For the Spirit God gave us does not make us timid, but gives us power, love and self-discipline.
~2 Timothy 1:7 NIV
EVENTUALLY DURING PT, I was able to stay in the chair for longer periods of time, and we’d go outside to the courtyard where the fresh air eased the nausea and afforded me my first real look at Rochester and the Mayo complex. Breathing fresh air and looking around outside helped me feel normal, so we’d go outside as much as possible.
As my body tolerated longer bouts in the wheelchair, Megan and her team wanted me to try transitioning from riding in the chair to driving it on my own. Even though I desperately wanted to drive, I didn’t feel very confident. The machine was pretty fast, and I worried that if I couldn’t direct it, or if my hand dropped off the joystick, the chair would spin out of control. Fortunately, my longing for independence far outweighed my fear.
After experimenting with an array of joysticks, we finally settled on one that looked like a field goal and held my hand in place. Megan was right there with me, and it was definitely nerve-wracking for both of us the first time I tried to drive, but we gave it a whirl. The first few tries were epic failures because my arm wasn’t very strong. Disappointment fueled my determination to work hard with the OT on my left arm and wrist, and to practice with the chair every night after rehab until my arm screamed from fatigue.
My frustration showed, but when Megan suggested using a sip and puff wheelchair driving system that used a straw and head movements to control the chair, I adamantly refused. I knew the sip and puff chair was used for patients who needed the most extreme assistance, and I was stubborn enough and determined enough to fight for a joystick-controlled chair that I could drive on my own. After much pleading, Megan relented, and I made it work the following day. Learning to drive the power chair was more difficult than I ever expected, and it took patience and hard work, but I was ready for the challenge.
As I started to adjust to being in my chair and we drove around the rehab floor and through the PT gym full of mat tables, I looked forward to the day when I would be strong enough to use the mat table for stretching, exercises, and working on chair-to-table transfers. At that time in my recovery, my neck wasn’t strong enough to support itself, and I’d get lightheaded in my chair. Even when we began to use the mat table, my body had little to no strength, and I had to count on at least two people to move me to the mat, using a sliding board that acted as a bridge under my legs.
Once on the table, I had absolutely no core strength, so my body would just fold over. Megan had to coddle me like a baby to keep me upright, sitting directly behind me with her legs on the outside of mine, as if we were riding a four-wheeler together. With little core strength, I easily folded to one side, or hunched forward over my legs, fatiguing my neck and forcing me to lay back against Megan. Although embarrassing, I had no choice but to lean back on her when my neck screamed from muscle pain. With time and practice, my neck began to fatigue less and my core muscles started to activate.
Within a couple of weeks, I was able to sit without the support of a person. A defining, yet nerve-wracking, moment came when Megan wanted to walk across the room to grab a weight band, and she asked if I could hold my balance without falling. My heart began to race at the thought of not having someone right there to catch me. I could hardly move, let alone break my fall. I nodded with fearful confidence because I knew I needed to push myself out of my comfort zone. I felt like I was balancing on the edge of a cliff. Falling could set my recovery back. I sat extremely still, barely breathing as Megan slowly stepped backward while watching me closely. With intense concentration, I was able to remain balanced, prompting a forward progression in my recovery. Over time my strength and confidence grew, so when no one sat right next to me I wouldn’t freak out knowing I could sit and not worry about falling.
There was a reason behind everything we did in therapy, and the therapists always explained the goal. For example, when they placed electrodes on different muscles in PT, they said it was to help wake up the nerves and keep the muscle strong, firing, and to keep it from atrophying. The therapists were good about keeping things objective. They didn’t set specific goals because everyone had their own pace of recovery, and they couldn’t predict the speed at which I’d recover.
I probably enjoyed PT the most because that was where I was most active, so I felt more like myself. I’d started using an electrical stimulation bicycle, the RT300, where, while seated in the wheelchair, the PTs connected my feet to stationary bike pedals. The RT300 used a motor to drive the pedals until my legs, aided by the electrodes, took over. It felt great to do something familiar as well as productive. Everything in PT worked toward getting my body used to being in the upright position so I’d eventually be able to use a walking treadmill system called a Lokomat. In OT, I worked on feeding myself with the aid of an anti-gravity machine, and dressing myself—important skills involving my fingers and increasing my dexterity—but I enjoyed the more active PT.
Throughout my stay in rehab, I had twice-weekly visits with the medical staff. Each professional gave an update on their part of my recovery and talked about how they planned to move forward with my care so that everyone was on the same page. My family called those meetings the “State of the Union” because they included my doctors, the floor nurse, my nurse for the day, my lead physical therapist, my lead occupational therapist along with an OT student, the social worker assigned to my case, and any residential doctors or nurses on rotation.
I dreaded the “State of the Union” meetings because they’d talk about areas where they weren’t seeing any progress and what kind of assistance I would need once at home, such as a home lift system and a medical bed. I didn’t want to talk about what I’d go home with when every day was an opportunity to get better. Their talk became like white noise as I tried my best to block out their negativity and not get discouraged by the slow pace and their low expectations for my recovery.
To counteract the effects of the “State of the Union” meetings, my dad and I talked about things we’d done in the past and made plans for the future in order to stay positive and provide a sense of normalcy. Looking forward to the future and knowing things would get better helped me stay optimistic because my life wasn’t over. I needed something to look forward to and something to strive for when everything seemed so uncertain.
One of the most difficult things about being in the hospital was when the weekends rolled around because I only had one hour of rehab on Saturday and one hour on Sunday. During the regular week, Monday through Friday, I stayed completely focused on working hard and getting better during my therapy hours. On the weekends, however, after about a month of adjusting to my schedule, it was tough accepting that all my friends were having fun without me while I was motionless in the hospital with my family. I was a very social person, I had lots of friends, and I loved constantly being on the go, so the weekend downtime was challenging. My friends visited whenever they could, and having them around helped a ton, but sometimes other activities and the weather kept them away.
At first, when my friends came to visit, they were cautious around me. It was tough for them because they didn’t want to upset or offend me in any way. They wanted to be there for me, but they didn’t know how to absorb the reality of my situation. They didn’t know much about my injury or what took place in the hospital, so being around me was definitely something they had to get used to. They wanted to help; they just don’t know how. It was uncomfortable for most people at first, wondering about my condition and if I’d changed emotionally.
Being a prankster, I couldn’t help but play a sick joke on my friends one of the first times they came to visit. Not even three weeks into rehab, I was able to leave the hospital for four hours at a time and go over to the Marriott across the street. My friends came in two vehicles; one carful parked right away and came into the restaurant. They planned to stay and eat, and we began talking normally. For some reason, I thought it would be funny to cross my eyes and stick my tongue out when my other group of friends entered the restaurant.
Their chins dropped comically, and the look on their faces revealed their shock. As soon as I realized how upset they were, I stopped and told them I was kidding. As mean as it was, the prank ended up lowering the tension level for everyone and eased my friends’ discomfort. They realized my spirits were high, I could still joke around, and despite my injury, I was still the same goofy guy I was before the accident.
My Luther coaches, Mike Durnin and Benny Boyd, came to visit a lot. We went outside whenever possible to visit and read Bible verses. Their presence kept me connected to the team when it was hard not being with them. I had to take care of business at the hospital, and they had to get through their football season, but they always took time to see me. It helped a lot when many of my guests, both friends and strangers, took the time to tell me how my attitude helped them cope with the struggles in their own lives.
“As we continued to visit and did what would become customary, to share bible verses and discuss the meanings we found in them, it became increasingly clear to me how special this young man truly was, and that there was a purpose for his life that was much greater than anything he would be able to accomplish as an athlete in an athletic arena.”
~ Benny Boyd, Former Assistant Coach, Luther College
Most of my life, and most of the time going through rehab, I stayed positive. Obviously, I had weak moments when I felt vulnerable, scared, and uncertain about my future, but we never announced the hard times on CaringBridge because it was a very small part of what was happening and totally against my nature. I felt some responsibility not to share my weak moments because I didn’t want people to think I was being negative or pessimistic. I think everyone expected my situation to be really hard on me—and it was—but it was mostly at night when the negative thoughts crept in.
I dreaded the end of therapy and being done for the night because that was when my thoughts ran wild with uncertainty, especially as my body adjusted to the pace of rehab and I wasn’t exhausted all the time. Sometimes, I’d jiggle my arm or shoulder just to see and feel it move because I despised the claustrophobic feeling of being strapped down to the bed. I frantically tried to move anything I could in order to feel a small sense of freedom, but the effort left me with a racing heart and a million frustrating thoughts pinging through my head.
I wondered what would happen next, and I wanted to work as hard as possible to get better, but my emotions seemed so close to the surface. Sometimes I wanted to move a body part I’d been able to move during the day, but at night I was too fatigued and it wouldn’t budge. Sleep seemed impossible, so much so that I had to take sleeping medication to reduce the restlessness that kept me awake.
Talking about my thoughts and feeling with whoever stayed with me at night helped a lot, as did reading the positive comments from those following my journey on CaringBridge. I’d been trying to better myself by working hard my whole life, but this time, through CaringBridge, I had a platform. Knowing people found hope and inspiration from my story helped motivate me, especially during the emotional moments of my recovery when I felt down, but I’d have worked just as hard to recover with or without an audience. CaringBridge highlighted the goodness in people and helped ease my mind knowing my family and I were in so many people’s thoughts and prayers.
I prayed every night. I thanked God for my family, my friends, and the progress I was making. I asked God for a full recovery, to get stronger, and to walk again. When I was younger and during the early years of high school, I only prayed every once in a while, and most of the time my prayers referenced something specific.
During my senior basketball season, I went through a rough patch that shook my confidence as a player when I went from having one of the best streaks of games in my life to one of the worst. My coach gave me a sports Bible, and I found a verse that really stuck with me. Joshua 1:9 helped me believe in myself, and it told me that no matter what I did or what I went through, God was with me. I wrote the Bible verse on my basketball shoes in high school, and I continued to rely upon those same words to see me through each day in rehab. Throughout my recovery, my prayers were full of thanks and appreciation for my support system, the medical staff, the people helping me, and the feeling I regained every day.
After about a week, I was sick of the hospital food, and it didn’t help that I’d lost my appetite. I refused to eat the hospital food. Between the loss of appetite and my muscles atrophying, I began losing a lot of weight.
Finally, my family asked, “If you could eat anything you wanted, what would it be?”
“Steak and shrimp from Applebee’s,” I said, simply because I’d seen it on a commercial and it looked good. The next day I’d say, “Enchiladas,” for the same reason.
I lost thirty pounds within a few weeks because I never felt hungry and the smell of hospital food made me sick to my stomach. I knew it was important to eat, and when I got down to 151 pounds and I could tell my family was worried, I made a real effort to start eating.
By early November, I could tell my body was healing. My energy returned, and I was able to stay in my chair for longer bouts without feeling fatigued. The fewer transfers they had to make getting me in and out of bed meant I had more time to practice skills like driving and feeding myself.
I also began feeling as if my legs were in a cast, like having a leg inside my leg that couldn’t break free. I could feel my legs, but I couldn’t move them. My whole body felt that way; I could visualize and feel signals traveling to every part of me, but it was as if they’d hit a hard casing and couldn’t budge.
Because I was getting feeling back, but no movement, I asked people to touch my legs and feet so I could guess what leg or foot they were touching. The exercise helped me re-establish the communication between my brain and my body by forcing me to concentrate and figure out which limb or foot was being touched. It also helped me understand where my body was in space.
I also experienced leg spasms. My legs would start shaking or my knee would pull up uncontrollably. The nurse explained that the movement was a normal byproduct of the injury, but it freaked me out to see my leg move when I didn’t have any control over it. Everything in my lower body felt dull, as if my legs had fallen asleep and were waking up. I had a little bit of feeling whenever something touched my legs, like a little tingling sensation, but not enough to tell the size, shape, or texture of the object. I also couldn’t tell the temperature around me.
Calls and gifts from sports teams kept coming. Ryan Clark of the Pittsburg Steelers called and encouraged me not to give up hope, and he continued to reach out through calls and texts. Adrian Peterson of the Vikings sent an autographed football, and I received calls from Tim Tebow, Colt McCoy, and Drew Brees. I never expected to hear from people I didn’t know—famous or otherwise—who wanted to help just because they’d heard my story. A student from Luther who’d been hurt three years before me came to visit with the Luther pastor. I enjoyed talking to him about how I was feeling because he was a student, and we were almost the same age. He mentioned he got some leg movement back around the five-week mark.
Talking to people who’d been through my situation and could relate to what I was going through was huge, because even the doctors, nurses, and therapists didn’t really know what it felt like not to be able to move their bodies. Even though I loved hearing from people who’d suffered spinal cord injuries, learning about their home life, and asking questions about what I was experiencing, I definitely thought I was different. I was going to walk out of the hospital, and I wasn’t going to have to face their daily struggles. I never said that out loud, but in my head I was convinced my outcome would be better.
Former Penn State player Adam Taliaferro, who suffered a similar injury a decade prior, called during my first full week in rehab. I asked him a lot of questions about how long it took him to do certain things, how long he was in the hospital, how much movement he currently had, and if he was using a chair or walking on his own. I felt encouraged when he said he was able to walk, thanks to continued rehab and stretching. He was a successful lawyer, so that gave me hope for the future too. I think he said it took him six weeks to get movement back in his legs, and that gave me some peace of mind knowing there was still time to recover. While I’d come a long way in a few short weeks, regaining movement in my legs and walking was constantly in the back of my mind.
The five to six week range for leg movement seemed consistent with those I’d spoken to who’d suffered similar injuries and had similar prognoses, so that deadline loomed large in my head. I felt optimistic since I was getting feeling back in my lower body, but I worried that if I didn’t get movement by the five to six week point, I’d probably never walk again. Despite my worries, I never told anyone about my internal deadline, even though it seemed like a giant elephant in my hospital room.
One of the doctors told my mom and me that I was one of the hardest workers he’d ever seen come through rehab. I wasn’t shooting to be the most industrious worker, or working diligently for the acknowledgment or respect of others. I was simply hardwired to do my best and give it my all. I was happy with my efforts, but when he sat me down and told me I was the hardest worker he’d ever seen, I felt proud. That pride fed my belief that I wouldn’t need the chairs and ramps they kept saying I’d need when I left the hospital.
I set goals for myself to use the Xbox by Christmas and to walk out of the hospital, so every time I experienced something new or felt better, I was excited for that moment, but quickly moved on to the next task because the clock was ticking. But I couldn’t deny reality. I was making progress, I was getting better, but it wasn’t going at the rate I wanted in order to achieve my ultimate goals. While frustrating, facing the truth helped me refocus my goals and thoughts.
I still felt optimistic about everything, and I was still appreciative of my progress, but I had to change my mindset, and that was a real challenge. I clung tightly to my belief that I’d walk out of the hospital, but I also began setting my own internal goals for therapy knowing all I could control was how hard I worked, and not the outcome. Daily goals were much easier to set and achieve because it was really hard to predict where I would be in my recovery in a week or a month. I set a goal every day to do whatever I could to improve, and I never cut myself any slack because I’d achieved a goal. I had so much work to do.
“He knows he can’t give up. He makes a plan, he implements it, and he moves forward until he gets to the finally of one small goal, and then he moves to the next goal...”
~ Lisa Krieg, PT Euro-Team in Decorah
Now that I was physically strong enough to stay in my chair for longer amounts of time, and I wasn’t fatiguing as much, or sleeping as often as when I first arrived in rehab, I needed more time than the three hours allotted me to work each day. There were so many things to work on. As a college athlete, I had a list of exercises that helped me improve leg and arm strength. With a spinal cord injury, my whole body needed work. My fingers, my toes, my lung capacity—literally every single body part needed help, and we only had three hours per day to work on everything. After a meeting with the doctor and the rehab staff, they agreed to increase my rehab from three hours to four.
I also wanted to do more when I wasn’t in therapy, and thankfully my parents wanted me to do as much as possible too. They knew how much I wanted to get better and stronger, and they knew I’d want to spend some time outside of therapy working toward that goal. They were very involved with my therapy, and by doing so, they observed and talked to the therapists about what they could do to help. We were all on the same page and that made it feel as if we were one team focused solely on my recovery. With every day that passed, the clock was ticking, and Team Norton had a lot of work to do.