DeAnne called me at the beginning of October to tell me that her mother, Donna, was dying. By the end of December, Donna had passed.

It’s hard to be with someone who is facing death. Most people confronting the reality of death are scared. And their fear can create a tension that runs through the whole conversation. Nobody knows exactly what to say, and the impulse of our culture is to pretend like death will never come, which runs counter to the reality of someone in a situation like Donna’s.

For this reason, most of us avoid entering spaces with the sick and dying. In many cases, folks who are staring at the reality of their death end up facing those realities alone. Increasingly, we know that it’s important to pay attention to the ways that people are marginalized for their race, sexuality, ethnicity, or socio-economic status, but we rarely talk about how illness and death can also be a marginalizing factor in the lives of many people.

Donna had attended worship at our church between 2019 and 2021. Some health concerns and the changes that came during the COVID-19 pandemic disrupted her participation enough that she fell out of the habit of being in community. And yet, she remained a woman of faith. On September 23rd, 2024, Donna was diagnosed with an aggressive form of ALS and was told she had between three and twelve months to live. Faced with imminent death, Donna told her daughter DeAnne to contact me, because Donna still considered me to be her pastor. Soon after she contacted me, I was able to visit Donna in her home.

Over time, ALS takes away a person’s ability to use the various functions of their body, but their mind remains intact. By the time I visited Donna she had already lost the ability to walk and to speak. She would do her best to communicate verbally, but also had a small tablet to write on. I started out visiting Donna weekly and eventually transitioned to visiting every other week. DeAnne would sit with us the whole time helping to translate and participating in our conversations herself.

A Missional Perspective

I grew up in the church and I’ve had a missional perspective on ministry most of my life. In the last few years, as I’ve worked with organizations like Forge America, the philosophy has crystallized in how I lead my church and how I lead my life. It’s become normal for me to enter marginalized spaces. So when I get a call from someone like Donna–someone who is in a position that other people might not understand or that might make them uncomfortable–it becomes a priority for me to find a way to walk with them. 

A central tenet of embracing a missional posture is that we intentionally go to the margins. We don’t wait for those who need the gospel to come to us. We go to them. This is the model of God’s ministry in Christ, and it’s the pattern of love that we see from our Creator throughout the Scriptural narrative.

All too often people resist this going because they think they need more shaping first. We’re tempted to believe that mission and formation are mutually exclusive. We want to be sure that first we are formed, then we can go. But we’ll never be completely formed this side of heaven, and if we wait for the moment when we become fully ourselves to reach those caught in the dark, we’ll never actually go.

The truth is, formation happens IN mission. We are shaped in the going, and at the margins, we discover something new about ourselves.

In entering marginalized spaces, and learning to rely on the Spirit to carry the gospel through us, we don’t need to be shaped or formed before we go. Mission shapes us in the going. Share on X

Experiencing Going With Donna

The first time I visited Donna, I closed our time together by inviting Donna and DeAnne to make lists of Donna’s questions. On each subsequent visit we would begin by going over the questions they had accumulated on a notepad since I had last been there.

In that first visit with Donna I heard her talking about her concerns about her impending death, but also about the disease itself. ALS patients are slowly (or in Donna’s case, far too rapidly) being imprisoned in their bodies. Donna was terrified of being paralyzed, and she didn’t want to go through the pain of the late stages of her disease.

I had to develop new ways of talking about what it meant for our personhood not to be completely bound up in our bodies. I spoke with Donna about how to calm herself through mindfulness practices that could help her to receive the peace of Jesus in the moment.

Early on Donna asked me how it would feel for her soul to separate from her body.  She had grown up with a legalistic, ‘heaven-and-hell-centric’ picture of the afterlife that had left a residue of fear when she considered what it would mean to cross over from this life to the next.  

At one point she asked me if it would be considered suicide if she stopped eating. I answered the question behind her question by identifying that she was feeling shame about not wanting to go on living the way that she was living. I confirmed that when she was young she had been told that suicide was the one unforgivable sin. Then I clarified that all of our sin is already forgiven in Christ, and that her trust doesn’t need to be in her action or inaction, but in the faith that has been given to her by the Spirit.

A central tenet of taking a missional posture is that we intentionally go to the margins. We don’t wait for those who need the gospel to come to us. We go to them. This is the model of God’s ministry in Christ, the pattern of love. Share on X

An hour at a time, I would sit with Donna and DeAnne. Sometimes Donna’s husband Hugh would join us. Donna’s blind dog would bump around the living room trying to find her to get up on her lap. We talked about the questions that Donna was asking, about finding peace in the middle of one the scariest seasons in her life, about the love of Jesus, the grace of God, and the power of the Spirit.

Through it all, I realized that I wasn’t only speaking with Donna. I wasn’t only sharing the gospel with her. I was receiving the gospel myself. I was merely passing along what God was giving to me–the truth of the gospel and the promise of salvation. And in sharing those things with Donna, I myself was receiving them in new ways. I’m different now than I was before, because Jesus shaped me in the experience.

Donna died on December 23, 2024. I performed her funeral exactly one month later. I was sad that we live in a world where ALS exists, and that a person like Donna had to go through what she went through. I also grieved that we wouldn’t have our conversations anymore. Spending time with Donna in her time of need made me a different person in some of the best possible ways.

Going to the margins is scary, precisely because so few people go there, and it can be unknown. There’s no playbook for what it means to enter the places that our society tells us not to enter. We often don’t know what to say or what to do, but in entering marginalized spaces, and learning to rely on the Spirit to carry the gospel through us, we discover new things about who Jesus is shaping us to be. We discover how God designed us to live as neighbors and we receive a new insight for what it means to partner with the in-breaking Kingdom.

We don’t need to be shaped or formed before we go. Mission shapes us in the going.

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The truth is, formation happens in mission. We are shaped in the going, and at the margins, we discover something new about ourselves. Share on X

*Editorial Note: Missio Alliance is pleased to have Forge America as content partners. Forge America is a network of practitioners who join in the everyday mission of God. On the last Tuesday of each month, articles from missional practitioners within the Forge network will be featured in our Writing Collectives. ~MA