Dr. Dale Hull Explains How Life Changes In A Fraction Of A Second
Editor’s Note: If you look up the word character in different references, you’ll see that it’s one of the most-difficult words in the world to define. We all know character when we see it, but what is it? Dr. Dale B. Hull is one such person who demonstrates the word, character, and shows us what we have to do to acquire it and use our character for the betterment of mankind.
Dr. Dale Hull founded NeuroWorx in Salt Lake City, UT after experiencing a severe spinal cord injury of his own. Get an idea of a Dale’s unwavering commitment to helping other people who use wheelchairs in the video below before you read his personal story that follows.
I was a practicing OB/GYN (Obstetrics and Gynecology) doctor and a general practitioner with a family of four boys. I was always on the go, I loved my work and I was very active in my church. I always participated in sports, and played football all the way through college as a defensive back. I also played basketball, softball and whatever sports my children enjoyed, as well as boating, skiing and wakeboarding. I was really living the good life. The last thing I thought ever would happen to me was to be paralyzed from the neck down. When I hit the trampoline, I heard my neck crack and felt my body go limp. The first words out of my mouth were, “Oh, God, not this. Come on, God, give me some kind of injury that I’ll know how to fix.”
We all have adversities in life. The hard part of spinal-cord injury is that kind of adversity isn’t on anyone’s list of adversities that they think they’ll have to face and solve in their lifetimes. Being trained as a physician, my daily and life’s work was solving problems, but I had references. I knew where to look for answers. I knew the people who had the answers I didn’t have. My whole life, I had been dealing with children’s and adults problems. I read something somewhere that best describes how I felt — “I felt like a mosquito in a nudist colony. I didn’t know where to start.”
I had grown-up with trampolines, knew quite a few tricks to do on them and enjoyed the free flight that the trampoline offered me. On this particular day, I was doing a laid-out back flip, but I didn’t have enough rotation in the execution of the flip to bring me all the way around to land on my feet. I didn’t fall off the trampoline. I landed on the mat (the bed of the trampoline) on the back of my head and the top of my shoulders. My body was still rotating when I hit. Then, I heard and felt a pop. Just like someone had thrown a switch, my entire body went numb. I knew what had happened when I landed.
When I realized my condition, my second thought was, “Okay, this is what I’ll be dealing with – a spinal-cord injury.” I was lying on the mat by myself for awhile since my dog was the only one with me when the accident happened. I thought I was going to have a great Lassie story. I thought the dog would come over, recognize that I was injured and run for help (just like one of the many episodes of the old TV show “Lassie”). But my dog didn’t really seem to understand what was going on, and I was disappointed.
My wife eventually looked out the window and realized that I was on the trampoline motionless. So, she called the emergency medical people. When the paramedics arrived, I told the lead paramedic, “This is not a drill. This is the real thing. I have a spinal-cord injury. I need you to do everything possible to get me off the trampoline and to the hospital without creating any-more damage to my spinal cord.”
At that time, giving spinal-cord injury patients steroids, as soon as they arrived the emergency room, was common practice. The steroids would help reduce the swelling of the spinal cord. So, I told my wife to call the emergency room, and tell them that I was coming in with a spinal-cord injury and to make sure they had the steroids that I needed on hand and be ready to inject me with them. The first responders took me to the hospital, where I had been practicing medicine for 10 years. So, I knew all the doctors and nurses.
When I arrived at the hospital, my emergency-room friends were still reserving judgment on the seriousness of my condition. I think they were optimistically thinking that the information they had received over the radio, before I arrived, was exaggerated and blown out of proportion. Once they got me in the emergency room, and found that I had no sensory function below my upper shoulders, they took a quick x-ray, which showed that I had successfully dislocated the 5th cervical vertebra over the top of the 4th cervical vertebra, and those two vertebrae remained locked. I also had a couple of fractures. My spinal cord was coming down and making two, different 90-degree turns. Therefore, the spinal cord was pinched by the bony dislocation. At that point in time, my prognosis was pretty grim (my future looked really, really bad). They didn’t believe that I would have any chance of any type of recovery.
The common terms for spinal-cord injuries are either a “complete or incomplete injury.” A complete spinal-cord injury means that you won’t have any sensory or motor feeling below the injury. The doctors, who first examined me, were considering the idea that I had a complete injury; although, they didn’t talk to me about the injury very much. They stabilized me and sent me to University of Utah Hospital where I had done my medical training. I tell everyone that was the worst kind of alumni homecoming that anyone could have. Plates were put in my neck to stabilize the dislocated area. Once there’s dislocation and fractures in the spinal column, the neck needs to be stabilized.
While I was in the hospital, the life that I once knew was over. I was no longer going to be a doctor, a physician, a husband or a father like I once had been. I didn’t know exactly what life would be like, but I knew what it was not going to be like. People are defined by what they do in life. When you can’t do what you’re accustomed to doing, you become no one. You totally lose your identity.
The hardest part of a spinal-cord injury for me, and I think for most people, is the struggle to find out who you are, when you’re not who you were. You’ve lost the ability to do what you’ve been defined by, prior to your injury. For instance, I was a doctor, but now I was a quadriplegic.
Another problem was that my wife was thrust into a medical situation, and she was a non-medical person. Having to make decisions, when I wasn’t capable of making those decisions, was difficult for her. Then, she had to constantly go to the hospital, take care of our children and try to maintain some sense of normalcy during this time. My accident and the effects of it also rippled through the community where we lived. We had phone calls coming-in from all over the place. Well-wishers were calling trying to find out what they could do to help. So, she had the additional responsibility of managing all the phone calls.
Before my accident, I would have described myself as malignantly independent. I really didn’t need anybody. To go from malignantly independent to totally dependent in a matter of a few seconds was one of the most-difficult aspects of my injury. Becoming a patient, when you’ve been a medical caregiver, is extremely difficult – and not only due to the accident, but because you have to subordinate yourself to other human beings. You have to surrender one of the most-important parts of your life (your independence) and become totally dependent on other people. Everything about my body from my shoulders down had to be taken care of by someone else.
Surrendering my independence was terribly difficult for me. At one point, I was even concerned about being an acceptable patient to the nurses. I didn’t want to be the doctor that none of the nurses wanted as a patient. I was quite concerned about how the nurses thought of me as both a doctor and a patient. Before my injury, I was a team leader for the nurses with my patients. The ultimate decision about their care was my responsibility. Now, the nurses were in charge. I wasn’t a doctor. I was a patient. When the nurses would come in, if they called me Dr. Hull, I would say, “No, just call me Dale.” I wanted them to take care of me as a patient, and not look on me as a doctor.
Goodbye to Dr. Dale Hull, Hello to Dale
I went to rehab one week after my accident. Most of us, when we go to the hospital, expect to get better, even if we die. The term that medical professionals use for death is, “being transported to the eternal care unit” (the ECU).
When you go to rehab, what you quickly realize is that you go to rehab not to become better but to become different. If you have a spinal-cord injury or have experienced a brain-damaging injury, a stroke or some serious form of accident from trauma, you’ll never be the same as you have been before the accident. So, willing to become different becomes a much-more-challenging frame of mind.
Being different is something you probably really never have had to think about before the accident. If you break your arm, you have a cast on that arm for about 6 weeks, then the cast comes off, and you are back to normal. If you get cut, you have stitches, and the scab forms and eventually falls off. Maybe you’ll have a scar, but your life returns to what it was. So, most people who go to the hospital assume that in a few days, a few weeks or a few months, after they leave the hospital, their life will go back to normal.
However, when you have the type of accident that I had, you realize that you are on an uncharted path, and you have no idea where that path will take you. You don’t know how you’ll get down the path, who will help you, and what awaits you at the end of the path. So, life becomes really scary. You have no knowledge or experience of how to deal with this different world into which you’ve been thrust.
About 2 years prior to my accident, a medical school classmate of mine had broken his neck. He had become a quadriplegic. I had gone to visit him in the hospital. Ironically, when I had my injury, I was put in the same hospital room where he’d been. I had visited this friend, while he was still in a halo brace, and struggling through many of the same problems that I now was facing.
When I visited my friend, I really didn’t understand the problems he was having or the problems that confront people with spinal-cord injuries. I had taken care of people who had spinal-cord injuries before, as a physician, but they had lower spinal-cord injuries and were paraplegics. I had an attitude of, “Oh, you are in a wheelchair, and you can’t walk. Other than that, everything in your world seems to be okay,” although, I never verbalized these thoughts. Now, I realized the depths of problems these individuals were facing on a daily basis.
Rehab, for me, was a roller coaster. I had days where I felt that I was making progress, and I would have days where I would have to contemplate where my boundaries were and whether I really wanted to keep living with this body I now had. I tried to be very brave during the day when people came to visit me. I would tell them that I was going to be fine; especially the people who were really upset. However, when they all went home at night, and my room was quiet, then I would break down.
That’s when I did my crying, my praying, my wondering and my doubting. I don’t really know, exactly, how I came out of that depressed state. I had my faith, and I had the support of family and friends. Finally, I learned to break my life down to 1-minute increments, “Can I make it through the next minute?” Then later I asked myself, “Can I make it through the next hour,” and then, “Can I make it through the day?”
For me, this system worked. If I stopped and thought about the enormity and the impact that this accident had not only on me and my family but everyone around me, the problem was too big for me to handle. I was washed over with a tsunami of guilt, and what my life would be like. I realized that I had a self-inflicted accident, and that accident had impacted my family.
Even now, 13 years after my accident, I tell people, I reserve 15 minutes of self pity whether I need it or not. I still miss me (who I used to be). Even though, I have an enormous amount of functionality from where I started, I still require that 15 minutes of self pity. I guess the only way that I really got over losing me was I had a mental wake for Dr. Dale Hull. I realized that Dr. Dale Hull was a really-great guy, and I liked him a lot, but he was gone. I missed and still miss him enormously, but he wasn’t coming back. I had to move on and bury Dr. Dale Hull, which was essential to my recovery and to my ability to learn to be different.
Setback After Setback and Finally a Clear Course to Recovery
I went into rehab thinking I wouldn’t get any function at all back. The only goal that I had was to have the ability to drive a power chair with a joy stick. At the time, the only way I could control my environment was to use a sip-and-puff tube. If I wanted to sit up in bed, to call the nurse or change the channel on the television, I would use the sip-and-puff tube. My only goal was to be able to have enough function to operate a power chair. I never could have believed that 2-years later, I’d be carrying the Olympic torch.
Finally, I came-up with an idea that if I lay in bed and visualized my arms and legs moving, I would be sending signals down to my spinal cord. Maybe somehow, some way, those signals would put themselves in a path where they were supposed to go, and I could get some function back. I am not sure whether this process was the strivings of a desperate mind to make my body do what it wanted it to do, or if it was a way to keep myself entertained and not think about the things I didn’t want to consider.
A couple weeks later, I began to feel light touches all over my body, which was a very-good sign that signals were traveling from my spinal cord up to my brain. Once I realized that enough of my spinal cord was intact to carry signals to my brain, I thought, if the signals could travel upward, maybe there was a possibility that the signals could travel down from my brain to my extremities. This idea renewed my sense that maybe by using visualization and seeing my body move mentally that I possibly could get some function back.
The rule of thumb with spinal-cord injuries is that you have a possibility of getting spinal-cord function at one or two levels below the injury. Since I was injured at the C4 and C5 level, the best I could hope for in a typical recovery was that I might be able to get some neurological function down to the C7 level. This would allow me to have some bicep function, maybe some wrist extension, and if I was really lucky, maybe have some function in my triceps. If I could gain wrist extension and triceps function, I knew that I would be much-more independent than I was with no function below the top of my shoulders. For me, independence was centered on those muscle groups being able to function.
My recovery was really quite odd. I started having movement in my lower extremities first and could wiggle one of my toes. Soon, my legs were starting to twitch. A couple weeks later, while I was in therapy, my arms began to move – a motion called central spinal-cord syndrome. In other words, I’d crushed the center part of the spinal cord but not the external part. Therefore, I had function of my arms but not my legs. For a time in rehab, that was my hope.
Then I started having bad nerve pain and I developed a cyst and had to have surgery. The doctors went all the way back to my spinal cord to see if they could puncture the cyst. That procedure was not successful. Ten days later, I developed a large post-surgical abscess in my neck, which the doctors were afraid had gotten into the bones of my neck. I was very frightened. I was given antibiotics for 6 weeks. Then, I had another surgery to drain the abscess. After 3-1/2-months in the hospital, I finally went home.
I had to return to the hospital with a severe urinary-tract infection, and a blood infection called sepsis. When I finally got back home, I had lost all the function that I had worked so hard in the hospital to develop. Six months after my accident, I was still confined to a wheelchair. I could shuffle my way about 20 or 30 feet with a gait belt that supported me. I didn’t have any finger function; therefore, I was still dependent on other people to care for me.
Seven months after my accident, I was getting physical and occupational therapy at my house. When my physical therapist went on vacation, Jan Black took her place for that week. I determined that Jan was going to be the key to help me capitalize on the function that I had before I got sick. Since I kept making progress, my insurance continued to pay for my therapy for a year and half after my accident, which was extraordinary. My classification changed from getting outpatient therapy to getting home health, which allowed my benefits to be a little better, than if I was only getting outpatient therapy. Eventually, I let my occupational therapist go and convinced my insurance company to pay Jan Black, for both physical and occupational therapy. Eventually, we were working 5 to 6 days a week for 5 to 6 hours every day.
Dr. Dale Hull Wanted To Walk and Carry the Olympic Torch
I met Jan Black in the middle of 2000. In 2001, my recovery had progressed to the point that I could use arm crutches, and I was starting to get finger function and wrist extension. I was making an extraordinary amount of progress. About that time, I realized that I needed a new goal to try and achieve.
If you will remember, in 2002 the Winter Olympics were awarded to Salt Lake City, Utah. The organization committee of the Olympics had announced that they were going to allow ordinary citizens to carry the Olympic torch. You had to be nominated to be a torch bearer. So, I told Jan that my new goal was to be an Olympic torch bearer, but I didn’t want to carry the Olympic torch in a wheelchair. I wanted to walk and carry the torch.
As a matter of fact, if I could run, I wanted to run with the torch and carry it in my own hands without any kind of assistive device. Even with the progress I had already made, this new goal was an almost-impossible task. I was still partially numb, especially, in my right hand, which was the hand in which I hold things. That function, at that time, could disappear at any given moment, and I would drop whatever I was holding. For someone like me, the idea of carrying a 3-1/2-pound Olympic torch with gloves on in the cold and not dropping it was a very-big deal.
My goal became Jan’s goal. Together, our goal was for me to carry the Olympic torch for the Winter Olympics in 2002. Jan and I started working toward that goal. I contacted everyone I knew, asked them to write letters to the Olympic Committee nominating me to be a torch bearer, and I nominated myself to be a torch bearer.
In July of 2001, I learned that I would be a torch bearer in 2002. I only had about 6 months to get my body and my mind in condition to carry the Olympic torch. Jan put together a plan of exercise and therapy to condition me to accomplish this feat. We used aquatic therapy in a special harness. I took one of my son’s baseball bats and strapped an ankle weight to the bat to replicate the weight of the torch. I knew I had to walk .2 of a mile and carry the torch.
Regularly, Jan and I would go to a high-school track, and I would practice walking around that track holding the baseball bat with the ankle weight attached to it. I had to learn how to balance myself, how to change hands with the torch and how to perform every task that would be required of a torch bearer. I had to prepare my body for the Olympic torch walk in addition to my normal therapy routine.
About two weeks before I was supposed to carry the torch, a friend of mine who had carried the Olympic torch in Texas let me borrow her real Olympic torch. I practiced carrying it and did everything I could to prepare for this event. My turn to carry the torch was to be on February 8th, which was the last day of the torch-bearing event. I was well down the line of torch bearers and fairly close to the stadium, where the torch would be used to light the Olympic flame. I had hundreds and hundreds of people who planned to be along the route that the Olympic torch would be carried, who were planning to come just to see me.
For me, I knew carrying the Olympic torch would be an unbelievable experience. At that minute, I would be the only person on the face of the earth who was universally recognized by all people all over the world, and the symbolism of the Olympic torch meant the same thing to everyone. There’s not another symbol in the world that everyone agrees has the same meaning, for everyone else in the world, regardless of language, where they live, their religion, their education or lack thereof. This universal emblem had the power and ability to connect me with the rest of the world.
When I began to think about the fact that 2-1/2-years earlier, the only thing I could do was move my head, participating in the event became almost overwhelming. I couldn’t get over the fact that I would be walking down the street in downtown Salt Lake City Utah, carrying this torch with hundreds of people watching. I never dreamed 2-1/2-years earlier that I would have this kind of opportunity. At that time, I was totally paralyzed.
Unbeknownst to me, just before the day I was to carry the torch, the area that I was supposed to carry the torch had been changed. I was moved back .2 of a mile. Just prior to this, Karl Malone, the great basketball player, had been expected to carry the torch, but because of some of the things he said in the media, no one really thought that he would be permitted to do so.
So, on the day that I went down to take my place on the course, I was told I was being moved back .2 mile, but I would be passing the torch to Karl Malone. They didn’t explain, until the day of the event, that I would be passing the torch off to one of the most-famous basketball players in the history of the sport. When I learned I would be passing the torch to Karl Malone, I really started to wonder who was writing the unbelievable script of my life.
Life for Dr. Dale Hull after the Olympic Torch
I’d needed 2-1/2-years or maybe a little longer in my recovery to become an Olympic torch bearer. During my recovery, I had been asked to go see quite a few people who had injuries similar to mine. Everyone wanted to know, “How did you get so-much function back? What did you do to get all the physical therapy you needed?”
During the time that Jan Black was working with me, she was working on my physical therapy and also, working with other people in their homes, who wanted more therapy. Jan had worked with spinal-cord injury people throughout her entire career. She knew that there was a better way to help people get more function, and she wanted her own clinic. I kept having other people wanting to know and wanting to have help with their therapy, after the 20 visits that most insurance companies allowed ended.
Jan and I began to talk about why someone hadn’t started a special clinic, devoted exclusively to people with spinal-cord injuries. We began to think that if we partnered and decided to create such a clinic, how could we make it happen?
At one point in time, we found a quote by Mahatma Gandhi, which I never had read before, although you’ve probably seen it on bumper stickers and many other places. The quote is, “You must be the change you wish to see in the world.” As soon as I read that quote, I knew what it meant.
I knew that it was my responsibility to be a part of setting-up a physical-therapy clinic designed and developed specifically to help people with spinal-cord injuries, after their insurance quit paying for their therapy. I thought, “I have been blessed enough to regain some function in my body with Jan’s expertise and hard work. I can give back for what I have received by helping others to have the same opportunity that I had had – more therapy and more-specific therapy, for either type of injury, and the use of specialized equipment to help give me every advantage to get all the function I possibly could get back.”
What happened next is a miracle known as Neuroworx:[youtube http://www.youtube.com/watch?v=wjZf2JlMbik&w=560&h=315]
My wife, Jan Black, Dr. Wally Lee, an emergency-room physician, who became a paraplegic in 2002, and me formed the Hull Foundation in November of 2003 to create a state-of-the-art outpatient physical-therapy clinic called Neuroworx, a spinal-cord and neurology-recovery center. We can start working with patients even when they are still in the hospital. We’re a community-based life and therapy center that focuses primarily on spinal-cord injuries. But we also have attracted quite a few people with brain injuries, strokes and other neurological conditions.
Here’s an example of pool therapy at Neuroworx:[youtube http://www.youtube.com/watch?v=ruKWB8tRTpc&w=420&h=315]
We are trying to be very innovative and aggressive in what we offer to our clients. If you were to get injured today, you probably only would be eligible for 20-outpatient visits per year, and each one of those sessions only would account for 50 minutes of billable time (the amount of time that an insurance company would pay the physical therapist to work with you). If you had torn a rotator cuff in your shoulder, you would get 20 visits to help rehabilitate that rotator-cuff injury. If you broke your neck and damaged your spinal cord, you still only would receive about 20 visits to rehabilitate your entire body.
Our foundation gives individuals an extraordinary amount of time for their rehabilitation. We may bill the insurance company for 50 minutes, but the individual actually may be here for 2- or 2-1/2-hours. We created Neuroworx as a nonprofit to try and give people as much therapy as they need, and not just the amount of therapy that we can bill an insurance company. We want to give people the ability to reach their highest level of function.
The Holy Grail for a person who is paralyzed is to regain the ability to walk, since that’s the way we as humans are defined. But we are not miracle workers. What we have learned is that if we make individuals’ spirits walk, we have done a great thing. If we can help them obtain a small degree of independence, that can be a quantum leap for the rest of their lives. Since we give supplemental care above what an insurance company will pay for, we have to do fund raising. So, we write grants, solicit funds and do whatever we can to get our patients funding for additional help. We try to do as much charity care as possible.
Neuroworx sponsors the Wheelin’ Jazz wheelchair basketball team in Salt Lake City as part of their outreach efforts. See the team story below:[youtube http://www.youtube.com/watch?v=feTeuV4lC8c&w=560&h=315]
We have attracted some benevolent contributions from organizations like the Christopher Reeve Foundation, which gave us a quality-of-life grant. We were very honored when the Christopher and Dana Reeve Foundation asked us to become a part of their neuro-recovery network. Currently there are six research facilities and five community-fitness-and-wellness centers in their network. We are one of those five community-fitness-and-wellness centers.
Part of the purpose of these community-fitness-and-wellness centers is to demonstrate that exercise can help enable people with spinal-cord injuries to get back into their communities and be healthier and have fewer medical problems, because, they have a regimen of exercise.
In 2004, Jan Black and I were the only ones involved in the foundation, and we had an empty room. We had a pair of hand weights, a blue therapy mat and a red therapy ball. We were using local swimming pools for aquatic therapy. Now, we have 10,000 feet of space, lots of specialized equipment and a staff of 10. Actually we’re out of space, now. We hope to build our own building and become the best outpatient facility for spinal-cord and neurologic-injuries in the nation.
As for me, I’m still partially paralyzed from my chest down, and I walk with a cane. Walking has become a very conscious act for me. When I’m familiar with my surroundings, I walk without a cane. When I’m out and about, I use my cane to prevent being accused of being under the influence. So I am known as a walking clod. I am fairly independent. I can drive myself where I want to go.
More Fundraising Help from Wheel:Life
In this book, you’ll review 10 brainstorming ideas for different types of fundraiser events to benefit an individual with a disability who needs assistance for medical equipment, physical rehabilitation, adaptive sports equipment or daily medical needs.
Throughout the book, author Lisa Wells shares real-life examples and success stories from her interactions with disability advocates, non-profit supporters and Wheel:Life members throughout a healthcare marketing career that spans more than 20 years on three continents.
10 Fundraising Ideas to Help People with Disabilities features interviews from:
• Paralympian Bert Burns on how he raised support to begin his career in wheelchair racing
• Project Walk Atlanta participant Leslie Ostrander on how she raised money for additional rehab
• The founders of 100 Songs for Kids on their annual music event to benefit children’s medical charities
• Rolling Inspiration creator Chris Salas on how he lined up sponsors for his SCI peer support group
and power soccer team
• The creators of Hunter’s Torch Daylily Garden, a fundraising resource for a child with special needs.
• The Independence Fund – a little known source of financial support for disabled US veterans.
About the Author: For the last 12 years, John E. Phillips of Vestavia, Alabama, has been a professional blogger for major companies, corporations and tourism associations throughout the nation. During his 24 years as Outdoor Editor for “The Birmingham Post-Herald” newspaper, he published more than 7,000 newspaper columns and sold more than 100,000 of his photos to newspapers, magazines and internet sites. He also hosted a radio show that was syndicated at 27 radio stations; created, wrote and sold a syndicated newspaper column that ran in 38 newspapers for more than a decade; and wrote and sold more than 30 books. Learn more at www.johninthewild.com.
For more stories about amazing people who just happen to use wheelchairs, get the new Kindle eBooks, “Moving Forward: The Stories of Hometown Heroes” and “Courage: The Stories of Hometown Heroes,” both by John E. Phillips.
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