As a young child, Kyle Campbell was diagnosed with an inoperable brain stem tumor, which caused symptoms from difficulty speaking and swallowing to nausea and general ill health. While radiation therapy in his teens alleviated some of Kyle’s symptoms, effects of the tumor (and side effects of his treatments) persist to this day. Now a husband, father of three, and author, Kyle is living a full, meaningful life. Through his difficulties Kyle has developed a deep trust in God and has learned to live on purpose with faith, focus, and flexibility.
As a young child, Kyle Campbell was diagnosed with an inoperable brain stem tumor, which caused symptoms from difficulty speaking and swallowing to nausea and general ill health. While radiation therapy in his teens alleviated some of Kyle’s symptoms, effects of the tumor (and side effects of his treatments) persist to this day. Now a husband, father of three, and author, Kyle is living a full, meaningful life. Through his difficulties, Kyle has developed a deep trust in God and has learned to live on purpose with faith, focus, and flexibility.
Get your copy of Kyle’s book: Beyond Belief: How Living with a Brain Stem Tumor Brought Faith and Purpose to Life
Kyle Campbell is a Christian, a preacher, a poet, a philosopher, a professor, and an advocate… but some of his favorite identities are husband and father. He has a BA in Philosophy from Cal Poly State University, San Luis Obispo, and an MA in Rehabilitation Counseling from California State University, Fresno. Kyle currently holds a position serving students in higher education.
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Joni and Friends envisions a world where every person with a disability finds hope, dignity, and their place in the body of Christ. Founded by Joni Eareckson Tada, we provide Christ-centered care through Joni's House, Wheels for the World, and Retreats and Getaways, and offer disability ministry training.
Crystal Keating:
This is the Joni and Friends Ministry Podcast and I'm your host, Crystal Keating. Each week we're bringing you encouraging conversations about finding hope through hardship and practical ways that you can include people living with disability in your church and community. As you listen, visit joniandfriends.org/podcastto access the resources we mention or to send me a message with your thoughts.
Crystal Keating:
Kyle Campbell is joining us on the podcast today. As a young child, Kyle discovered he had a brain tumor, which explained some of the health issues he had been facing. Even after radiation therapy, he still experiences the tumor's effects some 30 years after diagnosis.
And yet Kyle is thriving today and has realized how precious life really is, how desperately we need God and one another, and how important it is to live on purpose with faith, focus, and flexibility. Welcome to the podcast, Kyle. I'm so thrilled to have you on the show today.
Kyle Campbell:
Thank you so much, Crystal. It's a blessing to be able to be with you right now.
Crystal Keating:
Oh, it is a blessing for us. Kyle, you were diagnosed with a brain stem tumor, which is really rare when you were just five years old. You were so young. I'm wondering if you could just take us back to your childhood. How did the tumor affect you and what was it like growing up with an inoperable growth?
Kyle Campbell:
Yeah. I don't think I really knew what was going on. I was five. I didn't really think about things that much.
I just knew I had these symptoms. I would do things like struggle with balance, struggle with walking. I was always sick and nauseous and throwing up and I was having coughing fits. So, I would have to leave my class so I can cough in the hallway for a few minutes. And I remember going to bed at night thinking how sick am I going to be the next morning?
Not if I'm gonna be sick, but how sick am I going to be? Am I gonna be able to go to school or not? And I didn't connect it with the fact that I had a brainstem tumor. I just knew I was sick with these different things. And my parents and the doctors were worried about this brain stem tumor, whatever that meant.
So, it didn't affect me a whole lot at first besides my symptoms. But, you know, the brain stem, now that I've learned more about it, if you hold up your thumb, your brain stem is about the size of the adult thumb. And imagine, you know, your brain is the control center for everything.
And it goes through your thumb to your spinal column and then to your body. So that brain stem is such an important part of life that controls walking, talking, speaking, swallowing, so many things. And I had about the size of a grape. And I, you know, thumb-sized brainstem. And
Crystal Keating:
That's pretty large.
Kyle Campbell:
Yeah. And that was the biggest it got thankfully. It's never been biopsied. The doctors said it would be dangerous to go in there just to see what it was. And so instead we just kind of watched what would happen. So, I've had, you know, tons of MRIs, which is a way that you could see pictures of the brain and just kind of watched the tumor to see how quickly it was growing and what we had to do. And if it was growing aggressively, I really do not think I would be here to tell you this story today. Fortunately, I have lots of people praying for me and our family. The tumor grows but it grows slowly.
So, I've heard some people give it the name cancer. Some people, like my mom, has always been adamant that nope, it's not cancer. Truth be told, the question wasn't so much, what is it? What are we gonna call them? When are we going to label it?
But the question has been more of what are we gonna do about it? So, we kind of watched it grow. It got a little bit bigger, and I was having more symptoms. Altitude sickness, for example, I would need to be on oxygen so I wouldn't faint up in the mountains. And I had radiation when I was 14, and the doctor said, okay, it's time for radiation.
So, we said, okay. And radiation shrunk my tumor about half.
Crystal Keating:
That's amazing.
Kyle Campbell:
Yeah, I didn't understand it back then, but now I see, wow, that is amazing. And a lot of my symptoms went away instantly.
Crystal Keating:
Incredible.
Kyle Campbell:
Yeah, so I still hang on to a few symptoms or impairments or whatever you wanna call it, disabilities with my speech and my balance and my swallowing. But those are all manageable and I'm just grateful to be here, to be alive.
Crystal Keating:
Amen. We are too. And what a tremendous benefit, wow, that you received from radiation. That's incredible that so many of your symptoms dwindled. So, well, you know, Kyle, I'm kind of curious how your parents cared for you as a young child and later as a teenager who experienced many daily impairments and even just the weight of what's happening with my child and is he gonna be okay?
Kyle Campbell:
I realize that now, especially being a parent myself and having a child who is almost five.
Crystal Keating:
And you have three children actually. You're a dad and a husband, and it's amazing.
Kyle Campbell:
Yeah. Yeah. I have a four-year-old, almost five, and a two and a half-year-old, and a two-week-old at home and life is great.
I have an amazing wife and a dog. I enjoy what I do. But it's been a long journey. So, you asked about my parents, and being the parent myself, there must have been so many questions about what is this.
What's going on? There's something in my child's head. When I was first diagnosed, they lived in fear. They didn't know if I would make it. My doctors were not even sure at that time when I was diagnosed. I remember my dad saying on his lunch break, he would drive to my school and just watch me play so he could soak up the moments that I was there.
My parents made the decision to choose joy, to try and find that joy. So, they started going to church and found a great community and church. As a child, I had a great childhood. I have lots of fun with my family. We did lots of events at church in the youth group.
I did regular kid activities, but I just couldn't do it the way everyone else did it. I had to do it my own way. Because I'd get tired easily and things like that. I had my brother, you know, being buddies with me. So, as I said before, the radiation made a humongous difference. And I still have, you know, impairments, some symptoms, disabilities, I live with and manage, oh, and I forgot to mention now I also have double vision. So, I see two of things.
Crystal Keating:
That's a newer symptom?
Kyle Campbell:
It is. It came about gradually, and I was diagnosed. It's called diplopia, and I was diagnosed with that last year. And I went to a neuro-ophthalmologist, which I didn't even know was a thing. And right away after bone stem tumor and radiation, he said the double vision is probably a result.
Crystal Keating:
Oh, of the radiation?
Kyle Campbell:
Yeah. So, the purpose of the radiation was to kill unwanted tissue in the brain stem. And he called that collateral damage of the radiation, was that it was affecting my vision now. So that's a new one. But I wear glasses and it kind of brings the two images together into one. Oh, good. So, without my glasses, I see two. But with my glasses, I see one. But yeah, that's a new thing to think about.
Crystal Keating:
You know, it just makes me think of our friend Katherine Wolf. I don't know if you know of her story. She suffered a brain STEM stroke. And she was in a coma for 40 days in which pretty much all of the doctors thought she would die. So, the surgeon, as he was performing the operation, he wounded her deeply in order to save her life. And part of her impairments now are not from the stroke. They're from the surgery. And what a spiritual lesson it was to her about how the great healer even in this life, often wounds us for a deeper healing, and for a deeper purpose. And so that just made me think of your double vision is a result of the radiation that, you know, shrunk the tumor and it gave you tremendous benefit. And you know, God kind of does that in our lives. Like he allows things that are incredibly painful so that, we may turn to him and find deeper life.
Kyle Campbell:
Exactly.
Crystal Keating:
Well, you know, many people, Kyle, on our podcast have expressed, you know, kind of a spiritual awakening or spiritual crisis when they've entered severe ongoing health challenges. We've kind of seen this trend of like, people go into this dark night of the soul, like the black valley of God, where are you? And so, I'm just curious for you, what was the path that eventually led you to seek God and embrace faith in Christ? Did you go through any kind of spiritual crisis or awakening?
Kyle Campbell:
I love that question, Crystal. I absolutely believe that we, unfortunately, we need to feel that pain to know our depravity and be able to kind of release ourselves and grasp onto God, the foundation, the one who's always there.
And the journey for me to get to that place; I grew up with my family going to church. I was familiar with God and who Jesus was, but never really got a hold of me. I like to say, I had the head faith, but I didn't have a heart faith. So, I wasn't convicted. And when I went to college, I majored in philosophy which is a degree in critical thinking, basically. And after a while where I thought I knew everything; I realized that I didn't actually know anything.
And I wasn't leaning on God and belief for so many things. I had a friend invite me to church. Everyone there was just joyful. And I thought, man that's great. How do I get that into my heart? And so, I was just reading the Bible, thumbing through it, and it never made sense to me.
It was kind of like those long genealogies, without, you know, realizing the deeper meaning of those. I was just like; this doesn't make any sense to me. I thought, I don't see myself in this book and I thought, well, so many people say the Bible is just amazing. And there's either something wrong with all of those people, or I'm not seeing it yet.
So, I kept looking, and well, I came to the book of Ecclesiastes. And I said, huh, that's kind of a funny name for a book. And I read Ecclesiastes and I thought, these are my thoughts. I could have written this. Like this is amazing. Yeah. That so much in life is meaningless.
We're just turning wheels. And the only thing that really matters is knowing God, is following God, feeling God. And so that was kind of the turning point for me is when I realized that I wasn't in control. I didn't know anything and that, Jesus was the only one that was unchanging, that was a firm foundation. And so, you can read more about that in my book.
Crystal Keating:
And what is the name of your book?
Kyle Campbell:
The name of my book is Beyond Belief, How Living with a Brainstem Tumor Brought Faith and Purpose to Life.
Crystal Keating:
That's right. Amen. Amen.
Kyle Campbell:
God put it on my heart to write this book, to write my story and share what I've you know, experienced and what he's revealed to me.
And I was reading about brainstem tumors, and I could not find any other book written by someone with a brainstem tumor. I saw brain stem tumor books by doctors for other doctors and I found a few books on brain tumors. But I didn't see any about brain stem tumors, and it made me even more determined to share the story.
Crystal Keating:
Amen. And we need people just like you who are sharing like the depths of wisdom that God is teaching them through hardships. And I love the book of Ecclesiastes because Solomon is proposing so many questions that we ask ourselves about what are we doing here anyway, you know? What is the purpose of life and what is the end of all things? And so, it sounds like that really resonated with you when you came to that conclusion. And, you know, I think in parallel with that is when we go through hardships of life, I don't know if this is true for you, but for me, like I wanna seek meaning in it.
I find comfort when I can understand the whys of what we're going through, and we don't always get the whys. But for you, what things came to mind when you tried to answer the question of, why do bad things happen when there's seemingly no reason for it? Or maybe parents are even asking themselves, how did my child get a life-threatening brain stem tumor?
Or, you know, what hope do I have? What is there to believe in? I'm sure as a philosophy major and just as a person, you're wrestling with some deep questions.
Kyle Campbell:
Yeah. As a philosophy major, we kind of carry all those questions with us and are constantly thinking quietly about these things.
When I tried to answer why, I could never come up with an answer. My doctors, my parents, no one knew why I had a brain stem tumor. And so, I studied philosophy and I thought, hey, I'm learning a whole bunch. Maybe I'm going to learn, why do I have this? And after coming up with no answers for so long, I learned how to let go of that quest to find the answer.
The quest to find an answer for why was just exhausting me and I wasn't getting anywhere. There was a philosopher we studied. He talked about unknowable truths, things that are true, but we cannot know. For example, the beginning of the universe, we do not know exactly how God did it. But we don't need to.
It's an unknowable truth that we could believe. So, I figured my brain tumor was beyond my understanding. It was kind of a relief to give up that journey. But like you said, Crystal, we do find comfort and purpose in answering why. So even though I gave up, I still kind of had the question in the back of my head.
And I would love to share the answer that I found. I was reading the book of John in the Bible. And there was a story that I've read before. But for whatever reason at that moment, it was brand new to me. And I read it and I was reading at the very beginning of chapter nine, John nine. The disciples see a man who is blind, who was born blind, and the disciples asked Jesus, why is he blind? Did he sin or did his parents sin? At that time, it was believed that disability was a result of sin. So, they were asking, well, who sinned? I saw that and I said, hey, maybe I'm blind. I have a disability as well. I can identify with this guy. Why is his question and why is my question?
And the answer that Jesus gives is no one's sin. It wasn't this man or his parents. But this happened so that the glory of God could be displayed in his life. This happened so the work of God could be displayed in his life. And that's where I found my purpose. Talk about purpose. So bad things are happening, so the glory of God could be magnified?
That's my answer for why. Knowing that my disability is bringing God glory. As a philosopher, it's very easy to attribute that meaning to everyone, as an absolute truth of why bad things happen. And that's my answer. But it's hard when someone is in the moment, when they're in the pain and the suffering to give that answer because it still hurts. I don't think God takes pleasure in us having suffering. But he does say that we will need to go through suffering in order to come out on the other side. You know, I studied a few different religions back in my day. There were ones that talked about how suffering is optional, and we could choose to kind of let go of everything and not partake in suffering.
But what God says, what the Bible says is that no, suffering is necessary for you to enter that valley of the shadow of death, where you realize that you need me. And you realize that you can give up that sense of control that we mistakenly feel.
Crystal Keating:
Mistakenly feel. That is so key.
Kyle Campbell:
Yeah. And just allow God to just take care of us and do what he does and be our father and have him love us.
Crystal Keating:
You know, you said something really interesting that suffering causes us to go to the valley of the shadow of death. And it made me think like suffering is a kind of death. It strips us of the things that actually keep us from life, and it is so painful.
I wish there were another way. But when we are the Lord's, he promises to be with us through it. And I recognize that there are people listening who are in tremendous suffering and it's not gonna let up. And so, I just wanna take a moment to say, we don't speak these things tritely, knowing that there are so many people who are in tremendous hardships. We just pray for God's presence and comfort for you right now. So, thank you for sharing that, Kyle. That is so good that you know, these things happen so that God may be glorified. So, I kind of wanna turn the corner a little bit and talk about our culture.
You know, you talk about how we cannot do it on our own. I feel like we live in a culture that over-emphasizes the value of independence. And I think this has created a culture of loneliness, to be honest. But many of us, we've recognized we can't do it on our own. We can't live for ourselves or by ourselves. So, for you, how have you learned to lean on others through the ups and downs of daily impairments? And, even bigger question, how has the church played a role in your life and you and the church's life?
Kyle Campbell:
I love that, Crystal. And I love what you said that independence breeds loneliness, and I think it does. You know, we are told to just kind of pick ourselves up by the bootstraps and not, air our grievances and just kind of continue forward, put our head down, and be independent, which is great too. It's important to be able to do things yourself too. But when that independence becomes everything, when the goal is independence itself, we end up just cutting people off and saying, oh no, I'm not gonna accept your help because I could do it myself.
And we get lonely. So, to, to answer your questions, the first thing that came to mind was trusting the medical professionals, that they knew what they were doing. I had to rely on them for my care. My neurosurgeon, of course, my radiation technician, you know, just everyone.
My ophthalmologist, I even had an otolaryngologist, which is really hard to say. Throat doctor, except I have throat surgery to help me speak.
Crystal Keating:
Yes. Awesome.
Kyle Campbell:
And it really helped. And recently, I had voice and swallowing therapy, just kind of, yeah, kind of learning some techniques to not choke every time I eat.
My throat thinks it's choking when it's not. And so, I'll have a throat spasm. My throat kind of closes up so food doesn't go into my lungs. But there's no food there and it's just a hassle. So, I had to learn how to minimize those. So, I've gone through all these things and it's, and over again, it's humbling myself to know that I need help with that.
I don't want to see double everywhere I go. So, I'm going to go see a doctor and get the help I need. And so that's kind of where it began, is knowing how I needed people. And then, just connecting with people. But as a kid, I had difficulty speaking clearly. So, lots of people didn't understand what I was saying.
And so, I kind of stopped talking to people so I wouldn't have that awkward feeling. And it was more lonely. And now having...
Crystal Keating:
It's terribly isolating.
Kyle Campbell:
Yeah. Oh yeah. I feel like people with speech difficulties, we all kind of share that in common. It's really isolating. And I remember when I was seeing that throat doctor, he put me in a chair and he pushed a little tiny hammer back in my throat and had me saying, ah, sound.
And when it came out, and he was pushing on the muscle in my throat, my voice stopped being hypo-nasally like it always was. And I made my voice come out and it was the first time I heard my true voice.
Crystal Keating:
Amazing.
Kyle Campbell:
When I was 17,
Crystal Keating:
Oh, my goodness.
Kyle Campbell:
I heard that and I thought, wow, that's me. I know that voice. I've never heard it before, but I know that's me. And I thought, I'll do whatever I need to get that voice. And then I had the surgery, and it made a humongous difference. Now that I'm able to communicate more and connect with more people since the feeling of belonging has greatly increased.
And we found that in the church as well. I was very active in church and, getting to know other families. And recently, you know, not just going to church, but being involved. My wife and I we led some small groups. And if anyone is wanting to connect and you're not feeling connected, you feel like you're not thriving. I recommend so strongly get connected with one of your local churches and get into a small group, or a life group, or a cell group, whatever you call it. Because it's so hard to connect when there's so many people around you.
Crystal Keating:
Like in a big church.
Kyle Campbell:
Exactly, but in a small group, there's five or 10 people and it's amazing to be able to connect and have someone know your name.
Crystal Keating:
That is so key. I love that. And so, you know, you said something profound that we touched on just about control. And so, I kind of wanted to go back to that, like letting go of control can be terrifying. I mean, I feel like that's why we hold on, right? But it's sort of a mirage. How much control do we really have? And for you, it's been the pathway to contentment. So, what's that journey to really trusting God been like for you?
Kyle Campbell:
Letting go of control, the mirage of control is huge. And for me, I definitely experience that every day with my disabilities or impairments, whatever you wanna call them. For example, when I get up from my chair, and go have some coffee or whatever, I feel like I'm not in total control of where my feet are going to go when I walk. So sometimes I stumble. Or when I talk to someone, like even you right now, I feel like I'm not always in control of my voice or what my speech is going to be like, or what, you know, I might have to articulate more. So, with my vision, you know, with my, these things I feel like I'm not in control. And I'm actually thankful that I'm reminded so much that I'm not in control. God is in control with my diagnosis and everything. We can make decisions that influence things. But we have to let go of having to have a specific outcome because we're not in control of that. But what we can control Crystal, is how we respond. So, we can control our patience with our emotions and kind of the direction that we take. And we can think about, okay, is my response aligning with my values?
Does my response match with what I believe, with what God says? And if they do not match, if my response does not match what God says I should be doing, I might need to think about how I control my emotions. Yeah. So, it's been a journey, for sure. But letting go of that control, I'm able to be content because I never had it to begin with.
Crystal Keating:
That comes from a humble spirit, and I believe that God gave you that realization. And may we all come to that place where we recognize our position before God, that he is good and that he is control. And you're right, he's given us the ability to make decisions. That's so, so profound, so simple, but so good. Well, Kyle, how has life with a challenging condition really helped you reprioritize what matters most and how have you, pretty much stopped pursuing the distractions around you? You kind of talk about this in your book.
Kyle Campbell:
Yeah. Yeah, I do talk a little bit about that, and I think it's something that we absolutely need to think about as people. Nowadays, especially we are bombarded with notifications and popups trying to get our attention. And you know, some of us have shorter attention spans now because of the constant barrage of things around us trying to get our time, our mental space.
Crystal Keating:
So true.
Kyle Campbell:
And we need to stop. We need to think about what we’re thinking about. And I think the first thing goes back to control. We're unable to control the uncontrollable. So, I might not put all of my time into learning about a certain injustice if I cannot do anything about it. If I can, great.
I'm going to do what I can. But I can't spend my time worrying about things like how many thumbs up my social media posts get. You know, I need to focus on what lines up with the legacy that I'm going to leave. So, things that are very short-term do not matter so much to me.
And I think it goes back to living with a brain stem tumor and seeing how precious life is. I remember when I was getting radiation. I was 14 and I was at Sutter Oncology in Sacramento, down in the basement. I remember an older man getting radiation treatment for his, you know, whatever he had going on.
And I remember Crystal, he was just trying to make it about six more months so he could go to his son's wedding. I've learned so much about how fragile life is. We kind of take it for granted, I think sometimes. But it's not promised. It's not guaranteed, if we're gonna be able to experience certain things or how even how long we're going to be here, no one knows. And so, we need to be intentional about right decisions we make. So, I alluded to it before. I'm going to be patient and intentional about the things that have a lasting impact on people after I'm gone. So, my marriage, how I treat my wife, how I raise and how I teach my kids, how I treat other people.
It's things that will have a lasting impact. And the tricky thing is being able to spot and call out those time-wasting and life-sucking activities that we do. And being able to say, hey, wait a minute, I don't want that in my head and instead, I'm gonna focus on these other things that literally matter.
And I'm going to make the choice to move beyond the temptation, to satisfy my, you know, when I feel right now and I'm instead, I'm going to choose to do what really is important to me and what's important to God.
Crystal Keating:
That is so good. You know, when you're talking, it made me think of Jesus talking about how we are to abide in him, and that as God is the vine dresser and he prunes us. He takes away anything that, like you said, sucks the life out of us and really prevents us from bearing much fruit, which is his heart for us, that as we cling to him and love and that he infuses his life into us, that we get to see all of the fruit of his spirit in us.
And so, I just love that intentionality in the way that you live, that we want to eliminate the distractions and the things that are just for instant gratification and don't really make an impact in the long run. So, Kyle, it's been so fabulous having you on the podcast. You are the author of Beyond Belief, How Living with a Brain Tumor Brought Faith and Purpose to Life. I'm so thankful you have ministered to me greatly. We just are so blessed to have you on the podcast. Thank you for joining us today.
Kyle Campbell:
Thank you so much, Crystal. It's incredible to connect with the Joni and Friends Podcast and with you and, I'm so thrilled to share what God has given me to share. So, thank you for the opportunity.
Crystal Keating:
Thank you for listening today. For more episodes, find us wherever you get your podcasts, and be sure to subscribe. We'd also love it if you would tell a friend. And for more encouragement, follow Joni and Friends on Instagram, Facebook, or YouTube, and visit our website at joniandfriends.org/podcast.
Thank you for listening to the Joni and Friends Ministry Podcast.