Strokes can leave survivors with a variety of impairments—physical, communication, cognitive, and emotional—depending on the part of the brain involved. Impairments can be involved or minor. In his memoir, The Diving Bell and the Butterfly, Jean-Dominique Bauby describes life with locked-in syndrome, in which a stroke completely paralyzed him except for some voluntary movement of his head and eyes. On the other hand, some stroke survivors have no outward symptoms whatsoever or their impairments are temporary.
Stroke survivors who are involved in churches and experience permanent losses frequently find their churches to be mixed blessings after their strokes. In a journal article*, Peggy Goetz, Professor of Speech Pathology and Audiology at Calvin College, says that churches typically respond well in the immediate aftermath of a stroke but pull away from survivors and their loved ones after the initial crisis. “Most people in church. . .assumed that the church’s responsibility was to provide support during the crisis, pray for healing, and hope for a full recovery. Most congregations did not know what to do after the crisis period when stroke survivors could no longer serve or socialize as everyone else in the congregation did (p. 249).”
Deepening their isolation, about one-third of stroke survivors experience mild to severe communication impairments. Worship services, especially in Protestant churches, tend to be word-heavy, and connections people make before and after services rely on what Goetz calls “fast communication” which she compares to fast food. Other church activities such as small group Bible studies or prayer groups are not much better, because conversations still tend to focus on “getting the business done,” not on the connections made between participants. As a result, group members have little patience for someone who needs a lot of time to express herself as a result of her stroke.
Goetz notes that if someone’s speech is slow they are judged to be incompetent and their contributions to conversations are devalued. Not surprisingly, many stroke survivors and their loved ones withdraw partially or completely from church involvement, even those who had been deeply involved in church life pre-stroke. Stroke survivors, their loved ones, and fellow church members tend to focus on a goal of recovering lost abilities rather than on imagining new possibilities for the "new normal" of the stroke survivor.
Goetz’s research found two areas especially ripe for helping stroke survivors reengage with church life: social relationships and developing a sense of purpose.
Loss of Social Connections
Many stroke survivors, especially those with communication difficulties, lose friendships. Some only have contact with others at church during the “greeting” time (when others won’t have to wait for them to respond). Goetz describes one stroke survivor and his wife who received baked goods at their home, but the fellow church member only dropped them off when they knew the survivor and spouse were not home – ensuring that they would not have to interact. For churches to become places of hope and healing, Goetz suggests:
Stroke survivors with communication disorders are usually left out of conversations with more than one person due to the fast pace of small talk. They may need to be intentionally involved and also given sufficient time to voice their thoughts. Spending relaxed, quality time with them outside of church (e.g., for coffee or a meal) is vital since the church setting is not typically conducive for slower-paced conversations. (p. 261)
Loss of Purpose and Limited Opportunity to Serve
After a period of recovery, many stroke survivors wanted to reengage in church activities, but churches didn’t always find a place for them. A critical component of belonging to a community is “being missed” if one is not there. If the survivor has no responsibility on which others are counting, then they will not be missed if they do not participate. On the other hand, those that found ways to get involved, even in what Goetz calls “small jobs”, took pleasure in being able to serve others, jobs such as making coffee, counting people, and bringing snacks. Goetz writes, “The best outcomes for stroke survivors in regard to a sense of purpose were when they were able to find some regular opportunity to serve (p. 253).”
Goetz lists several other helpful ideas for accommodating too, including these:
- Sermon outlines in the bulletin or visual images on a screen support listening comprehension. Some stroke survivors were given their minister’s outline or notes before the service. Stories and examples are often easier for stroke survivors to comprehend.
- Mention that during communion or the passing of the peace you can greet someone with a smile or nod. Also create an environment that is open to disruptions and “mistakes.”
- Stroke survivors appreciated empathy for their challenges, seen in comments such as, “That must be immensely frustrating.” (all on p. 261)
Fellow church members can make a critical, positive difference in the lives of stroke survivors and their loved ones when they make the effort to welcome and accept them as they are, with patience and grace.
For a first person perspective, listen to a stroke survivor Rog Slagter talk about his own experiences (the second video on this page).