by Chris Norton
~Terry Norton, CaringBridge, November 17, 2010
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MY LIFE began to feel like the movie Groundhog Day. I’d get up, have coffee downstairs, read my book, go up to get Chris ready, go to therapy, get lunch, go back to therapy, and plan the evening. Our routine became a real pattern that played out over and over again. Thursday couldn’t come fast enough for Chris and me to have Deb and the girls around to break up the monotony.
The days went by fast for me, and it helped that the PTs (Megan and Lori), and the gym tech (Amy), were great people. Chris called Amy, “Big Cat,” because she made the whole PT room so lively, he wanted to go to the gym. They did an excellent job of taking a difficult situation and making rehab fun. The therapists were also excellent communicators. They explained what they were doing and why, how everything tied together, and what kind of reaction they expected from certain activities and exercises. They told us we couldn’t predict where he’d be in a week, a month, a year, or even five years, and they educated us on the depth and breadth of spinal cord injuries. We learned a ton, and it was interesting too.
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“I can honestly say, the experience and privilege of working with Chris and the ‘Norton Nation’ has molded me into the therapist I am today. After meeting Chris, I feel a better understanding of what my clients/patients desire and strive for.”
~ Megan Gill, PT, DPT, Clinical Lead Physical Therapist for Spinal Cord Injury, Mayo Clinic
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By early to mid-November, while working on getting and staying upright, Chris often became lightheaded. PT had a machine called a standing frame. The therapists wheeled him up in the chair, put straps on his legs and a harness around his butt, and then basically winched him into a standing position. They also had a table that operated in a similar fashion that they used to position him at certain angles.
Chris got frustrated whenever his blood pressure dropped and he became lightheaded, sometimes to the point of losing consciousness, but it was completely out of his control. We were both discouraged by the setbacks because he desperately wanted to be upright. Medication helped, but too much made him drowsy. Everything had a downside, and the only thing that worked was to keep trying.
As the one who set him up on Skype and responded to his texts, I knew just how important Chris’s friendships were. Deb and I were concerned that over time, everyone would go back to their normal lives and forget about Chris. Thankfully, he usually had visitors. The toughest weekends were when his friends couldn’t come for one reason or another, whether the football team had an away game or there was bad weather. A college kid didn’t mind hanging out with his mom and dad during the day, but he needed his own social time.
We experienced one of our most enjoyable weekends when two visiting college girls planned to go home after their quick trip to see Chris. A blizzard hit, so they bought some essentials at the gas station, and we took them to a hotel room across the street at the Courtyard Marriott. Deb assured their parents they wouldn’t leave and try to drive home in the blizzard. We made the most of their misfortune, and they spent the whole weekend playing games with us and hanging out.
It was a huge deal for Chris whenever people were around and he’d close his eyes and guess which leg they were touching. The further along he got in rehab, the more accurate he became. At times I wondered if he really could tell which leg was being touched. Personally, I didn’t like him performing this drill because if he got it wrong, I didn’t want him to get discouraged. Thank heavens he got it right most of the time.
On weekend nights when Alex and Katie stayed with Chris, Deb and I might have dinner together, read a book together, or go down and sit in the bar area at the hotel and just talk. We really didn’t go out, but it was nice to spend time together, just the two of us, and be able to visit and catch up.
Both of our roles had challenges. When Chris and I were alone, there was no way to escape the severity of what we were dealing with. On the flip side, I didn’t have to pick up the mail, pay the bills, or take out the dog and the garbage. At home, Deb didn’t have to face the reality of what we encountered every day, but she definitely had more chores to do.
During the seven months while Chris was in the hospital, Deb and I only spent one night together in our home. We were either in opposite places or together in Rochester. Our one night at home happened when friends put together a big fundraiser for Chris. It was important to attend together, and they wanted me to speak, so the girls stayed in Rochester with Chris.
Deb stayed with Chris while I made a quick trip home before Thanksgiving, and I realized it was harder to be away than it was to be with him every day. When I was with him, I got to witness the strength of his faith, as well as the miracles God granted as Chris continued to heal. At home, I started to look past one day at a time and get discouraged.
We were both busy, but Deb and I handled the time apart by texting and talking daily. We didn’t like being apart because we’d never been separated that much, but we both learned that we could handle more than we thought we could. If I’d known I was going to be away from home for months at a time, I’d have said it was impossible. When it was thrust upon us, we didn’t have time to think, so we just did what was necessary.
When everybody went home on a typical Sunday afternoon, especially on a weekend when a big group of Chris’s friends were there, I watched him closely. I’d try to do something fun, or we’d watch a movie, because I anticipated his spirits plummeting. Mine did.
The two or three times Chris got upset were the most trying for me. We could deal with physical challenges, but emotional struggles were so painful. I could tell he was having a rough day if he got a little quiet or just stared off into space and wouldn’t make much eye contact. The rounds, in particular, were really hard on Chris.
Once after rounds, the doctor kept going on and on about how Chris would always be in a wheelchair; therefore, he’d need a ramp at home. Chris asked him to check his toe because he thought he could feel it. The doctor brushed it off as a “phantom feeling.” Afterwards, it hit Chris so hard, he had tears in his eyes.
I’d always been able to hide my emotions from him, but when I saw him upset, I couldn’t control it and I choked up too. “Don’t ever let anyone define you,” I said. “Don’t ever let anybody else tell you what you can or can’t do.”
“I never will,” he said.
That seemed to calm him down, so I excused myself and went into the bathroom to pray for strength so I could hold it together. Normally, I could anticipate the setbacks and head them off, but we couldn’t avoid the rounds, and I certainly couldn’t control what was said. I tried to go numb and not really listen, but when I saw him upset after they left, it was just like a punch to the stomach. I couldn’t hide it from him, and I instantly started crying.
It led to a good moment for us, but getting there was torturous. I credit both my years of coaching and my reliance on God for help in getting through the difficult times. On several occasions, I felt the Holy Spirit’s presence lifting me up, because I didn’t know where I came up with the words to say, or how I came up with them so quickly.
But it wasn’t hard to stay positive because Chris rarely got down. He figured out quickly that he had it better than a lot of people, and he had it worse than other people. He didn’t go down the road of comparing his situation to anyone else. If I started thinking about what his life was going to be like a year out, or wonder how he was going to go back to college, I’d quickly avert my mind. I’d turn to Scripture and pull out the verses that were really helpful, or I’d lean on close friends, my brother, or my uncle to lift me up. Sometimes, when it was nice outside, I’d go for a walk or get coffee across the street.
On Thanksgiving Day, a few days after the doctor upset Chris, to our great relief and astonishment, Chris moved his big toe. He couldn’t wipe the smile from his face or hide the pride he felt at proving the doctor wrong. Deb and I were ecstatic. Watching him move his to
e was in-your-face progress, proof positive that we were heading in the right direction and his body was healing. It might have been painstakingly slow improvement compared to what we wanted, but it gave us all hope.
We believed he had between six to nine months to regain anything he could. Moving his toe meant more recovery was possible. Within a day of moving his toe, Chris demonstrated firing in his glutes, quads, hamstrings, and calves, and he moved toes on both feet.
Because of his progress and positive attitude, Chris never focused on things he wouldn’t be able to do, and I gave him so much credit for that. For him, it was just a matter of refocusing his mind on what he could do, but with modifications. Instead of asking if he’d ever be able to walk again, he quickly became focused on what he needed to do to be able to walk.
One of his biggest fears was not being able to go back to college and reconnect with his friends. Chris didn’t want to be isolated or cut off from a normal social life experienced by young college students, but it wasn’t something he talked about because we purposely avoided anything negative. Deb and I made a plan of what we needed to do in order to get him back in school, and we asked ourselves what support systems needed to be in place. We bounced our ideas off of the therapists at Mayo who had experience with transitioning patients to college environments.
Knowing Chris’s goals helped them tailor his therapy. For example, a lot of the doors at Luther had keycard access, so Chris had a school ID card that snapped right below his wheelchair seat. The therapists put a metal ring on the ID card so he could hook his thumb through it and practice pulling it out. They also put a water bottle where he could hook it with his thumb. They were great at looking at the chair’s setup and the school’s accessibility, and then practicing whatever he would need on a day-to-day basis.
Making practical decisions for his return to college didn’t squelch my hope that he’d be able to walk, as I figured once he was able to move his leg, he was well on his way. What I didn’t understand was that even though he looked strong, he didn’t have the body strength necessary to support himself. Also, his sensation wasn’t nearly as good in his legs as it was higher up on his body. The learning curve with spinal cord injuries was huge, and my inclination was to expect the most optimistic outcome. I had the hardest time grasping that with spinal cord injuries, sensation, movement, and strength weren’t necessarily connected with the central nervous system.
I learned the most by watching Chris in action. Whenever he was in rehab with the occupational, physical, and recreation therapists, I observed and also assisted if needed. I didn’t miss a session, and I learned a lot about the process. The PT had aggressive plans for him to walk using the Lokomat treadmill three days a week, and on other days, he worked on the bike. In OT, he continued to work with the arm bike.
Chris was up for the challenge, and within only a few days, they were able to lower the guidance on the Lokomat and increase the weight bearing on his body. By mid-December, he was able to stay upright in the standing machine for forty-five minutes and work on flexing different leg muscles and on upper body alignment. When he first started, he could barely manage forty-five seconds before his eyes would start to roll back and he had to be lowered down.
Watching my son relearn the most basic functions every day in rehab was really hard at times. I had to battle my feelings of dismay by celebrating his accomplishments and realizing how far he’d come. We went from ground zero—only seeing him in a prone position—to sitting upright, either in a wheelchair or sitting up in bed. We felt such a sense of relief just seeing him upright in bed. The first time we took him in the car and he was sitting up, we looked like just another father and son going to a ballgame. Instead of feeling bad about it, it felt really good. He was coming back and making progress.
Every new movement was a positive sign. Moving his arm after surgery, for example, led to him being able to feed himself, brush his teeth, wash his face, and scratch his head. Those were probably the most instrumental leaps that took place since he’d been hurt. Those movements also led to him using his computer, an iPad, and a cell phone. Even though his fingers weren’t nimble, that left arm movement was the first step in regaining some independence.
Watching Chris work on feeding himself in OT, as well as using the standing machine, the Lokomat, and the RT300 in PT was really uplifting. It was all progress toward him getting strong enough so he could feed himself, stand, and walk without the aid of machines. The bike’s electrodes made his muscles fire, so even though we knew the electrodes were doing most of the work, watching his legs move after they’d been lifeless was a beautiful thing to see.
We experienced the same excitement while he worked toward feeding himself with the aid of a special anti-gravity machine that came up behind his chair. The machine reduced gravity, while the weight helped to offset the reduction, so he was able to work with what movement he actually had. Going from having somebody feed him to the ability to feed himself using the anti-gravity equipment was progress toward his ultimate goal.
Chris wasn’t the only one learning new things. We had to learn how to help him with the most basic tasks, and at first we were timid because we really didn’t know how to help. When we took him on an outing, people from the hospital put his sweatshirt and coat on because we were scared we would hurt him. We eventually learned little tricks, like if he was going to put a sweatshirt or a coat on, we put it on his weaker arm first because it was easier to get his better arm through the armhole. Putting his sweatshirt over his head before threading his arms through worked best, and if we were going to put him into bed, it was easier to take his shirt and sweatshirt off before we laid him down because once he was down, it was that much harder to get them off. We basically got comfortable helping him and quickly learned we weren’t going to break him.
We also learned to look out for and interpret signs that something with him was not quite right. Whenever part of his body was stressed, a different part of his body exhibited a problem as an alert. For example, one time we put his foot into a new shoe not realizing the toe area was blocked and his foot was scrunched. His leg began to spasm as a signal that something was wrong. He might get a headache because his toes were caught underneath his foot, or a spasm when a wrap was left on too tight. We learned to watch for any signals and to seek out possible causes.
From a pride standpoint, Chris didn’t like that he couldn’t dress and feed himself, but he wasn’t offended at having others help him. Whenever I talked to other people with spinal cord injuries, they often told me they absolutely hated being dressed and fed. Chris wanted to do those things himself, but I don’t think it bugged him as much as other people more set in their ways. I think he saw it as assistance, and it drove him to want to feed and dress himself. It gave him something to work toward, and he took pride in working hard.
We focused on the little improvements he made and celebrated each one to keep the slow progress from frustrating us both. For his own mental stability, Chris had to approach rehab as a marathon and not a sprint. If he waited to celebrate when he could feed himself on his own, for example, and not celebrate being able to use the anti-gravity machine, he was going to have a tough time staying motivated.
Chris understood that the effort he put in each and every day would determine his eventual outcome; he couldn’t skip any steps. From my coaching background and his athletic background, we both knew that was the recipe for success. We acknowledged his incremental progress, set achievable goals, and faced each day as it came because with spinal cord injuries and recovery, the pace was torturously slow.
I turned fifty in December, and the difference in our ages was never more apparent than when we were forced to cohabitate. I hated when he went away to college, and I used to joke that I wanted to be his roommate. During our time in the hospital I got to be his roommate; we were living together, and there were challenges. When I read on another CaringBridge site about the difference between the schedules of a teenager versus
an adult, I felt validated.
The schedule of a teenager (or upper teen like Chris) and my schedule as a middle-aged adult were vastly different. Chris napped during the day, either over his lunch break or after therapy. Around eleven o’clock at night, he’d want to start a movie or have me set him up on Skype. Typically, by ten o’clock on a work night, I’d start getting ready for bed. From a purely physical standpoint, I was ready to sleep when he was just getting started. Plus, I’d always wake up early, whether I wanted to or not, but he’d sleep another hour and a half. Our schedules never meshed.
During our downtime, Chris enjoyed hearing stories of my childhood, and in particular stories about my dad, which was ironic because Chris reminded me so much of his grandfather. My dad graduated from a very small high school in Iowa, so small they didn’t have a football team. He attended the University of Iowa, a perennial powerhouse in many sports, bound and determined to be a three-sport letter winner at the Division I level. My dad walked onto the football team his freshman year despite never having played. The first time they padded up, he didn’t know how to put his pads on and went through most of the practice with his shoulder pads on backwards because he was too proud to ask for help.
My dad made the freshmen team (a retired practice at D-1 schools) and proved to be a hardnosed wide receiver, but suffered a career ending shoulder injury late in the season. He then attempted to walk-on in basketball and baseball every year for four years. He got cut every year and always met with the coach, upset he hadn’t made the team. My dad and his indomitable spirit just refused to give up.
