What is Cerebral Palsy? (How I Live With It)

What is cerebral palsy? What is it? What does it do? What's it caused by?

Yeah, absolutely. It's primarily caused in the birth canal right before birth or right after birth. And so for me specifically, the umbilical cord ended up being wrapped around my neck when I just turned. According to all the tests up to then, I was a normal, quote unquote healthy baby. And then the umbilical cord got wrapped around my neck and the birth canal, which then acts as like a noose. And so it's critical time to get the baby out of that, you know, channel canal. And it's like the longer it does, random parts of your brain die. And so the. That's why there's a wide variety of levels that you see of people that have CP from unfortunately, in a wheelchair, not even able to communicate verbally, even maybe with their hands or anything else, all the way to someone that people look at me and they're like, wow, you really have cp. And so it's a more of a different version. And for me specifically, it's like, you work, haven't worked out in six months. You went to the gym, you hit it hard with squats and lower back, and then the next morning you wake up and you're just like, whoa. That gym is stiff. So my muscles stay tighter than most so that I only have like, instead of a 21 speed bike, I'm maybe like a four or five speed bike. And so the ability for muscles to completely flex and contract and expand is limited with me in my legs and lower back. So it's hard to get nutrients. It's hard, it's easier for my muscles to tear. And that's why it's called spastic diplegia cp, where my muscles, they just start spasming to try to get you to stop. And they get overworked or overwhelmed very easily. So my leg shake. In school I used to get teased because my legs would just vibrate on the floor, because my heels really couldn't touch all the time because my legs would lock up. And so that's kind of how it affects me is every morning I just have to do stretches and motions early on before I really do anything else because I stiffen up every night. Like I just went to the gym for the first time for six months after six months.

So prime conditions for triathlons and climbing mountains. What you're saying.

Exactly.

Really optimal? Yeah, super. Super optimal, yeah, yes, absolutely.

So I don't really have like an equilibrium. Balance is really bad. So, like people that see Me, I walk a little bit like a penguin, which is fine. We kind of just joke. I do my little waddle, my. My. My walk, my strut, and that's kind of where it's most noticeable. And then my legs just tire pretty quickly.

Got it. Okay. Yeah. I mean, I just wanted to set that piece up because I wanted to go back, you know, because one of the things. Reading your book, I was listening to it called One More Step, My Story of living with cerebral palsy climbing Mount Kilimanjaro and surviving the hardest race on Earth when I was going through this. And, you know, I've, you know, we've spent a lot of time together, and I know a lot about your story, but it was just interesting to hear the full depth of it, you know. So can you just say a little bit about what it was like to grow up with CP when you found out how the family sort of interacted with that? Because I think there's something really poignant for a lot of individuals that's baked into your story that I've heard so often. And it might not be with cp, but it's, you know, something else. And so just say a little bit about what it was like, what happened? How did it come about? How did your family find out?

Yeah. So after that, the doctor, My understanding after I was born and everything, they have to wait till you start to either crawl or try to use your hands or your feet. So it's almost like a waiting time to see what has been affected. Based on the time that I was in the birth canal with the umbilical cord wrapped around my neck. So it's kind of a wait and see approach. And so you don't really, coming from a family where I grew up in, family wasn't very communicative. We didn't really talk about emotions. We were just sweeping under the rug and hope things would go away. All types of things in our house, conflict. Just. There wasn't a lot of that open communication other than just surface level stuff. And that's not relatable.

I'm sure that's not relatable to anybody whatsoever.

Yeah.

I grew up with a. In a family where dad wasn't very communicative, would work, be gone a lot at work, provide for the family. And a mother that was, you know, had to raise three boys and it was a lot on her shoulders and she was to keep that in line. I felt like, you know, try to exert control, use a lot of potentially, I would say, criticism and ways to kind of Try to keep us in line, keep us, you know, where it was comfortable and safe for her, which also meant she, as a kid growing up, needed to be perfect. And so she brought that into our family. So anything that's outside of perfection, per se, or the perfect idea of her, what a family should look like, we definitely didn't talk about it, which would mean my big feet and really skinny legs and tripping all the time and getting teased at school, you know, and most of the time, just tired. And so it was hard for myself to really feel like that part was acknowledged and just felt like it was totally ignored. And so therefore, we just didn't even talk about why Bonner walked differently. And she didn't know either, because I was functioning to a higher level of what their understanding of what CP and other similar disabilities and everything was. So I was misdiagnosed Till I was 11 years old. And it wasn't until my brother had an accident when he was at college, training at college for. He rode crew, and so he ruptured, you know, something in his brain. And so they did a scan, and the only reason they asked was, is there anybody else in the family that has some type of neuromuscular challenges? And mom said, yeah, Bonner has something, and this is what we think it is. And so as soon as they dug into it as a doc with the doctor, it just happened. That same doctor that's the neuro was a specialist in cp, and he's like, there's no way he could be diagnosed with syringomyelia, which is what they diagnosed. And he asked for cat scans and MRIs, which I had never had. Boom. 11 years old, he's like, nope. Bonner has spastic diplegia, CP. And I want to, you know, work with him, if you guys are open to it, because he has some amazing abilities that we really haven't seen from other people that have cp. So they studied my brain for the rest of my childhood because they wanted to see how it rewired around the dead parts of my brain.

Interesting. Very, very interesting.

Yeah.

Well, and I think. So the part that, you know, in your story that I think is really relatable to a lot of people is just that notion of, like, something's going on. Family's not talking about it. That's one part, right? Something's going on for somebody in the family. Whether it's, you know, the person listening to this or somebody in their family, Something's going on for somebody in the family. Nobody's really talking about it's. Not really being addressed. And then I think the second part is being the individual that is going through that and not really knowing what the hell is going on, you know. And so tell me what that, you know, I know this sort of a while back and you were a kid, but can you just say what that was like for you as a boy, where clearly there's something different from you than the other kids, but there's not really an explanation for it. What was that like?

Yeah, as a kid, recalling back to that, it felt like something was wrong with me and it was so bad that we're not going to talk about it. That was the story that came to my head and I built that up from there was, there is something wrong with me. It's so bad that we're just going to ignore it. And that's the only thing I could really rationalize of how I kind of took the path I did. And also the way that they did in talking with them now, later, they just, you know, they said they didn't want it to get into my mind that there was something per se wrong or different with me. Well, I took it as a kid and since I didn't feel comfortable or safe to come to them and ask questions, I just swallowed it, ate it, and just literally tried to figure out ways to get love and attention and things that I needed and wanted as a child through very hard, alternative ways that were very unhealthy.

So once you, once you did find out, once your family did find out, what, what changed once we did find out?

11. I recall going to physical therapy almost every day after school and luckily it was a cute physical therapist named Katie. That's all I remember was Katie. And so that was more my inspiration was like, I get to go see this, you know, cute person that stretches me every day and teaches me these exercises and everything. But for me, it was, it was. The irony was amazing as I think I was trying to still get my mother's love through even Katie. Like if I just perform and show her how good I'm doing with my exercises, it actually ended up working in a great way because I did go do my exercises at home and I did do all the follow ups because it was what I was starting to learn at home. In order to get the acknowledgment and love was, I had to perform.