Overcoming Paralysis • Dr. Dale Hull, Executive Director of Neuroworx • s02e04

Overcoming Paralysis • Dr. Dale Hull, Executive Director of Neuroworx • s02e04

Over 5 million people in the US live with paralysis, caused by injury, stroke, or disease. A pioneering therapy clinic called Neuroworx is leading the way into life-changing treatment for people with paralysis. Learn from Dr. Dale Hull, its co-founder.

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Over 5 million people in the US live with paralysis, caused by injury, stroke, or disease. Recovery is incredibly hard because nerve damage is difficult and sometimes impossible to heal. Moreover, our medical and insurance systems are inadequate, designed to help people live with their injuries rather than heal from them.

A pioneering therapy clinic called Neuroworx is leading the way into life-changing treatment for people with paralysis. In this episode, we'll learn from Dr. Dale Hull, an OBGYN doctor who became suddenly paralyzed more than 20 years ago. Now, not only can he walk again, but he and his co-founder Jan Black have aided thousands of patients to live happier and more active lives.

About Our Guest

Dale is the cofounder and Executive Director of Neuroworx. He graduated from the University of Utah School of Medicine in 1985. Following graduation, he completed a residency in obstetrics and gynecology at the University of Utah Medical Center. He practiced general obstetrics and gynecology for ten years in the south portion of the Salt Lake metropolitan area.

In 1999, he suffered a spinal-cord injury that resulted in paralysis from the neck down. This life-altering event, which prevented him from returning to active practice, required Dr. Hull to devote approximately three years to his rehabilitation. He joined his therapist in forming a non-profit organization and opening Neuroworx in 2004.

During 2002, Dale had the opportunity to be an Olympic torchbearer for the Salt Lake Winter Olympics. In 2009, he completed an underwater marathon in the Neuroworx pool to commemorate the ten-year mark of his injury. He returned to school and in 2012, completed a Master’s of Public Administration degree from the Romney Institute of BYU. Dr. Hull is married and has four sons.

Useful Links

Neuroworx: https://www.neuroworx.org/

News coverage of Dr. Hull's work: https://www.youtube.com/watch?v=2NIGMtMJbiE

Dr. Hull's Tedx Talk: https://www.youtube.com/watch?v=FgfT0OyASrU

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[00:00:00] Aaron: That's an awesome story. I would not have expected the Twinkie to MD path. Love it.

That's so great.

[00:00:08] Dr. Hull: Yeah. My, my grandkids love to hear that story.

[00:00:10] Aaron: Yeah. They might prefer you we're making Twinkies still .

[00:00:14] Dr. Hull: Oh, totally. When I tell, when I tell the story, they're not impressed I'm a doctor. They're like, "You made Twinkies? Like, you're a, like, you're a cool grandpa."

[00:00:22] Aaron: That's hilarious. I love that.

[00:00:27] Aaron - Narration: Hi, I'm Aaron Miller, and this is How To Help, a podcast about having a life and career with meaning, integrity, and impact. This is season two, episode four: Overcoming Paralysis. This episode of How To Help is sponsored by Merit Leadership, home of The Business Ethics Field Guide.

Before we begin this episode, I have just a quick word of thanks to all of you who listen. I'm lucky enough to have an audience full of natural helpers, and you're all so kind. Thank you for your encouraging words about the podcast and also for taking the time to share it, and to leave reviews. If you want to help this podcast grow and reach more listeners, sharing on social media and leaving reviews with Apple Podcasts are the two most effective ways to help. So thank you.

I have a slight tremor in my right hand, although I can't pin down exactly what caused it. I'm pretty sure it came from a day when I was tearing out some old kitchen cabinets and I strained something related to what's called my brachial nerve. I've had some physical therapy for it, and that's helped. But even now, 11 years later, if I overuse my right arm, I can feel it get weaker and the tremor gets more prominent.

The human nervous system is an amazing thing. I definitely take it for granted, even when considering my tremor. Our brain and spinal cord do so much more than just getting our body parts to move. They help us sense hot and cold, regulate our breathing, feel pain and pressure, and even know simple things like where our hands are in any moment and what they're doing without us having to look.

The nervous system is also incredibly fragile and hard to repair. When nerves are injured, some damage can be permanent, despite our body's natural ability to heal. And a nervous system injury can be sudden and dramatic, from something as simple as taking a hard fall. A spinal cord injury is usually life changing.

This episode is about those among us who have had dramatic changes to their bodies and their lives because of nerve damage caused by accident, stroke, or disease. More than that, though, it's about the remarkable journey they undertake to heal and adapt.

[00:02:52] Dr. Hull: The work that we've been doing over the last 18 years, we've kind of landed on a phrase that we call the remarkable journey. That every one of these individuals who have these catastrophic injuries embark on this remarkable journey of recovery that is so unique, and so daunting, and circuitous in certain ways, and so individual that, that it really is, it's just remarkable.

[00:03:25] Aaron - Narration: Also in this episode, we're going to learn about a pioneering clinic called Neuroworx, where patients are getting care that would otherwise be impossible for them. We'll learn about the clinicians who are daily crafting better lives.

[00:03:39] Dr. Hull: Currently we have a staff of of 26. We do physical therapy, occupational therapy, and speech therapy for adults and children with spinal cord injury, brain injury, stroke, cerebral palsy, spinal bifida, and similar conditions.

The analogy that I try and paint for visitors to our clinic is, if I brought you into a woodworking shop, I would show you the tablesaw, the drill press, the sander, et cetera, and you would say, "Oh yeah, those are the tools." But then I would introduce you to the craftsman who takes the block of wood to create the masterpiece using the tools that are in the workshop.

Our therapists are the artisans and they have the insight and the skill and the creativity. And they, they take these individuals who are the raw materials, so to speak, and they're going to craft them, using the tools in the best manner possible.

[00:04:37] Aaron - Narration: Our guide for this episode and my guest and friend is Dr. Dale Hull. He's the co-founder of Neuroworx and a trained medical doctor. Together with Jan Black, who's the clinical director and a physical therapist, the two have helped thousands of people regain power and hope and strength, after those things are taken away.

I need to tell you this at the outset, though, Dr.. Hull's expertise in healing broken bodies comes from something much deeper than just his medical training. He actually started out as an OBGYN, not a neurologist. But over 20 years ago, his life was suddenly and completely changed by a traumatic spinal cord injury.

[00:05:25] Dr. Hull: Generally speaking, things were going very well. I mean, after 10 years I felt like I was good at what I did, and I had a very supportive wife, a nice house, had four sons who were growing up and they were healthy. And other than being very, very busy, yeah, life, life was good.

[00:05:46] Aaron: So can we talk about the accident? I know this is a story you've told many times over, but the people listening won't have heard it before.

[00:05:54] Dr. Hull: So on July 19th, beautiful summer evening, 1999, I had come home from work a little bit later and the family had already eaten and kind of were doing their thing. And I grabbed a quick bite to eat and went out into the backyard on the trampoline just to relax a little bit. And I had grown up with trampolines in my town where we'd grown up.

And on this particular evening, I was doing some front flips and back flips, but it wasn't anything I wasn't accustomed to doing. And on a particular back flip, as I hit the takeoff, the plan was to do a laid out back flip. So, you know, that involves, as you, as you get in the air, you're kind of stalled out and then you arch and then bring it around.

And at the peak of my jump, I realized I didn't have enough rotational momentum to complete the flip, and I was going to be in a very precarious situation. So I thought to myself, "Okay, I better reach back and see if I can catch myself with my hands."

And I'm still blown away by how quickly our brains can work at times because no sooner than I had that thought than Christopher Reeve's horseback riding accident went through my brain.

[00:07:05] Aaron: Oh wow.

[00:07:05] Dr. Hull: For those who may not be familiar, he was on a jumping horse and the horse stopped short. He went over the front, and his head hit the ground and sustained a spinal cord injury at the very highest level.

And I figured if I wasn't successful, I may have a similar accident, only in reverse, similar injury. So I, I did the only thing I had left to think about and I tried to twist, I tried to throw one of my legs over, but ran out of hang time, landed on the mat in such a way that my chin was on my chest with my body straight up in the air. Heard and felt a pop and everything went completely numb, just like throwing a switch. I bounced on the trampoline and came to rest on my stomach because of the, of when I tried to throw my leg over. And immediately upon ending up that way, I knew exactly what had happened. I knew I had a spinal cord injury.

I knew I was a quadriplegic. I knew life was over. In, in every way I could think of. My head came to rest in the opening where the springs were missing on my trampoline, which was my first great blessing because it kept everything in perfect alignment so it wouldn't have caused any more damage. But I was looking underneath the trampoline, and I can still see the dirt and smell the weeds and, and the first words out of my mouth were, "Oh God, no. Not this."

And the reason that I said that was I thought it was really unfair, that I was getting dealt something I wasn't, I wasn't at all prepared for.

So I think one of the first things I learned about this, and I've learned so many things as I've gone through this whole episode of this whole journey, is we're all going to have problems. That's, that's not the secret. I think the most difficult problems we're going to have are things that are not on the list.

[00:09:02] Aaron: Hmm.

[00:09:02] Dr. Hull: Things that you're totally unprepared for, that show up on a normal Thursday afternoon and, and you suddenly have to come to grips with it. And so I just thought it was unfair that it was giving me something that I, I mean, I didn't know where to start. I had no idea.

[00:09:20] Aaron: Yeah.

[00:09:20] Dr. Hull: Like really, really? You're going to make me a quadriplegic, like serious. Come on.

[00:09:27] Aaron - Narration: I know that story is a lot to take in right here at the start of the episode. It's hard to really understand anything like that happening to us or to someone we love. But did you notice how Dr. Hull, and because we're friends I'm also going to call him Dale, did you notice how already Dale has some potent wisdom to share?

I've long been excited about this episode because of who Dale is and what we can learn from him. To get to know him better, here's how we ended up in medicine. If you're still trying to figure out what you want to do for your career, you'll find this story to be very relatable.

[00:10:07] Dr. Hull: I was in college and I had been a predental major ever since I was junior high. I, I thought I'm going to be a dentist. I had a brother who was an orthodontist and a brother-in-law who's a dentist. And so I thought, "Oh, you know, that'll be great. I can do that." And kinda went through my schooling.

And now I'm a, a junior in college and I was supposed to go spend a half a day with a, with a dentist. So I dutifully showed up at his office and I sat in the chair next to him and he was doing a crown prep, uh, on this particular person. And I was watching. No more than 15 minutes into this whole thing. I said, "There is no way that I'm going to spend the rest of my life doing this." And I stood up and said, "Thank you very much. See ya."

And he kind of looked at me and said, "Okay..."

[00:11:01] Aaron: Oh, that's so funny.

[00:11:02] Dr. Hull: And, and I'm assuming that he maybe thought I was getting queasy or whatever. But I, but I walked out of the room and never looked back. But then the problem was I didn't quite know what I was going to do at that point.

My home, where I grew up was underneath the landing pattern for the airport, and so I'd always wanted to fly. Eventually, I, I went out and got a pilot's license and said, "Oh, this is what I'm going to do. I'm going to be a pilot." And at the time, I was working at Hostess, at the Hostess Bakery making Twinkies for a living. My wife was still in college and I'd come home and say, "Guess what I did for the world today? I made a hundred thousand Twinkies."

I worked with a lot of really good people. They were hard workers. I mean, it's, it's much harder work than you think. But I also realized that they were just working for a paycheck, and that was the second point in my life where I said I, I can't just work for a paycheck.

Well, I had actually, by this time, I had actually applied to law school and I got accepted as an alternate. Thank goodness I never got in, because I, I don't, I don't think I'd be happy as an attorney.

But in the course of all this, my wife and I witnessed a car accident right in front of us and we were kind of the first responders. And I felt so helpless at this scene that I turned around and enrolled in an emergency medical technician course from the state and got my EMT certification and said, "Okay, I really think medicine is what I want to do." But by then I was out of school and really didn't have a pathway forward.

I'll tell you an interesting story about this whole thing is I was sitting at my desk one day, my wife was at work, and I was a little bit down in the dumbs, contemplating, "Okay, what? What's my life going to be like? What am I going to do?" And I was just doodling on a piece of paper. And as I doodled, I was signing my name, just practicing signing my name. And at one point I signed my name. And then after my name, I wrote the two initials, "MD."

And I sat and looked at that. And quite honestly, Aaron, I said to myself, "There is no freaking way that that's ever going to happen." Because it just seemed like I, there wasn't, there was not a path forward right?

Long story short is a friend of mine who was a professor called me a short time later and said, "Hey, what are you doing in life?"

And I said, "Making Twinkies."

And he said, "I need a graduate assistant in physiology. Do you want to come down?"

And I said, "Sure."

And so I went down and started a graduate program. And that opened the door for me to apply to medical school. And then, then I, I was accepted to the University of Utah Medical School, and off, off, I went.

And, and to bring the, the stories all the way full circle, there were days when I was a practicing physician, really busy writing orders, and I would get down to the bottom of the order sheet and I would sign my name,

There were a couple of those days that I actually paused when I made those two initials at the end of my name, because it was that realization that it had, it had actually happened.

[00:14:38] Aaron - Narration: That sense of gratitude and accomplishment is something I hope everyone can find. There are few things more satisfying than having work that uses your gifts to help other people. This is what Dale had to leave behind because of his injury.

In fact, if you've listened to my first episode in season one, I spoke with Professor Jeff Thompson about how people find their calling. Dr. Hull's story was one that Jeff shared as an example. But Jeff didn't talk about delivering babies. He spoke about what was to come next for Dale.

[00:15:15] Dr. Hull: The day I was injured was the day I delivered my last baby. Uh, well, last baby as a non-injured person. I actually ended up delivering two other babies, but those are whole other different stories. That was after I was injured. But the last baby I delivered was a couple whose physician got ill. And she was ready to deliver at any time and came in to see me that day and, and, uh, just happened that she was, you know, in a situation where she was ready to go.

And so took her over to Labor and delivery and we got her delivered. And I've remained with, with that family. In fact, they live in Minnesota and last year actually stopped by and I got to, to revisit with husband and wife as well as the child.

[00:16:00] Aaron - Narration: Most people who experience a traumatic injury like Dr. Hull, don't fully understand the significance until much later.

With years of medical training and practice under his belt, Dale immediately knew what had happened on that evening when he was hurt. By the way, you may hear some background noise in this clip. Those are clinicians and kids at the clinic, some of whom are patients.

[00:16:26] Aaron: So it, this has never occurred to me having heard your story before, but it did just now. Your reaction to this would've been much more informed in the moment. A typical person who has no medical training, when they found themselves in that situation, there'd be so much uncertainty swirling around not knowing what was really going on. But it sounds like you had a full appreciation of what this meant, where most people wouldn't.

[00:16:50] Dr. Hull: Yeah, unfortunately I did. I did.

In fact, in one of the funny prescient moments while I was laying there, I actually knew for whatever reason that I would be the show and tell spinal cord injury for Dr. James Swenson's, second year medical student lecture of the following year, which I was.

[00:17:12] Aaron: Wow.

[00:17:13] Dr. Hull: Because I remembered as when I was a second year student watching a paralyzed gymnast come in as the show and tell for spinal cord injury. And it was just, it was just an odd thought that crossed to my head at that moment of, "Oh, great, now I'm going to be, I'm going to be Dr. Swenson's show and tell."

[00:17:33] Aaron: Wow.

[00:17:34] Dr. Hull: And, and so, yeah, I, I knew exactly what had happened and I, I had my wife call my colleagues at the hospital and say, Okay, you know, this is what's happened. And I knew how bad the accident was. I mean, I had no motor, no sensory below the level of the top of my shoulders. I mean, it was, it was, it was bad. Yeah. You know, and, and my wife, she, she said, "I realized when it was bad when I walked in the emergency room and your partner walked out of the X-ray room crying," after he saw my x-ray.

And I have to hand it to my wife because she was thrown into this very complicated medical situation and, and there were times when she had to make decisions for me, you know, once I was sedated and I was in the ICU, and, and that was really tough. That was really tough on her. I mean, she, she had no understanding and yet she was trying to absorb what she was being told.

And it gives me a greater appreciation because we see that all the time. What I describe it as is families are washed over by a tsunami of medical information that is so overwhelming that it, it makes the injury that much more complicated. Yeah, because they don't know what they don't know yet. They're expected to be making these decisions and trying to understand what's happening.

It would be like taking me and, and dropping me in the middle of China and having people telling me Chinese and asking me to make big decisions. It, it's just so overwhelming and, and imposing that it's, it's very, very difficult.

[00:19:17] Aaron - Narration: The time quickly came that Dale was discharged from the hospital and he and his family had to fully face what it meant to live with this injury potentially forever. The experience of coming home to a completely different life than you imagine for yourself is overwhelming.

[00:19:33] Dr. Hull: Sometimes days seem like they last forever and sometimes things just fly by just because of the nature of the situation. There was a lot of pressure on me, a lot of pressure on my wife, my family, and you, you go through the stages of grieving. And in my particular case, obviously it's very difficult because I blame myself. You, you know, I replayed my accident over and over and over again and, and I felt like that I had quote unquote, done this to my wife and my family, right?

And there's a lot of guilt that goes with that and, and I, I mean, I'm very honest about it. Did I think about suicide? Yes, absolutely. Now with retrospect and after having seen so many people go through this, I honestly, I'm not afraid when people go there or talk about it, because I actually think it's part of that recovery process. You explore all those things and there are dark days, and then as progress is made you, you have those days where you're just absolutely gleeful and grateful for little things. You know, the slightest movement, the slightest sensation. Those things become tremendous motivators to keep going.

[00:20:52] Aaron - Narration: Dale's amazing recovery is thanks to Jan Black, his physical therapist. She helped to make progress that others had predicted to be impossible, but working with her required extra time and resources that typical insurance benefits don't cover. Right now, our system is primarily designed to help dramatically injured people live with their injuries instead of healing from them.

[00:21:17] Dr. Hull: So at seven months after my accident, I met an extraordinary physical therapist that I think that's the first thing. I had, I had become very frustrated with therapy as an outpatient. I was getting it at home. Yet insurance restrictions are so, um, significant that the therapist only have time to really get you ready to live with your disability. And I, by that time, I'd had a lot of neurological recovery. I wanted them to change me. I didn't want them to change more door handles, which is really all they had time to do.

So that was a, a marked frustration for me. And then I realized that there was a limitation on the number of visits, et cetera, et cetera. So seven months I met this extraordinary physical therapist, Jam Black, who I finally realized had the talent, the ability, the wherewithal to make a difference. And so that motivated me to figure out a way to get my insurance company to pay more for me to pay her directly to, to get more therapy. And that culminated with me working with Jan for about two years, two and a half years, almost on a a five day a week basis, several hours a day trying to maximize my recovery.

[00:22:32] Aaron - Narration: Dale's recovery was remarkable. Less than three years after the accident that made him a quadriplegic, he could walk again. In fact, Dale without assistance, carried the Olympic torch during the 2002 Winter Games in Salt Lake City. That's a story we're going to hear later in the episode. After having made so much progress, Dale and Jan realized that what he had was something that many, many other people needed.

[00:23:01] Dr. Hull: At that point, I was still partially paralyzed and couldn't go back to work. So then I had to figure out, okay, so now what do I do? I, I mean, I'd had all this recovery, I'd had all this blessings, but I can't, I can't be at OBGYN again. Well, along the way, you can imagine, I had met other individuals with spinal cord injuries and paralysis, and they started to say, "Well, why can't I have what you have?"

And they wanted what I had, they deserved what I had. They needed what I, what I was getting, and I couldn't say, "Well, come on over to the house." That was pretty awkward. So Jan and I started to talk about, is there something we can do? There seems to be a need in the community.

We eventually put our thoughts on paper. We, we actually wrote a business plan. We said, if we're going to do this, we've got to eliminate financial barriers. So we created the nonprofit. Which makes me laugh now because I, I know your work is in nonprofits and, and we, we always joke that we have a physical therapist and a partially paralyzed gynecologist trying to run a nonprofit organization. It's just like, holy smoke. It's confidence is what you have before you know what you're doing.

[00:24:15] Aaron: Yeah.

[00:24:16] Dr. Hull: And, and so we said, "Okay, we're going to try and we're going to try and make a difference. We're going to try and create a different paradigm that people can get what they need. Not what can be billed for." And so that was the basis of wanting to do something different and trying to meet the needs of these other individuals.

So in 2004, we, we rented a thousand square foot room that was mostly empty and there were about a dozen individuals who followed Jan over, and Jan was our only therapist and I was a volunteer administrator and, and we said, "We're a spinal cord injury recovery center." And we, we said, "Go."

And, uh, quite honestly it was a dumb idea. I mean, really because of, I mean it was a terrible business model. But what we've realized, it's this great people model and, and it, you know, it's been working for 18 years

[00:25:09] Aaron: Yeah.

[00:25:10] Dr. Hull: Through the enormous generosity of, you know, many, many people who have, who've believed in our work.

[00:25:17] Aaron - Narration: This glosses over many years of hard work, full of setbacks and surprises, but today, Neuroworx is a massive clinic fitted with state of the art rehabilitation tools and equipment. They have aquatic therapy pools, driving simulators, VR headsets, weights and braces of all kinds, a dedicated children's play and therapy park, and even a robotic ambulation device that retrains a person's legs to remember the complex movements that make walking possible.

All of these resources have improved the lives of thousands of people.

[00:25:52] Dr. Hull: I'd say we're probably getting close to 4,000 different individuals from 28 different states and four different countries. Most of them obviously are from the Intermountain West, but you know, we had a young girl from Morocco, we had a young man from South Africa. We've had people from Canada, from Mexico, and then other, other states who come out. We have an apartment that we, we let them stay in for very low cost.

And yeah, so it's, it's been an amazing, amazing journey and especially to see where we are now compared to where we started.

[00:26:26] Aaron - Narration: The facilities with equipment like this aren't all that someone needs after a traumatic brain or spinal cord injury. The psychological pain of this experience needs treatment too. Thanks to generous donors, Neuroworx also offers that kind of therapy as well.

[00:26:43] Dr. Hull: We've really focused on our idea of giving people what they need and then we've added some programs that we think are are additive and very important adjunctively for people.

For example, we wrote a grant a year ago and got a clinical psychology program funded. So we now have three different clinical psychologists who see our patients. Patients don't have to go to a different place. They can actually do it right here on site. They can do it through telehealth, they can do it in person. There's, there's group sessions.

And we've visualized how important that psychological piece is because, quite honestly, the physical paralysis is the easy part. Because these individuals are paralyzed mentally, emotionally, psychologically, spiritually, financially, in all other ways, and nobody really kind of helps you through that, especially after you go home from the hospital.

I mean, everything really happens on the outpatient side now because length of hospital stays are so, are so short. So our focus is really on not only the physical aspect of paralysis, but how do we help people transition back to a high quality of life? How do we help them solve their problems vocationally, psychologically, spiritually, in, in all other ways?

So we've, we've tried to connect with great community partners, of which there's some amazing groups in Utah for adaptive sports, adaptive recreation. We have great vocational rehab. All of those things become an important part of, of that remarkable journey of finding a, finding a place where you feel like you can kind of still be a, a very productive person, not only for your family, but in society.

[00:28:29] Aaron - Narration: I know I've been making Neuroworx sound like a miraculous place, and in many ways it is. But it's important to recognize that patients who go in there don't usually leave being completely healed. Even Dale still carries many of the symptoms of his original injury, and the progress that the patients make is often slow and comes only through exhausting effort.

[00:28:52] Dr. Hull: There have been occasions where we've been accused of creating false hope because if you ask anybody who walks in our doors, "What's your goal?" Almost a hundred percent of people say to walk, which makes sense because we're bipedal hominids. I mean that's how we're defined right in, in the world as we walk, right?

And, and that is kind of the holy grail of paralysis. And, but we know, we know that there's a lesion based limit and we are not going to... there are some people who do walk, but we also know that not everybody's going to walk physically. But if we make their spirits walk, we've done a tremendous thing to help them launch toward being productive and, and in many cases, happy people.

[00:29:43] Aaron: I think this is a very hard condition for people to relate to if they haven't experienced it firsthand, either on their own or through a loved one. And so what are some of the mistakes that people tend to make when they interact with people who, who live with paralysis?

[00:29:59] Dr. Hull: Yeah, that's a, that's a really great question. And in fact, it's very appropriate at this point in time because one of the things that you may hear, or if you haven't heard about it already, is there's a bit of a social movement called ableism. Ableism is this concept that, you know, the the world really was created for able people.

For example, stairs. I mean, stairs are there because people can walk up the stairs, right?

[00:30:26] Aaron: Right.

But if you're in a chair, you should still have the same opportunity to go to the second floor. Yet the world wasn't created by that.

Now, let me tell you to do it this way because I think this probably illustrates it in the best. I had a friend of mine when I was still in my wheelchair, came up to me and he said, "Hey, can I ask you something?" He said, "How should I speak to someone in a wheelchair?"

And I said, "Well, that's really easy. How do you speak to someone who's not in a wheelchair?" And I and I, and the point I was trying to make,

The biggest compliment that we can pay to people is we don't see the disability, we don't see the chair, we don't see that part of it. What we see as a person. Because I think what happens, and this is kind of the concept of ableism is, is once you put a label on someone that changes your behavior, your interactions, totally. But if you just see a person, no matter what, then you interact with that person and that allows that freedom to just say, "No, this is just a person."

Now they have to do things differently, and what am I doing to help accommodate that and how can I help them reach their goals? Because they have to do it differently. It doesn't mean that they're different. It means that they have to do things differently than I do them. There are, there are a few people out there who are a little bit militant about it. But yet I think the concept is really a good one that, that we're all basically people, and if you think about the aging of America, everybody's headed for some sort of disability in one shape or or another.

[00:32:11] Aaron - Narration: I asked Dale to tell me more about common misconceptions that people have about neurological injuries.

[00:32:18] Dr. Hull: I think the biggest hurdle or the biggest thing that people don't quite understand-- and whether or not it's a spinal cord injury or a brain injury or a stroke is with neurological injuries-- no two injuries are the same, and no two recoveries are ever the same.

And the reason that that is important is generally speaking, when friends or even family members show up, they all want a prognosis. They all want to say, "So is Joe going to walk again?" And the the difficult part is there isn't a textbook, an imaging device, a scientist, a physician. There is no predictive value of any of those things. We can't predict where someone's going to be because they're all unique and you actually just have to go. The proof is in the doing. That's really a concept that is not well understood.

The second part of that is most of us, and I will admit that even when I was a practicing physician, if I saw someone in a wheelchair with a spinal cord injuries in my mind I would say, "Oh, that's too bad they can't walk." But never gave any thought to loss of sensation, loss of bowel function, loss of bladder function, loss of sexuality, loss of the sense of touch, and even with high spinal cord injuries like myself, temperature regulation. People like me, we don't sweat and we don't shiver, and so we have to be very careful about our ambient temperature because we just don't regulate it like we used to.

There are so many quality of life issues that it's hard to wrap your head around. There was a couple of surveys done at separate times where they, they took people who had been paralyzed from a spinal cord injury at least 10 years, and one of the questions they asked is, "If we could give you the ability to walk or give you bladder function, which would you choose?" 85% of the respondents said Bladder function. No question.

And so when you think about if you are paralyzed in your wheelchair, yet you're having to cath yourself four to six times a day and you're worried about accidents, that is a huge quality of life issue. And I think those, those are the kind of things that I think surprises most of the people who, who have these injuries, right?

But certainly it's a big surprise to their family who have to take care of them. The friends show up and kind of come in and visit. They, they really have no concept of what that's like.

[00:35:09] Aaron: Yeah.

[00:35:09] Dr. Hull: You know what the, the, those little things of life that really become big things.

[00:35:15] Aaron - Narration: Neuroworx does far more than just treat patients who come through their doors. They're also constantly fighting to improve systemic failures that slow down or prevent healing. Our insurance and medical systems here in the US simply don't offer enough of the time and resources that traumatic injury patients need.

[00:35:34] Aaron: What are the systemic problems that need changing to better help people with paralysis?

[00:35:40] Dr. Hull: So, so two big problems. Number one is the length of hospital stays have significantly shortened. They're, they're about 70% shorter than they were 30 years ago. So 30 years ago, if you would've had a spinal cord injury, you would've been in the hospital for at least a hundred days on. Currently that average is 27 days.

So people are being discharged from the hospital so early that the, that the inpatient rehab really is only focused on getting them home and getting them ready to go home. So the burden has now shifted to the outpatient side.

Well, there's two big problems. Number one is they're not, they're not specialized centers for neurological rehab. Be, because it's not a money making concept. And number two, the insurance does not discriminate based on the acuity of the situation. Meaning, Aaron, if you blew out your ACL and had to have ACL surgery and you would get the same number of of outpatient physical therapy visits as if you got in a car accident and had a spinal cord injury and became a quadriplegic. There's no difference in the, in the number of visits that you would get. Most people get 20 to 30 visits for an entire calendar year, and then they're done. So the, the obstacle is access to care, access to specialized care, and then the financial barriers that prevent access, even if that specialized care is, is available.

Yeah. So, so those, those three things combined to make it. Overwhelmingly difficult for people to find any sort of progress. We're aware of people in other states that literally get discharged from the hospital and get maybe four outpatient visits. They're provided with a wheelchair and that's it.

They're, it's, "Here's your wheelchair. Have a nice life." And there's so much more. Even if you are confined to a chair for your mobility, learning how to transfer, learning how, what you do when you fall out, learning how to, you know, do pressure release. I mean, there's, there's just a myriad of things that have to be looked at and taken care of.

[00:37:53] Aaron - Narration: So, how is Neuroworx different? Well, it's in the time and care that they can offer their patients.

[00:37:59] Dr. Hull: It takes an enormous amount of creativity and, and a, a very dedicated type of person who can create a treatment plan for each individual. That's why it's so labor intensive and that's why it takes so long is. You know, each one of these people are, uh, you know, one of a kind. Right? And, and so it, it's just very labor intensive.

And I will say it's a labor of love because our clinicians are just so dedicated to what they do, that they're, they're incredible. And the people that we meet, the, the patients that come through are, are just incredible people. They're the most grateful, the most hardworking, resilient. They're, and I just think it's a privilege that we have a chance to associate with them.

[00:38:51] Aaron - Narration: Let's take a break here for a word from our sponsor.

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Earlier in the episode, I promised I would share Dale's story about carrying the Olympic torch. I don't think there's a moment in this episode that better captures the amazing person known as Dr. Dale Hull. If you need some motivation or just a reason to feel happy, you are going to love this story.

[00:40:09] Dr. Hull: So I was injured in 99. Fast forward to 2001, you know, I'm still working with Jan, and I had gotten to the point where I was walking with two arm crutches, if you know what those are. And I, I developed some better hand and finger function.

But at that point in, in time, I had, I had gotten to that point by setting incremental goals. You know, I'd, I'd make a goal and then I'd say, "Okay, well, so what's the next incremental goal?" And so I'd reached that point where I needed a new goal, again, 2001. And so I, I realized that the organizing committee for the 2002 winner Olympics here in Salt Lake City, they're going to allow ordinary citizens to carry the Olympic torch.

And I said, "Huh, there's a good goal." And I said to Jan, "You know what I, I want to be a torch bearer."

Now you have to keep in mind, my hands are still partially numb, right?

[00:41:06] Aaron: Yeah.

[00:41:07] Dr. Hull: Especially my right hand. If I don't keep thinking about what I'm holding in my right hand, it just drops. It just falls through.

And so Jan looked at me and she said, "Well, you realize you can, you know you, you got to carry a three and a half pound Olympic torch and it's going to be with gloves on in the cold. I mean, you really think you can do that, right?"

And then I said, "Yeah, and I don't want any assisted device. I don't want to be in a wheelchair. I don't want the cane or crutch, I just want to walk on my own. In fact, if I can, I want to run."

And of course she looked at me like, "Are you hypoxic? Or what is the problem?"

And so it really became an important goal for me. Well, in order to be an Olympic torch bearer, you had to be nominated. So I nominated myself and then I started a little campaign where I had everybody I knew nominate me. So I kind of ran for office, so to speak.

And so I get this letter from the Olympic Committee in July of, of 2000 and it says, "Yes, you've been selected as a torch bearer. You will carry the torch in February of 2002." And if you know anything about the, the, the torch of 2002, you know went all over the US. It took several months for it to make, make its way to Salt Lake. And so I knew I would be toward the end, which was great for me because I had six months to prepare.

So my goal became Jan's goal, became our goal, and we started to work toward that. That whole idea of can I carry the Olympic torch without any assisted device and do it on my own?

So I, I started to, to collect the information, I knew I'd had to walk two tenths of a mile, and I knew that the torch was three and a half pounds. So I got one of my son's baseball bats and I hooked an ankle weight to it to duplicate the weight.

[00:42:51] Aaron: Wow.

[00:42:51] Dr. Hull: And then I would go to a high school track on a regular basis two or three times a week, and I would walk once around the track, which if, if, you know, that's a quarter of a mile. And, and so I would practice walking and then I would hold the bat and then I would try and change hands, you know, see what it would be like to change hands. And then as it started to get colder, I started to wear gloves.

And then a friend of mine, in fact, it's a woman named Heather Simonson, who was a reporter for one of the TV stations who had interviewed me. She had carried the the torch in Texas. And she said, "Hey, do you want to borrow my torch to prepare?"

And I said, "Absolutely." And so I, I had her real torch to practice with. And so when it came my time, which was February the last day of the Olympic relay, when the torch was heading toward the University of Utah Stadium, I had my opportunity to be the, the Olympic torch bearer. And, and I was able to do it without a cane or crutch or, you know, with my own hands in the cold with gloves on.

And I didn't drop the torch. In fact, I, I always tease that if I had my choice, I'd rather light my hair on fire than be the guy who drops the Olympic torch on tv. Right? So, yeah. And, and then to make the whole thing more amazing as I was surrounded by hundreds of people, hundreds of friends, former patients who came to just see me carry the torch.

And, and, and then the, the Disney Hollywood end of that was I ended up passing the Olympic flame to Karl Malone of, of the Utah Jazz fame.

[00:44:25] Aaron: Yeah.

[00:44:25] Dr. Hull: Hall of Fame basketball player, which was totally unknown to me until that day. So this, this moment when I'm, when I'm passing the Olympic flame to Karl, I describe as my George Bailey all that's "A Wonderful Life" moment because all of those people were there surrounding me with pure joy, just for me.

[00:44:47] Aaron: Yeah.

[00:44:47] Dr. Hull: And it, it, I mean, it was just surreal. I mean, there's just no way to describe what, what that was like. You know, the, the ability to be the, the torch bearer of the Sacred Flame and then having all those people in support. And it's, it's really kind of a hollywoodish type movie scene, you know.

[00:45:10] Aaron - Narration: With two decades of treating patients at Neuroworx, stories like Dale's could fill a whole season's worth of podcast episodes. In truth, there are thousands of these stories, because each patient who comes there accomplishes so much. But here's a favorite story of Dale's about a young dancer who went on to become a local celebrity and inspiration.

[00:45:33] Dr. Hull: So Meg Johnson was a young 20 something year old dancer, beautiful girl, was down in southern Utah with her boyfriend. And they were out in the red rocks, jumping rock to rock, just having a good time. And Meg became visually disoriented, thought she was jumping to the next rock, and actually ended up jumping out into space and fell 30 feet. Ended up with a broken femur, broken wrist, and worst of all, a neck and a spinal cord injury, leaving her a quadripalegic.

And that was obviously tremendously difficult for her. And she eventually, after she left the hospital, began to do her outpatient therapy with us at Neuroworx. And still had a beautiful spirit, but was very discouraged and distressed because, you know, her life as a dancer was done and, and trying to figure out what to do from there.

Well, about a year and a half after her accident, Meg discovered that there's actually a Miss Wheelchair America pageant, and she decided I'm going to enter the Miss Wheelchair America pageant. She called them up and tried to enter and they said, "Well, where do you live?" "Well, I live in Utah." They said, "Well, we're sorry you cannot enter the national pageant because you have to be a state winner first. And Utah doesn't have a pageant. Sorry."

So most of us at this point in time would probably give up. Not Meg. Meg immediately gets on eBay, she finds a used tiara and she orders it. It comes, she inboxes it. She takes this tiara, puts it on her head, picks up the phone, calls back Miss Wheelchair America and says, "Hi, I'm Meg Johnson. I'm Miss Wheelchair Utah." She, she literally crowned herself.

They, they let her enter the pageant and they were so impressed that they said, "We'll give you the charter to go back and start the the Utah pageant". Which she did, and at one point in time, the Utah pageant actually was the largest pageant in the nation based on audience and participants.

She doesn't do the Miss Utah pageant anymore, but she does what's called the Princess Pageant, where she focuses on little girls who are in wheelchairs. And she absolutely spoils them for two days and brings them in, and she has these college-aged girls dress up as all the princesses, like Belle and yeah, Snow White and everything. And, and these college-aged girls just spoil these little girls with makeup and they do their hair, they get dinner, and they get to be together. If they, if they have talent, they get to perform. So it's not really a competition. It's more of a celebration for these little girls and it literally changes their lives.

And, and Meg's gone on to be A really successful motivational speaker. She has her own YouTube channel. So the way I, the way I paint this is, this is literally the power of one.

[00:48:41] Aaron: Yeah.

[00:48:42] Dr. Hull: How one person can change so many lives for the good. So she's, she's literally one of my favorite stories. I mean, it just makes me laugh every time I think about her ordering to eat a tiara, you know, it's just like, "Who would do that?"

[00:49:06] Aaron: Yeah.

[00:49:07] Dr. Hull: Well, if you know Meg, once you meet Meg, you say, "Oh yeah, Meg would do that."

[00:49:12] Aaron: I love it.

[00:49:14] Aaron - Narration: Dale also told me another story about a teenage boy named Hank. He was a downhill skiing phenom on his way to making the US Olympic team. Because of a car crash, Hank had to start all over due to spinal cord and brain injuries. In the early days, he struggled not only to walk, but also to remember how to do even basic math. Now, Hank has multiple university degrees and is a physical therapist himself.

Stories like this reflect the vision that Dale and Jen have had all along. I asked him to share his vision of what comes next for Neuroworx.

[00:49:50] Aaron: What do you hope this work that you're doing looks like 10 years from now?

[00:49:54] Dr. Hull: I, I think the, the biggest thing that I'm working toward, and Jan and I hope is again, that we overcome that access to care. That, that there are more specialty clinics available, that the, the therapies is readily available and we hope that we made a difference in eliminating those barriers to care, particularly the financial barriers to care.

We did some legislative things here in Utah where we, we were able to create a, a fund that will help the citizens, Utah, get the care they need. We've shown that the return on investment is anywhere between five to one, to nine to one based on the the dollars that the state invests. So I think what we hope that at some point in time we can convince the payers and those individuals who have control over the financial barriers, that that really is a pay forward. That if you give us a little bit of money up front, we're going to save money on the long run, and we're going to make people who are more independent, have better health, have a better quality of life, and are more likely to return to work and school into an abundant life. If, if we can make that happen, then I'll, I'll feel like I can die a happy man in that regard.

[00:51:17] Aaron - Narration: Here now at the end, I have truly saved the best for last. This insight and wisdom from Dale went straight into my heart. Never having experienced anything like what Dale has, I wondered if he ever felt regret for his injury. I can think of so many things that I regret. But none of them changed my life as dramatically as that summer evening in 1999 did for him.

Does he sometimes think of what his life would be like but for that night. How does he think about it all these years later?

[00:51:52] Dr. Hull: I haven't spent an enormous amount of time thinking about what my life would've been like had it not happened. But here's what I will say and I've, I've said it many, many times and it always surprised me.

But you know, this journey that I've been on and the adversity that I've been through has been so rich in its learning and the things that I've acquired and the depth and the insight, that if God or Buddha or Bill Gates could stand right next to me right now, and say, "I'm going to touch you, and when I touch you, you're going to be made whole again, but you'll have to forget everything you've learned."

I would say, "Don't touch me," which always surprises me, because I miss my body every day. I miss being me, but yet I couldn't go back, because of, of the experiences and who I am and what I've been given because of that.

[00:53:13] Aaron: Yeah.

[00:53:16] Dr. Hull: So I don't really think about the what if, because the other, the other side of it is so... amazing.

[00:53:27] Aaron - Narration: All of us, due to setbacks, big and small, sometimes unexpectedly find ourselves stuck. Even if there's no real comparison with being physically paralyzed, we might still feel trapped or imprisoned by a sudden departure from the life we expected. We may not see a way forward because of how hard and painful our circumstances have become.

To fight against our setbacks, to defy and overcome them like Dale has and thousands of others, makes us into new people. Our victories, when hard won, become precious to us because of how they shape and mold us. And those who help us regain our freedom and find new selves, become our angels, our heroes, and our friends.

Like Dr. Hull, we will find ourselves on the other side amazed and full of gratitude.

I want to thank Dr. Dale Hull for taking the time to share his inspiring stories and wise insights with us. I feel so lucky to know him. And Neuroworx relies heavily on the generosity of donors to make their services possible. If you want to help them in their work, consider making a donation. You can find a link to their website in the show notes for this episode.

I'm also very excited for you to hear our next episode, an interview with Walter Shaub. He's the former director of the US Office of Government Ethics and one of the most important voices demanding integrity from the people who run our country. Shaub has succeeded in offending people from across the political spectrum. He's also funny, kind, and fascinating to talk to. I'm confident you're going to love this episode.

If you enjoy How to Help, please take a moment to give us a positive review in your podcast app. It really helps us reach more listeners. And if you have a favorite episode, will you share it on social media? It means a lot to us.

If you want to stay up to date with the podcast and my other work, subscribe to the How to Help email newsletter, where I share ideas for how to have more meaning in your life and in your work. You can subscribe or read the archives at how-to-help.com.

This episode was written and recorded by me. Our production team included Ty Bingham, yours truly, and Joseph Sandholtz, who also mixes our audio. Our music comes from the Pleasant Pictures Music Club, and if you want to use their music in your projects, you can find a link and a discount code in our show notes.

Finally, as always, thank you so much for listening. I'm Aaron Miller, and this has been How to Help.


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Written by

Aaron Miller

Aaron Miller

Provo, UT