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Finding Strength for the Terminal Battle (Part 2 of 2)

Air date 01/28/2015

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Author and speaker Bo Stern candidly discusses the challenges her family's experienced as a result of her husband's fight against ALS (Lou Gehrig's Disease), and offers encouragement to those facing similar battles. (Part 2 of 2)

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Episode Transcript

Opening:

Recap:

Bo Stern:  There have been plenty of times where I've just been like, "Jesus, I don't even know what You were thinking. I am not the right one for this." And that is when His grace so far has always been sufficient. It has always stepped into the storm. But make no mistake, I cannot do it on my own.

End of Recap

John Fuller: Insight from Mrs. Bo Stern, sharing her personal struggles in a journey with her husband, who's now close to his fifth year with ALS or Lou Gehrig's disease. You'll hear more from her today on "Focus on the Family" with Jim Daly. I'm John Fuller and Jim, Bo is back with us and what a remarkable story.

Jim Daly: Oh, it was, John and if you missed it last time, download the CD; get it, because it will move your heart. And she expressed so much emotion in that story. It's really staggering when you listen to what she's had to go through. And I'm so glad she's back with us today to share the hope that she has in her heart, that has been cultivated during this journey of hardship.

John: And to get the CD or the download, stop by www.focusonthefamily.com/radio or call us and we can tell you more; It's 800, the letter A and the word FAMILY.

Now Bo is a teaching pastor at Westside Church in Bend, Oregon and has written a book about this experience that she and Steve are going through. It's called Beautiful Battlefields and she and Steve have four children and one grandchild.

Body:

Jim: Bo, I can tell you're a teacher and last time you taught me so much with how to deal with difficult y in this life, but still lift your gaze and lift your heart every day to the Lord. And it really did inspire me and it is so good to have you back here at Focus on the Family.

Bo: Thank you, Jim. It's so good to be here.

Jim: Bo, let me ask you this, the that vulnerability, that openness in terms of y our sense of not being a caregiver, I would say you are doing it. You are a caregiver. That has to be a bit of self-reflection about not measuring up to some standard that you've set for yourself.

When you look at marriage today and at least in the United States, we have turned that into such a contract, rather than a covenant. What you're demonstrating with Steve is a covenant relationship. You took the vow seriously—in sickness and in health. And today so many, including Christians, are saying, well, no, it's more like a contract. If you're not meeting my needs, if you're not measuring up, you've violated the contract and I'm moving on.

Speak to that couple, because there are literally hundreds, if not thousands of couples who are contacting Focus every year that are coming to the brink of divorce for things far less serious than what you're dealing with. Speak to them in kindness about how to frame their relationship with their spouse and to think of it biblically. How do we do that?

Bo: Yeah, I think that Steve is partaking right now in suffering. He is in the middle of suffering and in ministering to him, I'm ministering to Jesus—Jesus, Who came and suffered and confined Himself to skin., And so, it's trying to always look at Steve like I'm not just serving my husband. I'm serving the Lord right now. This is what I've been called to do and I'm serving the Lord in the middle of this.

Just like I serve the Lord imperfectly, I serve Steve imperfectly. And it doesn't have to be perfect to be good. So, I'm trying to … to do that, but what I'm finding is, there is beauty on the other side of the vows. There is something beautiful in the "for worst time," in the "for sick time," in the you know, the "for poor time," there is beauty in that, that I wouldn't have imagined before. It's not what I expected, but it is beautiful. It is really intimate and it's not the same kind of intimacy, but I sometimes will look at an older couple and I feel sad, like I'm losing what I thought I had coming. I'm living out this different thing. And I think the Lord just keeps reminding me, you're not losing what I knew was coming. The future that I planned for you is still solid and intact and I am with you in this.

And so, if you are thinking, I should bale on this thing, I just want to believe that there is beauty on the other side and sometimes you have to determine, I'm gonna serve the Lord. I'm gonna serve this marriage by serving the Lord. And in that I will find what God has for me in it. And sometimes it takes time and work, but worth it.

Jim: Bo, there's a wife or a husband who's hearing this and they're going through some difficulty. I don't know what the description would be. And they're hearing you and they're going, well, that's good for her. I'm not that kind of person. I can't measure up to that. I'm doing it more imperfectly. I don't feel like sticking with it. I feel like givin' up. I feel like I can't get up tomorrow and keep doing it. What should that person do? What Scripture should they lean into? What prayer should they offer up to the Lord?

Bo: Yeah, I'm gonna go back to the Scripture we talked about, that we rejoice in our suffering not because suffering is fun, but because suffering is transformative. Suffering produces something. And so, almost every day I will whisper under my breath when I think I can't go on, suffering produces … suffering produces something better than I could have without it.

And sometimes you have to just get a lot of grit in your spirit and say, I'm gonna look at the long haul. Where will I be if I stay faithful? What's the most likely outcome? And what is the most likely outcome if I ditch and run?

And I think when you start to look long term both directions, give yourself permission to look both directions and then say, which path would I choose for the long haul, so that I could live with myself, so that I sleep with myself at night and say, I served Jesus well in my world. I think that's an important thing, is to look longer term than this very moment and then you just have to use grit to get through the day and ask the Holy Spirit to give you strength.

Jim: How does the enemy work on your soul and on your mind in this environment? What does he say to you to discourage you?

Bo: Yeah, often it is that thing of you're not enough. You're not good enough. You're not gonna do this well enough. And for me, a lot of it is looking at a future without Steve. I've been with him since I was 17. I can't imagine that life. And so, that's kind of the haunting voice for me, is you—

Jim: So, fear.

Bo: --you know to do it on your own. Yeah. And I'm tryin' to learn to delineate between sorrow and fear. Sorrow is appropriate and good, but when it crosses the line into fear and I'm tryin' to control things and tryin' to fix things, that gets to be a problem.

Jim: Hm.

Jim: In that context, how does joy and fear coexist? I mean …

Bo: Joy and fear I don't think can. Joy and sorrow can. But joy and fear are tricky, because fear just eradicates joy. I have never had a fearful moment where I'm like, "But I'm super happy otherwise." Fear is almost the only emotion you can feel and then fear usually makes you make stupid decisions. And so, trying to really access the joy of the Lord that comes into that and eradicates it and say, I'm gonna give you trust in place of fear. That's really helpful for me. That's been a big game changer.

Jim: We alluded to the fact that God's love is what holds us together. Commitment can be formed in the love that we have from God. We love because we're loved. How do you apply that? Is that the formula? Or is that the way that you feel towards Steve? Are you loving him? I mean, let me say it this way. A skeptic might be looking at you going, what in the world? What is motivating Bo to do this? What would you say to the atheist who's observing you, the neighbor who's going, "Bo, come on. I mean, why … where is this comin' from?"

Bo: Yeah, I always love him. I don't always like him. I don't always like serving. Two in the morning with the suction machine one more time, I get frustrated and I want to be better about that and I want to be always loving and sweetness and light, but I'm not. And he would tell you (Laughing). He knows when I'm in that place where I don't feel like I can do this another day. But so, drawing from a deeper resource is really important, because regardless of how it looks to a watching world, if I didn't have faith in something bigger than myself, there is no way. I just know it. There is no way. What would I draw from? My cool inner strength? There's just no way.

Jim: Do you read the story of Job differently now?

Bo: Yeah, in fact, Job used to scare me so much that in the Bible reading plan, I would skip it. I'd skip Leviticus and Job, 'cause I didn't like either one of (Laughing) of those things.

Jim: What didn't you like?

Bo: It's just so scary, the idea that God allowed all of that. And I really just loved the idea of a God who wouldn't maybe do that. And so, now I look at it and say, "Job, you and me, we're together in this, buddy." I understand that God is good. You give and take away and He's still good in it.

And some of this, I will say, too, the way God shows up in sorrow is almost like trying to describe a color you've never seen, because I would like to just give it to everyone, like put it in them, that they would feel what I feel, so that I don't sound crazy. But really it's hard to describe it. God has just been there in it. And I think Steve would say the very same thing.

Jim: And it's a powerful way to look at it, but like Job to get back to that scenario, how have friends either bolstered you or pulled you down? Have you had both?

Bo: I've certainly had both. I try to …

Jim: And we don't need to name them. (Laughter)

Bo: Right (Laughing), that would be an interesting trip home. You know, yeah, one of the things that is hard for anyone facing a terminal diagnosis is that a lot of people want to come in with answers, either ways to pray or ways to believe or things to try. And that's tough, because you feel like if you don't use their answers, you're rejecting them and you have to process all of that. So, that's been hard.

And then people who would like us to not even speak of the suffering, because that's not faith. And we determined in the beginning, we're gonna live this out in a faith-filled, but authentic way. It wouldn't honor my husband's suffering to try to pretend it doesn't exist. That would be ridiculous. It exists and it's real and it's deep. And that's what shows the beauty of God so starkly in contrast to it.

Jim: I would think again, given the background of you and Steve and how you met and kind of the fun way, not liking each other at first and then falling in love, it's probably a healthy way for a relationship to go, in fact, 'cause it's real. And you look at that, you could be lacking humility if it kept going in a super-perfect direction. Do you think God has brought you a dose of humility through all this?

Bo: Yeah, there's certainly been humility. In fact, people sometimes ask me, do you think it's okay for your kids to be doing all this work with their dad? Is that too much for them? And I always say, it teaches them humility and humility is maybe the most powerful resource we can access. I think it changes everything. And I don't think God gives ALS ever. I don't think it's from Him. But I do think God is great at not wasting things.

And so, He's used it to make us more compassionate and yes, more humble, especially when we see somebody else's ship sail into stormy seas. We used to be like, if only they would've married the right person or gone to the right church or done the right thing, they could've kept it from happening or fixed it, because it made us secure to believe that. But now we watch people suffering and we just say, "Oh, suffering, this is gonna produce something good in you. This is gonna do something good for you."

Jim: Well, and what you're saying there, we need to capture it, because I think again, in the West, in our orientation, our logic orientation, we think A, B, C equals D. And in God's situation, that's not always the case and He disrupts that in our lives to make sure that we are faithful. 'Cause the other is just science . To get that faithfulness drilled into us, I think He kinda tilts all of life as if it's a box, in His direction and then nothing, as you said, nothing is lost. God will use what the enemy plans for ill. He turns that for those who love Him. He'll turn that into a lesson to learn good from it. Is that fair?

Bo: I think it's fair and Steve and I said yes to God's purposes when we were little tiny kids getting married and didn't know what we were doing. And so, understanding that some of the ways He's gonna redeem the purpose in this story will not necessarily be for us. It will be for the world that needs Him. But we said yes to that.

And so, we understand that all of this is gonna make sense on the other side. All the ledgers will be balanced. God is not gonna be in debt to us. He is not gonna owe us anything. And so, knowing that trusting Him with the results of this has been really important for us. And people who are tryin' to figure it all our here and keep all the strings pulled together, but I gave You this and You didn't give me this and I need to see it all here on planet Earth, are gonna be frustrated. 'Cause Jesus said it, "In this world you will have trouble." It seems He wasn't messin' around when He said it.

Jim: Well, that's so true. Bo, talk about your children. We've talked about you and Steve and the intimacy of your relationship and emotionally, how you're dealing with this. But how do you speak to your now 14-year-old? And I just remember being that little boy and my mom dying of cancer, these were tough, tough discussions that really children should never have to have. But this is this life and we do. How did you as mom talk to your kids about your husband's situation?

Bo: Yeah, we have ongoing discussions and they've been doing pretty great. And one thing that I think has been important is, that I've made sure that all my kids have someone else in their life who isn't me, who they can talk to and say real things to. Because they're trying to protect me, too and keep me okay. And they're talkin' care of both parents a little bit in that way emotionally.

And so, positioning someone in their life that we know will lead them back to Jesus when they hit a tough time has been very important. And sometimes I think, especially with my 14-year-old, there's this feeling like, I need to protect the family and I need to not say what's really going on and I'm not say that my mom had a meltdown yesterday or whatever. But telling him, this is your person that you can say anything to.

Jim: Oh, that is good.

Bo: And it will not come back on you and it will not hurt anyone, has been good, so that we know that they can always say what they need to say. And then honestly, just always reframing, God is making you strong through this. God is creating something brilliant in you through this. We've looked at some famous people who've lost their dads and how they have determined to become something. And so, it's not the kiss of death to go through hard times. It's something that God is trusting you with.

Jim: Boy, that is a good way to frame it.

Bo: And we've made them very active in the ALS community. They needed a villain to fight, because ALS is invisible and they needed something to sink their teeth into. And so, my kids, all four of them are very active in raising money for research and awareness.

Jim: Bo, that's great for the kids. Have you done that for yourself?

Bo: Ha, yeah, I have two ladies who take me out to lunch every month and I tell them the real stuff. I tell them about my fears of the future, of going to weddings alone. I tell them about, how am I gonna pay the bills? I tell them about how frustrated I am when people say the wrong thing. And they don't just listen; they have permission to hold my feet to the fire, to keep me accountable.

And so, I remember once time saying for like the fifth time, that somebody had said this one thing that drives me crazy. And they said, "We love you, but it's time to get over that, because that will make you bitter. If you focus on that one thing, you're gonna get bitter." And most other people are gonna play softball with somebody who's going through ALS. They're not gonna keep them very accountable, because they feel sorry for 'em. And I don't want to just get through this. I want to get through this with my character intact.

And so, these ladies, Tammy and Amy, thank you so much, help me stay focused on what really matters. And if I say the same thing every time, I still need a caregiver, I still need to get help with this, the next time we meet with them, they say, "Have you done it? You need to do it." Or "Can we do it for you?" But they make sure stuff is really happening and progress is being made in my life.

Jim: And to me, that sounds like a fork in the road that you've had to come to, obviously, even on that one thing, whatever it was that was said. Five times you came to that fork. Some people can become bitter in that moment. They go left rather than going right toward God. What kept you from making the left turn, even inside, beyond the friends, I mean, talk to the person who did make the left turn and went bitter.

Bo: Yeah, the interesting thing is, when you run into a big crisis, there are plenty of people who will help you get in the ditch. They'll give you permission to get in the ditch of bitterness. Other people have been divorced, well, yeah, that guy's a louse. You should be mad at him. But nobody wants to live in the ditch with you. You're pretty much gonna be alone in there, because it's not a good place to be. It's not fun to be with bitter people.

And so, really having pastored a lot of people who were bitter through the hard times, made me say, "Um, I can't go there." We're at a crossroads and we can either get bitter and frustrated and the kind of people that everyone avoids at parties or we can say, no, we're gonna live something out that points to a beautiful God.

Jim: Is there an easy way to say to that person who made that turn into the ditch of bitterness, especially for the Christian, is there something you can say to them that gets them on the better path toward God?

Bo: Well, usually my chosen line is, "How is this working for you so far?" I mean, do you feel okay about being in this place? Where are all your friends? How is it? Because bitterness is poison. It never plays out well and there's a Scripture in Ephesians that talks about cutting away bitterness, like anchors aweigh, like bitterness keeps your ship tied to the shore and you can't go anywhere. And so, nobody really wants to be immobilized. Nobody wants to really be stuck. And most of the time they don't think they're bitter; they think they're justified. And so, pointing to the difference in that usually helps people say, yeah, I don't want to wear this thing around my neck for the rest of my life.

Jim: Hm, let me ask you this and the way to say this: How does a husband slowly say goodbye to his wife?

Bo: Well, in the car a lot of conversations in the car when his wife can't get away (Laughing) is how Steve has done it. And we've just taken it piece by piece. Times where he'll talk about the future with me, times where our tears will stream. The day of diagnosis, we held hands and we just said, we are lashed to the altar of God's purpose and we are not going anywhere.

And from then we determined to say the words we were gonna say. And that's been important and intentional. And some of the wives that talk to me about losing their husbands suddenly, that's the thing they wish they had. They wish they had, had a conversation where they knew what he really felt and they could tell him what they really felt. And so, it is not necessary to wait for this kind of moment to say these sorts of words and to kinda say, I have peace that I've done this.

Steve went in for a surgery in March and before the surgery, we were told right before, you have a 50-50 chance of making it through this. And we ended up in the emergency room, in the operating room just crying and saying, "Jesus, we don't know what to do." And Steve said, "I have one more conversation with my kids. I can't do this until I've had that conversation."

And so, we cancelled the surgery and had that night, brought all the family together. Steve said what he needed to say to them and then we had the surgery the next week. So, we've had the luxury honestly of having time and awareness to say the words that need to be said and it's been important and painful.

Jim: Not to pry or be too personal, but for instructive reasons, can you tell us some of what those words are like to you and then to your children?

Bo: Yeah, they're really beautiful. He's told us what he loves about us and how he made good choices and we were good choices for him. And he's talked to me about the future and how he wants me to see the future when he's gone.

And he's talked to my son-in-law and said, this is how I want you to handle the future of our family when I'm gone. And we're all a lot more squeamish with it than he is. We are all like, just don't talk about it. But then we know it's important for him to say those words. So, again, brutal and beautiful.

Jim: I mean, that's good. I've got tears in my eyes thinking of that and how does Steve in that regard, how is he takin' , you know, the care that he needs? That's gotta be hard for a man who was an athlete, who did so many things so well, whom you love so much, have to be so dependent on everybody around him. That's gotta be humiliating.

Bo: I will tell you, it is the truest sign to me that he is a real man. It is a real man who says to his wife on Valentine's Day, I want to take you out for dinner, but you will have to feed me. That's a real man, who draws deep on the strength of Jesus and says, I won't be defined by my muscles or my whatever. I am gonna live inside what God has called me to do for every breath that I have to do it.

And there are moments where he gets discouraged, but he keeps it pretty deep, so that we can hang in there, too. 'Cause he knows if he falls apart, we're all fallin' apart. We're (Laughing) all just gonna be so sad. And so, he's tried to stay very positive through it and just say this is the thing. My kids help me get dressed. This is where we're at.

Jim: You know, I can only imagine for Jean and me, and we've not faced anything like what you and Steve are facing, but when we've had our difficulties, her support, her strength has been so important to me, as her husband. And it makes me feel far more confident in who I am and my ability in God. It's priceless. You can't buy that. And I'm sure Steve has felt that coming from you, that strength in you, that support of him, that desire to see him succeed even as his life is slipping away. That has to be so meaningful to Steve. As a husband, I could identify with that.

Bo: Well, it's really important to understand how much he gives me in terms of emotional support. He has always been the one on my team. And so, even here this week, is that today, his support saying, you're gonna do this and you can leave me for two days in order to make this happen and other people care for him. And that's been a trick, bringing other people into the mix to care for him, 'cause he'd rather it would be me. And so, that's been hard, but we've had to understand that in order to have a marriage, it can't always be the wife caregiving.

And I think that's important for people to hear who are caring for a spouse, that you need help with that. And it's good for both of you to have somebody else come in and take some of that off your plate for a little bit, so that you can just have a conversation, you can just be married people who are in love, instead of always doing the caregiving work. So, we've had to kind of fumble our way through that.

Jim: Ah, Bo, you know, as many as 2 million people might hear this broadcast. What would you want to say to Steve and in front of 2 million people? What would you say to your husband?

Bo: Well, he is still the strongest man in every room. He is strong and being his wife is the joy of my life. And so, all of this stuff is just part of that, part of being able to walk with him through the hardest moment and living a little while in the valley of the shadow of death has been pretty intimate, pretty beautiful. And we didn't have a perfect marriage before. And this ironically has healed a lot of things in our relationship. And he is a beautiful man.

Jim: I would think the right things come into focus when you're under this pressure.

Bo: Yeah, I think they do and I think, you know, all of a sudden, you don't really argue about who takes the trash out or whatever. And sometimes I get annoyed at other married couples who are arguing over little things. But then I think, well, no, you do need to work things out when you've got the whole future in front of you.

And then, when the clock is ticking, there are things that you say, ah, we're just not gonna worry whether I like that shirt or not. It's not gonna matter.

Jim: Well, I'll say somethin' to Steve directly. Steve, you married an incredible woman and it is awesome to have a chance to talk to Bo and to hear her heart and to hear your heart, Steve, through her words and the love that you have for each other. This has been very, very, very encouraging to so many. And it makes me want to be a better husband and I hope it's made you want to be a better spouse, as well. So, thank you, Bo. Thank you for your book, Beautiful Battlefields. What a wonderful title.

Bo: Thank you. It's so good to be here.

Closing:

John: Well, I'm sure that you've been inspired by the strength that Bo has demonstrated during her time with us here in the studio. She's exhibited, of course, a divine supernatural strength in her walk with God and with Steve. And His hand is evident in the journey, as they take this path together with ALS.

Now you might not be going through something quite as dramatic as Bo and Steve, but if you're struggling and you just don't know where to turn, if there's not somebody you can talk with and share with and work through the situation, please know that we have caring Christian counselors here at Focus on the Family. We're here to help, to listen and to offer words of wisdom.

We also have Bo's book, Beautiful Battlefields, which as you can tell from our conversation with her, is going to be full of a lot of heart and insight and truth that you can rely on, as well as some very practical steps you can take to lean into God and not to feel crushed by the circumstances. Again, the title is Beautiful Battlefields. And today when you make a donation of any amount to the work here at Focus on the Family, we'll send a copy of that to you. It's our way of saying thanks and tryin' to put good tools in your hands for your circumstances or perhaps for you to pass on to someone else who can use some encouragement. Get a copy of the book, the CD and we can tell you about the download, as well, when you call 800, the letter A and the word FAMILY or online at www.focusonthefamily.com/radio.

Well, our program was provided by Focus on the Family and on behalf of Jim Daly and the entire team, thanks for listening in. I'm John Fuller, inviting you back tomorrow. We'll have some great words of wisdom from financial expert, Dave Ramsey, as we once again, share trusted advice to help your family thrive in Christ.

  • Featured Book

    Ruthless: Knowing the God Who Fights for You

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    Bo Stern paints a portrait of a fundamental aspect of God's character as revealed throughout Scripture. Reflection questions help you dig deeper to personally process what you believe.

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    When Holidays Hurt

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    Pairing gentle readings with uplifting Scripture, Bo Stern shares her struggle to care for her husband who has ALS – and suggests ways to embrace Christ's hope and healing during the holidays.

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Bo Stern

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Bo Stern is an author, a public speaker and a teaching pastor at Westside Church in Bend, Ore. Her books include Beautiful BattlefieldsRuthless and When Holidays Hurt. Bo is passionately involved in raising awareness and funding to research ALS (Lou Gehrig's Disease), an illness her husband, Steve, has been battling since 2011. The couple has four children and one grandchild.