by Chris Norton
The nurses came into Chris’s room all the time to catheterize him, check on him, or turn him to make sure he was positioned so he didn’t get bedsores. Initially, Chris would get me up in the middle of the night to help him with little things, like scratching his head, or moving his pillow, but he soon realized he needed to let his dad sleep. He eventually started using the call button and asking the nurses for assistance. The longer he was there and the healthier he got, the nurses didn’t have to come and check on him as often.
Chris needed help with everything. He needed to be fed, he needed help brushing his teeth, washing his face, putting his contacts in, getting him setup on his computer, scratching his itches when he was uncomfortable, getting dressed, and getting undressed. The most challenging task was helping Chris with his contacts. I wore contacts, but putting them on someone else’s eyes was so much different and so much harder than doing it to myself.
Right away, the staff wanted to teach us how to take care of him, and I mistakenly thought they were being premature. I resisted, thinking they were trying to shorten their list of responsibilities. In reality, they were trying to teach us because we needed to know how when he was eventually released. There was also a disconnect in terms of personal care, mainly due to our insurance.
When a person was discharged from the hospital under normal insurance plans, a family member was expected to handle shower and bathroom care. The National Collegiate Athletic Association (NCAA) insurance that we were fortunate enough to have because Chris was playing a college sport at the time of his injury, paid up to a certain amount per year for nurses, so we didn’t have to perform some of the nursing functions they wanted to teach us. I kept trying to explain to the nurses that we had insurance, and that an eighteen-year-old didn’t want his mom or dad performing his bathroom care. We could do it, but it was more comfortable for him to have a nurse execute the task. It didn’t help that we were also in the denial stage and didn’t want to accept daily bathroom care as something Chris would have to deal with once he was released from the hospital.
I wore my denial like a badge of honor. From day one, they kept telling us we needed to put a ramp in our house. I didn’t want to hear about a ramp, and every day when the PTs brought it up, I gritted my teeth and ignored them. I wanted to scream every time somebody asked about a ramp, but they were simply doing their jobs. The professionals at Mayo had seen enough people go home unprepared because they couldn’t accept reality. I tried to turn my resentment around and be a positive influence in Chris’s life, but navigating the line between optimism and reality was like balancing on a tightrope.
Deb and I talked about how we needed to put on a strong, solid, positive face because Chris would look to us to see how we were responding. Were we down? Were we devastated? Were we discouraged? How did we respond to other people in front of him? We made a conscious effort to put aside whatever concerns and fears we had so that Chris never saw us upset. We didn’t try to keep anything from him, but we always focused on the positive.
From my experience as a coach, teacher, and supervisor, I knew that people tended to rise to the expectations placed upon them. I likened it to shooting a three-pointer in basketball. If a shooter expected the ball to go in the hoop, the likelihood of success increased. We believed that expecting Chris to recover, both mentally and physically, increased the likelihood of him recovering. It helped that Chris told the psychiatrist that his attitude on a scale from one to ten was a ten, meaning the most optimistic. To say the psychiatrist, and Deb and I were surprised by his answer would be an understatement. Chris credited his faith, family, and friends—a phrase that became our family’s mantra during rehab’s most difficult times.
The mental part of his recovery included surrounding him in an uplifting environment. His room was like a shrine. The girls basically took everything out of his bedroom at home and put it up in his rehab room. Plus, professional sports teams and colleges sent signed footballs, hats, and autographed pictures. Visitors and staff loved to look at his collection. His room played a big role in his positive outlook.
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“From the moment I walked into room 68 on the inpatient rehab unit, I immediately felt the embrace from not only the Norton family, but also the community. The room was packed with letters, cards, pictures, and signed momentous from college and professional athletes. With this embrace brought nerves about the expectations of my role as a provider.”
~ Megan Gill, PT, DPT, Clinical Lead Physical Therapist for Spinal Cord Injury, Mayo Clinic
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One of the first things the PTs did in rehab was put Chris in the power chair so he could begin to tolerate sitting for longer than twenty minutes at a time. We felt helpless watching Chris struggle with trusting the rehab staff and the lift system they used to get him into the chair. I could tell he struggled with accepting his condition almost as much as I did. He’d gone from being an athlete in his prime to fighting to sit upright in a wheelchair. The disappointment, pain, and frustration were evident on his face as he fought the sudden and dramatic drops in his blood pressure that left him nauseated and dizzy in addition to the debilitating pain in his neck. The first outing in the wheelchair left him exhausted and all of us fighting not to show our concern about the steepness of the battle we faced.
Because Chris was naturally optimistic, his attitude rarely slipped, but we tried our best to keep his baseline up by surrounding him with positive and uplifting messages. I read him a lot of different passages at night before he went to bed—cards that people sent, CaringBridge posts, Bible verses—and I knew in advance what I was going to read in order to keep him uplifted. Whenever I read the posts from CaringBridge, Chris literally got tears in his eyes knowing so many people were praying for him. Realizing that thousands of people were pulling for him gave him a little extra oomph in everything he did. He felt like he was running a marathon, and all those people were lined up clapping for him as he ran along the route.
It made staying positive for the folks reading the CaringBridge posts that much more important. We had conversations about how he could talk the talk, but he also needed to walk the walk. We discussed overcoming adversity, meeting challenges, working hard, and rising above his circumstances, but through CaringBridge, he had a real opportunity to demonstrate those traits on a larger scale than the average person. Neither of us took that responsibility lightly.
Despite his positive attitude and all my hard work, deep down I worried. I kept thinking about all of the things he wouldn’t get to experience, like the outdoors and athletics—all the things he was so passionate about before his injury. Would he ever be able to go back to school? Would he have a job? Where would he live? Would somebody look at him and see the person and not the wheelchair? Would he get married and have kids? My single biggest fear was that Chris would at some point feel disappointed with his life. I never wanted him to ask, “Why me? Why did I get dealt this hand? Why does my life suck?”
I worried that people—friends and potential girlfriends—would judge him based on the wheelchair and on the amount of work he’d require and the inconvenience of taking care of him. When I shared this fear with others, friends reminded me that if Deb were in a car accident, I’d be there for her. But that wasn’t an adequate comparison. I already loved Deb; we’d been married for almost thirty years. If I didn’t already know and love her, dealing with the kind of limitations Chris faced would be a tough hill to climb. But like everything else with his injury, there was little I could do but pray and give my worries to God.
I tried my best not to read or research spinal cord injuries because I couldn’t handle the truth. With only a fleeting search, I discovered that people with spinal cord injuries faced a myriad of related health issues. Part of the reason I didn’t want to get too deep into spinal cord research was because there was so much misinformation on the Internet. People were constantly telling me about some article they’d read about a procedure in India or stem cell trials i
n Russia or China. I could have driven myself insane chasing the Holy Grail of a miracle cure, and I couldn’t afford to get distracted.
After Deb and the girls left, my typical day started at seven in the morning. I’d go down to the lobby and get a cup of coffee, look out the windows, read uplifting Christian books friends had sent, and basically use that hour to get my game face on for the day.
At eight, the nurses dressed Chris and got him ready, and then I’d spend the whole day with him in rehab. Getting Chris equipped for the day was like preparing for “battle.” They wrapped his legs in elastic bandages from his toes clear up to his groin, and then they suited him in an elastic chest compression device, elbow pads, and wrist braces.
I went to every rehab session, and so did Deb when she was in Rochester. We observed, stepped in to help if they needed an extra set of hands, and talked to the therapists to get their input about what things Chris should be doing on his own. Our days in rehab meant being there with him all the time. If it was close to lunchtime, I might run across the street and grab him something to eat and bring it back, but otherwise I was right by his side. Rehab continued all afternoon. Afterwards, he usually liked to take a little nap before we did his exercises.
For a college-aged kid, eleven at night was still early. When Chris was in rehab, he was working, and he was focused. That was what he normally did at college—lift weights, work out, and go to class. But if we finished rehab at four, we had seven hours to fill. That block of time was the toughest part of the day—the biggest challenge—because that was when it hit home that Chris wasn’t in college anymore.
I had to figure out a plan for those seven hours, and sometimes it was daunting. Chris didn’t like me asking him what he wanted to do, so it was better if I came up with a plan, laid it out, and sold it. We played a lot of cards. We pulled in this kid from the room next door—or my mom when she was up—and usually played rummy or euchre.
Chris rarely got upset about his injury, but when he did, it ripped my heart out. I didn’t know if I could deal with him feeling emotionally upset all the time now that he and I would mostly be on our own. We talked to some other kids who were there in rehab, who went through really dark times where they didn’t want to leave their room because they were so depressed. They just wanted to give up. If dealing with his injury sent Chris spiraling into a tailspin, my single biggest fear was that I wouldn’t be strong enough to handle it alone.
For Chris, hearing from other young men and women in rehab actually helped him appreciate how fortunate he was that we were able to stay with him. It broke my heart to see the eighteen, nineteen, and twenty-year-olds who didn’t have anyone with them. I think that made Chris appreciate the support system he had and helped to stave off depression.
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“While going to Rochester was never about me, those trips helped me just as much as Chris. They helped me see purpose in my life, grow in my faith, and I would leave inspired knowing that Chris would walk again.”
~ Joe Gilson, Lifelong friend
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I was more proud of Chris during those first few weeks after his injury than I’d ever been of him in his life. I’d watched him score a lot of points in sports, do well in school, get different awards, make all-conference, and achieve many accomplishments, but my pride had nothing to do with his accomplishments and everything to do with his character. His determination, attitude, and effort were laser focused on doing whatever he could to get better. Especially in the first couple of weeks, friends and acquaintances said they’d come by to lift Chris’s spirits, but they left his room uplifted.
We had a long road ahead, and staying upbeat was our highest priority. We could handle what we had to deal with physically, but I never wanted him to feel alone. Despite the sacrifices and the hardship on our family, staying with Chris while keeping our heads above water had become the focus of our lives.
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For the Spirit God gave us does not make us timid, but gives us power, love and self-discipline.
~2 Timothy 1:7 NIV
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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 ke
ep 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.
