by Chris Norton
“Never once did I hear Chris complain about his situation or refuse therapy. NEVER.”
~ Megan Gill, PT, DPT, Clinical Lead Physical Therapist for Spinal Cord Injury, Mayo Clinic
* * *
It broke my heart and simultaneously made me angry whenever the doctor and therapists talked about Chris using a wheelchair as if it were a foregone conclusion. It was clinical and prudent advice, but none of us were ready to accept his fate and run out and install a ramp at our house.
“They’re basing it off the worst case scenario,” I told Chris. “You’re going to beat this. They don’t know you. They don’t know what your outcome will be.”
I tried to walk the fine line between reality and optimism, not to feed him false hope, but to keep him positive, uplifted, and encouraged. It was a delicate balance, and to be honest, I probably learned best how to keep things in perspective from watching Chris.
I seriously couldn’t imagine being in his situation and staying focused on one day at a time the way he did. The way he always had. When he went to sleep at night, he knew he’d done everything he could that day, and he didn’t face tomorrow until it arrived. We learned to model our behavior on his and the way he instinctively did what was necessary and then moved on. As the dad of the family and the man in charge, it wasn’t an easy lesson to learn. Many nights, the only reason I fell asleep was sheer exhaustion. But of all the people I knew, Chris seemed uniquely prepared. In some ways, he’d trained his whole life to handle this kind of adversity. He took things as they came, found joy in every experience, and never complained.
Everyone involved in his hospital stay provided information about his care and were very helpful, but some made a lasting impression. Dr. Georgia, a feisty woman from Wyoming, was probably the single biggest inspiration to Chris because she was the first medical professional to tell him he was going to beat this. Deb told him that, his sisters told him, we were all telling him he could get better, but it wasn’t until a medical professional said it that he truly believed. Her interaction with Chris proved that the personal aspect of medicine was as important to his recovery as the medical aspect.
The hospital’s social worker set up an appointment for Deb and me to tour the rehabilitation therapy floor at Mayo, and we were very impressed. He also gave us information on other rehabilitation facilities to consider and offered to help us make contact. While his assistance was helpful, it also felt as if he’d placed a live grenade in my hands. Chris’s entire future depended on us making the right decision about his care, as we knew rehab was where he’d improve the most. We all took turns doing research using the computers in the waiting room, but the ultimate decision rested on my shoulders. I had to choose wisely, and there were many factors to take into account.
The only facilities we really considered other than Mayo were the Rehabilitation Institute of Chicago (RIC) and Denver’s Craig Hospital. There were other excellent facilities we investigated, including Kessler Institute of Rehabilitation in New Jersey and Shepherd Center in Atlanta, but they weren’t in the Midwest. We had to look at the big picture, and we all felt the best therapy Chris could get had to include the support of family and friends. If he got great treatment but felt discouraged, depressed, and isolated from those who loved him, it wouldn’t matter how good the rehabilitation was because he wouldn’t thrive. We had to consider both his physical and social needs.
Searching for the right rehab facility for Chris was probably the most difficult decision I have ever made in my life, especially as I had to sift through the “noise” of everyone trying to be helpful. Every friend, family member, and colleague had a suggestion, story, or recommendation. What if I picked wrong and changed my son’s life forever?
Then a person at Craig Hospital told me exactly what I needed to hear. She said that what was going to come back in Chris’s body would come back, no matter where Chris did his rehab. No facility had a magic wand or a silver bullet that would make a significant difference in what function actually returned. The difference between the facilities came down to which was better suited for strengthening and maximizing his recovery.
Knowing there wasn’t a wrong choice lifted that huge burden off my shoulders, but I continued to research. I didn’t want to stay at Mayo simply because it was convenient when another facility could help Chris walk again or regain movement in his hands. From day one, we were working with the physical and occupational therapists from Mayo’s rehab floor, so that gave them a leg up. We knew they were knowledgeable, professional, and caring, but they weren’t just talking about what they would do, they were already working with him.
We talked to Chris about his options. Luther’s proximity to Mayo was a very strong factor for him, because as an eighteen-year-old college freshman, he didn’t want to be cut off from his friends. After much research on Mayo, RIC, and Craig, and considering Mayo was an hour and a half from Luther, Mayo seemed like the best choice for Chris. Not only could Mayo provide world-class care, but his friends and fellow students could come up on the weekends or even come up for dinner and then head back. It was a win for everyone.
With the decision made as to where he would rehab, the financial burden of living out of a hotel could no longer be ignored. We spent the first night in an awful place, but we were too mentally and physically exhausted to find another. Besides, two weeks in a decent hotel would have wiped out our savings at a time when we needed money more than ever. But while Chris was in ICU, some friends of ours got together and paid for two weeks at the Courtyard Marriott near the hospital, paying the hotel directly and without asking our permission. Our wonderful friends also brought clothes from our house and helped us move in because we still had the grill, chairs, and cooler in the back of our vehicle.
However, the family planner didn’t have a plan for what to do after those two weeks were up. All we knew was that Chris would be in the hospital for eight weeks, we couldn’t leave him three hours away from home all alone, and he needed his dad by his side. We looked at Chris and knew we’d do whatever it took to be with him. Sell the house, empty our savings account, dip into our 401-K. Nothing was off the table.
We had less than five thousand dollars in savings and that wouldn’t last long. I’d been in my position with DMACC for just under two years, and I’d quickly fly through my vacation and sick time and have to go without pay. None of that gave us a moment’s pause in our decision for me to stay, but facts were facts: we needed both of our incomes to make ends meet.
* * *
Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.
~1 Thessalonians 5:16-18 NLT
* * *
MY FAMILY was very close and we’d always been there for each other, but going through my injury and recovery together brought our family to a whole new level of closeness. Everything we shared was more emotional and intimate than anything we’d ever experienced before. Seeing how much my family and my sisters in particular wanted to be there for me, and how much they looked forward to being with me on the weekends made me realize how blessed I was to have them in my life. My injury and lengthy hospital stay after the death of a high school friend and during a time when I lost my maternal grandmother helped me recognize the value of all the relationships in my life.
But like a typical eighteen-year-old, I initially took my family’s support for granted, not realizing how vital they were to my recovery and how important it was to have them by my side. I spent most of my non-therapy hours in my room for the first couple of weeks. During that time, the nurses, therapists, and doctors all commented on how great my family was, and what a huge support they were for me because they didn’t see that kind of devotion very often. I’d kind of shrug off their comments because that was just my family acting like my family. If I had a game or a part in a play growing up, they’d be there. If my sisters had an event, we’d go, no questions asked.
Even when I went
to college, my parents came to all the home games and the away games if they weren’t too far. I wouldn’t have blamed them for staying home—I wasn’t a starter and I wasn’t on the field very much, but I loved having them there. After home games, they’d take me out to eat in Decorah.
I was so busy at school that I didn’t do a great job of communicating with my family, but that didn’t stop them from driving three hours to see me stand on the sidelines and get into the game for a handful of plays. It wasn’t until further along in the rehab process when I began to see other people—even people around my age—going through therapy with no one there to help or support them that I truly realized how blessed I was to have my family by my side.
For the first two weeks I was in the hospital, having my whole family around meant I never felt alone. I could ask them for anything. I had a nurse, of course, but she wouldn’t sit in the room right next to me like my parents did. If I needed a drink, wanted to watch something on TV, needed food, or anything at all, they were right there. They came to every PT session, helped me get into my chair, and were a fantastic support. They wanted to make my time in the hospital as comfortable and easy on me as possible.
There were some awkward times when I felt uncomfortable having my family around because I was more exposed, like when I had to go to the bathroom or take a shower, but I would have been uncomfortable with anyone at that point. By far, the most awkward part of my hospital stay was being washed by a stranger. The alternative involved transferring to a shower chair, but that process included the uncomfortable and painful lift system. I still had a lot of neck pain, and I didn’t like water touching the surgery site or having my head scrubbed because it was so sensitive, so a sponge bath in bed and all its embarrassment was the best choice.
But that didn’t make it easy to accept. It was just so weird being washed by someone I didn’t know, a strange woman, or worse—a guy. The hospital tried to set me up with guy nurses because they thought that would make me feel more comfortable, but that was not the case. I’d rather have a woman any day of the week. The truth was, I hated every part of personal care. Every. Single. Part. Having a stranger see me naked, wash me down, and touch every part of me caused all of the anger, fear, and disgust over my situation to pool under a heavy blanket of shame. Every time I needed to use the bathroom, shower, or brush my teeth, I was reminded of just how low I’d fallen. And it hurt.
The nurses did the best they could to ease my discomfort. They’d tell me beforehand what they were going to do, and they encouraged me to tell them if they ever did anything wrong or did something that made me feel uncomfortable. In fact, they preached about how important it was to be an advocate for my care. Once I knew the routine, it was easy to speak up for myself, and their attitude and professionalism lessened my anxiety. The level of care and attention I received only reinforced that I was where I needed to be, doing everything I could to get better. The rest was in God’s hands.
After two weeks, my mom and sisters left, which was hard on both my dad and me. I loved having my mom around because I felt so comfortable with her loving support, and my sisters were a great source of entertainment. They’d run to my room and hug me, and their love and the joy they seemed to feel at being with me lifted my spirits. I fed off their energy. We’d laugh together and they’d constantly poke me and rub me, so it was livelier with them around. I wished they could have stayed, but I understood my mom had to go to work, and my sisters needed to get back to class.
One night, maybe a month or two after my injury, it was just Katie who stayed. After the usual where-am-I-touching-you games and talk, she very seriously asked how I was feeling and how things were going. She got really quiet for a minute after I answered, staring down at her hands before she lifted her eyes to mine. It hit me like a punch in the face when I saw the tears glistening in her eyes.
“I wish it was me,” she said, as her chin quivered. “I wish it was me going through this. I would trade places with you in a heartbeat.”
The depth of her feelings, and the sincerity of her words, left me speechless.
“You’re so motivated and so driven,” she continued. “You had so much going for you. I just hate that you’re going through this. I wish it was me.”
I got emotional hearing how much she looked up to me and how much she loved me. She meant every word. She would have traded places with me without hesitation. I was totally blown away by her unselfish display of love, and her admission reaffirmed that despite my circumstances, I was very blessed.
* * *
“He is the one person I know that can get through something like this and never lose hope or give up.”
~ Katie Norton, Chris’s sister
* * *
Having my dad around was an incredible comfort to me, particularly when the rest of my family left to go home. He and Mom had talked and he wanted to stay, go through rehab with me, and make sure I wasn’t alone. He said we’d beat this—we—because it would never be me on my own. I loved him for that and for his confidence in the outcome. It was awesome that his job allowed him to stay with me so I could just focus on getting better.
My hero and coach never left my side. He gave great advice, and if I ever felt bad about something, he knew the right thing to say to get me back on track. He always pushed me to make the best of myself growing up, and he was able to do the same during therapy. He helped motivate me, he got along really well with my therapists, and he was fun to be around too.
He kept telling me how proud he was of me, and while it felt good to hear him say that, I was still the same person inside. I didn’t feel any different, or think my attitude ever changed. I was just as determined to get better and improve myself after the injury as I was growing up in regards to school and athletics, but this time the goal wasn’t a good grade or a state championship. The outcome meant so much more to my life. With my back against the wall, there was only one way to go—move ahead and get better. I had no other choice. I think a lot of people in my situation would have done the same, but from the outside looking in, it probably seemed like an overwhelming task.
My dad slept over every night. I felt reassured having him right next to me if I ever needed anything or wanted to talk. We really didn’t have much downtime, but at night if we weren’t reading CaringBridge, we’d watch TV, or I’d Skype, or talk with friends. Sometimes, he’d wheel me down to the cafeteria, or up to the top floor of St. Mary’s and hang out, or just explore and get us both out of the room.
My dad and I learned a lot about each other that we never would have known otherwise. For example, he likes to repeat things a lot. I called him Captain Repeat. He’d tell the same story over and over again about something that happened the other day or the conversation he had with someone.
My dependence created some awkward situations and a good dose of frustration for both of us. I wanted to have normal privacy to chat with friends and catch up, and I didn’t want to do that with a parent there. It was weird having my dad text my friends for me, and he wasn’t very good with technology or the computer. He was a really slow typist, which made him a really slow texter.
Whenever he wanted to open up a new tab on the Internet, he couldn’t figure out how to do it, no matter how many times I told him. I swear, I showed him how to open up a separate tab twenty times and he instantly forgot. And don’t get me started on his social media skills. He was just completely oblivious to a lot of technology and social media. It was hard to be patient when I had to explain using words because I couldn’t point. I tried to use my eyes, but that never worked.
It didn’t take much to please me, and it took a lot to make me unhappy, but when I needed other people to help with everything, I realized that everyone had their own routine and their own way of doing things. When I was in control and doing everything for myself, the way I like things done went completely unnoticed. Like brushing my teeth, for example. I brush my teeth really hard, and I brush them for a long time, especially in certa
in spots. When I tried to explain how to brush my teeth and those helping me didn’t understand, I got annoyed. I just wanted to do it myself so it was done right.
Eating was another challenge. I wanted to eat at my own pace, but because anyone feeding me had a meal at the same time, I had to go with their flow. Sometimes I’d get a bite, and then they’d take a bite, and if they weren’t paying attention, they might get a drink and take another bite before feeding me again. I sat there, trying to be patient. Hello? Is it my turn yet?
I soon realized that my dad was a big sauce person. He loved to drown his chips in salsa or drench his french fries in ketchup. I liked a moderate to a minimal amount of sauce. I kept having to say, “No, too much ketchup.” He eventually learned to ask how much I wanted before dipping anything in sauce. The little picky things I liked doing my own way made me seem very particular and high maintenance.
Frustration at my dad when eating, brushing my teeth, and communicating with friends was a small price to pay for his twenty-four-hour devotion to my care. I love my dad and loved hanging out with him, but it was nice when my family and friends came up on the weekends. It was good to see some new faces and mix things up a bit. He needed a break from me, and I enjoyed spending time with my mom, sisters, and friends.
It was never a distraction having family and friends around. On the weekends, I had an abbreviated therapy schedule, and other people came at night when I didn’t have therapy and they were done with school or work. In the beginning of my rehab, I needed to sleep a lot when I wasn’t in therapy, and sometimes people came during therapy hours and I couldn’t take time to visit. Sometimes my family had to explain that it wasn’t a good time and why. It was a bit of a balancing act where we really appreciated the people who came, but at the same time I needed to do the work. My family did a great job of helping me focus on therapy by handling unscheduled visitors.
