Mary Tutterow

Bruce Adema: Hello, and welcome to this episode of the “Love, Henri” podcast, which is produced by the Henri Nouwen Society. My name is Bruce Adema, and I’m the Executive Director of the Henri Nouwen Society, part of a great team that encourages spiritual transformation through the writings and legacy of the great spiritual guide Henri Nouwen. If you’ve appreciated Henri’s wisdom for a long time, or perhaps have just been introduced to it, I encourage you to sign up for the daily meditations on our website, henrinouwen.org, and be reminded every day that you are a beloved child of God. Our guest today is Mary Tuttero. Mary lives in South Carolina and is an author, speaker, and workshop leader. Her books, “The Heart of the Caregiver” and “The Peaceful Caregiver,” and the wisdom that she has gained come from her family’s situation and her deep reflection on it. Links to her website among other things, will be in the show notes that accompany this podcast. Mary, I just want to thank you for joining us on the Love Henri podcast, and we’d appreciate you beginning by telling us about your story and about your journey with your family.

Mary Tutterow: Well, thanks Bruce, and I really appreciate being invited to be here. I have always been someone who was raised in the church, but I was always just a pew sitter until our first child was born with a seizure disorder. She was having about 500 seizures a day, and she has had several brain surgeries. Throughout the process, we were told all along that if she lived, she would be mentally and physically challenged in a very profound way. So she’s now 32 years old. We didn’t expect her to see her second birthday, but she’s 32 years old! During this journey, we also have a typical son that we were raising. And then my mother-in-Law got cancer and eventually dementia. My husband’s an only child, so I found myself caring for a whole lot of people with very intense needs. At first I felt that I was completely overwhelmed. I’d lost myself. I’d had to give up my career. Our marriage was in trouble, our finances were in trouble. I was in mental and spiritual trouble.

Mary Tutterow: And, um, I began to find answers in God’s word and journal about them. I underwent a transformation through caring for my mother-in-Law, as well as my daughter and my typical son. And I wrote about it just because I could see on the hospital room floors where I was sleeping and in the waiting rooms and all the other places where I went, there were other people who were really struggling with having to lay down their former lives to sacrifice, to take care of someone else. That’s how this whole heart of the caregiver ministry got started.

Bruce Adema: Thank you. I know in our earlier conversations that we had before, that you are very familiar with the work of Henri Nouwen. How did you become aware of his spiritual writings?

Mary Tutterow: When my daughter was about eight years old, I had heard about L’Arche, which is Christ-centered, intentional living with people with disabilities. And I went and lived in the community in Washington DC, and there I encountered the living presence of Jesus, and I wanted to know more. I dove deep into the writings about L’Arche, and that’s where I discovered Henri Nouwen and his work. It profoundly changed my perspective on what loving and caring for others is really all about in comparison to the gospels.

Bruce Adema: Thank you. Yes, a lot of people I’ve talked to, have had experiences where you come across the writings of Henri and it just opens your mind and your heart and lets you connect in such a positive and beautiful way with the Lord. So thanks for sharing that.

Bruce Adema: Our podcast is called “Love, Henri” because we’re drawing on the letters that he wrote. He was a powerful letter writer. As he became known through his books and through his lectures and presentations and retreats that he led, people would write to him and pour out their hearts, saying, “this is my struggle, this is my question,” or would react and respond to the things that he had written. He wrote so many letters! He kept almost every letter that was sent to him, and he made a carbon copy of every letter that he sent. So in the archive, there are something like 16,000 letters of Henri. Drawing on those 16,000 letters, a book has been compiled. And this book is called “Love, Henri.” it’s really good, really interesting.

Bruce Adema: So what we’re doing is we’re taking different letters and talking to somebody that has insight into the topic that Henri was talking about. So, Mary, you’re our special guest today. The letter that we’re looking at today was written on November 10th, 1987 to his friend Lee Udell. Lee was a hospital chaplain, and the topic of the letter was spiritual care for people with severe handicaps. Now, Henri, as Mary as you said, Henri was the pastor and chaplain at L’Arche Daybreak, which is the L’Arche home north of Toronto. When you live there and you’re an assistant to a core member, you are bound together in community and care together, Henri was assigned to be the assistant for a core member named Adam, a man with profound disabilities. Henri wrote a book about his experience and his relationship with Adam, called “Adam: God’s Beloved.” It’s not a long book, it’s very accessible, very beautiful. So that’s the context Henri had written about Adam. Lee wrote to Henri with some questions and some observations, some thoughts about what Henri had written. So let me read Henri’s letter to you.

This is Henri’s letter to Lee, written on November 10th, 1987.

November 10, 1987.

Dear Lee,

Thanks so much for your good letter. I really appreciate your honest, direct and challenging words. There are many important questions which I won’t be able to respond to well in this letter. There are many, many things that I would like to write to you, but the main thing I want to say is that the way I am receiving from Adam is a spiritual way, which, in a certain sense, transcends the emotional, the physical and the intellectual. It is very hard for me to articulate exactly what a handicapped man like Adam is offering me, but in a very profound way I do believe that he has that he has become for me a very concrete representation of the suffering Christ. His emptiness and his complete dependency have given me a deeper knowledge of Christ’s descending way than anything I have ever read or heard. I really feel deeply that Adam is extremely precious in God’s eyes and that in a very profound sense he was sent to us for our healing and salvation.

One of the most remarkable things Adam has done for us is to bring us together in a community of love and to help us to discover God’s presence among us in a completely new way. We really do not talk much about these things, and I am not trying to use Adam for my own spiritual ends, but I realized something is happening because of him which has a very profound significance, not only for me as an individual, but for all who live in this community and, indirectly, for society and the Church. As far as I am concerned, there is so much purification still to take place. I understand your remark that my talking of the spiritual life does not just spring from egotism or a desire to be popular, but since I am here I have really discovered how much more inner purification I have to live, how God calls me to follow him radically on the way to the cross and the resurrection.

I very much hope that we can talk about this more in the future. Hopefully I will find words to say better what I write you in this letter, but I hope that you realize that I have taken your questions to heart and keep thinking about them.

Yours,

Henry

Mary Tutterow: Hmm. I’m so glad that you asked me to talk about this particular letter, because he expresses so perfectly so many of the things that happen to us with the care of a profoundly challenged child. And it’s very hard to put into words because when they do come out of your mouth, it’s shocking because it’s so counter-cultural, you know? But it’s living proof to us, the transformation in our family by restructuring our lives to make loving her more important than anything else. And the whole, all of our friends and everybody would say this: why don’t you put her in a home and what are you going to do with your career? And all those things. But it was because her presence in our midst, without her teaching, saying anything, just her being her in our midst, was bringing forth something so profound that it took me a long time to be able to give it words. And Henri helped me profoundly by reading things like “The Life of the Beloved” and “The Wounded Healer.” And the book about Adam: it’s a language that’s, totally transformative, but very difficult to perceive.

Bruce Adema: Yes. Thank you. When I read his letter, I remember that it was written 37 years ago, quite some time ago. The language has changed in terms of even how we refer to people. So if anybody kind of was stumbling over the terms used, please remember that this is a historical document that we’re talking about. Thank you for understanding that. Did you get a sense, Mary, of the letter behind the letter, what Lee must have written to Henri, that made Henri to write back to him?

Mary Tutterow: Well, I won’t put words in Lee’s mouth, but I know that a lot of people, and especially the church, struggles with what to do about the spirituality of people with disabilities. And if Lee is a chaplain, then he’s dealing with institutionalized church protocol and, and so many people who are challenged. And it’s not just people with conditions like Down Syndrome and autism and things. It’s people who have Alzheimer’s and dementia. People who cannot conform or perform to many of the religious protocols. So what do you do with them? They can’t understand when you’re trying to teach them scripture and teach them how to be saved. You know, my daughter can’t read the Bible, and she can’t confess her faith or confess her sins or, or any of the things that some religions require.

Mary Tutterow: And I love it when he said that his own spiritual life, he was saying, as for Adam, I realize something is happening because of him, which has very profound significance. And that’s what we discovered about our daughter. So often people in the church world want her to be able to do something to participate in the life of the church. I think what Henri had discovered, and it’s it’s shocking and it’s difficult to grasp, is just by their presence. If you rolled someone in a wheelchair into the middle of the room, and that’s all that anybody did, it’s very much like how I’m sure Adam affected Henri and how Mary Addison affected us. It made me ask, who is this person in relation to you, Jesus, and how I know you love her? How does she join your kingdom? And what we saw over time was in her innocence and in her purity, and in her availability, and in her egolessness, her suffering made us encounter a whole lot of the darkness within ourselves. All her suffering was doing, was asking for us to respond in love. And yet, as you know, over the 15 years I’ve been teaching our courses to caregivers, so often other people’s suffering triggers the darkness hidden within us. And it’s difficult to articulate that until you’ve encountered it.

Bruce Adema: Okay.

Mary Tutterow: And that’s what I think Henri knew. This isn’t the time for me to try and line by line, explain to you what’s happening and explain to you what’s going on in my heart. Because it’s something that has to be encountered as is so often typical with the Holy Spirit.

Bruce Adema: Yes. One of the things about being a believer is that we are supposed to be Christ-like, even to be imitators of Christ. That’s our calling, I think as, as believers, as Henri said. But he also said regarding Adam, that Adam became, for him a very concrete representation of the suffering Christ. So that when he looked at Adam, Adam had pointed him to Jesus. How do you see Christ in Mary Addison? What does that mean for you?

Mary Tutterow: Well, he kind of articulates it also is wherever he said that in a very profound sense, he was sent to us for our healing and salvation.

Mary Tutterow: Now that seems ridiculous for someone who can’t articulate the gospels. But in learning to love someone on this level, you are fulfilling the greatest commandments of love God, and love your neighbor as yourself. And then the whole concept played out throughout the gospels and epistles of consider others before yourself and laying down your life for others. And that service needs to come with love or else it’s empty service, and that it is so hard to love others who are suffering until you have let God work on your own suffering.

Bruce Adema: Yes, indeed.

Mary Tutterow: And nobody could have told me since I was a know-it-all anyway <laugh>. So it took a little girl who was so broken because no teacher could have taught me this. Her suffering brought out so much rage in me. It was so counterintuitive, you know, to have a child who can’t understand Dr. Spock <laugh>. How do you teach somebody manners or any of those kind of things. And, you know, I had a human being in my life that broke all the rules that I had been taught of what it means to be a human being that has value. And yet here she was bringing out the worst in me, which was the greatest thing towards the healing in my life that I would’ve never even known needed to happen. And I’m not sure I’m exactly answering your question, but that descended Jesus who was willing, like the good Samaritan to recognize suffering and abandon your own plans, to tend to the suffering of another. I would’ve never understood the profoundness of what that is. Had I not had a Mary Addison, and I bet that Henri had not had an Adam that demanded more than a casserole and a prayer <laugh>.

Bruce Adema: Yes.

Mary Tutterow: That demanded true humility and sacrifice.

Bruce Adema: I’m glad you picked up on that word descending. That that’s become for me, one of the powerful words of Henri Nouwen, and I think one of his insights that have blessed the world. To be a follower of Christ doesn’t mean that you’ll become great, that you’ll become rich, that you’ll become powerful, that you’ll be esteemed. The very example of Christ was that he left all of that, from the side of his Father and came down descended to earth, to face the darkness, to face the pain, to face the loss. To follow Christ is to follow his descent towards, the calling that we have, and to not expect that it’s going to lead us to wealth and riches and health and worldly happiness, but it’s going to give peace, spiritual peace. Who in Henri Nouwen’s life could he look at and say, who has descended in my circles more than anyone? And it was Adam who was following Christ in his brokenness, so that he could be a testimony to others.

Mary Tutterow: Yes. And, and to add to that, the whole descended concept, not just the complete dependency of Mary Addison and the availability of her. It’s like in our groups, we talk about that our calling is the very calling of Jesus to step down from our former lives to, you know, strip down with a towel around our waist and wash other people’s feet, to serve and eventually even to lay down your life for someone else in the name of love. And, you know, when people get that, I mean, at first some people are absolutely horrified. I’ve been spent my whole life trying to go upwards now and to build up.  And yet we have this calling to humility and service. Think about it. We talk about this too. The people that we serve are people that the world has completely marginalized and put on the fringes and we don’t even know what to do with them. And yet, we’ve been called to serve them. People so often see the person with cancer, see the person in the wheelchair, see the person with dementia, but they never see the person who’s doing the heavy lifting. You know, it’s like we talk about Simon of Cyrene who carried the cross for Jesus. It wasn’t his cross. But he carried this heavy, heavy burden for Jesus. It really truly is the way of dissent.

Bruce Adema: Yes. I was thinking about caregivers. We want to talk about Mary Addison. We want to talk about Adam, what we can learn from them, how God speaks through them, even in their quiet or in their capacity. But God still speaks. Your ministry has been largely to encourage the caregivers. Through the two books you wrote and the workshops that you give, you’re not giving instruction on how you care for a person that has this or that physical need. Can you talk about what your passion is in terms of your workshops and, and what you’re offering to those that are giving care?

Mary Tutterow: Well, it’s that total shift of your heart. It’s the transformation that the way up is down and that it’s a high and honorable calling to love and care for others. Because even though we focus on very specific scriptures, a lot of them, there is no doubt that throughout his ministry, Jesus was calling people to love and serve others. And what has been missing is that sense of the other; we are in a world that is so run by what I need and grabbing my piece of the pie and all that, that living according to the needs of others is so dangerous that you could be so easily taken advantage of. And that’s what most people come in with. My class attendees come in saying, Alzheimer’s is running my life. For me, my thing was seizures is are costing me everything. It’s costing me my marriage, it’s costing me my friendships, it’s costing me my career. It’s costing me everything. But when you get the shift about the power and the purpose, of learning to love like that, you find your feet on solid ground that nothing can shake. That it’s true. It’s not just religious fluff. Being able to cut through all the crud in the world and know that peace is a choice, love is a choice, and you have the power to make it through the power of the Holy Spirit at work in you. It changes everything. It totally flip flops people’s minds, and when they get it! It’s not only loving and serving Mary Addison or Adam, suddenly you see all of humanity differently through that lens of love.

Bruce Adema: Okay. Thank you. I know that from having read Henri’s story, that he found it difficult caring for Adam, being part of Adam’s circle of support. And, Henri also was a man who, who, had from time to time periods of depression where he needed to go for care himself. What he did is he would go to retreat centers or go to clinics even where he could be cared for, among people that are caring for loved ones that have profound needs. And if you have your spiritual house in order, if you know that you’re not alone, that that you don’t carry this by yourself, but the Lord is right there with you, that’s fantastic. But sometimes we also need, mental health support for ourselves, don’t you think?

Mary Tutterow: Yes. However, the bottom line to all mental health solutions is if you’re waiting for the world around you to change, to lift your depression, or to lift your anxiety, or to lift your confusion or whatever is plaguing you, you’re lost forever because you’re the only one that can change you. You know, and that’s the thing we talk about so often is that we go through the whole list of things that are enemies to this shift. Like your ego and that the world teaches you to be a victim. It’s always, you can always point the finger at somebody else, right. And there’s always a reason why you can’t. I can’t because I can’t, I don’t have enough time, I don’t have enough money, I don’t have enough support, I don’t have enough whatever. And if you’re counting on other things to come through for you, your situation is hopeless.

Mary Tutterow: So even though we do need time for ourselves, until you understand what you’re working on in that time, and that’s the shift of realizing the power that you have in Christ, and you making the mental shift to choose peace, to choose love, to choose to serve, to choose to see Jesus in this situation, to choose community. I think a lot of people think what I need is time away. But I was going to refer to this in the letter when Henri says that what Adam has done for us is to bring us together in a community of love, more than needing time away to go get a nap or to be with myself. It’s so powerful to come together with others in this newfound love, in this newfound ability to see beyond the ego and the noise and the flesh to see the spirit in all.

Mary Tutterow: And when that begins to happen, because a huge thing with people is we tend to isolate and try and do it all on our own, and learning how to be in community with others who can love and support us, and not let you know, not go, you didn’t do it. Right. Because that’s so often what caregivers do. It’s really hard. You let somebody else in your house to help, and you come home and go, well, that was more difficult than just doing it myself. There’s a real art to learning how to be in community with others in love, and to learn to let other people help care for your loved one because it is hard.

Bruce Adema: Well, that was going to be the question that I was going to ask. You read my mind! People that are caring for people with disabilities often is an isolating experience, from what others have told me. They wish for a community. I also have seen that people who are observing those that are caring for someone with disabilities don’t really know what to do, how they can be helpful in the best way possible, be in community with them. Now, how can I be in community with somebody who is caring for someone with profound disabilities? Rather than speaking to the person who is caring, talking to people that are part of their extended circle, what guidance could you give to people like me who don’t have a disabled family member – how can I be in best in community with somebody who does?

Mary Tutterow: Well, it’s what we’ve been talking about earlier: acknowledge and recognize that this downward journey that this person is taking is a very holy and place of inner healing. And to support that and recognize it, and not constantly say, you need to go to The Bahamas <laugh>, you need more time, because Yes, they do. But that ain’t gonna really change things, especially if you’re like our family. We’ve been caring for Mary Addison for 32 years, and yes, getting breaks matters, but it’s the people who have acknowledged and said, the way I see you love her in public looks so incredibly difficult. But it ministers to me so powerfully that they can see people, people who can acknowledge that they see something else besides just the horror <laugh> that the world would have, you think, because just because she couldn’t go to college just because she can’t get married, just because she can’t give me grandchildren, just because she can’t go to birthday parties, just because, all the things that she couldn’t do, which most people focus on.

Mary Tutterow: It’s like the people who say, he’s my husband, but he can’t take out the garbage anymore. You know, we’d have a tendency to focus on this whole thing, but to see how you’ve grown in patience and the tender way you love, what a gift you are to your husband, what a gift you are. To me, to watch you love the way you do it is so inspiring. I mean, to me, that’s the most profound thing anybody could ever do, and would make me want to welcome them into my community, my heart, my caregiving life, because they’re not judging me on what we can’t do anymore. They’re seeing the beauty of what God is doing in our midst.

Bruce Adema: It is interesting, Mary, you sound just like Henri. Now, you see this. You’ve experienced this. You’re testifying to this, but it’s also what Lee put in the letter, what I think was reacting against. He accused Henri saying, you’re caring for somebody that has a lot of special needs, and it’s hard and you’re just making it all so spiritual. And, not recognizing, not acknowledging the hard parts of it, sugarcoating it. I think he used a, a different concept – romanticizing it. How would you respond to that charge against your very positive take on your life and experience with Mary Addison?

Mary Tutterow: Woo, Bruce <laugh>.

Mary Tutterow: Well, I would say, and this has taken, I mean, 32 years now, this didn’t happen overnight, but I believe that the gift of people with disabilities, even people who are incredibly difficult, who are violent, who hit, who scream obscenities. They’re not all like Mary Addison and Adam. You know, it’s hard enough to take care of somebody who doesn’t fit in a box, but then someone who’s angry and full of angst and all that. But it’s the gift of brokenness. because we’re all broken. They just wear it so outwardly. And when  we encounter it, what pops up in us is judgment and, um, disgust.

Mary Tutterow: And, you’re not following the rules. You know, like when you see somebody with a child who has autism in a grocery store and the child’s completely had a meltdown, you are a terrible parent. You know? And if you let the Holy Spirit do what the Holy Spirit so often does in situations like this, he moves so powerfully. He uses the foolish to shame the wise. He really does use the weak to shame the strong, his power is made perfect in weakness. The things I’ve been told about, I mean, how many times have we gone to a restaurant and we’ve had a difficult time, and the whole restaurant has watched us have a difficult time, but watched how we deal with her with patience and love, and we don’t run away and we don’t get humiliated and all that. People are offering to buy our dinner.

Mary Tutterow: People leave us notes saying, I needed to see that kind of love and commitment in a world that doesn’t commit like this anymore. I really truly believe that God uses the weak so powerfully in their brokenness. Most of the world is likely, and you can’t judge or blame Lee until you’ve been in it and let it transform you, and then let your reaction to it change someone else’s heart. He moves powerfully in brokenness. He really does.

Bruce Adema: Yes, for sure. Thank you. Thank you for sharing your life and your service to, to your daughter. Now through our conversation it’s super clear to me that you’re a very spiritual person who walks closely with God. That’s fantastic. What are the spiritual practices for yourself that you engage in that help you to continue this journey with Mary Addison?

Mary Tutterow: Well, in shifting my perspective, I look at it as this is something that God invited me into. I mean, because I think you and I discussed it. You know, I was a partner in an international public relations firm. I’d been an anchor woman. You know, I had a very big life. My husband and I both had very big lives and money, and cars and houses and all that stuff. And this little baby set all that to shaking and made it all tumble down and drove us nearly to the point of divorce and bankruptcy and all those things. Now I want to make sure I come back to say this the way you asked it of me. So ask me one more time so I can clearly answer it the way you asked.

Bruce Adema: My question was, what are the spiritual practices that you employ so that you can continue your ministry to your daughter? God has placed her in your life, and now you’ve been, are being faithful to that calling. What is it that you do that gives you the strength for the continuing journey with Mary Addison?

Mary Tutterow: It is really clear that by no fault of our own, we found ourselves in this predicament by pursuing love, we found ourselves in this predicament. So we have chosen to look at it as he invited us in, and we are all put here to do good work that he prepared in advance for us to do. And that I don’t have to do anything but follow Jesus through this journey. And when I want to get ripped out of the frame and upset and hysterical and go in the fetal position and cry and say, this is too hard, and all those things, I remember he invited me in and my husband in, and we said, yes. And my only responsibility is to follow him and let him do this work through me. I don’t bring anything to the table. And thinking of myself that way and thinking of this situation that way, and offering our very humble circumstances, he shows up in the most beautiful and profound and powerful ways that are so stunning and so far beyond having money <laugh> or being the most popular, you know, or any of those things.

Mary Tutterow: It’s his journey for us. And that’s the main practice. But then, like in the peaceful caregiver, I am a huge fan of contemplation and emptying and constantly letting go of false expectations and old stories. I think this helps a lot of people in our groups to say, you know, you thought that this would be your husband and he would love you and take care of you, and that he would always put out the garbage and change the oil, but he doesn’t do that anymore. But the thing that’s stealing your peace is the fact that you believe he should be. And all you have to do is change your mindset. Who told you that’s what a husband does, who told you that’s what a marriage is about, you know? And identifying the places where lies have, have crept in, and quieting those lies and listening for another way. And so, you ask about a practice, I practice, and I encourage in the peaceful caregiver, I teach people how to practice the kind of contemplation that works in our crazy world full of day-to-day diapers, and, you know, meds and hospital stays and accidents and all those things.

Bruce Adema: Thank you Mary. We’re, we’re coming to the end of our time, but, so I wanted to say thank you for being with us today. Thank you for being an example, a demonstration of how to be a faithful caregiver, and for sharing your wisdom with the people that come to your workshops and read your books. And now listen to the Love Henri podcast. We’re going to be featuring information about the work you do, Mary, in the show notes, provide a link to your website and books, so people can reach out to you if that’s what they feel they should do. So thank you.

Mary Tutterow: Oh, Bruce, thank you. This is a, an absolute dream come true for me, for what Henri and his writings have done in our life. So thank you so much for inviting me.

Bruce Adema: You’re very welcome. I’d like to say thank you to our listeners. If you’ve been listening to the audio version of this conversation, you can find the video version on the YouTube channel, which you can access through our website, henrinouwen.org. And while you’re there, you can, uh, sign up for the free daily meditations and learn about the other great and interesting programs of the Henri Nouwen Society. If you’ve enjoyed, and I’m sure you have, <laugh>, if you’ve enjoyed today’s episode, please leave us a nice review and give it a big thumbs up! How nice it would be if you’d shared this episode with your family and friends. Well, thanks again. Thank you for listening. And never forget that you are a beloved child of God!