On the 7th of December 2008, I went to bed sick with a sinus infection that was really knocking the snot out of me (for once, I do mean this literally). The next morning, I woke up with the infection absolutely no better, but with a new and disturbing constellation of symptoms: my left eye was watering but dry at the same time, I dribbled water and toothpaste down the front of my robe when I did the post-brushing “spit and rinse”. I had trouble keeping food in my mouth when I was eating breakfast, and I had this weird taste in my mouth–a combination of steel and soap. My left ear hurt, and everything sounded unusually loud. I phoned the nurses at NHS Direct, which was no small feat because my speech sounded slurred, and certain letters (like b, p, m) did not form well. The nurses sent me an ambulance. There was a small possibility I had had a stroke, but the real cause for my weird facial paralysis was Bell’s Palsy.
After I went to the hospital, had a basic neuro exam and bloodwork, got prescriptions for the prednisone and eye ointment, and an appointment for an MRI to rule out anything more sinister, I went home and did what any nerd would do–an internet search on my condition. There are a number of sites, but most of them are kind of off the wall. The most sensible and helpful–promising nothing but information and a help forum–was the Bell’s Palsy Info Site.
It is a very plain, low-key site, but the information is good. It promises no quick cures, no false hope. The forums are run and largely populated by people who have had Bell’s Palsy and other facial paralysis, or are helping a loved one cope with it. (There is one physical therapist who specializes in facial work who occasionally puts in his oar.) There are over fourteen thousand members, and although many have come and gone, there is a core of “longtimers” who welcome new inquirers,offer encouragement, and share experience of what has helped in the journey to recovery and what to avoid. They call out people who come on the site hawking weird “remedies” (there was an orange peel and snake oil “cure” promoted a while ago).
I’ve made a pretty good recovery–if you didn’t know I had had a facial paralysis, it would be hard to detect that there had ever been something wrong. I notice a little bit of asymmetry, and when I’m tired or stressed, I feel discomfort and weakness on my left side. Or I get what we call “shrunken head syndrome”–the scalp and facial muscles feel like they’re just too tight over the skull. Every case of Bell’s is a little different in terms of recovery time; mine was about four months before I could blink my left eye completely.
Even though I’m not having an active episode of Bell’s or other facial palsy, and my residuals are quite mild, I have become one of the “longtimers”. I haven’t been that active lately, but a request by one of the group members to greet some newcomers prompted me to look on the site and respond to a few inquiries.
I’ve sometimes thought how much the church could learn from this little, low-key site that offers support for a poorly understood health condition. A few things come to mind.
1. It is open and welcoming to any and all who come upon it. Newcomers can just browse the information parts of the website, or make their presence known–and it is completely on the terms of the person seeking help.
2. There are no “experts”. Nobody tells you that your experience isn’t legitimate–although we will sometimes say “that doesn’t sound like Bell’s Palsy”, and encourage people to ask their doctors for additional tests and investigations. Bell’s Palsy is miserable, but it is not life-threatening. Some other conditions that cause similar symptoms are not so benign.
3. It exists for encouragement. Everyone’s experience is different, although there are common elements that keep cropping up (pain, weird tastes, sensitivity to drafts, hyperacusis). There are things most people need to do, and we remind newcomers (because sometimes the health professionals don’t tell you about eye lubricants or wearing a hoodie or using Noxzema to help with pain).We are happy when someone makes a quick recovery; we are sympathetic when another person has a longer episode.
4. The opinions and experience of all members is honored. In Bell’s Palsy, there is no Jew or Greek, no male or female, or any of the other differences that divide people. Younger members’ journeys are equally valued and respected.
5. The interface between the group’s purpose and the rest of life is recognized. We know we are more than our faces, but we also recognize how much our face affects every aspect of our life–from work and play to love and relationships. We communicate through our faces, but four of our five senses are principally located in the front half of our heads. So a lot of our world comes to us through our faces.
6. People come, go, and stay according to their need–not the need of the group. I’ve come to love the online friends I’ve made. I reconnected with a grad school friend through the BPIS, and when I hurt myself in 2013, online Bell’s friends phoned, texted, and sent cards. I’ve checked in from time to time out of gratitude for how much help the group gave me, for their grace, generosity and humor. Others come for the time they need, but leave when they are better–with the best wishes of the group. If (and we always hope it will not happen) another episode occurs, they are welcomed back.
I think the 21st century church would not do too badly to think about all of this. Participation on the terms that work for the individual. Less reliance on “expertise” and more trust of the experience of the community. Encouragement rather than demand. Valuing the experiences of all. Honoring the interface between group membership and the rest of life. A lighter attachment to the group, rather than the idolatry of community–the ability to come and go as needed, and wishing people well as they do so.
I really think that the future of church participation is going to be more on the terms of the individual than on the traditional model of becoming a good congregant. Learning from support groups–online and in person–as to how this works well, might be a good place to learn not just to cope with this, but to embrace it and thrive.