Other Voices 

These are some of the things I’ve read in response to Warren’s piece that I think are worth sharing.

***

A Baptist News article quotes pastor Marc Schelske who said that after going online “it only took a few weeks to learn that we were doing something we should have done years ago. . . . The view of embodied worship on display in the op-ed is only one that works for able-bodied people with weekends off work. There’s just no way around that. I love gathered worship. I love the comfortable practices and traditions I’m used to. But the pandemic has made it clear that those comfortable practices were also exclusionary, and I’m convinced that following Jesus must lead us toward hospitality and inclusion.”

***

A Religion Dispatches article entitled Ending Zoom church is a great idea for a column – provided you completely ignore the disability perspective includes some important insight from disability advocate Samir Knego. He says, “There’s something deeply condescending and ableist about the idea that proponents of online church options don’t believe or understand that ‘bodies . . . are part of our deepest humanity, not obstacles to be transcended through digitization.’ Bodies that require assistance are still bodies.” 

Knego also notes that he’s not surprised at the idea that people with physical challenges should be relegated to “an apparently inferior level of engagement with worship.” He says the idea “frames disabled parishioners as the objects of charity rather than allowing us to attend church on our own terms.”

“Disabled people are so rarely believed to have spiritual insight in our own right,” he adds. “At best, we’re an example for nondisabled people to learn from, or feel happy that they aren’t like us. . . . . If you don’t think—or care—that disabled people are part of your community, then perhaps it’s not surprising that you won’t feel the need to include or consider us.”  

***

A Religion News article entitled “Streaming online has been a boon for churches, a godsend for isolated” quotes from a Texas A&M report which found that “with the shift online, churches were shocked to discover the ways that an online service can become a wide-reaching net.” The article also reports on a study of the pandemic approach of 2,700 congregations from 38 denominations which found that “churches with a hybrid approach — with both in-person and online services — saw reported worship attendance growing by 4.5%. Churches that only met in person saw attendance decline by 15.7%.”

***

From a Sojourners article by Melissa Florer-Bixler:

“I care deeply about the embodied experience of people physically distant from the place where some of us gather for in-person worship. The people who utilize Zoom worship do, too. They would love to be near children running across the sanctuary and to feel the bass line hum in the air. They would prefer if dementia, Parkinson’s disease, and compromised immune systems didn’t keep them from pressing their palm into the hand of another or bringing a piece of bread from a common loaf to their lips.”

“Rather than shutting down our Zoom option, our worship commission met to discuss how we can creatively and intentionally deepen participation and fleshy community among those who are separated from localized worship and fellowship. We decided to have one of the weekly scripture passages read by someone on Zoom. We’ve asked some families to prepare special music, sung from their living rooms.”

***

And finally, in a post called Why Churches Should Continue Their Online Services, Danny Guldin says this:

“Yes, our bodies are important. Yet, they do not define who someone is or can be. Our bodies are fragile. The love of God is not.“

 “Many churches made technological leaps they would never have made had we not been pressed to do so. Online worship is not a problem to be solved; instead, it is a gift that empowers the church to reach more people than ever before and expand our idea of what the Christian community can truly be.”

A Game of "What If"

I’ve been writing this post in my head, wondering when the best time would be to share it. When will everyone staying home because of COVID-19 find the novelty wearing off?  When will most people really start to feel the challenge of seeing the same walls day after day, of feeling isolated and alone, of realizing the world is full of airborne threats to be dodged and managed?

This could be an important opportunity for the chemically ill community – maybe the closest we’ll ever get to being understood by the healthy population. It seems like a good time to play a game of “What If.” Here goes.

  • What if you had to stay home to avoid the virus, not only for weeks or months, but for years, even decades, on end?

  • What if people who were immune to the virus (or thought they were) put it in the air intentionally? What if they rubbed it on their bodies and infused their clothes with it and sprayed it in public buildings and in their homes and yards?

  • What if people constantly told you or implied that you were exaggerating the problems the virus could cause or that your beliefs about it were a sign of mental illness? What if they told you over and over again that it wouldn’t affect you if you didn’t believe it would?  What if there was a powerful, well-funded virus lobby that worked hard to shape the opinions of medical professionals, employers, and the general public?

  • What if the “We’re all in this together” mantra wasn’t true?  What if you were one of a minority of people who had to stay home? What if most people were out living their lives and were too busy to find ways to include you?

  • What if you had been staying home alone for years, asking businesses, medical facilities, schools, churches and other organizations if they could either provide a virus-free space or online connection options, but they ignored you?  What if many people were suddenly forced to stay home for a while, and online opportunities instantly appeared? 

How would you feel? What would you hope others would do in the future? Replace the word “virus” with “chemicals” and you have the reality that those of us with chemical illness face. We try to find or create safe spaces and we shelter in them, working hard to keep them untainted as toxins are introduced from the actions and choices of others. When we leave our homes, we protect ourselves as best we can, but instead of being worried about potential future problems, we often experience symptoms, sometimes excruciating and life-threatening ones, immediately on being exposed. As with virus prevention, we’ve learned that the easy solutions (masks and air filters) aren’t enough and that we can only stay well if others take the problem seriously, too.

I want your life to improve, but I also want you to remember how you feel now. Human nature being what it is, though, I’m afraid you won’t. Recently I’ve been learning about the hot-cold empathy gap. The term describes the fact that when we’re in a “hot” state (being driven by visceral forces like anger, hunger, sexual desire, etc.) we have trouble remembering what it’s like not to be in that state and vice versa. It leads to a lack of empathy both for ourselves and for others. Right now you have a taste of the frustration, anxiety, and loneliness we experience, but once things calm down, the memories and empathy will fade.

Because of that, I’d like to ask you to act now to make some changes. There are two avenues of change needed. We need more safe spaces we can enter in person, and we need more online connection options.

What can you do now to make your home and other spaces more healthy and accessible?  Can you remove fragranced products? Can you switch to safer cleaners? Can you change the way you deal with bugs and weeds?

How can you increase online connection options?  Workplaces, schools, and churches have all discovered that the technology isn’t hard to master. You’ve proven you can do it. The trick is that what works when everyone is logging into a meeting from their own computer doesn’t work as well when most people are in one room and there are one or two trying to access the meeting from elsewhere. Sometimes only the person leading the meeting can be seen and heard by the online participants, which makes group discussion problematic. I would tell you what the best options are for combating the issue if I knew. I believe a multi-directional microphone is part of the answer. If someone with experience in what works would provide the information in the comments section, I would very much appreciate it. (If you comment on the blog itself rather than on Facebook or Twitter, more people will be able to see it.)

The book of Genesis tells us about Joseph, whose life fell apart to the point that he ended up in prison, through no fault of his own. Pharaoh’s cupbearer ended up there, too, and Joseph interpreted a dream for him and predicted that he would soon be released and back in Pharaoh’s good favor. Joseph had a request for his fellow inmate: “When all goes well with you, remember me and show me kindness; mention me to Pharaoh and get me out of this prison” (Genesis 40:14). Verse 23 tells us what happened when the cupbearer was released: “[He], however, did not remember Joseph; he forgot him.”

We in the chemical illness community are like Joseph. Suddenly the cells are full of people who will soon be released. We’re asking, pleading, begging, “Please, remember us when you’re free again and show us kindness. Help us get out of our prison.”

What if you acted now to make changes?  What if you didn’t forget us when your life opened up again?  What if?

 

Welcome to My Planet

It’s certainly been an interesting week or two.  So much of the time I feel like my life, both past and present, has been and is so different from the norm that I’m like an alien, living in an alternate universe.  Lately people have been visiting my planet, and I’m curious to see the effects of that.

The COVID-19 preparations and precautions have led to a bad news/potentially good news situation for those of us with chemical illness.  The bad news is that the masks and mask inserts that environmentally ill people often rely on to navigate the toxin-saturated world have been unavailable or are costing far more than normal.  This unfortunately comes at a time when there are exponentially more problematic disinfectants and hand sanitizers being used than usual.  People with chemical illness are reporting having no safe places left other than their own homes.  Many are needing family members to immediately shower and change clothes when they return from being anywhere at all. 

Maybe some good will come from all this, though.  These are some things I’d love to see:

1. I hope that people will get used to seeing others wearing masks.  Recently I’ve heard healthy people talk about wearing masks in public and feeling they look like oddballs or freaks.  I assume that means they think that’s what I look like when I wear one.  It would be nice if the look became a little more commonplace and acceptable.

2. I’d love for churches and other organizations to improve their webcast and video conference offerings.  I hope churches that don’t currently stream their services will decide to do it.  I hope churches that already do will make improvements (like making sure the volume is adequate and providing the words to the songs being sung).  If churches could figure out how to make Bible study and other small group gatherings accessible to those of us who can’t enter the church building, it would be a wonderful silver lining to the current challenging circumstances.

3. I’d be thrilled if the situation led to more understanding and compassion for people with chemical illness.  We were doing social distancing before it was cool and we’re very familiar with the feelings of loneliness and isolation.  The frustration and grief of not being able to attend events we would love to attend is a daily part of our lives. When those of you who are healthy return to full participation in society, I hope you’ll remember that some of us can’t do that without your help.  The virus threat will diminish, but the threat of synthetic fragrances, pesticides, and other chemicals will remain.

Masks and staying at home aren’t the only things I’ve had experience with. I lived in Peru during a time when there were empty store shelves and a cholera epidemic among other challenges (like terrorism, political uncertainty, and inflation of 10,000 percent).  I’m feeling less anxious about the current situation than a lot of people seem to be because it isn’t new to me.  What I learned during those years is that people are resilient.  We can find ways around challenges when we work together and help each other.  Mostly what I learned was that God’s peace expands to fill the space we give it.  When we stop to breathe, we realize that God is in us and around us and holding us tight.

It’s not just the COVID-19 situation that has made this an interesting week or two.  If you count both dates, there are nine days between the anniversary of my sister’s death on March 7th and the anniversary of my husband’s death on March 15th.  Those nine days tend to be some of the most emotionally challenging of the year for me.  This year, in the middle of my “just get through it” time, I finally crossed the finish line of my excruciatingly long book publishing process.  It’s done.  The book (Chemicals and Christians: Compassion and Caution) can be purchased on Amazon, Christianbook, or through Redemption Press.  I don’t know what to make of the timing, but I’m grateful to have finally reached this point.  Thank you for your prayers and support. Thank you for being interested enough in this topic to read my blog. Thank you for wanting to know what it’s like on my planet.


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.

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.

Cleansing Temples

A recent Bible study on Jesus cleansing the temple (Mark 11: 15-17) prompted some thoughts. Here’s a little background for those not familiar with the story or the history. The temple was comprised of four courts. These were the Court of the Priests, the Court of Israel, the Court of the Women and the Court of the Gentiles. The court of the Gentiles was the outermost court and Gentiles were only allowed to go that far.

Jewish worship in that day involved animal sacrifice. Not surprisingly, vendors began selling appropriate animals near the temple. Money changers were on hand so people could exchange other currencies for the one needed to pay the temple tax. Evidently, the commerce eventually moved inside the temple itself, into the Court of the Gentiles.

Jesus was angry at the situation. He drove the people and animals out. John’s account of the story (John 2: 14-15) tells us that he used a homemade whip. He also knocked over the tables of the money changers.

Why was he so angry? His statement in Mark 11:17 gives us the answer. He said, “The Scriptures declare, ‘My Temple will be called a house of prayer for all nations,’ but you have turned it into a den of thieves.” He was angry about what the temple was (a place of people charging exorbitant prices and taking advantage of worshipers) and about what it wasn’t. It wasn’t a house of prayer for all nations, because the Gentiles were forced to worship in a marketplace.

The story raises many questions in my mind. Were there many Gentiles who worshipped Jehovah in those days? Did they keep coming and trying to participate, even after the court was repurposed? Or did they just give up?

How many of the Jewish worshippers realized there was a problem? Did they not see the issue, not care, or just not think there was anything they could do? Did they shut their eyes to the plight of their Gentile neighbors because of the convenience of having easy access to money changers and the ability to quickly purchase what they needed?

I feel the plight of the Gentile would-be worshippers deeply. Those of us with chemical illness know what it’s like to be shut out of worship. We know what it’s like when people in charge prioritize things other than the ability of everyone to access a worship space. We know what it’s like to be on the outside looking in, longing for what so many people take for granted.

I love Jesus’s passion for the issue. I love that he cared so much that he made a whip and used it. I love that he’s on the side of the marginalized, ignored, and shut out.

What’s the counterpart for today? There are so many temples that need to be cleansed of chemical barriers to worship. Lord, please open the eyes of people who can make the changes. Please help those who can freely worship in communal spaces care about those of us who can’t. Thank you for the reminder of how much you yourself feel our pain.

Who Am I?

The news has been filled in recent days with stories of people identifying with a gender or race other than the one that seemed apparent when they were born. Because of that, I’ve been pondering the issue of identity. How much is chosen for us? How much can we choose for ourselves? Who am I, really?

People define themselves using many criteria. Age, race, and gender are starting points as are marital status and parenthood. We define ourselves by our jobs, our politics, and our faith. For those of us with chronic illnesses, a significant temptation is to let our physical conditions label and define us.

So who am I?

* I am more. I am more than my circumstances. I am more than my diseases. I am more than what the world sees.

Remembering that I’m more than my physical challenges is one of my biggest struggles. My chemical sensitivities, in particular, seemingly invade every corner of my life and affect every decision I make. I can never escape them.

I have long been intrigued by Satan’s reasoning in the book of Job. He asked God for permission to test Job in all sorts of horrible ways, including the death of all ten of his children. The Bible tells us that Job felt great sorrow and grief when confronted with his losses, but that he didn’t accuse God of wrongdoing. So Satan tried again. He proposed to God, “Reach out and take away his health, and he will surely curse you to your face!" (Job 2:5, NLT)

In general, I don’t think it’s helpful to compare suffering. I can’t even imagine the pain Job and his wife must have felt at losing all of their children, and I’m not at all sure that I would have passed Job’s test. I do know the grief, however, of losing my mother when I was a young teenager, and losing my husband last year. They were significant and life-altering losses. It wouldn’t be accurate to say that losing my health was harder than losing my loved ones, but it’s fair to say that it’s a loss with a different flavor. No matter how close the relationship between any two people, there is still a measure of separateness. While living on this earth, however, it is impossible to separate from the physical body. My body feels like me. My illnesses feel like my identity.

It feels that way, but it isn’t the truth. I have beliefs, thoughts, experiences and interests beyond my physical condition and my circumstances. I am more. You are more. Let’s remind ourselves of that.

* I am less. 1 Corinthians 12 describes Christians as parts of a body. Verses 19-21 say “How strange a body would be if it had only one part! Yes, there are many parts, but only one body. The eye can never say to the hand, 'I don't need you.'"

I am less than I can be when I’m not attached to the rest of the body of Christ. Finding a way to attach is a great challenge for anyone with significant chemical sensitivities. Many of us have learned, however, how essential it is to keep trying and how difficult it is to live a full spiritual life alone. Church, you are also less than you are created to be when you don’t find a way to include everyone who wants to be included. God designed us to complement each other and to work together to represent him on this earth.

* I am complete. After my husband died, I began to think about fractions. Our family suddenly seemed incomplete. We seemed like 3/4ths of a family. I realized that I needed to reframe the issue in my mind and stop thinking of my sons and myself as three of four, but as three of three. I needed to change both the numerator and denominator.

I also realized that not only was I seeing my family as incomplete or somehow not enough, but I was also seeing myself that way. Perhaps I was taking on the values of my culture. In the country and time in which I currently live, my race and education work in my favor, but my age, gender, marital and health status work against me.

Fortunately, God doesn’t see me as the world does. Colossians 2:10 tells me that I am complete through my union with Christ. He wants me to continue to grow and develop (the same chapter talks about letting my roots grow down into him), but as I am, I’m enough to be fully loved and accepted.

The Bible tells me that I’m justified through Christ. I’ve heard the term “justified” defined as “just as if I never sinned.” It’s a helpful definition, but I also find it helpful to think about how, when typing, our computers let us “justify” our margins. When we do that, all the gaps are filled in. Every line reaches the edge. God does that for me. He fills in the gaps.

So who am I? Who are you? What defines us? Who defines us?

They aren’t easy questions for anyone, and maybe they’re harder than usual for people with chronic illness. It’s so easy to let ourselves be defined by our diseases, circumstances, or culture. Instead, I want to let God tell me who I am. What he tells me is that I am his deeply loved child. That’s who I am, and that’s enough.

I’m Not “Allergic to Smells”

I’ve written before about the fact that people tend to associate toxicity with the presence of a discernible odor. I’m revisiting the issue because I continue to hear chemical illness described as being “allergic to smells.” I understand why people make that assumption, but the description isn’t fully accurate. One part of the inaccuracy is that although allergies can accompany it, chemical illness doesn't usually involve the specific immune reactions seen in traditional allergies. Instead, it’s generally a problem of the body’s detoxification system being overwhelmed or malfunctioning. The second inaccuracy is that not everything with a discernible odor is problematic and many odorless things are.

I’m also revisiting this issue because two recent sad stories drive home the point that toxic fumes don’t always come with an olfactory warning. A few weeks ago the story hit the news of a family of four on a trip to the U.S. Virgin Islands. The family was staying in a villa and the unit underneath the one they were renting was sprayed with the pesticide methyl bromide. At the time the story was reported, two weeks after the exposure, the two children were both in a coma and their father was unable to move or talk. The next day I read the account of a father and seven children who died from carbon monoxide poisoning after running a generator inside their home. Like methyl bromide, carbon monoxide is both odorless and potentially lethal.

The fact that our noses can’t always warn us of chemical dangers and that exposure symptoms are not always immediate makes it hard for people with toxic illness to know when an environment is potentially problematic. Online friend and fellow blogger Deb (visit her blog at www.greenleafindrought.blogspot.com) experienced that issue this week.

Deb moved to a new state about a year ago and has been very blessed to find a church that removed air fresheners and changed their cleaning products so that she could attend. She’s even been able to attend a care group, in the home of a family who lives a generally toxin-free life.

The family has a teenage son, and this past week, the son and a friend were getting ready for prom. The friend used cologne in a powder room near the area where the care group normally meets. The homeowner noticed the odor in the room two hours before the group was to meet and took action, wiping down all surfaces with vinegar, turning on exhaust fans, and opening windows. To be extra safe, the group decided to meet in a room farther from the location where the cologne was used, and Deb was seated between the open back door and an open window.

Deb reports that she didn’t smell anything during her time in the home. However, she states, “Less than half hour after getting home every bone and muscle and fiber in my body hurt . . . . I also had dizziness, migraine and loud ringing ears. The pain was excruciating all night.” She adds, “Obviously the chemical poison was there even if I could not smell it.”

I’m sure every toxic illness sufferer has a similar story. How do we avoid such situations? We need your help, and helping us helps everyone. My vote is for stronger regulations about what can be sold and greater discernment on the part of consumers about what we buy and use. Let’s try that.

The Purpose of the Building

This summer has been filled with more travel and family visiting than usual. I just returned from a camping trip with most of my husband's extended family. It's difficult to express how grateful I am for their willingness to sacrifice their own comfort to enable me to gather with them. I'm truly thankful for their Christlike hearts and valiant efforts to include me.

The trip was full of good family visiting times, but wasn't without its challenges. I had a significant chemical exposure (mosquito fogging) that introduced a new symptom to my list. Other challenges included an air conditioner that gave out during a traffic jam, a mix-up regarding a campsite reservation, a sick family member, and fearless skunks.

One challenge was quite unexpected and involved the use of a campground pavilion. We were a large group and had planned to gather under the shelter during our last day (a rainy one) to play games and visit. The campground office said it was fine as long as there was no other planned activity there.

Unfortunately, the campground office isn't the only entity involved with the pavilion. As we eventually learned, a group of volunteers (I believe they're called "Friends of the Shelter") built the facility. As we also learned, they are quite protective of it. We were confronted twice, at two different times during the day, with volunteers who were evidently very unhappy that we were using their building. I'm not sure I'll ever forget the sight of the second volunteer. He stood watching us, with a red face and semi-balled fists, looking like he would really like to hit someone. To be fair, he did eventually decide to be friendly and at the end of the conversation said, "I'm not trying to run you out," which at the beginning he seemed clearly to want to do.

It's hard to say exactly when the conversation took a turn and became more positive. Perhaps it was the moment when my husband asked simply, "So is this shelter just supposed to be for the volunteers?" Maybe that's the point where the gentleman remembered why the pavilion was built. Isn't a shelter in a campground supposed to shelter campers? Isn't being "friends of the shelter" a goal that's underneath the greater one of being friends of the humans?

The encounters seemed ludicrous at the time and still seem so as I write about them. I can't help but think, however, how similar they are to the way many people with MCS experience the church. Chemically sensitive people want to find shelter from life's storms and wonder why they aren't welcome in churches that were theoretically built for that purpose. They wonder how so many church members become "Friends of the Church Building" (who focus on making it more beautiful than healthy) rather than friends of people created in God's image who just want to enter the building without getting sick.

I correspond with many fellow MCS sufferers. One recently told me a familiar story of trying to communicate with her pastor about creating a church environment that's safe for her and other chemically sensitive members. She isn't making much progress. At one point she wrote, "We are being made to feel like a bother for wanting to come to church."

I think she summed it up well. Is that the message the church really wants to send? It's bad enough to send that message to chemically sensitive church members, but truly heartbreaking to send it to seekers. When people develop MCS or any chronic illness, they tend to become more open to spiritual realities and more hungry for spiritual truth. God is surely not pleased if people hungry to know Him can't enter a Christian church building because of the product choices others make.

Mark 11:15-17 tells this story: When they arrived back in Jerusalem, Jesus entered the Temple and began to drive out the people buying and selling animals for sacrifices. He knocked over the tables of the money changers and the chairs of those selling doves, and he stopped everyone from using the Temple as a marketplace. He said to them, “The Scriptures declare, ‘My Temple will be called a house of prayer for all nations,’ but you have turned it into a den of thieves.”

Why was Jesus angry? I imagine there were a number of reasons. Surely he was angry that commerce seemed to be taking precedence over spiritual pursuits. He was undoubtedly also angry, however, that the activities going on inside the building kept people who wanted to worship from being able to do so. The temple was designed with a series of courtyards and some people were allowed to go deeper into the complex than others were. Those who could simply walk by the marketplace activity to enter another court weren't impeded by the chaos. For those who could go no farther than the courtyard where the buying, selling, and money changing was going on, however, worship was a significant challenge. I imagine Jesus was angry that those who had no limitations on their ability to worship put barriers in the way of those who did.

I understand and appreciate the need to be stewards of and care for buildings, whether they’re campground pavilions or churches. I pray, however, that we never forget why they were built. They're for people.

How Beautiful

I've just returned from a vacation trip to Yellowstone National Park. It's very difficult for me to stay in motels or in other people's homes, so my husband and I travel in a 29-year-old campervan. The campervan makes travel possible, but not completely easy. Taking a trip always involves unavoidable chemical exposures, but most of the time the benefits of getting away make it worth the physical cost.

I've been to Yellowstone before, and my soul was as fed by the vast unspoiled beauty this time as it was on my previous visit. This trip had an added bonus, though. This time I was able to attend an outdoor worship service. Actually, I got to attend two: one Sunday morning and another one later that evening. The evening service was a bit problematic because of bug repellant, which many people applied at the same time and in close proximity to me. I moved away from the group, but was able to stay for the service, and was grateful for that.

Fortunately, the chemical exposures were very low for the morning worship gathering. There was a lot going on in my head and heart during that service and I found myself getting very emotional. Primarily I felt gratitude and joy for the opportunity to worship with others, since it's a very rare privilege for me these days.

As I sat in the midst of strangers from all over the country who had come together because of a common love for Jesus, I kept thinking of a line from an old Twila Paris song: "How beautiful is the body of Christ." Yellowstone is full of natural beauty, but I had to agree, looking around at the other worship participants representing parts of Christ's body on this earth, that they were beautiful, too.

There were also a lot of memories coming to the surface that morning. The summer after my freshman year in college I served as a summer missionary in a tourist area, and one of the things I did was to lead worship services in a number of campgrounds. The morning service at Yellowstone was led by a college girl, and when I looked at her I saw a younger me.

I began to wonder what I would tell the younger me, if I could. I wasn't naïve or untouched by life's challenges at that age. My mother died when I was 13, so I already knew that life could be hard. I never imagined MCS, though. I never imagined being shut out of church.

I think what I would tell my younger self is that corporate worship is a valuable treasure that shouldn't be taken for granted. I would say that providing worship services in unconventional settings is an important ministry and well worth the effort. I would thank the younger me for being part of providing worship opportunities for all sorts of people, some of whom might, like the current me, have no other options.

Would the younger me listen to the current me if I told her to value and store up in her heart every element of every worship service she was able to attend? Probably not. At the time, the ability to freely worship with others seemed to be a "given" rather than the privilege it really is. Now I understand. Now, when I'm able to worship with others I soak up all the moments of corporate grace and I treasure them. I truly treasure them.