Episode 90 – Unstoppable Brain Stem Tumor Survivor with Kyle Campbell
At the age of five years old, Kyle Campbell was diagnosed with an inoperable tumor on his brain stem. While there were issues he had to face including some motor and speaking issues, Kyle attended public school where he continued to progress and grow. At the age of 14, Kyle undertook radiation treatments that improved his overall life circumstances.
Kyle went on to receive his Bachelor’s degree and later his Master’s degree in Rehabilitation Counseling. Today he works at a community college in Visalia CA as both a Support Services Coordinator and Part-time Instructor in the Access & Ability Center. His philosophy of life is extremely positive and forward-looking.
I believe you will find this week’s episode most inspirational and well worth hearing. Kyle shows that we all can be unstoppable if we choose to move forward in our lives and not allow obstacles to hold us back.
About the Guest:
Diagnosed with an inoperable brain stem tumor at age 5, Kyle’s life has been full of twists and turns. Even after radiation therapy and lots of doctor visits, he still experiences the effects of his brain stem tumor daily. Now, thirty years after diagnosis and far from the ‘failure to thrive’ he had once been described as in his medical reports, Kyle has realized how precious life really is, how we cannot do it on our own, and how important it is to live on purpose with Faith, Focus, & Flexibility.
Kyle Campbell is a Christian, a preacher, a poet, a philosopher, a professor, a disability advocate, and more, but some of his favorite identities are husband and father. Born and raised in the Central Valley of California, Kyle lives in Visalia, CA, with his wonderful wife, Lori, a 2-year-old boy, a 4-year-old boy, and one more boy due in January!
Professionally, Kyle has been working at a community college for seven years, as both a Support Services Coordinator and Part-time Instructor in the Access & Ability Center. In this role, Kyle helps students with and without disabilities navigate their educational journey by learning what accommodations, strategies, and supports will help lead to success in college. He also created and teaches a course on Personal Development and Social Skills.
Kyle has earned a Bachelor’s degree in Philosophy from Cal Poly State University, San Luis Obispo, as well as a Master’s degree in Rehabilitation Counseling from California State University, Fresno. He has been the recipient of multiple awards and scholarships, and is nationally recognized as a Certified Rehabilitation Counselor. He has been an editorial assistant, the co-author of a published journal article and he is excited to share the lessons, perspectives, and active faith that come from living with a brain stem tumor. Kyle talks about this, and more, in his upcoming book, Beyond Belief: How Living with a Brain Stem Tumor Brought Faith and Purpose to Life.
Ways to connect with Kyle:
Kyle’s Website Link: www.KyleBeyondBelief.com
Kyle’s LinkedIn Profile: https://www.linkedin.com/in/kyle-campbell-29865a7a/
About the Host:
Michael Hingson is a New York Times best-selling author, international lecturer, and Chief Vision Officer for accessiBe. Michael, blind since birth, survived the 9/11 attacks with the help of his guide dog Roselle. This story is the subject of his best-selling book, Thunder Dog.
Michael gives over 100 presentations around the world each year speaking to influential groups such as Exxon Mobile, AT&T, Federal Express, Scripps College, Rutgers University, Children’s Hospital, and the American Red Cross just to name a few. He is Ambassador for the National Braille Literacy Campaign for the National Federation of the Blind and also serves as Ambassador for the American Humane Association’s 2012 Hero Dog Awards.
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Michael Hingson 00:00
Access Cast and accessiBe Initiative presents Unstoppable Mindset. The podcast where inclusion, diversity and the unexpected meet. Hi, I’m Michael Hingson, Chief Vision Officer for accessiBe and the author of the number one New York Times bestselling book, Thunder dog, the story of a blind man, his guide dog and the triumph of trust. Thanks for joining me on my podcast as we explore our own blinding fears of inclusion unacceptance and our resistance to change. We will discover the idea that no matter the situation, or the people we encounter, our own fears, and prejudices often are our strongest barriers to moving forward. The unstoppable mindset podcast is sponsored by accessiBe, that’s a c c e s s i capital B e. Visit www.accessibe.com to learn how you can make your website accessible for persons with disabilities. And to help make the internet fully inclusive by the year 2025. Glad you dropped by we’re happy to meet you and to have you here with us.
Michael Hingson 01:20
Well, hi there, wherever you happen to be. This is Mike Hingson, and I am hosting once again, unstoppable mindset where inclusion, diversity and the unexpected meet today we get to speak with Kyle Campbell. And what an amazing story for a lot of reasons. You know, one of the things that I’ve said many times during our podcast episodes is that one of the main goals I have is for everyone who listens to this to see that they can be more unstoppable than they think they can. And you know, it’s not always about making some sort of a specific concerted effort to be unstoppable. But it’s more an issue of just choosing how you live your life and choosing not to let things hold you back. Kyle was diagnosed with an inoperable brainstem tumor at the age of five. He was even described in his records is failing to thrive. But today now at some 35 or 36 years old, he works at a community college. He’s been a preacher. He has been a guest speaker at a variety of places. He is writing a book, and he is by any definition thriving, but for the purposes of our podcast. We’re just going to say that Kyle is unstoppable. So Kyle, welcome to unstoppable mindset.
Kyle Campbell 02:45
Or thank him Michael, I appreciate that I’m never mind described as unstoppable. So thinking that made me smile. It’s a pleasure to be here with you. And I am happy to be able to chat with you have it?
Michael Hingson 03:02
Well, maybe they’ll put that in your medical records now you’re unstoppable.
Kyle Campbell 03:08
Sounds good to me.
Michael Hingson 03:10
Well, tell us a little bit about your your life story growing up and how it was discovered that you had an inoperable brain tumor. why that happened? If you’re willing to talk a little bit about your early life history? Let’s let’s hear it.
Kyle Campbell 03:23
Of course, yeah, we’d love to share. So when I was a little boy about, or also, I hadn’t just kind of some strange things that were not a call. And my my voice I had a Hypo natality. And when they when they mature, and lots of the young boys have a high voice, which is no more at that age. But my voice seemed a little extra nasally and not to be changing. So my mom, my mom was keeping an eye on that. And curious about that. And there were a few other symptoms as well. But it wasn’t long of the speech, my mind. So my mom took me to a doctor and the doctor says, well, he’s just, you know, taking more time to venture and given time to, to go, you know, and see what happens. And my mom wasn’t convinced about that. She thought, Oh, I think there might be something else going on. So, uh, she took me to a different doctor who did an assessment with me and he kind of saw a few more things and he got it wrong. My mom made me cry oshin get an MRI when they take pictures of the ends tend to be a Barney just to make sure everything is okay with his brain and development. And then yeah, they found their breaks and they found a tumor on my brainstem. And so the the average, don’t brainstem is kind of a little bit bigger than the size of your thumb maybe eight centimeters long. And you know, I was a kid, so I’m sure mine was more than that. And, you know, you think about your brain connects to your spine via the brainstem. And so a whole bunch of, you know, nerves, goes through that brainstem, and connect to your spine to your body. And basic, rife functions are controlled in the brainstem, things like breathing, swallowing, walking, talking gene. Even more nuanced things like you know, I can read pressure and heart rate and things like that. It knows that lot going on in there. And I had a I’m going to move I, you know, a little marble type thing in mind. And there was a question of, Okay, do we go down and biopsy it, and try and poke around and get out. And the neurosurgeon that I want to say, you know, about five, five years ago, we wouldn’t have Rockledge on this, by now the current trend is to play it safe. Because if we go in there and operate, we might touch things and move things, that would not be good, you might cause more damage, then, you know, then then we want, so we just kind of watched the tumor. And I had MRIs every, every month, every few months to see what was happening. And if it was quickly and aggressively growing, we would have had to do something right away. Amazingly, mine was not doing that it was growing a little bit but it was slow it was benign is what they would say or that it was acting like a benign tumor. I can’t say for sure what it is because we haven’t biopsy it yet. But, but it’s it’s there. And you know, it caused a whole bunch of symptoms. When I was a kid. I would constantly mistake. Nauseous made me dizzy, fatigued, I’m strong enough I’m gonna have coughing fits. I remember micron going to bed at night. When I’m sitting there thinking, thinking Hmm, I wonder how sick I’m gonna be in the morning tomorrow. And you know, and not not a fun thought to have no kid. But, but yeah, that’s kind of wonder was like, as a as a little kid. And yeah, I just have so much to say about it, that it’s coming to mind. I wasn’t ever afraid of it. And you know, I my parents took me to dog goods and we trusted Oregon doctors with whatever they recommended that would you know, men sense. So we trusted and then those people to provide care and and they did it. And I’m here today. So I learned you ation you go. Yeah, I’m here.
Michael Hingson 09:20
Let me ask you this. So you talked about your voice being nasally. And clearly your voice does sound a little bit different than than the voices of a lot of people. Why is that? Is that because of the tumor today?
Kyle Campbell 09:32
Yeah. So essentially what that tumor does is very slightly paralyzed is my left side. So in my facial muscles, you might see it. My eye and my lamp are a little bit droopy, not too much. But on the inside, with still connect to the mouth. There is the larynx And then above that, where the mouth connects to the air passage to the nose, the nasal cavities, the clinics, and the way that they’re designed is to close when we’re not talking, and then to open when we talk, right, so open when we talk so we can put jacquela voice, and then they close when we’re not talking. So we have, you know, Ah, man, I can’t garden backward. They open when we’re not talking to our nose. Right? Close when you’re talking. Yeah, so we have the breath to project and talk and speak out, you know, and more my mom, one of my sides, my left side and didn’t move any dirt around. Now next are the fairings. So I constantly have any open passageway for my throat to my nose. So when I would speak, I’m gonna get air coming out my nose, God, stop. And when and I spent years in speech therapy, and school, and pretty much the only thing we can do is, have me speak louder. Try to help them and help. My main net difference. I remember I was 17. And I was referred to a specialized EMT, you don’t know you still have doctor, someone who specialized in like facial, plastic and reconstructive surgery. And he lifted up, he put a device in the back of my throat and lift it up. And how did he say, ah, and my voice changed from nasally sound I need used to, to, to me to run a shutdown, like when houses was closed. And I thought, wow, I can I’m wanting to have that voice. That’s, that’s me. That’s my voice. And so I had surgery when I was 18. To help close that pipe, I guess my throat and so my voice is a lot more intelligible now. But yeah, so and still Initium ran my estimate,
Michael Hingson 12:45
but clearly, you’re very understandable. And and so on. So when did they start doing radiation?
Kyle Campbell 12:51
So, um, they want and the doctor is recommending that we wait until after puberty for me. So if I hadn’t had it radiation before, puberty was hormone distribution that might have been thrown off. And I might have had some minor issues coming on. So we wait then until after people read in our for me, I gotten to be about about 14. So it’s about 2001. And the tumor was slightly growing. And the doctor my mom, my neurosurgeon said, Okay, it’s, it’s gone big enough, we need to do something. hormones have mostly gone, you know, kicked in. So yeah, that’s when I had it.
Michael Hingson 13:49
So what did the radiation end up doing for you?
Kyle Campbell 13:56
So the way that I like to think of it, you know, as you can is that they were shooting lasers through my head. And basically, they were burned, you know, and they were targeting that tumor to damage it. And then anemia it is shrunk the tumor by about half which is huge. And so in the majority of my symptoms went away. I was no longer nauseous, daily. I was no longer dizzy. I didn’t have any more altitude sickness. I was able to gain weight and gain muscle mass which was a struggle for me when I was younger and beyond. And my my coordination and balance are still about the same. There’s still you know, I’m not in the best shape. But I received my Stanley symptoms of just not feeling good. And they went away. And I don’t have to think much anymore, which is nice.
Michael Hingson 15:14
So what was it like as a kid and interacting with other kids and so on and the school and all that. Were growing up through high school with all of this going on, and then the radiation in the middle and so on.
Kyle Campbell 15:28
You know, in an elementary school I, I mentioned, at the height of my sickness, I’d be you know, I remember a few times I threw up in class in the trash, Jen, you know, I can do anything else. Or I remember having to leave step outside of that, because I had an uncontrollable coughing fit. And I didn’t want to interrupt the class too much. I didn’t want all my friends staring at me, like, Is he okay? And I was weak. I was physically very small head. They called me skinny bones. Because I had trouble building muscle. Because my lap and Heartway and this, you know, on the whole thing. And, and oh, yeah, so my, my mom was worrying about me in the fifth or sixth grade, she thought he is a very small kid, maybe he’s being bullied or something. So my mom asked the young Judy person is okay, like, is he mean boggling by anyone? And then your duty postings for my mom. He’s actually friends with the Baris. And I didn’t realize him, but I was just being kind to everyone. And I thought these kids were gone. And I was crying to them. So I was one of them, you know, even though I wasn’t really picked on kids, and they weren’t either. They were just as short rambunctious. Which, of course, I am not. But
Michael Hingson 17:27
but you got along, obviously, and they didn’t tell you, I gather.
Kyle Campbell 17:31
Yeah. And, you know, I was just being kind and calling out their value. I guess I didn’t have there was words to say. But, but yeah, lineation, in junior high. And in high school, most of my symptoms were gone at this point. Except for, you know, my balance and my speech. By me, we practiced those and, you know, you did the best you can make the most of what you have been grateful to be every day and, and that attitude has stuck with me stuck with my family. And it makes a big difference in our every day interactions.
Michael Hingson 18:24
Well, and I would just say, that’s as much a good a definition of unstoppable as one could find you didn’t let any of that get in your way. Did you get bullied in high school at all? No. So there you go. Because you related to people, and you clearly had a demonstrable way about you that people didn’t bully you, they they accepted you. And, you know, I think a lot of times, that’s the best thing that we can do is to try to avoid any of the kinds of things by relating to people and you certainly did that.
Kyle Campbell 19:05
Certainly, yeah. Learning to people is is huge, being kind here. I worked in a community in college, nowadays, and I teach a class that I had the opportunity to kind of create, and it’s all about connection and the value of knowing how to invite people in to connection and how to maintain that connection. I’m not how to win arguments. Because winning doesn’t build connection by how to connect together and grow together on on a journey of you know, mutual value as well. Apr.
Michael Hingson 20:01
Well, you, you certainly have set a good strong example, which is as good as it could be. And I’m assuming that that all went on through college and you you did pretty well. And you did thrive.
Kyle Campbell 20:17
I did I then, meanwhile, I got my bachelor’s degree in philosophy went to Cal Poly, San Luis Obispo and got my master’s degree and rehabilitation counseling from Fresno State. And it’s been it’s been great. And so I, I have the privilege to work in college. And it’s really exciting to me to come and work in a place where everyday people come to run something new to build something to improve themselves, their understanding of the world around us and how they fit into our world. And how many people relate with each other.
Michael Hingson 21:12
will tell me, you in your in your life journey you started with definitely the whole issue of dealing with perseverance. Yeah, and you’ve developed a good life philosophy. How have you progressed? Or how did you progress from philosophy to faith to being involved in rehabilitation and rehabilitation counseling, and how do those all interconnect?
Kyle Campbell 21:39
The ABS has moved me into Kleenex even though it seems like they might not at all. So I grew up in church and having faith as a Christian, as a kin and our family. And when I moved to college, I had one week of studying philosophy of Plato’s Allegory of the Cave, in high school, and I thought, hey, that’s really fun. I’m going to be a pornography major. And I went to Charles Harley, and I studied philosophy. And I’m embarrassed to admit, in my philosophy, years in college, I thought I knew everything I thought I knew better than other people. I was really into analysis and logic, and rationale, rationality, I guess, you know, if something made sense, I’m going forward. If it didn’t make sense, I it was a waste of my time. And things like Emotion. Emotion didn’t make sense. I couldn’t think about it logically. So I thought I’d knock the window and add certain aspects of faith. I couldn’t improve them, so I wouldn’t deal with them. I will say I remained a Christian the whole time. I believed in God because then I selflessly God make sense to me and I and our logical fashion. I know there are arguments against God’s existence. And after going over them, none of them amounted to much in my in my perspective. And as I continued in philosophy, I got really into what does it mean to know something? And how do we have knowledge? What does it mean to know something? And I kind of realized that I knew a heck of a lot less than I thought I knew. To to have knowledge when I’m absolutely certain about something then dotnet logically and rationally makes sense. And no, no longer things meet that criteria. At least after the goes through my interpretation, my intuition so I said, Oh, man, I believe all these things I thought I knew Hey, when my thigh faith thing I used to know from if I believe things I cannot prove. Maybe I could believe the song I suppose. I suppose it’s a faith that I was holding back on because I couldn’t improve them. Um, so I started in going to Church to learn more about it. And it was just an amazing way to connect with people and build those relationships and have that shared identity, and Jesus Christ and not in ourselves. So I started in, in building empathy for people in the community. And so I ended up going, I had a job that wasn’t going anywhere. So I went to Fresno State to get my masters and we have counseling. i Oh, my God, when I went to Fresno State, I can’t do not I didn’t even know what rehabilitation counseling was. I just thought I needed to do something different. They, they let me into that program. And I am fine. And they, they, they are going to pay my tuition. And to pay me and on top of that to go and do it. So why not? So I went to study, counseling, and learning how to connect with people. And I remember, you know, I came from philosophy, I had this very enlightened mind. Because that’s what I was used to. And I remember counseling, someone, you know, I missed the counselor name would read counselor Lee. And they were talking about how they had this really dramatic thing going on. And it was really tough. And so I thought, oh, okay, I know what that’s like, because I’ve had that in my life. So I’m gonna connect with you by saying, oh, yeah, I understand. Me too. I’ve had that too. So as, as this person was talking, in the midst of her grief, you know about this loss that she has. I was smiling and nodding, preparing you to say, I understand. I’ve had this happen in my life. And I remember she’s looked at me with, you know, daggers in her eyes, she gave me the tiger, she looked at me. And she said, Stop effing smiling at me. And it just kind of stopped me. And I was like, whoa, what? Like, that’s intense. And I eventually I realized, even though I’ve found my own grief, and I’ve had my own experiences of challenge, I cannot say I have had the same experience as someone else. You know, we all have different things that we’ve all gone through. And me wanting to avoid that displeasure with her on Cosmo Ness without grief, when it’s not okay to push it aside. But I needed to connect with her, and allow her to take the reins, and experience what she’s experiencing. To be the iceberg of her own experience. And that’s, you know, kind of reinforced in me to think that I’ve known about me, life is not about what I think about things. Life is about other people and letting them do own and grown and do what they need to do. And it’s not my place to impose my value and my judgment on people. It’s, it’s my place to encourage them to do what they need to do.
Michael Hingson 29:11
Were you able to connect with her? I was, yeah. It’s, it is all about learning how to truly be empathetic, as opposed to just saying, you know, it all which is, of course, what you said earlier. And it makes perfect sense. You know, it’s, it’s so easy for us to just say, Yeah, we know, I’ve been there done that. But that doesn’t really matter. What matters is if you can show that you understand that she’s been there and she’s doing that and she needs your support. Not just your don’t want to say arrogance, but your idea of what she’s going through so that makes perfect sense.
Kyle Campbell 29:55
Why you know, I I I don’t My book I have coming back here in a moment. But one of the lines, I say in my book is, people don’t need your sass, they need your support. And when we make it about us when we say, Oh, I’ve been through that, or, Oh, this is when I think about your situation right now, when we invite ourselves to give those uninvited, you know, pieces of advice, we’re kind of taking over, more not allowing someone to experience what they need to experience. I believe that we need to get over ourselves. And we need to learn how to hold back on that thought of, Oh, I know how to solve your problem. I know what you need to hear. And we need to just put ourselves on pause for just a minute to let someone share and talk about what they’re experiencing. I’m certainly certainly there’s a time and place for us to offer advice and talk about well, we’ve been to are just like I am right now. But we need to be mindful the timing, and the circumstance in which we offer that advice.
Michael Hingson 31:37
So how does faith enter into your work as a rehabilitation counselor.
Kyle Campbell 31:44
So, um, I have the, the Certified Rehabilitation Counselor credential, but that’s not my position at the college. I won’t guys’s student services, support coordinator helping people navigate in college and different assignments, different situations based on their barriers brought about by disability aspects of disability. And it absolutely has so much to do with my position. I love what I do, because I haven’t a chance to interact with so many different peoples and students about different things. And what I bring with me from counseling, and from my faith is that, oh, it’s not about me. I’m not here to impose myself onto anyone. But I’m here to be open for when someone comes to me with an issue, whether it’s him or whatever issue it is, um, and we it’s easy to be quick to solve a problem. Because we recognize the problem, and we say, Oh, I know what to do. So if I have a student and come in and say, I am having trouble with this homework assignment, I don’t know how I don’t know what my teacher wants me to do. It’s so easy for me to jump in and say, Oh, it’s easy. All you have to do is Sanaya that comes I get it. But that approach is not what someone needs to hear they need my support, not my perspective on how I would do it. Maybe they do but not yet. So every single person, we interact with every single person that we see, they are carrying a story with them. They’re carrying a perspective, and a background and loads of experience with them. And it’s all these things that make us who we are as individual people. And so, when someone comes to me for help on how to do anything, my position is to be curious to be curious about whose error, who they are and how the day is going to build that we’re poor. And also, how can we solve together and what you’re doing but anyway experiencing so to to allow someone the chance to have the autonomy of their own situation, but also to offer my perspective. There’s, and my, you know, my faith certainly has a lot to do with that. I don’t know if anyone listening is going to remember. I don’t know if you remember Michael, there was a singer in the 70s named Keith Gooding. And he played piano on your saying he was, you know, awesome guy, keep going. And one of his songs, it’s called make my life, a prayer to you. And one of his lines in non song is, it was so hard to see, when my eyes were on me. And I think as people, it’s easy to put our eyes on ourselves to think about ourselves as the hero of the story, you know, because we have got, perspective is kind of built into us. But it when our eyes or our eyes when we only think about it ourselves, it’s hard to see other people it’s hard to see in that situation. Yeah.
Michael Hingson 36:12
Well, you know, one of the things that I’ve always felt it is that life’s an adventure. It’s an event, but it’s not just an adventure. For me, it’s an adventure for you. It’s an adventure for everyone. Yeah, and, and we are all traveling on the same multi lane road of life, but we’re all having our own different adventures, and it would be arrogant of me to presume that I know, all that there is to know about you and your life, you come from having different experiences, but my gosh, together, and learning from each other, we both can grow, which is really as good as it gets.
Kyle Campbell 36:52
Michael Hingson 36:57
Oh, there you go. Well, let me ask you this, you know, so clearly, people would say you have a disability, because of being operable brainstem, and all the physical things that it’s done, although the disability is, is, is, I think, probably as much in other people’s minds as it is in our own. But talk about a little bit, though, just the whole concept of disability, how do we view it? How should we view it? I know, there are a lot of different models of disabilities and so on. How would you how would you go about really describing what disability should mean?
Kyle Campbell 37:36
That’s a great question with 1000s of different answers. And so for me, I think, certainly in going up with disability or disabilities, I never knew I had I, I had this ability, I didn’t identify with it. And then just wasn’t talked about. It wasn’t avoided. But I do not remember, there was the word around my life in, you know, in the 90s, and 2000s. And even when I went to college, I knew about the disability resource center that we had. But I didn’t identify it or as disabled or with a disability. Because I thought, Oh, I function. So that’s, I mean, you know, that was my understanding. And it was when I went to Fresno State to study, live in a teaching counseling, where, you know, for those of you who do not know, we have visitation counseling, is counseling with a focus on people with disabilities, on how to work with people and what they might experience with their disability and so on, so forth. And it was in my program that I learned one disability actually was, you know, I live in an impairment that can affect us in different ways. And I It was then that I realized, wait a minute, I avoided me, I count as having a disability. I have, you know, daily impairments in my activities of daily life, you know, walking and talking and you know, things like that. And now, I still experienced every day every day. Um, and so, you know, when I went to school, we learned about different models the night said, monochrome, The medical model of understanding disability is that disability is, it was sort of something wrong within the individual, something that needs to be cured by a doctor, so that you can be healed and be better in some back into society as non disabled anymore. So that was that’s manucho Power of disabilities, and it’s the individual who is disabled. And the social model of disability is that no, no, no, it’s not the individual, it’s society that disables the individual based on how societies built and set up. And the program I went to, was all about social model of disability, you know, I’ve been training people, as persons first, which I got really my mind and made sense to say, Yeah, we don’t talk about disabled people, but people, it’s a person with a disability, you’re putting the person first. And the idea is that more you’re valuing the person before mentioning the disability. So you’re valuing the human before the clinician. So I came out of my program, you know, all amped about Houston first language. And I remember I just told one of my colleagues at work about Hussin first language, how we shouldn’t say disabled person, we should say, a person with a disability because we don’t want to disabled someone, we want to dry them up, you know, in stark, orange condition. But are you the person. And so I felt good about myself seeing all of this. And I remember, nice, a student walked in, I was in my back office, they said, Hi, I’m a disabled student, and I need such and such, you know, and I kind of wanted to go out there and say, no, no, no, you’re not a disabled person, you’re a person with a disability. And, of course, I wouldn’t do that. Because I can project value is values onto someone. But it made me think, Wait a minute, if I’m wrong about if this student is identifying as disabled first, you know, I got curious about that. And I found on mono disability and called the identity model of disability. And that’s where we identify and in boys, although disability orientation that causes impairment, and we embrace it, embrace the culture, not being able to do something as making us a part of who we are. So, you know, I used to think the medical model was bad social model was good. And, you know, that brings to mind my, my favorite Star Wars movie, Star Wars Episode 31 Venge of the Sith. And there’s their power at the end of the movie, where Anakin Skywalker is doing bad things, and he’s about to become Darth Vader. And he says to me, wants to know me, you enough for me, or you’re against me, wanting to Gianna and Obi Wan being the master Jedi, of course, I have said only assist dealers in absolutes, which is an absolute theme and which is kind of funny. Most important is that it doesn’t need to be this or that. And it doesn’t need to be medical or social. And I’ve seen him with my life. Part of it truly is medical. I have glass function. And I had medical procedures variation and eye surgery. And they they really improved my function. And I’m going for oh nine so there is availability ticking on a medical model. And certainly there is up Look at to the social model. I do a lot of LinkedIn learning classes. And I didn’t want by a Paralympian. Her name is Liz Johnson. And she was saying that people have disabilities people have these conditions that they live with. But it’s society that disables us. So if if I had to walk a tightrope to my car, you know, Well, normally I’m going to do that variable, the only way I could do it, then I’m disabled, is I’m not able to do that.
Michael Hingson 45:44
Or you figure out a way to do it. But I think that one of the the big issues that we, we all really need to think a lot more about and I’ve started thinking about, and I’ve been using it lately in some speeches that I’ve given is that words matter. So for example, persons with disabilities, does not mean we don’t have ability, and we’ve got to, and have the right to and should change what disability means. It doesn’t mean a lack of ability at all. Yes, it is a way that that as people like to do we get classified. But as I point out, and I’ve done it a number of times, I don’t think there is one person on this planet who doesn’t have a disability. Yeah, most, most people are light dependent. And they don’t get along well, without lights. I just yesterday evening, we had a situation where someone was here helping my wife with some things. And it was Halloween. And one of the things we weren’t doing was giving away candy that tells you that this is being recorded on November 1, but we we, we turn the lights off so that people wouldn’t continuously ring the doorbell because we’re not doing trick or treating. But this person couldn’t get around in the house. And, and that’s typical. So we we dealt with it. But the bottom line is that the the light bulb was invented to give people a way to be able to function in the dark, it doesn’t change the fact that they have a disability. Compared to some of us now, I realize there are a whole lot more light dependent people than light independent people. And all that really should say is that we need to be a little bit more open and understanding about people’s differences. And that’s part of what we don’t tend to see a lot nearly as much as we should and you know, you use some some terms like impairment, and and their problems with that. Are you impaired? Well, it depends on how you want to look at it. Are you mobility impaired? Well, let’s talk about when you talk to mentioned the tightrope, how many people could get on a tightrope walk into their car today? Right? Yeah, and are not alone in that not many is absolutely right now can more people learn to do it? Possibly. But the bottom line is they can’t today. And so we’ve got to drop the concept, it seems to me of impaired people who happen to have diminished eyesight are called either blind if they’re totally blind, or visually impaired. And first of all, I think that that’s a serious problem. The so called professionals in the world have dealt with that they have, they’ve created those things to make a schism and a difference of classifications between someone who has no eyesight and someone who has some eyesight, but doesn’t have full eyesight. But the problem with visually impaired is first of all, visually, we’re not different simply because we’re blind or because we have a lack of some eyesight. And so visually is not something that should be used. So you could change that to vision. But impaired again means you’re still equating it to full eyesight. And it’s like with with people who happen to be deaf. They’ll shoot you if you say deaf or hearing impaired and you probably know this as well as anyone, right. Why? Why is it that people who have some hearing loss don’t want to be called hearing impaired? Do you know?
Kyle Campbell 49:33
Well, I think it goes back to identity and how we see ourselves how we think about ourselves. And like you mentioned, Michael, people have a tendency to want to categorize others and that’s kind of how, you know, he would do things sometimes. And people have said such a wide variety of experiences and abilities, and characteristics and things to do with them. Where we, we can’t really easily put someone into a category, we can’t really lump someone based on our, our own perception of them. And yeah, it makes me think about what you were saying about language. And learn how words change, meaning. And even though we might say the same word, Michael, we might have different meanings to that word.
Michael Hingson 50:57
But we can change definitions. And we don’t tend to do that. In the area of disabilities as much, because people really still consider us impaired or not having as much ability. And the answer with deaf people and heart and not using hearing impaired is they certainly culturally do not want to be viewed as impaired. And there’s no reason they should be. So you shouldn’t have that equation that says that you’re hearing impaired and I’m not so I’m better than you. And that is one of the reasons that they that the general preference is deaf or hard of hearing, you’re taking away the whole concept of impaired. And so like with blindness, it shouldn’t be visually impaired or vision impaired, it should be blind or low vision, take away the equation, the equating part take away the comparison. And there’s no reason that we ought to not do that. In our world today, people are afraid of disabilities, because oh, it could happen to us. We’ve seen it we see things happen. Well, yeah. But there are a lot of things that can happen to a lot of people. And somewhere along the line we have to make the determination is a society. that disability is a way that we classify people, because they’re somewhat different from us. So does that mean a left handed person is a person with a disability? Because they aren’t like most people, by the definitions it should be. So, you know, we don’t we don’t deal with that very well. But we’ve got to get away from feeling that disability means lack of ability, and we shouldn’t dance around it, it’s playing disability fine. I’m a person with a disability. And so is Barack Obama, and so is Joe Biden. And so were you and so as everyone else, everyone has challenges, and everyone has differences.
Kyle Campbell 53:15
Everyone has challenges. And this ability, disability, you know, we’re all gonna have a disability at some point. As we age as our life changes, we’re experienced these different things. And we meet the criteria, the definition given for disability, but it’s how we, how we identify, and II mentioned value. It’s helped me value in childhood that really makes the difference. I think, that, you know, we, I think like all culture, what the message was sent is that we value abilities to do different things. And which is hard for someone who has had a difficult time dealing with things. I mean, I like you know, I’m, and I like people, but we need to educate, educate, that, um, a person’s various aspects to their identity does not impact their value as a person they have no value is you can’t take it away. You can’t add to it. You can’t change it. A person is valuable in and of themselves. And that’s it. something special, I think
Michael Hingson 55:02
we need to recognize that everyone has gifts, and everyone has challenges. It doesn’t matter who we really are. So what college do you work at now?
Kyle Campbell 55:14
I want for a community college to invest in the essential battery.
Michael Hingson 55:20
Right? And what’s your favorite part of the job?
Kyle Campbell 55:24
I’m working with students who are curious, you know, I mentioned curiosity. And I’m doing this to get to know people and students are curious about their different subjects, their different classes in school. And you never know who you’re going to meet those people with all kinds of different backgrounds, and just so many potential connections. But I really value the growth mindset that is on the college campus or in a school setting. We’re here to learn. And we’re here to unstoppable. Thanks. So that’s my favorite part. Now environment.
Michael Hingson 56:20
You’re clearly a very resilient person by any definition. So where do you find hope? And what would you advise others of us in terms of how to find more hope and bring it into our lives?
Kyle Campbell 56:33
Thank you, Michael was the land is my, one of my absolute favorite words. My other word is appreciate. And both I was doing it and appreciate our long words, they have forced them forcing the boys there. You know, someone like me, we don’t just say him on accident, we have to be intentional to say, um, when when my other people once multibeam resilient as to be flexible, to have hope that no matter what happens, it’s going to be okay, I’m gonna find a way to make me my need to adjust your path a teensy bit. Bozena has been able to say, oh, it’s not working out the way I planned. But that’s okay. Because whenever it happens, it’s going to have value. So, for me, I’m with my Christian faith. I know that my hope is with Jesus, and my hope is with God, and that no matter what happens, he’s going to walk you out for my benefit. It’s simply said that he’s, you know, and let us know, for those of us in the faith, and there are absolutely times I know, understand what’s going on. And if I try to understand what’s going on, I’m gonna drive myself crazy. And I’m gonna put myself under stress and ensconced into even the heart. And the letting go of control. That’s learning loves process has been amazing. For my resilience, because I’m designing go, I’m no longer personally connected to a specific outcome of something. Instead, I’m committed to the process. And I’m committed to my response of a situation. And I can’t control so many things, none of us can, but I can enter them into my honors spots, right? Something
Michael Hingson 59:16
you know, in the interesting thing about religion. We all have the same God, whether it’s Christian, whether it’s Jewish, whether it’s Muslim, and the Bible tells us that we all have the same God and the teachings, the basic tenants of teachings are the same, and it would just be so much better if people would learn more about God and really reflect on the fact that we’re all part of the same world.
Kyle Campbell 59:46
I think, I think there is a tendency to want to point out things that we am I lacking in each other? I think there is a feeling of wanting to be superior. And to say, my beliefs are better than yours. Or mine, my belief is true and yours is not all my experience is more valid than yours. And I obviously do believe there is an absolute truth right there. Um, but it’s it’s and they weren’t my end is not our place to judge and saying whose perspective is better? It’s like, you know, like, like the, you know, there’s a story of the monks, the blind monks feeling something, there is five of them in the soil, and they feel these different things in or something? And one says, oh, no, it’s very thin. Anyone says no, it’s very strong and dense. And I says, No, it’s very long and kind of waves around. And they’re all describing different parts of the elephant, right? Yeah, that’s, that’s the same event. And they all have a different perspective of it. So for one of them, say, your neuron you’re on for thinking it’s like this when it’s like this? And I’m right.
Michael Hingson 1:01:49
Kyle Campbell 1:01:51
I think that’s an this step on our part. And, you
Michael Hingson 1:01:58
know, the, the interesting thing is that so many people judge, and so many people once again, decide that they know best, it goes back to what you said near the beginning of our time, which is that, in reality, you, you can’t make the determination for other people. And you know, what, even if one religion is absolutely correct, and all the other religions are incorrect, it seems to me that if we follow the preachings of Christianity, it goes back to what you just said about judging. It is not our place to judge. And that’s between God and every individual and Far be it from me to decide what God’s choice is going to be.
Kyle Campbell 1:02:50
Absolutely, Michael, even though I think I know better, probably for me to say what is right. For me to judge the situation,
Michael Hingson 1:03:05
if you compare most of the major religions, the basic teachings, and the basic goals are really the same. And so again, Far be it from us to say, who’s right and who’s wrong, or what’s right and what’s not. And that includes people saying, Well, Jesus wasn’t the Son of God. If you follow the teachings of Jesus, we’re all children of God. And Jesus makes that very clear. But the issue still is, you know, we all have to stop judging, and it goes back to disabilities the same way. So, so, you know, it is a challenge. And, you know, I really applaud the adventure that you’re on. And I have to ask, we’re going to have to end at some point here, but tell me about the book that you’re writing.
Kyle Campbell 1:03:54
Yeah, sure. I could chat with you on Michael.
Michael Hingson 1:04:00
We could do that. Yeah.
Kyle Campbell 1:04:02
Well, I don’t know if the US would appreciate that. So yeah, I have a book coming out. It’s called beyond belief. How a brain stem tumor, Dr. faith and purpose, his life. And in my book beyond belief, um, I I talked about all these things that we’ve talked about today, my, my, my journey, as a kid and growing up and having medical issues. I talked a little bit about disability and my journey to doing counseling, still philosophy, and kind of weave it in with the Bible and seeing myself in the Bible and it was the philosopher and theologian. So uncloak is gorgeous, and you need to see yourself in the Bible. And after the Bible we talking to you, and about you. And so I began my journey of what that was for me. But it’s in bunk, and I end with practical strategies for someone. So living beyond belief, or maybe, as you might say, unstoppable, living things like calling out the value, and the others, things like being patient, for the sake of others, things like being kind to each other. And it’s so easy to skip these things, as after thoughts of what we should be doing, when in reality, they’re essential to what we should be doing every day. And it’s been a fun process to write the book. And I’m excited to share my message. I beyond beneath our brainstem tumor, broad and purpose to life is going to be available on Amazon in both paperback and Kindle edition.
Michael Hingson 1:06:29
When will it be coming out?
Kyle Campbell 1:06:31
The official launch date is Thursday, November is direct, which is this Thursday, the Kindle edition will be 99 cents that day. So if you wanted to donate $1, and help me become a best selling author and help and learn about living with the brainstem tumor, you can do that. I didn’t realize for a long time, how unique it is to live with a brain stem tumor. We have our brain tumors every now and then. We don’t hear much about brain stem tumors. And when I realized recently, how special that is, it was kind of like, I had a conviction that, wow, I need to share this story. So I’m happy to have the opportunity to do that.
Michael Hingson 1:07:37
Are you self publishing it? Or do you have a publisher?
Kyle Campbell 1:07:40
I’m self I’m I have a hybrid publisher. So I’m self publishing. But I have an independent press who has helped me along the way. Yeah, they’re called press. They’re based out of Fresno here.
Michael Hingson 1:07:59
Well, I hope that you’ll also figure out a way to make it an audio book or get audible to produce it and put it up on its site and make it available in as many different forms as you can.
Kyle Campbell 1:08:11
Of course, thank you. Yeah, in fact, just today, I was talking with my engineer, my my publisher about doing audiobooks. And trying to get not started. So I would love to have that. People have asked for it. And and yeah, hopefully it’s coming down the pike.
Michael Hingson 1:08:34
Cool. Well, Kyle, I want to thank you for being here with us today. It’s been a real joy and a real pleasure. And I think I’ve learned a lot. And it’s been a wonderful conversation. How can people reach out to you if they want to contact you or learn more about you and so on?
Kyle Campbell 1:08:53
Yeah, thank you, Michael. You can find me online. My website is www dot Kyle K Y L E www.Kylebeyondbelief.com My email is on there Kyle dot email@example.com. But if he had to my website, you will be able to fill out a form and contact me on there. One more time. www.Kylebeyondbelief.com.
Michael Hingson 1:09:30
Well, Kyle, thank you very much again for being with us. And I want to thank you for listening out there today. We really appreciate it hope that you found this informative and enjoyable and inspirational. If you have a chance please give us a five star rating wherever you’re listening to our podcast. And I would love to know what you think so please feel free to email me at Michaelhi at acessibe A C C E S S I B E dot com, or go to our podcast page www dot Michael hingson H i n g s o n.com/podcast. So we really do value your thoughts, your comments, and Kyle, for you and for all of you listening out there if you know of anyone else who you think we ought to have as a guest on the podcast, unstoppable mindset, please let us know we’d love to hear from you. And we’d love to, to find ways to to accommodate any guests that you bring our way. So once more Kyle, thanks very much. It’s been wonderful to have you here today.
Kyle Campbell 1:10:35
Thank you, Michael. It’s been great. I appreciate that
Michael Hingson 1:10:43
You have been listening to the Unstoppable Mindset podcast. Thanks for dropping by. I hope that you’ll join us again next week, and in future weeks for upcoming episodes. To subscribe to our podcast and to learn about upcoming episodes, please visit www dot Michael hingson.com slash podcast. Michael Hingson is spelled m i c h a e l h i n g s o n. While you’re on the site., please use the form there to recommend people who we ought to interview in upcoming editions of the show. And also, we ask you and urge you to invite your friends to join us in the future. If you know of any one or any organization needing a speaker for an event, please email me at speaker at Michael hingson.com. I appreciate it very much. To learn more about the concept of blinded by fear, please visit www dot Michael hingson.com forward slash blinded by fear and while you’re there, feel free to pick up a copy of my free eBook entitled blinded by fear. The unstoppable mindset podcast is provided by access cast an initiative of accessiBe and is sponsored by accessiBe. Please visit www.accessibe.com. accessiBe is spelled a c c e s s i b e. There you can learn all about how you can make your website inclusive for all persons with disabilities and how you can help make the internet fully inclusive by 2025. Thanks again for listening. Please come back and visit us again next week.