Cast your cares on the LORD and he will sustain you; he will never let the righteous be shaken.
~Psalm 55:22 NIV
EVENTUALLY, I reached a point in my therapy at Mayo where I thought, All right, I feel satisfied with what I’ve done here. I feel comfortable transitioning outside of their care. I’m ready now.
Pulling out of Rochester for the last time was kind of sad. I was comfortable receiving therapy there, and I was nervous about transitioning to a new place. I was ready to move on and it was time to go home, but as I mentioned, my life felt like it was divided into two stages, pre- and post injury. All I’d known post injury was the Mayo Clinic in Rochester, so leaving to go home was like starting a whole new adventure. We thought we had everything lined up ahead of time, but we couldn’t predict every situation.
Throughout my injury and recovery, pride was a big stumbling block. I had no choice but to let go of my old life where I was a very independent person, made my own decisions, and did my own thing, and accept that I needed help with almost everything. Having to ask people for help was really hard because I didn’t want to be a burden. I also had to swallow my pride after thinking I was going to walk out of the hospital, no matter what everyone tried to tell me.
I left Mayo with a power-assist chair, but pride tried to stop me from ordering the joystick controlled power chair for home. Megan and I went round and round about her ordering the power chair because I was adamant I’d only need the power-assist chair. She said we should order a power chair “just in case,” because it was her job to make sure I was prepared when I left Mayo. Even if I didn’t use it, she said it was smart to have one on hand.
She guilted me by saying she wouldn’t have been doing her job if she sent me home without something I might need, and after all the trust we’d built between us, I couldn’t say no. I understood her argument, but at the time I felt she didn’t think I would walk again. Megan also reminded me of the importance of timing. If I didn’t order the chair when I left Mayo and later discovered I needed it, I’d have trouble with insurance covering the cost.
Before I came home, and before the end-of-spring semester, I made a trip to Luther to register for classes and tour where I’d live in the fall. We met with Luther’s disability coordinator, the academic support office, the residence center, and my academic advisor to devise a plan so I’d be ready for class. It was cool to see all my friends again, and I was excited to see where I’d live on campus with my future roommates. The student who lived in my new room was the same boy who came to visit me a couple of times with the pastor from Luther. He was a great resource for campus logistics.
On that same trip, I attended Luther’s end of spring football meeting. It felt great to be included, but as they talked about summer workouts and their expectations for fall, I let my guard down and got emotional. I loved working out in the summer and bettering myself as an athlete. The meeting made me think about what the future would have been and how I’d miss out on being a starter the next season. I was living proof that wishing didn’t change a thing, so I tucked the hurt aside and tried to focus on my goals for the summer.
The best thing about being home was just being back in a familiar place, eating home-cooked meals, going to watch my sister’s softball games, and being around my friends. It provided a sense of normalcy, and I’d really missed our pets. The hardest thing about being home was working with new people and getting used to living life in a wheelchair. Our older home wasn’t wheelchair accessible, and it was hard to get around the small rooms when I’d grown accustomed to maneuvering around the spacious hospital. Being stuck in our family room because I couldn’t get through to the kitchen felt very isolating. It was weird not being able to go up to my room, but we made a new bedroom for me in the dining room and we made it work.
We had to find a new nursing agency, and the nurse had to figure out my routine under my direction. As we learned in our move to the Ronald McDonald House, the adjustment period was challenging. I was at the mercy of someone else’s schedule. If the nurse didn’t want to work on the weekends, for example, but I still needed care, accommodating my needs took time to coordinate.
I got so used to asking my family for help that I took them for granted and often forgot to say please and thank you. My parents and siblings wanted to help and they knew the severity of my situation, so in the beginning, they didn’t give me grief for not asking nicely. But now at home, when I got too comfortable with them and forgot to use manners, they brought it to my attention.
They also began to recognize that I could do more things on my own if I tried. So, when I asked for help, they encouraged me to attempt it first. That was good for me because I discovered that I didn’t always need their help. It was another learning period, because as I got stronger, I was able to do things I hadn’t been able to do before. I was living the cliché, “You never know until you try.”
While my friends were off for summer break, my parents and sister still had to work. I needed them to help me get ready for bed and put me to bed, but they wanted to end their night by ten. If my friends called and invited me to an eleven o’clock movie, even though I wanted to go, my parents didn’t want to stay up until I got home. They needed their rest, but living by their schedule kept me isolated from my friends. If I did go out, they had to wake up when I got home and get me ready for bed, but that was exhausting for them. I hadn’t thought about our nightlife patterns and how that would affect the family and me when I came home.
We’d taught my friends how to put me into bed and get me ready when I was coming home on the weekends, but I still needed someone to sleep by me or sleep in the room every night because I needed help with my legs and arms. I’d get muscle spasms at night where my legs would randomly kick up and swing over, and my arms would push against my face. Trying to sleep when my leg was back and to the side, and with my arms right on my face was awkward, uncomfortable, and claustrophobic. I couldn’t straighten my arms and legs without help. Even if I went to bed at ten with my parents, they didn’t get much sleep because I still needed help. Some nights, I woke them every hour, which was tough no matter what time they went to bed. I really struggled sleeping, and it was a job in itself just to care for me at night.
Alex volunteered to have me as her summer job, take me to therapy, be with me during therapy, and do anything else I needed. We were with each other for long stretches of time and we got sick of each other and got on each other’s nerves. If I didn’t want to be on other people’s schedules, I had to find someone to stay over who could go to bed when I wanted to go to bed.
The biggest blessing was having my cousin Nolan move in with me and become my personal care assistant for the summer. Nolan and I grew up together, were the same age, and had a really good relationship, so when his family came up to visit and he said he didn’t have a job, he seemed like the perfect solution. At the time, we were trying to find someone to take part of the load off my sister and my parents. I was trying to use some of my friends who weren’t working, but then I suggested Nolan. My parents thought it was a great idea, so we talked to him and his family, and they agreed. Nolan was a lifesaver and a great friend to have around. We were already close, but when he relocated from Iowa City to put up with me for a whole summer, we became like brothers.
We had an accessible van with a ramp at that time so Nolan could drive me where I wanted to go. When my friends wanted to go to a movie or out to eat, they didn’t have to drive to my house, pick up my van, and go to the theater. Nolan living with me eliminated that time-consuming step, and he and I just met my friends at the restaurant or theater. It was great having him along because I loved hanging out with him and so did my friends.
Asking for help from my friends was definitely uncomfortable because I didn’t want to be a burden. I had buddies who understood, and I think they knew I didn’t want to ask. I’m not certain, but I think my family may have communicated with them about helping, because my friends were so good about jumping up to help and asking if I needed anything. The more I asked, the easier it got, and I could tell when someone didn’t mind. They stopped what they were doing and did whatever I needed with a smile on their face.
My goal for that summer was to increase my independence, walk, and regain as much function and control as possible. During that time, I wore wrist cuffs from my forearm to my hand to prevent my wrists from dropping. I used the small slot in the cuff to slide silverware inside so I could eat independently, and I wanted to increase my hand strength so I could grip silverware on my own. I also worked to increase my arm strength to better use the power-assist chair and my leg and trunk strength so I could stand longer. I was basically trying to improve everything and get stronger overall.
I came home with a loaner chair to use until the custom chair I ordered was delivered. I tended to slouch, and Megan constantly reminded me to sit upright because it would help my core strength and comfort if I used correct posture. Throughout the day, my butt slowly slipped forward to the point where I’d eventually have to push myself back several times a day by leaning all the way over my legs and pushing on my feet to get myself slipped back into place.
The angle of the loaner chair was unfamiliar, so on my first day at rehab in Des Moines when I went forward to lean and push myself back, the chair was like a slide and I slipped out. I’d spent seven months at Mayo and never fell out of my chair, but on my first day in a new place I hit the ground. They got me up, I wasn’t hurt, and I reminded myself to be patient because we were in a transition period.
The therapists were constantly telling me to keep moving, shift my weight around, and lean forward because staying seated in the same position for a long time put a lot of pressure on the tailbone and could cause a sore. Within a few days of falling out of my chair at rehab, at the Iowa state track meet with my friend Logan watching his girlfriend run, I leaned forward to adjust my position in the chair and felt myself slowly slipping out headfirst. Oh, no! The only thing between a six-foot drop and me was a railing. I tried yelling to get Logan’s attention, but my voice was too soft to be heard over the crowd at Drake Stadium. My face smacked the bar of the rail, stopping my momentum and keeping me from falling off the bleachers.
I called for help. Thankfully, Logan and a couple of strangers grabbed me and hoisted me back into the chair. Logan’s faced looked as if he’d seen a ghost, while my face probably looked as if I’d been in a fight. I learned the hard way to be extra careful whenever I leaned forward, but mostly I couldn’t wait to get rid of the loaner chair.
My therapy hours decreased to ten hours per week, and we had to fight with the insurance company to get more. I was desperate to see improvement, and thankfully we were able to return to twenty hours a week. Even with the increased hours, the transition from Mayo was hard. The dark, cellar-like atmosphere of my PT in Des Moines was so different from Mayo’s PT room with lots of windows and natural light. Des Moines also didn’t have a gym tech like Amy (“Big Cat”) to brighten the room with her energy.
The first couple of weeks, I wasn’t doing as well as I thought I should, but I tried to be patient. Unfortunately, Des Moines didn’t have equipment that was assistive enough for me to work on standing and walking. I knew from my research that the more I replicated normal gate walking, the more likely it was that the spinal cord would reprogram itself and help the nerves reconnect. We tried countless ways to replicate standing and stimulate walking, but Des Moines just didn’t have a good setup, and my progress came to a screeching halt. Profoundly discouraged, I was a mess—on edge and more frustrated than I’d been throughout my entire time in rehab. My last day at Mayo had been the best therapy I’d ever had, and I was pumped about going home, only to backslide.
I was so frustrated, that my parents arranged for Alex and Nolan to do drive me to Mayo three days a week, stay in a hotel for a couple of nights, and then drive back. I was relieved to go back to Mayo and work with the therapists and Big Cat again. I was once again able to work on balance, bear weight on my feet, and perform the walking motion. After only two weeks of back and forth, I was back to where I wanted to be and making progress.
I used the RT300 therapeutic bike every day while at Mayo to help coordinate my movements, keep my muscles from atrophying, and help stimulate my arms and legs. We went through the NCAA insurance to order my own RT300, but it took a month to arrive and there wasn’t another bike available near Des Moines at that time. Before we decided to spend three days a week at Mayo, we contemplated driving two hours to use the bike because I felt restless, I wanted more therapy, and things weren’t going well in Des Moines.
In addition to rehab, we spent the summer at home making plans for my return to Luther. As the end of summer approached, my parents wanted me to wait one more semester before returning to college. Sending me off to college the first time was hard enough, but by the end of my senior year of high school, I was barely around due to my jam-packed schedule. The second time was much more difficult because they knew how much help I still needed. They were a part of my everyday life, and I was very dependent on them.
Alex had the most influence on their decision to let me go. Not only was she going with me, but as a recent graduate, she convinced them I needed to have the full college experience. She knew it would be good for me to get away and that I’d be fine once we established a routine. It also helped that my parents knew my Luther friends were responsible. They’d been around enough both at Mayo and at home in the summer that they understood my needs, and my parents trusted them.
My parents weren’t the only ones with doubts. I needed lots of help, and it was reassuring that Alex wanted to live nearby. I’d only spent ten weeks at school my freshman year before the accident, and fortunately I’d developed really meaningful relationships with my friends in a very short time. I needed help with a lot of personal matters, so being comfortable with my friends and roommates was important.
“After months of intensive rehab and physical therapy at the Mayo Clinic, Chris was able to return the following year as a full time student. When he was in the process of finalizing the roommates who would make up the twelve-person handicap accessible dorm in Farwell Hall, he extended to me the last spot in the small single room. I took him up on his offer, not knowing that I was entering a period in my life where I would develop some of the most important friendships of my life.”
~ Rich Holton, Luther classmate and friend
Luther only had one dorm on campus that was accessible, and my friends agreed to live with me in that dorm. The school also allowed four guys to live in the cluster so one could stay with me overnight if I needed help with straightening my legs, bending my arms, adjusting the covers, or whatever came up. I had a lot of anxiety wondering what would happen if my friends weren’t able to stay with me, help me into bed, take me to class, and do all the things my family had been doing since my injury.
With my living arrangements and class schedule already in place, I was able to move in two weeks before classes when the rest of the football team arrived. It was good to get there early, get adjusted, and have both Nolan and Alex to help with the transition. We used that time to prepare for life on my own in the dorm and to teach my friends how to help me before Nolan had to leave and Alex moved into her own place.
When I transitioned to school, I didn’t feel comfortable asking people I didn’t know well to help because I felt like a burden. If someone sighed and asked, “What do you need now?” their half-sarcastic, half-true reaction rubbed me the wrong way.
Early on, when I felt a sense of grief, I wanted to say, “You know what? I can’t do this. I’m sorry I can’t do it on my own. I wish I could.”
Over the course of my injury, as I became more comfortable asking for help, I slowly stopped saying please and thank you again. While grateful for help, saying please and thank you seemed redundant because everyone—including me—knew I needed help. The assistance I needed to function day in and day out with tasks like putting on a coat or transferring me to bed didn’t feel like favors because it was just my life. I always asked nicely, but I didn’t show as much appreciation as I should have. I took for granted that my family and friends would help because I was used to being cared for and helped. Fortunately, during my first year back at college, I learned that showing appreciation helped ease my guilt, and that family, friends, and acquaintances didn’t mind helping when I was grateful.
My friends made my time at college possible because they took the time to drive me places, push me places, help me get food, or brush my teeth, and assist with a thousand other things. They went out of their way to make me feel comfortable by sacrificing some of their freedom in order to make sure I was included. My friends were the reason I was able to have a regular college experience, and I didn’t have the words to express the depth of my gratitude.
Considering my experience in Des Moines, I was also nervous about the therapy options in the small town of Decorah. Mayo was closer—an hour and fifteen minutes away as opposed to three hours from home—so we made arrangements to travel to Mayo twice a week. I had class on Monday, Wednesday, and Friday, and I spent Tuesday and Thursday at Mayo. Most of my therapy took place in Decorah, which meant finding the right facility.
After a tough summer back home and falling to the ground during the first training session there, I had serious doubts about locating adequate therapy in Decorah. I prepared for the worst when I visited Euro-Team and PT Lisa Krieg. My biggest concern about going back to college was my recovery, so therapy during school would essentially make or break my college experience. When Lisa said she wanted to stand me up right away, I thought she was kidding. PTs err on the side of caution, and it took weeks before someone was comfortable enough to stand me up by themselves at Mayo. I knew I could do it, but I was taken aback by her fearlessness. She was short but strong and pulled me right up to standing without a problem. I grinned inside and out because I knew God had planted me in the right place to maximize my recovery.
“I will always remember when Chris and his family came to Euro-Team that first day, willing to trust a PT in a small, rural clinic to keep him going toward his bigger picture of moving, walking, and living!”
~ Lisa Krieg, PT Euro-Team in Decorah
Lisa reminded me of Megan in that she was very proactive, she wanted our time together to be intense, she wanted to push me, she wanted to try new things, and she was willing to do whatever it took to reach my goals. Since both Megan and Lisa were my therapists, they communicated about what was working well for team Norton.
Having my own therapeutic bike at the Luther training area was a huge benefit because I used it all the time to maintain my muscles and get stronger. I worked out on the bike as often as possible for extra therapy. One of my friends would come along and set me up, and the head trainer always made himself available because he also knew how to set me up on the machine.
I was happy with my role on the football team as a source of motivation. I didn’t want or need special attention, I just wanted to be treated like a player. Coach Durnin was great about letting me choose whatever role I wanted. He said I could be a coach and come to the coaching meetings, or be on the sidelines as a player, or do both. But it turned out that I had a very small role with the team because I was busy with school, and my therapy was always during practice.
Coach Durnin told me I’d be the honorary captain at Luther’s first home game. I was thrilled, and I knew right away I wanted to stand on the field with the help of the other captains. I was strong enough that the guys could position themselves on each side of me and help me stand. I was nervous about the logistics, but it was a good way to celebrate how far I’d come with my family, friends, and some of the Mayo staff who were a big part of my recovery.
I was really worried about physically standing because I was so inconsistent in my attempts at therapy. On a bad day, or even just an okay day, I might not be able to stand. I prayed to God, practiced, and communicated with the captains who’d push me out to the center of the field and stand me up so they’d be prepared for anything. We rehearsed by simulating the whole process a couple times with Alex there telling them what to look for to make sure I didn’t get lightheaded. While the captains were friends, they were also juniors and seniors who were unfamiliar with my routine. Thankfully, it went off without a hitch, and it was great to have so many friends—old and new—in attendance.
Around my return to Luther, I realized how lucky we were to have the NCAA insurance. My parents appreciated it once they understood that along with the medical bills, the expense of commuting back and forth between Rochester and Des Moines was eligible for reimbursement from the NCAA. Until that time, they were flying through their resources, paying for everything on their own and with the help of friends. NCAA insurance lifted some of the financial pressure, and I could tell it helped ease their tension.
Once we realized the full extent of the policy’s coverage, we began paying people by the hour for assistance. At first, the insurance company said a family member couldn’t claim the assistance funds, so when my sister was taking me to therapy in the summer as part of her job, my parents were funding her the best they could. Then they decided to fight the insurance company. We believed Alex should get paid because she was sacrificing her nursing career to help me. The insurance company relented, and she got paid for helping me every day with my therapy.
The same applied to Nolan when his job was to take care of me for the summer—and my friends at college when they’d get me to bed, stay with me overnight, and help me travel. Being able to pay my friends took the pressure and attention off of the time it took for them to help. Knowing my friends were getting paid and not just doing favors for me relieved some of my stress. Sometimes they didn’t feel good about accepting money because they were my friends, and while I understood, I wanted them to get paid so they’d never feel put out. Occasionally, I wanted them to assist with extra work outside my therapy and paying them eased my guilt at asking.
There was a huge learning curve doing my schoolwork on an iPad, and it was really hard to figure out how to write papers and type with my arms. Sometimes I could only use my left arm to type because my right arm was still really weak. I had to take frequent breaks from schoolwork due to muscle fatigue. I tried to use my right arm when my left needed a break, and over time both arms got much stronger and the breaks were less frequent. No matter what arm I used, I was terribly slow because I had to type one letter at a time with the side of my knuckle. Sometimes I used the voice recognition software, but it was far from perfect. I tried dictating papers to my sister, but I’d lose my train of thought. Writing papers, getting my schoolwork done, and figuring out programs that allowed me to turn in my work and complete worksheets were some of my biggest challenges.
Despite my busy schedule, I didn’t want to give up any therapy time just because I was in school. I was still doing six hours of therapy a day on top of school and the two-and-a-half hour round-trip commute to Rochester. At first, my life was nothing more than school and therapy, sixteen hours a day. After the first couple of weeks on that schedule I got sick because I was completely worn down. I eventually acclimated to the intense schedule, and it turned into a strict routine I refused to break.
Alex often said she didn’t know how I fit everything in, being a full-time student, a full-time therapy patient, and making time for friends, but it wasn’t a choice. I didn’t complain even though it was a ton of work because I did what I had to do to get by. On the weekends, I always made time for fun, as it was the only way I could make it through the week, and that was enough to keep me sane.
By late October, I needed Alex less and less. Going back to school was definitely a transition that turned into a progression. For example, in the beginning I had Alex push me to my classes and meet me at different places on campus. After establishing a routine, I realized I had friends whose paths I crossed along my route who were more than happy to help me get from place to place, so I needed her less frequently. Once back at school, I made even more friends, and my pool of helpers was larger too. Within a few months, I was living on my own terms, pursuing a college degree, working hard to physically improve, and enjoying every bit of fun along the way.