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Stroke Survivors and their ChurchCommunitiesPeggy Goetz aa Communication Arts and Sciences Department, Calvin College ,Grand Rapids, MI, USAPublished online: 04 May 2011.
To cite this article: Peggy Goetz (2011) Stroke Survivors and their Church Communities, Journal ofReligion, Disability & Health, 15:2, 103-114
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Journal of Religion, Disability & Health, 15:103–114, 2011Copyright © Taylor & Francis Group, LLCISSN: 1522-8967 print / 1522-9122 onlineDOI: 10.1080/15228967.2011.566799
RESEARCH ARTICLES
Stroke Survivors and their ChurchCommunities
PEGGY GOETZCommunication Arts and Sciences Department, Calvin College, Grand Rapids, MI, USA
This research examines the attitudes of stroke survivors and theircaregivers in relation to their church communities. This study isbased on semi-structured interviews of 15 stroke survivors and theircaregivers. The interviews reveal that the participants’ church com-munities were generally excellent at providing initial comfort andpractical support, but poor at truly including the stroke survivorsand recognizing their desire for purpose after the “crisis” period.Survivors who formed subcommunities of members with disabili-ties found places within the church that manifested patience anda comfort with disability.
KEYWORDS disability, stroke, survivors, church
Christian traditions have been criticized by disability studies scholars for, inone regard, blaming people with disabilities for their sin or lack of faith, andin another regard, raising them up as spiritual superheroes whose role is toteach the church how to respond to suffering (Covey, 2004; Eiesland, 1994;Mairs, 1996). Recently, scholars and those in church ministry have begunto reflect on these issues, both in terms of theology and worship practices(Carter, 2007; Eiesland & Saliers, 1998; Webb-Mitchell, 1996; Yong, 2007).These writers have primarily focused on those who are deaf, are blind,have developmental disabilities (such as autism or Down syndrome), andthose who are in wheelchairs. Their emphasis is on dismantling physicalbarriers to worship and questioning those who equate faith with cognitiveability. Stroke survivors with communicative disorders are mentioned onlyobliquely, if at all, yet communication is central to church communities. Howdo people whose communication has been impaired communicate with Godin worship? How do stroke survivors become an integral part of a church
Address correspondence to Peggy J. Goetz, Department, Calvin College, 3201 BurtonStreet, Southeast, Grand Rapids, MI 49546-4388. E-mail: [email protected]
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that is formed by prayer requests, small-group discussion of Bible studies,and the congregational conversation that cements a community? This studypresents the reported experiences of stroke survivors and their caregiversin their church communities. The interviews presented here focus on twomajor questions:
1. How do stroke survivors experience various types of activities in theirfaith communities, such as worship, prayer, small group discussions, orBible studies?
2. How do faith communities involve people whose communication hasbeen impaired?
METHODS
Participants
A total of 15 stroke survivors (11 men and 4 women) and their caregivers(usually spouses) were interviewed for 1 to 2 hours. Their ages ranged from49 to 79 years (with an average of 62 years), and the time that had passedsince their strokes ranged from 1 to 30 years, although most had had theirstrokes within the past 10 years. The participants had all at some time beendiagnosed with one or more communication disorders, including Broca’saphasia, Wernicke’s aphasia, anomia, alexia, and apraxia. A number of par-ticipants had had only temporary periods with these disorders or periods oftime during which their ability to communicate had been much more greatlyimpaired than it was during these interviews.
All of those interviewed were Christians; most were members of non-denominational evangelical or Reformed churches. All participants indicatedthat they attended church quite regularly and that their faith was very im-portant to them. Participants were recruited through the speech pathologyclinic at Calvin College, Grand Rapids, MI, and the stroke survivors’ supportgroup at Mary Free Bed Rehabilitation Hospital in Grand Rapids, MI.
Procedure
The participants were interviewed in their own home or another site that wasconvenient for them. The interviewers used the following six open-endedquestions to initiate the interview.
1. Tell me what you remember about your stroke and rehabilitation.2. What was your church/religious experience before your stroke, and has it
changed any since then?
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Stroke Survivors and Church Communities 105
3. What are the best things your church community has done for you sinceyour stroke?
4. Have you had any negative experiences in your church community, eitherwith the church as a whole or with individuals?
5. In what ways are you included in your church community?6. If you could give your church community some advice on how to better
include you in the community, what would you say?
The videotaped interview was then transcribed for analysis. The re-sponses to the open-ended questions were analyzed by a meaning con-densation technique (Giorgi, 1975), which condenses the meanings of theinterviewees into shorter formulations and focuses on repeating themes. Anynarratives told in response to these questions were analyzed by a narrativestructuring technique that details the temporal and social organization of anarrative (Mishler, 1986). Two readers read through the interviews separatelyand then met together to discuss their coding of the themes and narrativesfor reliability.
RESULTS
Church Communities in the “Crisis”
Participants’ responses to questions about their church communities varieddepending on whether they were discussing the time period immediatelyafter the stroke or a time period significantly later. During the immediate“crisis time” following the stroke (ranging from 3 months to approximately1 year), stroke survivors most commonly responded very positively whenasked about their church communities. Many remembered details of care andconcern, given physically and emotionally, as demonstrated in the followingquotes. (All names are changed).
Doug: “During those 17 days I was at the hospital, I had 425 visitors.”Megan: “We were immediately put on the prayer chain and people startedpraying for us . . . And we had 1 hot meal to 2 hot meals a day every dayfor 3 months.”Josh: “I got about 200 cards from people at church, and our pastor cameto see me about, well, it seemed like 2 or 3 times a week.”Josh’s wife Carol: “And we got a lot of meals from people, just a wonderfulcaring thing. I think bringing meals is old-fashioned, sort-of, but it reallymakes you feel cared for.”
One couple described the way in which their minister found caregiversso that the wife could work full-time for the entire first year after the stroke.
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Jenny: “He appointed another lady from church to be our case manager,and she did all of the scheduling for these people, and like Jim said, wehad 42 different care-givers, and they came and spent the day with himfrom 8 in the morning ‘til 4 in the afternoon.”
A few participants had quite negative comments about their church’sinvolvement during this initial crisis period. These participants were usuallyfrom bigger churches and also attendees but not central participants in theirchurches.
Rick: “My church did not do a lot for me in terms of my stroke. And Ithink that Calvary is a very caring church, but it’s so big that the cracksare big . . . And I don’t think it’s because Calvary doesn’t care; it’s justsuch a big church. Unless there is a focal group there, those aspects arenot going to be taken care of.”
A more noticeable contrast, however, was the generally excellent sup-port given during the very difficult time of hospitalization and rehabilitationversus many reported feelings of lack of support when the survivors wentback to their “real lives.”
Nancy: “I think our church does really well in responding to a crisis. Theproblem is as time goes on, other crises, other people have needs. Andthe follow up isn’t always as good.”
Jessica: “You know, this is going to be our life. We need to learn howto deal with it, whereas, other ones, they were there during the crisis,and then you’re back home, and now this is where, you know, our lifebegins. We have to juggle, and all of a sudden, it’s like they’re absentbecause you’re back home; things are okay. No! They’re not.”
Jessica’s husband, Drew, also revealed this discrepancy in his angertoward their minister. The minister had often visited when Drew was inthe hospital, but Drew had no memory of these times. So even though hementally acquiesced to the truthfulness of his wife’s stories about these visits,he himself did not viscerally feel that the minister had shown his concern.
Drew: “You know, I felt by myself . . . when our, when the guy whowas the head of our church, he was there all of the time, but I wasn’tthere. I mean, in my head was somewhere else. But my wife thinks thathe worked so hard, but I knew, I know he was there when I, whenyou thought I was going to die, that he was always there. But I don’tremember that, so I don’t think he ever came.
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Stroke Survivors and Church Communities 107
These criticisms of churches’ responses point to the stroke survivor’sneeds and concerns outside of the period of time most churches haveplanned and organized for; it is the time they must learn to “live as a strokesurvivor” within a faith community. Churches are often excellent at providingcare during the hospital time and early rehabilitation period. Standard pro-cesses often include phone chains, notes in the bulletin, and food brigades,all excellent and vitally needed acts of love. As another of the interviewees,Rick said, “The church is the center of caring. There aren’t too many groupsthat care about people just because they care about people.”
At the same time, the individuals who have suffered the strokes aresometimes less aware of these church practices. This “crisis-time” assistanceis more explicitly appreciated by the caregivers; stroke survivors’ concernsoften surface when they return to their home to live as a stroke survivor.The major concerns of the participants interviewed for this study coalescedaround two areas: feelings of isolation and a search for purpose. To explorethese concerns, we must first go back to the initial stroke story.
THE STROKE STORY: A TRANSFORMATIONAL ACCOUNT
The most prominent commonality among the interviews of the survivors wasthe stroke story, which was a detailed transformation story. Participants gavedates and times, even in cases when the stroke had occurred more than 30years ago.
Bob: “It was a year ago, the twenty-first, in the bathroom of the office;my life changed forever.”Doug: “We made an appointment to see my doctor about 4:30 that after-noon, and I was at school, and I tried to come home about 2:00, but Icouldn’t walk out to the car.”Troy: “I was a volunteer fireman. In 1993, June twentieth, I was havinga seizure, and so my wife called 911, and the next thing I knew I heardover my fire dispatch radio that our fire department was being dispatchedto an address that sounded strangely familiar to assist with a 48-year-oldman who had a seizure and a possible stroke, and I looked up and said,“I am only [expletive] 47.”
The participants also reported detailed conversations of the time before andduring the stroke.
Josh: “I was in Newaygo, listening to my former pastor John Vriend speaka sermon. And, oh, and it was so good, I said to Carol, ‘I’ve gotta saysomething to him afterwards, and so I went and told him how much Iliked the sermon, and I went to say a word that I knew perfectly well,and I, I couldn’t say it. And I couldn’t say it. And I tried two times, I tried
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three times, and I sat down. And I said, ‘Carol, you better drive me toemergency.’”
In addition to the details of the stroke experience itself, the participantsclearly present their experiences as stories of transformation; it is as if theyare giving testimonies of this experience and the change in their lives. Thistype of testimony, however, is often presented as a change from strengthto weakness, from control to loss of control, from speech and awarenessto silence and confusion. In the interviews, this transformation is frequentlypresented by their contrasting their old lives with their new ones.
Megan: “We totally didn’t expect it. Doug is, he’s 47, picture of healthand he was very active, physically fit, and mentally. He’s a farmer sohe worked a lot of hours. You know, he couldn’t hold his head up, hecouldn’t life one finger, he couldn’t, he couldn’t do anything; you knowhis muscles were all atrophied. He couldn’t swallow. He was on oxygen.”
Previous studies of the stories of stroke survivors (Anderson, 2006;Thomas & Pollio, 2004) have discussed the perception of stroke as a “Dam-ascus Road experience,” a metaphor that gives some insight into the twoareas in which these stroke survivors felt most abandoned by the church.The apostle Paul’s sudden blindness and conversion leads him to a newcommunity and an altered purpose. According to Acts 22, as Paul is healedby Ananias, he is immediately called “Brother,” and told that “The God ofour ancestors has chosen you to know his will . . . You will be his witnessto all the world of what you have seen and heard.” He is welcomed intothe Christian community and given a mission. The narratives of these strokesurvivors, however, reveal the reverse experience. Where Paul found a newcommunity, they describe isolation; instead of receiving a mission, they findthemselves questioning their purpose.
Isolation
Many, though not all, of the participants talked about the role that commu-nication problems played in frustrating true community and relationship. Forexample, Megan and Dave discussed the common problem of impatienceand condescension.
Megan: “And sometimes I think people talk down to him. Kind of acondescending manner, and I don’t know if they intend to, but they—Dave: “But they don’t understand me.”Megan: “—will speak to him through me.”
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Stroke Survivors and Church Communities 109
Dave’s speech is actually quite comprehensible, but to have a conversationwith him certainly takes more time and attention than talking “through”his wife. Another participant, Barb, talked in general terms of feeling verywelcomed at church, but when asked about how she was included, she said,
I still got the church, but I am not close to people. Cause they don’tknow what to say. So I don’t feel included as much. And the singing—Iwas a good singer—but I can’t follow the books. So I sing what I can . . .
Yeah, I got a lot of friends. But not as many as I should have.
Other participants related stories of the loss of friends; for example,Bob described some of his very close friends as fleeing, “like mice jumpingthe ship.” Jenny, the spouse of a stroke survivor, saw this scenario alreadybeginning in the hospital.
One thing that we did notice when we had the stroke is your friendsdrop off. The ones who are just uncomfortable with a disability . . . Theycame to visit him once in the hospital and just were very uncomfortablewith—and then you just never heard from them again.
Rick, a stroke survivor who has gained back most of his speech, summedup the general feeling of many of the others by saying,
One of the things that happens when you have a stroke is people thinkit is contagious. They kind of ignore you—not intentionally—they areafraid of you. They are afraid to converse; they don’t know what tosay . . . I didn’t lose my friends because I was teaching and so forth, butpeople were very reluctant to talk about it. And there was just this feelingof isolation.
Most churches incorporate nonverbal elements in their services as amatter of course, a practice that would seem to be ideal for stroke survivors,but difficulties in cognitive and linguistic processing can affect even thesemoments. One couple, Nancy and Vaughn, mentioned that the practice ofpassing the peace was very difficult for Nancy, although she recognized thatpeople saw it as chance to communicate their love to her.
Vaughn: “One of the things that came to light after the stroke was thatthe place you’re going to have the most difficult dealing with—”Nancy: “—is at church.”Vaughn: “Because you’re going into a situation where there’s people,that the visual, and the auditory, the noise, and—”Nancy: “—the stimuli,”Vaughn: “and someone will call her, and [with] any turn of the head, shecan end up falling.”
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Another participant, Drew, commented that he always fears going up tothe circle for communion because of the unspoken expectation that individ-uals should say something as they pass the elements to the person next tothem.
Drew: “There’s things that are, that I’m, we have to, our church has, youeat, you drink.”Jessica: “Oh, we have communion.”Drew: “Yeah, there’s one of the things. And, um, you have to say, andI can’t say it, you give it to the other person, it is called, what do theysay?”Jessica: “Well, it’s the body of Christ, broken for you, and . . .”Drew: “Yeah, you know, it’s like every other place that does that. But,you know, I can’t say that.”
These last two examples demonstrate that even in those parts of churchservices that manifest the communal aspect of the church in ways that appearon the surface to be very nonverbal, expect particular language is oftenexpected to be used. This expectation can be intimidating to someone whocannot depend on the ability to retrieve set phrases.
Purpose
The second salient disappointment these stroke survivors expressed wastheir struggle with why they had been “given” this stroke, why they had beenchosen to survive, and what this survival meant in regard to their purpose ina new life. Many of these survivors were told that if their strokes had been inslightly different places, they would not have survived. People are eager totell them that God must still have plans for them because of their miraculousrecoveries, but they rarely take their search for mission very seriously. Myown surprise at the intensity and frequency of this kind of response no doubtreflects the assumptions of many congregations that stroke survivors are fullyemployed just managing their own lives and working on rehabilitation, andthat the church community should not ask them to do anything beyond that.When survivors such as Bob, however, ask “why,” they reveal both angerand a search for a purpose.
Bob: “For about a month after I got out of the hospital, I didn’t want togo to church at all. I was like really mad at somebody (points up). I’mstill having issues that that a little bit. Even though it’s been a year, I’mstill trying to find out the why. . . . So, for what it’s worth, I guess, I’meducating people on something that no one else has. So (looking up andraising hands) is that my purpose now?”
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Stroke Survivors and Church Communities 111
Another survivor, Troy, made a similar connection between his survivaland a mission when he said, “I hope that everything does, in fact, happenfor a reason, and I have something that I’m going to contribute to somebody,and to be honest, I’m kind of impatient to find out what it is.”
Two of the participants who expressed the most frustration about lackof purpose in their lives happened to be individuals who had been extremelyinvolved in their church communities before their strokes.
Tim: “My faith is in the same place, but I don’t get involved in it tothe degree because before I was doing things, and now I’m not doinganything . . . I’ve always been real good with kids, but I don’t know ifthere’s a possibility that they could be scared by someone who doesn’tdo things normally . . . I was an elder and a deacon and a board memberon international missions, and so, I just don’t feel capable of those things. . . I’ve tried to figure out now what can I do, and I run into road blockson just about everything I can think of . . . you know, me being able todo some task other than punching an elevator to go up and down; Ithink I can do that.”
Another survivor, Nancy, had been very involved in the church as aworship leader and liturgist, but she was now struggling to find her place.
Nancy: “When I had my stroke, and I continued as an elder but justcouldn’t really do it all. You know, couldn’t do it as well. Took a leaveof absence first and then when I went back, I, I didn’t do nearly as muchvisiting as I should have as an elder, and I am very limited now in howmuch I can be involved in the church which makes me sad.”
Yet, another participant, Doug, recounted how he was now a townshiptrustee on the township board, attending weekly meetings. His participationin these local decisions was greatly appreciated by his local community, buthis church had not invited him to serve in any way. Often when the partici-pants were asked how they were included in their church communities, theywould reply, “We’re always mentioned in the bulletin for prayer” or “Peoplecome up, and the minister always shakes hands with you,” but respondentsrarely reported expectations that they play any kind of service role in theirchurches.
Places of Hope: Community and Purpose
Other stroke survivors told narratives that promoted alternatives to the lossof community and purpose that many others felt. For example, many yearsafter his stroke, Doug was struck with the dream of going to Africa. Manyfriends tried to discourage him from traveling in rather difficult conditions
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and removing himself from easy access to hospital care. One friend, however,took a leave of absence from work for 6 months so she could travel with him.Doug, amazed that she would give up 6 months of her salary, finished thisstory by saying, “I mean what people will do for you is almost unimaginable.”In addition, Doug’s church community asked him to serve and be a centralpart of their worship experience.
Hetty: “One time they asked him to lead communion before he was ableto read.”Doug: “I thought I could do it well enough from memory, and then Icouldn’t so I just called Chris up, and he stood there and read it.”Interviewer: “It was still a good experience, I imagine?”Doug: “Yeah, I mean, anything you do, like serving communion, it’s just,you, you knew that your life was still there.”
The community, despite being rather liturgically formal, was comfortablewith taking a risk and asking Doug to be vulnerable even in his alreadyvulnerable condition; for many in the congregation, the co-led communionservice represented the body of Christ better than their more orthodox ser-vices. Another participant from the same church was also asked to servewith his voice after his stroke. His wife Carol said,
One thing about worship is that his voice has never been as strong or asgood since the stroke, and he used to be a good singer, choir singer, andso he hasn’t sung in church, but now our music minister invited him tocome, said, ‘Josh, we need you. No matter how you sing, we want youin choir.’ So he’s joined choir.
In another church, Jenny described how her husband Jim acts as anauthentic intermediary for prayer concerns.
Jenny: This is another ministry that he has. He sits here for approximatelyan hour and a half to two hours every morning and goes through everyname that’s in there. People know that he’s a prayer warrior now, andwe get a lot of calls from church. And he loves to know answers and sothat he either crosses you off or writes the answer in there.
He and his wife both believe that his new verbal limitations have expandedhis awareness of the needs of others. An interesting feature of all thesealternative narratives is that the churches involved have asked each of theseindividuals to use their communication abilities in service of the churchdespite their speech and language impairments.
Other stroke survivors have ended up forming groups with people withsimilar types of disabilities. These groups can redress the lack of community
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they have experienced in the church at large, and they are often communitiesthat are completely led and organized by persons with disabilities.
Troy: “What I have really benefitted from is that there’s a group of peo-ple who are very much peers. We’re all brain-damaged in one way oranother, or handicapped. And we can get together for a while and telljokes, swap lives, solve the political problems of the world, drink coffee,and eat doughnuts. And it’s a very healthy thing for us, and I’m sure it’seven healthier for our wives.”Jenny: “They [the disabilities group] don’t really have a leader, but Jimdoes bring the videos for them to watch. They call him the chaplainbecause when the guys get to talking, and the jokes get a little bawdy,then Jim says, ‘I think we better pray.”’Rick: “Fortunately, I found out about this stroke support group. That hasbeen the most fantastic thing I’ve ever been involved in. They are sosupportive, so knowledgeable, so encouraging. I think the people onthat support group know more than most doctors about strokes. . . . Andthese people are on the Internet continually. They communicate witheach other. Part of my mission is to share enthusiasm with other peoplethat there is hope.”
Notice all the communication language in these final three examples. Theparticipants are “telling jokes, swapping lives, solving problems, talking,telling jokes, praying, communicating, and sharing.” There does not seem tobe a lack of communication, but communities based on humor, patience, anda mutual comfort with disability. The descriptions of these groups parallelthat of the many small groups most people are involved in, the four or fivebuddies who meet every week for breakfast and chew the fat, the coffeehours in an office break-room to complain or tell the latest funny story, orthe small group of friends informally meeting on the front porch for beer orwine, happy to talk or not, as the spirit moves. For many churches, thesetypes of moments are rare, yet they may be the best type of communitymoments for individuals whose communication is impaired.
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Anderson, R. (2006). The aftermath of stroke: The experience of patients and theirfamilies. Cambridge, UK: Cambridge University Press.
Carter, E. (2007). Including people with disabilities in faith communities. Baltimore,MD: Paul Brookes.
Covey, H. C. (2004). Western Christianity’s two historical treatments of people withdisabilities or mental illness. Social Science Journal, 42, 107–114.
Eiesland, N. (1994). The disabled God: Toward a liberatory theology of disability.Nashville, TN: Abingdon.
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Eiesland, N. & Saliers, D. (Eds.), (1998) Human disability and the service of God:Reassessing religious practice. Nashville, TN: Abingdon.
Giorgi, A. (1975). An application of phenomenological method in psychology. In A.Giorgi, C. Fischer, & E. Murray (Eds.), Duquesne studies in phenomenologicalpsychology, II, Pittsburgh, PA: Duquesne University Press.
Mairs, N. (1996). Waist-high in the worlds. Boston, MA: Beacon.Mishler, E. G. (1986). Research interviewing—Context and narrative. Cambridge,
MA: Harvard University Press.Thomas, S. P. & Pollio, H. R. (2004). Listening to patients: A phenomenological
approach to nursing research and practice. New York, NY: Springer.Webb-Mitchell, B. (1996). Dancing with disabilities: Opening the Church to all God’s
children. Cleveland, OH: United Church Press.Young, A. (2007). Theology and Down syndrome: Reimagining disability in late
modernity. Waco, TX: Baylor University Press.
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