At age 29 Kay Toombs was diagnosed with multiple sclerosis (MS), an unpredictable disease of the central nervous system that has since caused paralysis and impacts every part of her life. Living with disability and chronic illness for decades has inspired Kay’s life work. As a Christian, professor, and author she has reflected and taught on issues related to illness, disability, caregiving, and healing. Kay joins the podcast to explore the meaning of illness and share how wholeness is possible for all people, even in the face of disability, terminal illness, and death.
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.
Living with multiple sclerosis since 1973, Kay has expressed how her life experience with disability and illness has driven her work. In an interview for the Baylor Arts & Sciences publication “Collegium,” she said:
“The whole focus of my work has been to show the difference between the patient’s experience and the physician’s perspective. I began this work when I spoke as a patient to physicians and was puzzled at their responses. We seemed, even though talking about the same thing, in effect to be talking about two different things.”
Explore Books by Kay Toombs:
www.homesteadheritage.com/books; www.amazon.com/books
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Crystal Keating:
At the age of 29, Kay Tombs was diagnosed with multiple sclerosis, an unpredictable disease of the central nervous system that caused paralysis and impacts every part of her life. Living in a wheelchair for many years has inspired Kay to reflect deeply on issues related to illness and disability, the care of the chronically ill, and the meaning of healing.
Kay joins us to explore the meaning of illness and the beauty of vulnerability within an intentional Christian community. Welcome to the podcast, Kay.
Kay Toombs:
Thank you very much, Crystal. I'm very happy to be with you. Thank you.
Crystal Keating:
Well, I am so happy to be able to speak with you and Kay, would you please take us back to the time in your life when your health began to change, and you noticed your body beginning to respond differently than it had before?
How did you make sense of your diagnosis and what was the prognosis for the future?
Kay Toombs:
Well, at the time I was 29 years old, I was working full-time in an administrative position at a university. I was thousands of miles away from my family in England, and sadly, at the time I was in an unhappy marriage, and I was not a believer. So, I didn't have much in the way of support. When I began to have problems with my body, and it began with problems of vision in my left eye, and I basically lost the central vision in my left eye. So, I went to an optician who sent me to an ophthalmologist, and he diagnosed optic neuritis.
Now, while I was in the doctor's office, I happened to pick up a magazine and it had a very sad story about a woman. On one side there was a photograph of her standing, and on the other side, there was a photograph of her in a wheelchair looking helpless and hopeless. And it said that this woman had a disease called multiple sclerosis, which at the time I had never heard about. So, three days later I went to a neurologist who said, there's this disease called multiple sclerosis, and that's what I think you have.
So, recalling the story in the magazine, my first question was, will I end up in a wheelchair? And his reply was, I don't know. I'm afraid I can't give you any guarantees for the future, which I interpreted to mean that probably tomorrow I'd would wake up and not be able to move. I then, unfortunately, was shown a video about MS that was intended to get people to give money for research, and it was focused on a worst-case scenario, and I was sure this was the blueprint for my life.
So, I add those details just to show how the diagnosis of an illness can be shaped by what you have been exposed to in terms of what the illness means in somebody's life beforehand. And one of the things I want to be sure to say is that this is almost 50 years ago. So, in those days, multiple sclerosis was a very different diagnosis to the diagnosis it is now because there were no disease-modifying drugs, and so it was a completely uncertain prognosis.
All I knew was that the disease was incurable and progressive. So, what happened? Well, MS is an extraordinarily variable disease. No two MS patients have the same symptoms. But since it is a disease of the central nervous system, it can affect almost everything. It can affect vision, sensation, movement, bowel and bladder function, almost everything.
So, in my own case, for 16 years, I would have an attack, and then I would have fairly long periods of remission. And the attacks were always different. The vision happily came all the way back. But then I experienced weakness in my leg, so it made it difficult to walk. At one time, I lost the feeling in one leg, and it felt like my leg was completely disassociated from my body.
I experienced loss of balance. So, I needed to hold onto furniture and walls as I walked around the house. I had bladder and bowel problems, and always I had fatigue, and I think many MS patients do suffer from debilitating fatigue. And the problem for that, is that it's an invisible symptom. And so, people don't understand when somebody who has this kind of an illness talks about how they're not able to do something because they're too tired.
Well, over the years as my illness progressed, I, I stopped having the acute attacks, but it went in sort of a slow, gradual progression of disability. And I would retain more of the symptoms. So first I had to use a cane to walk, then I used a walker, then I used a wheelchair. And gradually, I ended up using the wheelchair full-time.
I've been in a wheelchair now for over 20 years.
Crystal Keating:
Wow.
Kay Toombs:
But I've seemed to have reached a plateau. So, what did the prognosis mean for me? Well, at first, I was terrified. I, I was sure I would be disabled immediately. I interpreted everything as a sign.
If I dropped a pencil, I thought, oh, I'm going to lose use of my arms. And finally, I realized that my experience was such that not much was happening. And I also made a decision. And the decision was I could not live in constant fear. So, I learned to shorten my vision. And I think this is very important for people who've been given a prognosis that is uncertain because what we tend to do is project into the imagined future, which we always imagine is negative.
And so, I wouldn't allow myself to do that. I decided that I would take each day as it comes. And I also learned to focus on real and not imagine difficulties. And I found and have found that there are always ways to accommodate changes in the body.
For example, instead of standing to lecture and getting very tired, I could use a stool. I could sit on a stool. When I was going to school instead of worrying about whether I would be able to complete a degree, I focused on getting through the one course I was taking, and learning to do that gave me a certain amount of control in what was essentially an uncontrollable situation.
And one thing that really helped me was that I had read Victor Frankl's book, Man's Search for Meaning. Frankl, for those of you who don't know him was a Holocaust survivor. He lost all his family in the Holocaust, and what he said was that everything can be taken away, but the last of human freedoms, the freedom to choose one's attitude in any given circumstance. And for me, I found that very freeing because it gave me control no matter what the situation was. I always had a choice as to how to act in that circumstance.
Crystal Keating:
Yeah. That is so key. And you know, Kay, it sounds like you had a season of living with a lot of fear. You briefly mentioned being in an unhappy marriage and not being a believer. Maybe you could talk a little bit about the relational changes that happened in your life during that time, and even how you came to really know God and have a deep faith in Jesus Christ. Where did the transformation internally take place for you?
Kay Toombs:
The thing is that when I was overwhelmed with the chaos in my life, particularly at the time that my marriage failed, I had a strange thought and the thought was, there must be some meaning to this.
I started to pray, and God brought into my life a sweet Christian couple. They were actually the parents of a student who worked for me, and I started spending every weekend with them, and they took me to their church. They prayed for me, they prayed with me, and I began to feel the reality of God. I began to feel that I was not alone.
And then of course, God gave me his greatest gift, and that was to reunite me in a miraculous way with a man who became my husband and to give his 32 wonderful years of marriage. And he was the one really who supported me in everything that I did.
He supported me going to school. He supported me teaching. My husband and I lived in South Africa, and we were part of a church in South Africa. And at the time, apartheid was in force. And you know, the separation of the races, the government had this very strong policy.
And the church that we belonged to, if you preach the Gospel, that every person was in the image of God, you could be thrown into prison for saying something against the government.
And I was very, very impressed by the fact that here were Christians who were standing up for what they believed that they weren't part of the culture.
And then I came back to Waco and I, I looked for a church like that. And at the time, I couldn't find one. And so, I kind of gave up. I decided education was the answer. If I could teach students to see the other person's perspective, they'd love one another.
I was very naive. And then one day I, I heard about this place called Homestead Heritage where they had a pottery shop, and I was introduced to this community of people who really lived what they believed and really stood apart from the culture.
And so, I kept coming back, kept coming back, kept coming back, and I saw how families were held together, how people loved one another. You know, there were no barriers between people. People came from all different backgrounds. They all got together, and they all loved one another, and they all helped one another. There had to be something transcendent holding this together that people had to be committed to something other than their own personal desires, wishes, goals. And I realized that what these people were committed to was to the two greatest commandments. I need to love the Lord my God with all my heart, soul, mind, and strength, and to love my neighbor as myself.
For the first time in my life, I realized that God was real and that he was calling me to be in relationship with him and in the context of these other people.
Crystal Keating:
Well, Kay, I just love that you are part of a Christian community where they really do live out living a sacrifice that they would love God and love their neighbors as themself. Let's fast forward to the years you were writing books such as The Meaning of Illness and How Then Should We Die, which is a response to physician-assisted suicide, and you’re teaching college students at institutions like Baylor University. How has your experience shaped the work you're doing now?
Kay Toombs:
Well about 10 years after I was diagnosed with MS, I studied for a graduate degree in philosophy. And because of my experience living with illness, I wanted to write something about the meaning of illness, but I didn't know what to write. And I read an article written by a physician called, “I Can't Hear You While I'm Listening.”
And what he was talking about was, if you have this stethoscope in your ears and you are listening to the patient's heartbeat and they talk to you, you can't hear what they're saying and he drew a comparison between that and if you focus on what the disease is doing to the body, you don't understand anything of the patient's actual experience of illness.
And I said, well, there is my topic, because I had been sort of concerned about the fact that when I went to my physician and we talked about my illness, we seemed to be talking about two different things because he was focused on what was happening to my central nervous system, and I was focused on what was happening to my life.
So, I wrote that book. And then a doctor said to me, well, you have something to share with doctors, but they won't take you seriously unless you get a Ph.D. So that's when I did my try it and then see if it'll work out. And I went and I got my Ph.D., and I wrote again on the meaning of illness, and that book was published and that opened the door.
God opened the door, for me then to go speak to nurses, doctors around the country, up around North America and Europe, and to tell them how important it is to pay attention to the patient's experience, particularly in the case of chronic illness and terminal illness, where you can't just fix something and everything is okay.
But at that time, what I basically was talking about was how cultural values shaped the experience of illness, and disability, because I was not a believer. Then when I came to God, the Lord showed me how I could use what I had talked about with regard to how cultural values shaped the experience. To contrast with that, with the Christian values and the values of Christian community that transform the meaning of illness, suffering, and dying.
And so that's how the books Living at the Boundary and How Then Should We Die came about. And so why did I write about physician-assisted suicide? Well, I was always interested in end-of-life issues and medical ethics and became very concerned about how cultural values have pushed us into the acceptance of physician-assisted suicide and what that tends to say about people with disabilities. The assumption is they don't have lives that are worth living. And so that's what caused me to go ahead and write that book. And then when I was teaching at Baylor, I said, well, this is an opportunity to talk to students who are gonna be doctors and nurses.
And so, I started a medical humanities course where I would get pre-med students and we would talk about the experience of illness. And we read literature about the experience. And it really was my experience that these kids will come in. They were young, healthy. They didn't know anything about illness or disability. But by the end of the class, they really did have a sensitivity towards the issues that those of us living with illness do face.
And so, when I look back on my life, the one thing I know for sure is that if I had not had MS, I would never have considered focusing on these topics, and so my illness has been the foundation for all my life's work and has given me a wonderfully meaningful life for which I am very grateful.
Crystal Keating:
Amen. Well, you referenced your book Living at the Boundary, Healing and Incurable Illness, and in it, you explain that the word healing shares the same root as the word whole, which is really fascinating. So why is this significant in light of what it really means to heal and be healed, especially when facing the challenges of something like MS or a chronic illness?
Kay Toombs:
Well, it is very important to recognize that there is a difference between curing and healing, and that one can be cured and not healed.
And one can be healed and not cured. What healing means is that it's possible to retain personal wholeness and integrity, a feeling of self-worth, a sense of meaning in your life regardless of the physical integrity of the body. So how can a person be cured and not healed? Well, I think of perhaps somebody, a woman who has a radical mastectomy because of cancer and for whom the change in her body is a continued source of suffering.
In that case, she may have been cured but not healed because she doesn't feel whole. And, you know, there was an interesting study where they talked to cancer patients, some of whom were terminally ill, and two-thirds of them said that they felt themselves to be healthy. And by that, they meant that they felt a sense of wholeness in their lives.
Now, the interesting thing is that this sense of wholeness was tied to what they called healing connections. It was tied to the sense of connectedness that they had to family, to other people, to friends, and for them, their sense of connectedness to God. And people who were most suffering were those who felt a sense of alienation, a sense of isolation from self and others, and a sense of meaninglessness.
So, one of the things that I do say to people who have a chronic illness, you can be healed in the sense that I feel that I'm healed in the sense that I have a purposeful life. I'm surrounded by people who love me. I have connections, but I'm not cured and I'll never, never be cured.
But the other thing that's very important is that healing is not a solitary endeavor. We need other people to help us to heal. So, every single one of us, we don't know how to be a doctor or a nurse or a healthcare professional, can be a healer because we can be with others, before others when they're going through the challenges of illness and help them to really feel a sense of healing.
Crystal Keating:
Well, I would love for you to talk more about that. I know that the values of contemporary culture have reshaped the meaning of illness. So how do you challenge that belief as someone living with a degenerative disability and being surrounded by a truly authentic Christian community for many years now? What does that look like in your own life and how has that played out? You know, like you said, in your healing, you have found purpose, and part of healing means deep connection with God and with others. We could not applaud that more. I think, yes, amen. It's isolation that actually causes a disconnect between so many things that God intended as good.
Kay Toombs:
Right. Before I talk about the alternative values of Christian community, let me just say a couple of things about the values of the culture that are very unhelpful to those of us who live with illness and disability. Actually, to all of us, there is a very unrealistic emphasis on autonomy, on radical individualism, on independence, which de-emphasizes relationship. You know, we're all told, we're able to stand on our own two feet, look after ourselves, do our own thing. So, dependence on others in contemporary culture is considered to be weakness. Consequently, elderly people, people with disabilities, people who have to ask for help feel that they are a burden. And they may very well be told that they are a burden and full-time caregiving is seen as a kind of negative form of self-sacrifice. I should be able to do my own thing. I don't know why I have to look after anybody else. And it's very difficult for people to admit vulnerability in a culture that's characterized by a competition, jockeying for position, lack of trust, and also in view of the very negative attitudes that we have about disability.
I mean, there is an emphasis on youth, beauty, physical fitness as an end, not necessarily as a means. So, in the eyes of the able-bodied, and many of us want to say the temporarily able-bodied, people with disabilities are often considered to have lives that are not worth living.
And you see that very much in the case of physician-assisted suicide and euthanasia. It was interesting. They did an interesting study of emergency care workers who are the first people in the hospital to see somebody who comes in with a spinal cord injury. Only 18% of them said that it would be acceptable to them to live with a spinal cord injury. Whereas 92% of people living with a spinal cord injury said that they were very happy to be alive and they had a meaningful life. So those are the main values that make it very difficult to live with illness.
Crystal Keating:
Thank you for listening to part one of my conversation with Kay. Join us for our next episode to hear part two.