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.


Christa Upton said...

WOW--fantastic way of explaining it!!!

My church HAS made accommodations for my family!!! But I think that is very rare among churches. :( I hope and pray more and more churches and people will begin to understand this and make changes to less toxic out of love, as Jesus would have.

This also reminds me of my friend with a child with severe autism who had to take a break from church, and other shut-ins who maybe have serious arthritis or live in nursing homes or have other health reasons they can't get out. I do not think people realize how much it hurts to be ignored. Being homebound is already hard enough, hard to feel like "a real person" sometimes. Even if there is nearly nothing they can do, just simply being mentioned in a sermon about connection ("We pray for those who are in nursing homes or confined to their homes") is HUGE. I find it sort of stunning that the survey did not mention health problems at all. We want to feel still a part of the Christian community, we want to know others care. My church regularly prays specifically for me, and that feels awesome!!!!

Even online/TV, I could find only ONE church program/service directed at those stuck at home. It's called Worship for Shut-Ins. :) The whole perspective is geared toward those who cannot attend, so it is very, very healing to watch. (Although it is assumed that the shut-ins are old. LOL But I can get past that.)

Anyhow, back to MCS--I feel most people with MCS besides the very sickest could go to church if accommodations were made. It feels very horrible to think how many are excluded because churches don't know or won't make changes. :( My MCS is still so bad I can't even go into town yet, but one day I hope to be in the category of being able to go to church again!!!

Thank you for this wonderful post, Martha!!!!

Martha McLaughlin said...

Thanks for the info on Worship for Shut-Ins. I hadn't heard of it. Yes, I agree that adding a single sentence to the sermon, acknowledging that some of us don't choose isolation of our own accord, would have been huge.

I decided to limit the post to toxicity barriers, but it's very true that the accessibility issue is much broader. I remember years ago hearing from someone in a wheelchair who said that just about the time that churches were starting to become more accessible, people started meeting in inaccessible homes instead. It was just sort of an offhand observation, but it made me want to cry.

It's such a cyclical problem. We don't attend, because we can't, and because we don't attend, people forget we exist or assume we don't want to come and therefore don't see the need to make gatherings more potentially inclusive.

Emily Ploegman said...

I am also recently unable to go to church because of MCS. Until recently I was able to attend a small group and the other attendees did there best, as they understood, to not wear extra fragrance products when attending.
Now in the past few months, I have had a setback and not been able to attend there either.
We cannot have people at our house because if someone came in wearing something I react to, I would have no safe place to go recover. It is often not simple to air out.
I am thankful we keep in touch with prayer requests over the phone and texts.
Over the years I have talked with many others who have searched long and drove far for a church in which they could tolerate the building. Walking out of many, never to return.
Many don't see it as an issue because they don't realize the number of people it is a Disability access issue for. They can't tolerate being there, so they are not there to express their need. How many members at each church NEED the ramp to access the building, yet as churches are able they install ramps for access. This is no different.

Martha McLaughlin said...

I'm sorry you haven't been able to attend your small group, Emily. I hope you'll be able to attend again.