Monday, August 12, 2013

Musings from Outside the Walls

Like many of my fellow toxic illness sufferers, I'm unable to attend church because of the chemicals present in the buildings and on fellow worshipers. I'm very grateful that my church broadcasts the Sunday morning services online, so most of the time I'm able to feel like part of the church family even from my home. Periodically, however, there will be a stretch of months in which the webcast doesn't work, or only works sporadically. We're in one of those phases now, and it stirs up memories, both of my own experiences and of stories others have shared. These bring with them miscellaneous thoughts about needing help to access corporate worship.

These thoughts are in no particular order and are simply what is currently in my mind and on my heart. I've been part of the community of disabled Christians for long enough now that I think I speak for many and I hope my musings will be taken for what they are -- simply an attempt to shed light on things most people have never had reason to ponder. I pray they can somehow be helpful.

1. We greatly appreciate your efforts to include us. We know it's challenging, and we're extremely grateful for those who go the second mile. We pray that God will richly bless you for your actions and we believe that he will. Matthew 25 teaches that when you minister to those in need, it is as if you are ministering to Jesus.

2. Even when accommodations are made that allow us to participate in the life of the church, we feel tense and insecure, because we know that things can change at any moment. It only takes one perfume-wearer to make a previously safe Bible Study group unsafe for those with toxic illness. One added air freshener, one new cleaning product, one application of insecticide -- the list of possible problems is endless. The tenuous nature of accommodation is true for people with many types of disability. (And is true even when the "accommodation" is a webcast.)  A wheelchair-accessible church sanctuary is of limited benefit when the group meeting there decides to meet in a home instead.

3. We often feel unwanted. We don't know what's in your heart, but whether or not it's true, we frequently get the feeling that we're a burden and that our desire to be part of a church is a bother to you. Our natural inclination is to put our heads down and slink away, but we can't do that in this matter. God has told us that we're all part of his body and directed us not to give up meeting together. We must try to connect somehow. Besides, we know from experience how hard it is to maintain spiritual health alone, and we need every bit of spiritual strength available to make it through the challenges of our lives.

4. We feel invisible. At one point several years ago my church promoted fellowship groups with the slogan, "There's room in the group for you."  I found myself pondering the fact that the church leadership probably believed that to be true, because those of us who were unable to attend were largely invisible to them. There didn't, however, appear to be room in a group for me. Was there room for an autistic child, a deaf church member, someone with social anxiety disorder?  I don't know. My personal good news is that several years after I pondered the slogan, a friend did start a fellowship group I could attend, which meets outside on her porch. I can't possibly describe how much of a difference it makes in my life.

5. We aren't just spiritual takers. We have things to offer too, and with creativity we can often find a way to use our gifts within the context of the church. When we're shut out, the body is missing important parts.

6. We sometimes feel like the poor man in the story that Nathan told King David, as recorded in 2 Samuel 12. The rich man in the story had many sheep and cattle, but the poor man had only one pet lamb. When the rich man needed to prepare a meal for a guest, he took the poor man's lamb instead of one of his own. This scenario plays itself out in many ways. Sometimes a church will have a safe room designated for the chemically sensitive, but healthy church members, who can easily meet in any room in the building, will use the only one available to those with toxic illness, which sometimes makes it unsafe for those who need it most. Webcast problems may be caused by too many people in the congregation using their smartphones during the service they are easily able to attend, preventing those who can only access the service online from participating. Sometimes healthy church members will park in handicapped parking spaces, forcing those who truly need them to turn around and return home.

7. We understand that our lives are very different from yours and that it's hard for you to relate to us. Maybe we don't seem quite real to you, and for that reason it sometimes feels like our needs aren't seen as equal in importance to your own. As truly grateful as I am for the effort that goes into running our church's webcast, I can't quite forget how it got started. I had been unable to attend church and had almost no contact at all for several difficult, lonely years, but the webcast was started because someone who attended every week was going to miss one important Sunday and asked if the service could be broadcast for him. I'm grateful that it got started, for whatever reason, and that the ministry continues, primarily for me. I try not to dwell on the history, but when things malfunction, I remember it and become afraid of returning to exile.

8. We know that there are a lot of good people with a lot of good intentions, but that it isn't always easy for things in a church to change. The channels of communication and authority are not always clear, and how to address needs isn't always obvious. Sometimes we get frustrated with the church as a whole, but when we think of individual people, we think of them with love. If you're interested enough in this issue to have read this far, we think you're great. It would also be great if you could help us find a way to be connected to the church. God designed us for fellowship. We need each other.


Anonymous said...

Very good explanation Martha. I, too, have MCS, but not as severe as you. I am also a pastor's wife who had to stop going to church for three years. When my hubby retired, God blessed us with a church that understands and is willing to go the extra mile.
God bless you as you struggle to keep close to Him and His people.
Barb Kuehn, Ontario, Canada

Martha McLaughlin said...

Thanks, Barb.

Zona said...

Thank you so much for this article. I intend to share it with many. Oddly enough I happen to have several friends who are pastor's wives, and also have one or more of these 'invisible illnesses' who also can't attend church. We've all experienced the 'invisible person' feeling about one month after we had to drop out of attendance. It is disheartening to say the least.

I'd like to point to your point #5. I remember after moving here to a city new to me many years ago now. How do you get to know fellow christians in a new place when you can't actually go to a church service and meet people? I phoned around, explained my situation and informed the person on the other end of the phone that I really wanted to be involved somehow. How about a phone call? Maybe someone could come by and get to know me here at my house? (a bit difficult granted due to the fragrance etc issues but..outside ??) But I went further than that. I also was interested in DOING something for the church. I let them know what types of things I could do from home that may assist in some church need - I knew it was best to give examples as first they would know what I could still do and secondly they wouldn't know what my skills and talents might include. I got no 'takers' one ever called or came by nor took me up on my offer to help. And oh, btw, the church I offered my help to was one that I was sending my daughter to church at.

I will say that I did get help with getting my, young at the time, daughter to sunday school and vacation bible school. The church actually formed a special ministry, a small group of families to rotate giving my daughter rides. That was very nice and helpful! But sadly after several years of the same families taking my daughter and through many attempts to try to talk to them in the drive way when they brought her home it seemed none but one had any time for me. Worse yet after a few years I learned that most of those families had never been told WHY I needed help getting her to church, why I wasn't attending myself. No one bothered to explain to them that I was ill!

And I'll join you in celebrating those churches who have attempted to reach out to this disabled community. Praise God for them! And praise God for online christian groups, webcasts and Christian radio! What would we do without them?


Martha McLaughlin said...

I'm so grateful for them and grateful that I can access them. The isolation must be especially hard for people with EMF sensitivity who have to limit or avoid exposure to computers, etc. At this point in my life my computer is so important to my ability to connect with the world that it almost feels like part of my body.

Kathryn Treat said...

Thank you for this wonderful post.

MCS Gal said...

Very good post. I am fortunate because my church is very accommodating. Through wireless technology, I am able to hear the service in the parking lot. Being a parking lot member means I also get to see other members of my church each week.
I am very open about my chemical sensitivity and I encourage others to also be open about my sensitivities. There have been many times when others have planned something and informed all invited that I would be there and they should come scent free.
I have had to make efforts to stay involved and to find ways to serve. Obviously there are many things I cannot participate in.
I have found that if people understand why I stay in the parking lot, why I don't attend a lot of church functions, why I don't invite people into my home, etc., they are more accommodating to my limitations.

Martha McLaughlin said...

Thanks for reading it and for your your kind words. It was a little scary to write, but I hope it will be helpful somehow.

Martha McLaughlin said...

Thanks for sharing your story. I love the creative parking lot solution to the problem of staying connected. Do you live in a fairly moderate climate or do you just put up with extreme weather?

DebraSY said...

I just emailed this link to a seminary professor who teaches a course on church outreach. Good post, Martha. A good summary of the feelings, frustrations and issues that so many people experience.

Martha McLaughlin said...

Thanks, Debra.

Rachel said...

I like this because it's honest without blaming. Another common feeling I have is anxiety about even trying to explain my situation to people at church. I find it can be frustrating if they don't understand and also painful. Now that my sensitivities are much less severe I avoid talking about it unless something comes up that makes a big difference. Some people are aware, though.

Martha McLaughlin said...

I also find that explaining can bring anxiety sometimes, because it's very difficult to communicate the extent of the problem and all the possible chemical triggers. One of the situations I most hate is when loving, well-meaning people try hard to make themselves or their homes chemically safe, but I still react to something. I find that one of the hardest situations to know how to handle.