Kay Toombs, a Christian, professor, and author who lives with disability, returns to the podcast to explore the transformational power of intentional Christian community. Over decades living with multiple sclerosis (MS), Kay has reflected and taught on issues related to illness, disability, caregiving, and healing, as well as the role Christianity can play in creating a sustainable culture and caring communities.
Kay Toombs is associate professor emerita of philosophy at Baylor University in Texas. In her work she explores the ways in which contemporary values and the context in which we live our lives impact our efforts to develop a sustainable culture and to form caring communities. In her work related to illness, disability and healthcare, she combines her training in philosophy with her experience of living with neurological disease to reflect on the experience of illness and disability, the care of the chronically and terminally ill, the relationship between health care professionals and patients, and the meaning of suffering and healing, both in the context of Western culture and within the context of intentional Christian community.
Explore Books by Kay Toombs:
www.homesteadheritage.com/books; www.amazon.com/books
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Crystal Keating:
This is the Joni and Friends Ministry Podcast and I'm your host, Crystal Keating. Each week we're bringing you encouraging conversations about finding hope through hardship and practical ways that you can include people living with disability in your church and community. As you listen, visit joniandfriends.org/podcast to access the resources we mention or to send me a message with your thoughts.
At the age of 29, Kay Toombs was diagnosed with multiple sclerosis, an unpredictable disease of the central nervous system that caused paralysis and impacts every part of her life. Kay Toombs is back on the podcast today to explore the beauty of vulnerability within an intentional Christian community.
Kay Toombs:
Let me talk about the values of Christian community, but first of all, I want to say that serious illness shows us in a concrete way that holding onto the drive for independence, autonomy, and absolute control over our lives is an illusion. Illness clearly demonstrates we're not in absolute control over our lives, and it also shows us that we need one another. We need others to accompany us on our journey. Also, as many seriously ill people have shared, serious illness causes us to stop whatever we are doing and think carefully about what is really important in our lives.
And for many people, like for me, illness also provides the opportunity and the impetus to reach out to God in a new and deeper way. You know, as the Psalm says, to reach for the rock that is higher than I. So, in reflecting on the alternative perspective of Christian community that transforms the meaning of illness, suffering, and dying, I want to say how Christian community has a radically different value system. The foundation stone of Christian community is self-sacrificial love. So, like I said, we are committed to follow the commandment to lay down our lives for one another. So, caregiving is a given. It's not something that's extraordinary because as Paul says, we're knit together in love.
So, it turns the perspective on individualism versus relationship upside down. The emphasis is not on radical autonomy and independence, the emphasis is on living our lives in relationship; in relationship with God and with each other. So, the shift is from independence to interdependence. We recognize that we need one another.
And you know, I think of Paul's scripture where he talks about, can the hand say to the foot, I don't need you. Can the eyes say to the ear, I don't need you? We see that the body of Christ is an organic unity and that each person in the body is of intrinsic worth and has a particular part to play in the body.
It's like a beautiful tapestry. You know, each piece of thread, if you just took one piece of thread out, you wouldn't be able to see a picture. But when you see it all together, you see the picture. So, in sharing our lives together, like I said, caregiving and care receiving is not a burden. It is actually, we can see it as a form of communion, and it's an opportunity to develop deep and meaningful relationships with one another.
We see illness as an opportunity for opening us up to the miracle of relationship. When I think of my husband's dying, 15 ladies in the community helped me to take care of him for the last three months of his life. And, you know, the bonds that were developed between us, the bonds of love are bonds that will never be broken.
And in caring for Dee with love, they enabled him to be who he was. And I've talked about caregiving is a reciprocal relationship because the caregiver is not the only one who gives, you know, and the culture. The caregiver is the only one who gives, and the care receiver is the only one receives.
That's absolutely not true. The caregiver receives a lot from the person to whom they're giving care. And they also receive a lot in what it does to their character. It enables them to show love to this person in a very special kind of a way. So, in the context of where people live their lives together, we feel that everybody is worthy is, is of the image of God that it's possible to share one's vulnerabilities and to trust other people in a way that it's not possible to do that very often in the wider culture. So, the shift too is from instrumental worth to intrinsic worth. So, the value of an individual, it has nothing to do with what their position in life is, what they do. There's an intrinsic value to the individual, and since it's not tied to physical fitness, youth, beauty, worldly achievement, it means that a person with a disability, the shift is from disability to uniqueness. So, when I think of people in our community who are living with disability, I don't think of them as a person who's living with a disability.
I think of them as this person who plays this unique part in our community. I mean, I think of a young man who's a quadriplegic who has an amazing place in our outreach to people in nursing homes. I think of the young person with Down syndrome who sings in the children's choir and who takes part in everything we do.
The young boy with autism who's become a very active member of our community. And so, you know, these shifts allow those of us with chronic illness and disability to live out our lives to the best of our abilities. I mean, I, I have this wonderful example of community. I recently was able to go to Israel for the first time in my life.
It was amazing experience. And of course, we went to the Sea of Galilee and my friends wanted to take me on a small boat. But we couldn't do it because you had to go down a flight of steps. I had to be carried over this floating dock and carried onto the boat and we couldn't do it. So, we went on a big boat.
But a few days later, several people from our community arrived to attend the wedding that we were at. And so, we met them at the Sea of Galilee, and five young boys from our community carried me in my wheelchair down the steps on the floating deck into the boat, all the way out of the steps. So, I said, this is the wonderful metaphor for community, and it's really the case that in the body of Christ, we can enable people to be what they are.
Crystal Keating:
Yes.
Kay Toombs:
You know, and when my husband was dying, as been the case with many other terminally ill people, members of the body comes together to support the person. Children will come over and draw pictures for him and sing to him and so on. So young people in our community understand that there are seasons in life. They understand that there are things such as illness and dying and well, one lady was dying of cancer, and she couldn't sleep at night. So young people volunteered to go and sing for her through the night. And you know, in that context, it's possible for people to live up to the peak of what they can do. You know, the Bible says they know us by our love for one another. So, in the care of vulnerable people, within the context of the body, the community can be a witness that the power of love really does overcome the power of death.
Crystal Keating:
That is so true. And you know, I love what you said about in the body of Christ, we can enable people living with disabilities, whether it be Down syndrome or autism, or in your case multiple sclerosis, or your husband Dee with cancer to be all that God intended them to be. And I love that shift of mind from, again, as you started our conversation with the focus on the illness to what about the rest of my life? And that is God's grace to us. Well, Kay, as we know, living with a chronic debilitating condition is hard for the one who has it, and the caregivers who support the person with the condition. As well as for the loved ones who witnessed the struggle. So, as you look back on your life, how has God used these many challenges to reveal the Lord's love for you and your husband and his purposes through your suffering?
Kay Toombs:
Well, as I look back on my life, you know, one of the advantages of getting old is that you really can look back on your whole life, and I can see that God has been there all along, even when I didn't acknowledge his presence, even when I didn't know his love in the way that I do now. You know, when I was overwhelmed with the chaos of my life, God brought these people into my life, brought me closer to him in a way that I could then come to really know him.
And God has used my illness. He's used my illness as the springboard for my work. He's opened doors to make ways for me to share my reflections with other people. And that has given me such joy and such meaning in my life, and I'm so grateful for that. And without the illness and the suffering that I have been through, I wouldn't have the ability to give that kind of a testimony. So, also my illness and Dee's dying brought me into a closer relationship with God because I recognized my need for God in the ultimate way. And at the time that Dee was diagnosed, God spoke to me, the scripture, you came to the kingdom for such a time as this and I felt it in two ways. I felt I'd come to the kingdom to be a believer so I could be for my husband what I needed to be in the last months of his life. And I've come to the kingdom in the sense that I've come to a community of God's people who would help us in this particular trial and in this particular challenge and would bear witness to the power of love, overcoming all the challenges including death.
And then in sharing the last six months of my husband's life, I felt the presence of God so strongly. And I thought of a song that says you make at the bedside a cathedral of love. And you know the love of Jesus, and this is where the community comes in, the love of Jesus came to us in the prayers that was said. If Dee was ever in pain, we could call them, ministers would come and pray. The prayer chain, we have a 24-hour prayer chain. The prayer chain would pray for him, and he always went into a deep sleep when people were praying. And you know, Jesus came to me and the people who visited every day in the sisters who cared for Dee, in the sisters who came and stayed overnight so they could help me in the night, in the children who came and sang for him and drew pictures for him.
In the tears and laughter, we shared in the people who sat by his bedside and held his hands, and in the friends who were present with me when he took his last breath. And then in the last six months of Dee's life, that last six months, bore witness to me and to others of the truth of how beauty can come from ashes in the most difficult of circumstances, as the reductions of illness became greater and greater and our boundaries constricted more and more, the love we felt for each other became greater and greater. And in the end, there was nothing left but our love for one another, the love we felt from others, and the love we felt from God.
And as I look back on that time, as absurd as it sounds to say it, I remember most the joy. And then another great gift that the Lord gave me, the night that Dee died. I spent the night in the room where Dee and I had slept for many, many years. And I felt the Lord tangibly present and all night long all I could hear was the voice of one of our singers singing the song “I Know My Redeemer Lives.” I felt a celebration, not simply a mourning. And you know, in the midst of his illness, Dee shared, he said, this is not the end, it's a new beginning. And that night, sitting there listening to, “I Know My Redeemer Lives,” I knew that Dee had embarked on his new beginning. And without the grace of God, I would not have been able to go through any of this. But the grace of God has enabled me to do it. For that, I am very grateful.
Crystal Keating:
And we are too, that we can even from afar, bear witness to all that God has done and is doing in your life, Kay. Dr. Kay Toombs is the author of Living at the Boundary: Healing an Incurable Illness and How Then Should We Live: Two Opposing Responses to the Challenges of Illness and Suffering, which will be featured in our show notes, links to those books. You can learn more about Kay's story and dive deeper into those concepts. Kay, thank you so much for joining us on the podcast. It's been such a blessing.
Kay Toombs:
Oh, you're more than welcome. And thank you for inviting me.