Grief 03: Chronic Pain and Disability in Motherhood—An Interview with Vaneetha Risner Transcript
This transcript has been edited for clarity.
Emily Jensen: Welcome back to another episode of Risen Motherhood. I'm Emily, and in just a few moments, I'll be joined by my co-host, Laura, and our special guest. If you didn't know, we're in the midst of a mini-series all about grief and motherhood. We've already tackled an overview of grief and how it might impact our lives physically and spiritually. Now we're going to dive into a series of interviews on specific aspects of grief and motherhood. Today, we're joined by Vaneetha Risner, author of Walking Through Fire: A Memoir of Loss and Redemption and the upcoming Bible study entitled, Desperate for Hope: Questions We Ask God in Suffering, Loss, and Longing.
In both of these books, Vaneetha recounts the struggles of parenting through chronic pain, losing a child, single parenting, and more, as she looks to Christ for hope and help. You can find more details about Vaneetha in our show notes. Ahead of the show, we do want to let you know that we're discussing the topic of chronic pain and suffering in a very raw, transparent manner. We're so grateful that you're tuning into the podcast today, but we want to give a reminder to exercise wisdom in deciding if this content is the best fit for you in your current season.
We hope and pray it's an encouragement to you, but we also hope you'll reach out to a trusted friend, mentor, counselor, or other medical professional that can speak into your specific circumstances as needed. This episode is not meant to give personal advice or be a substitute for professional help. As you listen through this series, we hope you'll also check out our free digital download that we created in partnership with our friends at Every Moment Holy. This download touches on topics related to grief, and they're helpful for lament, reflection, and response.
Our teams worked together to adapt these liturgies specifically for a mom to pray through, and we hope it's an encouragement to you. You can find all of the info for how to get your free download at risenmotherhood.com/grief. Also, a huge thank you to our generous donors who have funded this episode. We're grateful for your support. Before we jump into the interview, we want to let you know that the audio quality on this isn't as good as we would've liked, but we hope you'll stick with us for the rich truth that Vaneetha shares. Okay—let's dive into today's show about the grief of chronic pain in motherhood.
Laura Wifler: Hi, Vaneetha. Welcome to Risen Motherhood.
Vaneetha Risner: Thank you. It's great to be here. Thanks for having me.
Laura: Absolutely. We're happy to have you. Can you tell us a little bit about yourself for anyone who might not be familiar with your work? Because we are going to be talking a little bit about disability and chronic pain on this show, can you share just a little bit of your journey as well?
Vaneetha: In terms of me, I'm a writer and speaker. I really write about suffering, which is a crazy, little, narrow niche. I call myself more of a sufferer than even a writer because I never thought I would write. Nobody in my family actually ever thought I should write, but here I am writing. Just because God has entrusted me— and I say that through a lot of years of really seeing it with suffering in different realms—and I feel like it's something God has called me to steward. That's what I write and speak about. I would say that this episode is specifically geared to so many of the things that I have been through.
A lot of my suffering started as a mom. I had polio as a child, to tell you a little of my story. Lived in and out of the hospital—grew up with a disability. That was hard, but I finally was able to live a pretty normal life. I went away to college and lived in Boston. My disability was always something I dealt with, but it wasn't an overarching part of my life. Then I got married and had my daughter. That's when things started getting a little harder. I couldn't pick her up because my arms were really weak, so we had to have a part-time nanny to help me. That was quite a bit of a struggle—just feeling like, "Wow, I can't do these simple things for my daughter."
That was a hard thing, but for the most part, I could do everything else. Then, when my kids were pretty little, I was diagnosed with post-polio syndrome. I'm guessing you don't know what that is. I didn't know what it was until I got diagnosed. That's a situation where people who've had polio—thirty years after they had it—and I was an infant—they often start going backwards. I had all these gains. I was a quadriplegic, actually, when I was first diagnosed with polio, but then with twenty-one operations and exercising three times a day pretty much my whole life, I was able to live a pretty normal life.
When I was diagnosed, they said, "Well, basically what happens is, once you get polio, your primary—everything that was affected—your motor neurons die. Then the body sprouts up what they call these secondary motor neurons. They look like regular motor neurons so you can just do things that you couldn't do. Everyone's like, ‘Wow, they've regenerated,’ but they found thirty to forty years later that they really didn't. These things had a very limited life." So eventually, I will run out of all the energy that I had, and I will be probably a quadriplegic again. That's one of those really hard things.
I figured out—I got the diagnosis because I was in a ton of pain. That's one of the things that goes with post-polio. I was a young mom and just really couldn't figure out what to do. It was so bad. I couldn't feed myself. People were coming over to help me take care of my kids. That was really the start of a different life for me, which was really, really hard because I had sort of made peace with what I had dealt with most of my life and thought, "I can do this. I can figure it out."
Then, all of a sudden, pain and disability made me feel like I was a different person. Like I wasn't the same mom that gave birth to these girls and loved to cook and do all these things. All of a sudden, I was not doing that. It really changed my identity, and it has been—I was diagnosed in 2003, so almost twenty years ago. It's been a slow decline, but I'm very different in terms of what I do and what I can do for my kids.
Emily: Thanks for sharing a little bit of your story. I know that, just from hearing you speak and write in other avenues, there are a lot of other facets of suffering that happened in the midst of that that you have walked through. But just to keep the focus on what we want to talk about today, one of the words that came up was "chronic." Chronic is something that is going to go on and on and on.
How did you wrap your mind around that? What griefs have you had to deal with— just as you've really said, this isn't something that, "Hey, I had a broken bone, and I'm probably going to heal within a certain amount of time"—but to say, "Hey, this is going to be something with me for the rest of my life, and it's going to get worse." How have you worked through that?
Vaneetha: That's a great question, and I don't even know if I have a good answer because I feel like I haven't even—twenty years later, I don't know if I've fully worked through it. It's like it comes at you, and you realize, "Wow, I can't do this anymore." It's this grieving it in a large sense, but it's almost like you're living somebody else's life. You get a diagnosis, and you hear it, and you think, "I'm going to lose strength every day." It's a little series of griefs because every time you can't do something, it's like, "Wow, I can't do this now." I don't know if it's possible—or some people probably can anticipate the future and grieve it. For me, it's grieving realizing it's going to be really hard, but it's the everyday "Wow, I can't do that." It doesn't change day to day for me, but it changes month to month.
Then, with pain, it really is—you just deal with it when it comes. I don't have this great way of saying, "Oh wow, I've processed it, so when it hits, I'm fully prepared." I think that of any kind of grieving—I mentioned I've had other losses. I lost my son. I feel like I've known people that have known their children were really sick, but you still can't really process it. Our son had a heart problem. I knew his life was tenuous, but you can't, I don't think, really process actual pain until it's right in front of you.
Emily: I feel like that's what people refer to as "God will give you the grace when you need it." I appreciate you breaking that out, because I want the answer to be sometimes—when we talk about things that go on for a lifetime—both Laura and I have a child with disabilities—that it's like, "This is a lifelong thing." I want to be able to say, "I'm going to process what that means for my whole life right now. I want to just go ahead and feel all of that and deal with all of that so I can be past that." I just thought it was really interesting what you're saying—"Hey, it's month to month." Some months maybe it's better than others, and you're just relying on the grace of God that he gives you in that moment or in that month to walk through that. Is that what you're describing, Vaneetha?
Vaneetha: Yes. You have to rely on God each time a new piece of loss—I'm sure you both understand that with kids. There's the "Oh wow, they would be able to do this," or "Other kids can do this." You see that, and you have to grieve it again. For me, it's like, "Wow, I thought I'd be able to go to this event," or "I thought I'd be able to do this." For my kids growing up, it was a lot of grieving—just feeling like, "Wow, I am not enough for them. I'm not the best mom for them. If somebody else was their mom, they would have a much richer, fuller life."
Part of my story is also that my ex-husband left our family, so I was raising adolescent daughters with a major disability. Our life just got very small very quickly. I thought, "Wow, if they had a normal life with two parents that could be there and do this stuff, they would be so much happier." That's what we tell ourselves—"If our family looked different—looked more like other people—this would be better for my kids." It really was a process of me continually giving that to God and realizing God's like, "I gave this to you for a purpose. I'm going to use it, and I'm going to use it in the life of your kids."
I think that was hard for me to understand at first, honestly. I felt their life was less-than because of my disability. Really, through a lot of praying about it and just saying, "God, it feels so hard for them," I've really come to see this was God's plan for them and really the best thing for them. I've seen it in their character. They had to sacrifice a lot when they were kids. I felt like, "Wow, I don't pick up their shoes. I don't clean up the kitchen as much as moms who are great at doing that," but then, my kids—or at least for a while, they're better at doing that. They notice things.
I remember when my daughter Katie was in kindergarten, her teacher said—the teacher dropped her papers in class. Katie's desk was on the other side of the classroom, and Katie was the first one up. She bent down and picked up the teacher's papers because she knows if I drop something, I can't pick it up ever. She recognized that. I think our kids, when they have siblings or a parent with disabilities, they're way more sensitive than other kids who just don't have to think about that. When the teacher told me that, I actually remember crying. Like—there is something God is doing in my children that I couldn't do myself. I couldn't make them that sensitive. I really appreciated seeing that God was using it.
Laura: I think what you're sharing—it's funny because I think, no matter the abilities of a mom, she often feels inadequate. It feels so universal that we all think, "My kids will be better off with a different mom." A mom who's more patient, more kind, who can coach the soccer team, who understands how to play piano, or whatever. We all can fall into that trap of feeling like, "God, you must not have known what you were doing because I should not be the mom for these kids." What we all have to work through is exactly what you're saying: to recognize that God sovereignly put us with our children.
He intentionally chose our families, and he chose everything in our lives that would happen. Our kids are not worse off because we are their parents. All of us are sinners. All of us have fallen short. None of us are worthy, but God in his grace is so kind to redeem all situations. I just appreciate hearing you say, though, that it takes—it’s twenty years in, and you're still working through that, because I do think it's a continual giving back to God. We're not going to master it. It's not like we wake up one day and just feel like, "I'm totally content with exactly who I am" and everything.
There's often days and days where we have to go back to the cross and say, "I'm going to trust you, Father. I trust that you are good and kind in this as I attempt to mother these children." I really appreciate you sharing that.
I'm curious if you ever feel—you were talking a little bit about your children—if you ever feel guilt or shame from needing to be cared for or needing to be helped. With that, how does the gospel provide freedom?
Vaneetha: I would say, yes, I've lived with a lot of that, especially when I was first diagnosed. It felt like, "I shouldn't need this. I don't want to ask my kids." I would have to ask them for help, and I couldn't. I remember I couldn't cook as much. I used to love to cook. I remember one of my daughters was at a friend's house, and she said, "I wish my mom liked to cook like you do." She'd forgotten that I did like to cook. Our meals were super simple. I felt so guilty when I heard that—like, "My kids aren't getting the best." I felt guilty that I made my kids clean their rooms.
Some of my friends would go in and straighten their beds and do all that stuff, and I couldn't do it. I dealt with that for a long time, I would say. The beautiful thing about that—with the gospel, you just keep going back to God. I would just keep going back. I was reading something the other day that said, "Dependence is the promised land." I remember thinking, "I don't want to be dependent. That doesn't feel like the promised land to me at all." I feel like we as a culture want independence. We want to be able to do everything for our children ourselves.
It has been such a gift because, when I felt guilty that I couldn't do something, I would have to ask God way more than when I could do it. If my kids asked me, "Can you take me to a game or go take me to somebody's house?"—if it was really easy for me, I probably wouldn't even need to pray about it. I would just get in the car and go. When everything I do costs me something, I actually have to ask God like, "Should I use this energy to do this?" There was guilt that "I can't do everything they want me to do," but there is this dependence on God that actually made it, I feel like, more beautiful for my kids.
If I said yes, it was because I knew it was something that the Lord wanted me to do. I feel like wherever I have felt competent and sufficient is really not when I'm giving my kids my best. It's really when I am deficient and don't know and I'm relying on God—because God really knows what's best for my kids. I don't. I found that to be this really wild thing—whereas I thought I was giving them less because I couldn't do it, I actually think, especially in retrospect, that I was giving them more.
Emily: What I love that you're referencing there is really humility. Dependence is recognizing our inability and our need for God who is all-sufficient and all-powerful and who is strong, and it’s recognizing that we have those limitations in and of ourselves. Having a right view of who we are in relation to God and how much probably all of us on a daily basis need him in such—not probably. We do all need him in such big ways. When we are seemingly able to just complete that task ourselves, we miss God in the midst of it, because we're like, "I saw that, and I just got up, and I did it. Look at me go. I'm so great. I'm so productive. I had such a great day." Having to really say, "Everything I did today, I did only in the Lord's strength by his grace, by his leading—I love hearing how you had a front row seat to just God's work in and through your life in every single little mundane moment, which is something we're always trying to talk about at Risen Motherhood. Every mundane moment is an opportunity to worship.
When we think and we see our own ability, and we just blow right through it, we miss what God does in the midst of that. I love that thought that you had there.
Just to keep the conversation moving—thinking about your relationship with God through the years, did your disability or struggle with chronic pain bring up any doubts for you or, I guess, struggles in your relationship with God? What kind of hope did you have in the midst of that?
Vaneetha: I would say, through all of my suffering, my first response is to say, "God, are you still good?" I have said that over and over in my life. I’m not the once-and-done "I've seen God's goodness, and I know that he's good." Each time, I don't expect suffering. Yes, there's been a lot of doubts. When my son died, I'm like, "God, do you even care? Are you even good?" Then, six years later, I was diagnosed with post-polio, and so there was like, "How could you do this?" There was a lot of struggling with God and lamenting and a lot of really asking God, "Why did you make me a creative person?"
I used to be an artist. I sold my paintings, and then I wasn't able to do that. I was in charge of VBS crafts for years. Then now I can't do that at all. There is this "God, why would you do this? Are you even good?" I would say there was a lot of those questions. I feel like it just took asking God, leaning into him, and being honest about what's hard. I think people miss the goodness of God when they feel they need to defend God and they need to make it seem like they are happy when they're not. I feel like honesty—even in parenting, in loss—is saying, "God, this is really hard. Help me see your goodness."
That's something I've prayed so many times: "Show me you're good—you're being good to me right now." Sometimes it's not like the super tangible thing that I see, but it is a sense of God with me. Sometimes it is opening my eyes to see something little that I would've missed, that God has shown me, "Yes, I'm good in the midst of this. Yes, I'm doing something for you even in the midst of that." I think a lot of my struggle, even in the moment when I can't do something, is like, "God, why are you letting this happen?" And then just asking God, "Show me that you're good." I think God has shown up every time.
I think that process for me is what's really made my faith stronger—being willing to be open with God and say what's hard and be frustrated and not pretend that I feel differently and really put my doubts out there with God and then letting him respond to me. Whereas I would say, before all of this happened, I was a believer in college and before I had kids, but I think I was afraid to really be super honest with God. It felt like it took crisis after crisis for me to say, "I can't live with this—say the right stuff, sing the happy songs, but inside—'God, where are you?'" It really changed my faith when I was willing to say, "Wow, this is hard. God, help me through this. Reframe my perspective."
Laura: It always astounds me when I think about God's willingness to hear every emotion I have and how contrary that is to all of the other "little g" gods and all of the other religions where you need to just pull up your bootstraps and keep trying to do good and keep earning that god's favor. Where our God, the true God, says, "Come to me just as you are. I want to know every piece of your soul. I know it all, but I want to hear you tell me." Just how kind and generous that is of him to desire for us to be honest with him.
There is an open-door policy to come to the throne and tell him about our feelings. That, to me, is one of the many critical and crucial differences between how a Christian grieves versus how the rest of the world has to grieve.
Another one of those things is the hope of heaven. I'm just curious if you can talk to us a little bit about how the hope of heaven has maybe become more real to you in chronic illness or in disability specifically. We've talked about—I know you've experienced many things. What has that meant to you? How has that given you hope in the here and now?
Vaneetha: I think the hope of heaven is something I cling to more and more with pain. A lot of times I'll just joke with my husband, "In heaven, I'm not going to feel this," because I live with pain every day. Sometimes it's really bad; sometimes it's not bad. But in the times when it's really hard, I just remember, "This pain is not going to last forever. This disability is not going to last forever. One day, I'll be able to do all of those things." I feel like recognizing that whatever suffering we're dealing with on this earth is not forever is pretty amazing.
With my disability and pain, I see my sin, even. It comes into very sharp focus because I can be really irritable and just not really nice. Knowing in heaven that that's all going to be gone too is pretty amazing as well. All of these things that bother us day to day—whether it be disability or pain or our own sin—it's going to be different. I think about heaven a lot more. I remember when I was young, I actually didn't want heaven. I was like, "I want to live my life, and I want to do all these wonderful things."
Not that I didn't want to go to heaven, but I wanted it to be way far away. Now I'm like, "Heaven's going to be way better than anything on the earth." There's not this dread of like, "I don't want to go." Now it's like, "Anytime God wants to come back or I get to go, I'm up for it." I think that really, really changes. I think when hard things happen in your life, you realize this world is not our home, and things are not the way they should be, but one day, they will be. I think that's a real comfort.
Emily: So true. Ultimately, the longer we live, and we experience trials and tribulations and sorrows and suffering—it does make us long for heaven, and it readies us for heaven. I just love that thought. Vaneetha, what final encouragement would you give to a mom who is walking through some type of chronic pain, chronic illness, disability—something that's really affecting her motherhood on a day-to-day basis, and she's grieving?
Vaneetha: I would say: lean into Jesus. He is using this in your life in ways that will one day blow your mind. It may feel like losses day after day, and your life is not the way you wanted it to be, but one day, you will see that God is doing something amazing in it. And recognizing not just for you, but for your children. One day, you will see.
I was reading in John 13 where Jesus says to the disciples—he's washing their feet, and he says, "What I am doing now, you do not understand, but afterwards, you will." I think that's such a great picture for us as we're going through hard things.
With pain, with disability, we don't know. We just muddle through. It's not fun; it's hard. But recognizing God is doing something—we just can't see it. I would encourage every mom who is just thinking, "I'm in so much pain. I'm not able to be there for my kids. I'm not able to go to the soccer games or bake the cookies or have the kids over or whatever it is—have play dates." I was so sad I could not be the homeroom mom or whatever for my daughter's kindergarten class, because the teacher asked me. Just recognizing I can't do all the physical things.
God is going to use every drop of your suffering for something that is so much bigger than you can see—for your child, for you, for your family. This is not an accident. One day—maybe in heaven, maybe on earth—you will be grateful for it. Just trust God and lean into God. When it's hard, be honest with him. Don't try to spiritualize the pain away because I think suffering is still hard. I think when we try to spiritualize it away and say, "For Christians, it shouldn't be hard"—I think then we disconnect from our faith. I would say grieve it, feel it, but trust God in it.
Emily: Just one quick thought that I had—because I know we've been encouraging moms who are going through a variety of things to be listening to these episodes, whether or not you've had a firsthand experience, and to just be gleaning some truth. As I hear you describing even some of the things—you're like, "I wanted to be this, but I couldn't, and I wanted to do that, but I couldn't"—how much, I think, as moms, we put our identity and our hope and our sense of "I am good when I am doing X, Y, and Z. I'm going to the school functions, and I'm volunteering, and I'm making homemade meals every night. My kids are wearing a certain type of clothes, and they're in certain activities. We're the fun house, and all the kids come here. I volunteer in Sunday school." Whatever those things are. We, I think, each have our own individual mental checklist where we're like, "If my motherhood looks like this, I'm doing good. If I am not doing those things, I have failed. I have failed my kids. I'm horrible—whatever those things are."
Just to hear you say—and I think it's just given me hope to go, "But even if I can't, God is still on his throne. God is still good. God is still working in our kids' lives." That's not where our security and our identity is found. I think I put so much emphasis on those things and knowing that I'm going to be able to do them. And even just to spend some time reflecting on, "What if I couldn't?" Even then, do I know that I am still worthwhile and valuable in God's eyes, and I still have important ministry to do? I think your life is such a beautiful picture of God at work offering grace and doing a beautiful redemptive work in your life, in your family—utilizing your story to give comfort to others. It's beautiful.
Vaneetha: Thank you. I feel like it's been neat because before, when I could do everything I wanted to do, I was so confident in my own abilities. I was reading all the books and doing all the stuff and making sure I did it all right. I was so resting in my own righteousness or my own ability to hold it together and be organized and do all those things. When life started to fall apart, I realized that's when I had to depend on God. I thought that was weakness at first, like, "I can't do it myself; I've got to ask God." I realized that really was strength, and that was the best for my kids and the best for me. When we come to the end of ourselves in parenting is really where we start trusting God. That is the promised land.
