by Chris Norton
Emily and Chris in the green room of a studio in Johnston, Iowa, before they streamed live on FOX &Friends, May, 2015
The Norton family on the Good Morning America set after interview with Robin Roberts, 2015.
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My world right now is a ten-foot by ten-foot hospital room in a city I have never been before. I am usually “Mr. Directions,” and right now I feel like I have no idea where we are other than this room. I ask multiple times a day what day of the week it is, as I have nothing to identify one day from the next.
~Terry Norton, CaringBridge, October 22, 2010
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THE DAY after his surgery when Chris was able to move his left arm but couldn’t wiggle his fingers, the doctor told us that moving anything below the injury site was a good sign because that meant everything wasn’t damaged. He told us that his fine motor skills, like moving his fingers, would come last because spinal cord injury patients recover the bigger muscles ranges first and then recovery spreads to the extremities. It was a good sign, and we were so incredibly thankful for any movement, but in my mind, I thought if he could move anything at all, he was on his way back to 100 percent. The slow pace of rehab did little to extinguish that hope.
By the time Chris was transferred to rehab, everyone in the family had moved into a role pretty quickly. I became the face and strength of our family. I dealt with people who wanted to visit and talk to Chris. He received a lot of media attention, probably because he was a college football player, and Deb insisted I represent the family. She was concerned she wouldn’t be able to control her emotions during the various newspaper and phone-in radio interviews the media requested on a pretty regular basis. I was also the one who’d work with the hospital in terms of his care.
In addition to working full time, Deb continued to be the nurturer, the giver of emotional support, and the food coordinator—all the things that felt like home. Having her around meant I had my partner back, and we always made time to reconnect with each other. She told me what was going on at home, and I filled her in on Chris’s progress in rehab. She also made sure the girls were on track with school and friends and basically tried to keep their lives as normal as possible.
Alex and Katie both provided a lot of encouragement for Chris. They came on the weekends, planned his activities, and made his days fun. They were always working on his room, rearranging things, cleaning it up, and redecorating. It was important to them that Chris remained positive and happy in his environment.
Our short and long-term plans were to keep Chris as positive as possible and to keep our family together. One of the things Deb and I talked about was not letting his injury and the months we’d spend separated tear us apart. We were already close, but the whole experience really drew us together because we needed that emotional support from each other. It definitely made us more considerate of the other, and even though we’d always had a very loving marriage, we realized how much we needed each other.
We’d never gone through a personal challenge, a crisis as a couple, or a family tragedy before. We’d heard stories about people who’d lost a child or something else terrible had happened in their family, and it ended up destroying their marriage. We knew how easy it would be to start channeling our anger and emotions into something ugly that we took out on each other. We were determined to stay together throughout his recovery, and equally determined that Chris would have a wonderful life regardless.
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“Chris started wiggling his left shoulder and I knew right then and there that our family was going to be on a long journey, but we would make it through.”
~ Katie Norton, Chris’s sister
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We started accepting that things were going to be okay no matter the outcome. What Deb and I didn’t care for, however, was people telling us to get used to our “new normal.” For some reason, it felt like they’d stuck a knife in our backs. It really hurt. It felt as if people expected us to simply accept Chris’s situation immediately. We were really resistant to the phrase new normal because nothing in our lives felt normal.
Chris continued to work hard in therapy, especially PT where the immediate goal was for him to drive his wheelchair with his left arm. Megan was phenomenal. I compared her to a really good coach because she had an eye for detail, she always had a plan, she was professional, and the perfectionist in her made sure everything was done correctly. She was one of many at Mayo who made us feel that Chris was right where he needed to be.
Watching our son drive a wheelchair was another one of those emotional slaps to the face. Despite the effort it took for him to drive on his own, we continued to consider the wheelchair as something temporary. One of the doctors did a really good job of helping our frame of mind by explaining that Chris would be given all of the services and adaptations he needed at the time, and as he no longer needed the devices, the staff would peel them away. I compared his situation to having knee surgery and starting off on crutches, and then progressing to a cane or a knee brace. When we thought of the wheelchair as a recovery tool and a step in the right direction, it helped to view it as an accomplishment and not as surrendering to a new way of life.
Chris got a lot of calls and even some visits from people who’d suffered spinal cord injuries in the past. He asked them questions, but I wasn’t ready to hear from people who’d learned to live with their injuries—I didn’t want to plant that seed. I held tight to hope and still believed that Chris wasn’t going to end up in a wheelchair.
In the midst of all the pain, there were a lot of blessings because of the opportunity to be at one of the best facilities in the world. The professionals at Mayo were so kind to Chris and our family. They couldn’t have treated him any better. We spoke to the doctors frequently, sometimes daily.
Once Chris moved to rehab, we saw the surgeons less and less. They did stop in periodically just to see how he was progressing or to take an X-ray. Every so many weeks, Chris was rotated to one of three doctors. We saw the doctor in his rotation almost daily, even if just in the hallway; they were always around.
His doctors were all very different. One of them was matter of fact, one was optimistic, and one was in-between the two.
The matter-of-fact doctor said in terms of personal care, “Let’s learn to adapt with where you are now because you may not get any more recovery than this. You don’t want to do bathroom care every day and give up two hours of your life, so you need to do it every other day.”
The optimistic doctor talked to us like he was a friend who just happened to know a lot about medicine. He approached the same topic in a different manner. “If Chris continues to need bathroom care, then you may want to consider going every other day if his body can withstand it so you’re not having to take time out of your schedule.”
Just by saying, “If he continues to need it,” he left the door open for a chance Chris wouldn’t, whether through medical advancements, his own recovery, or some breakthrough. We really appreciated the thoughtful way he phrased his words, not selling us false hope, but giving us hope.
Deb and I used to say that when mothers and fathers had a severely hurt child, the parents became like teenagers all over again. We were just hanging by a thin thread onto everything the doctors, nurses, and therapists said and the way they said it. Our day could be crushed because we were so vulnerable to both the words and tone of the doctors.
So when one doctor said, “You don’t want to have to do bathroom care every day,” in our minds, with our teenager mentalities, he was telling us, “You’re going to be doing bathroom care for the rest of his life. He’s never going to recover from this.” That wasn’t what he meant, but that’s how it came across.
Whenever one of the doctors said, “You need to have a power chair,” the other said, “Start out with the most adaptive devices you need, and then pare back as recovery continues.” Leaving the door open for recovery was huge when we were so thin-skinned. I connected better with one of th
e doctors because he always said, “There’s so much going on in medical research right now, and for these young guys, we just don’t know.” We needed to hear there was hope and an opportunity for future recovery.
Twice a week, the doctor, nurse, physical therapist, occupational therapist, recreational therapist, and psychiatrist met in his room to give a “State of the Union” update. I dreaded the rounds because we tried to put a positive spin on everything, and those meetings didn’t leave much room for the possibility of hope. I didn’t begrudge the doctors, the nurses, and so forth for coming across as pessimistic because they were just doing their jobs, but no one truly knew what tomorrow, the next week, or the next month held.
During rounds, they addressed Chris’s current abilities or lack thereof. The whole experience was just discouraging. They talked about needing a ramp and Chris getting fitted for a wheelchair—things we weren’t ready to hear. We held out for the possibility that he was going to walk out of the hospital, or that he would walk at some point, and everything they said came across as very negative.
They were simply being realistic, but I personally didn’t think they needed to talk about home care so soon. Maybe they found from experience that they had to keep bringing it up in order to push people to the point of acceptance. But I couldn’t bring myself to tell my eighteen-year-old son, an outstanding athlete I’d always seen as invincible, that he was going to be in a wheelchair when we left the hospital. I just couldn’t spin that in any way that would come across positively, so I absolutely dreaded the rounds.
I tried to go numb and just nod my head and get through them. There were times when I pushed back. For example, one of the things I felt they wanted to do too early was talk about making adaptations, like teaching us to dress Chris and teaching us to help Chris get himself dressed. At that point in time, I wanted to focus on strength and recovery and then focus on what adaptations he’d need.
It used to be that when someone had a spinal cord injury, that patient stayed in the hospital for a year before being sent home. At the time of Chris’s injury, patients stayed for four weeks or eight weeks before getting discharged. For better or worse, medical professionals wanted patients to start integrating back into the community quicker, even while the patient’s body was still recovering. Instead of teaching us to dress him two weeks into rehab, I wanted to focus on getting him as strong as possible first, and then in a few months’ time, reassess and make changes.
Some of the old-school doctors and therapists worked toward prepping Chris for his departure home, while I and the more progressive doctors and therapists tried to focus on getting him stronger. I knew they had their checkpoints, or things they had to be sure we knew before he was discharged, and they knew I wanted to spend every day on recovery before worrying about the checklist. We had a philosophical difference with some of the team where we basically looked at Chris’s injury and recovery from two different angles, but we managed to find a happy medium.
One of the issues that came up during rounds was when Chris wanted more therapy. Spinal cord injuries cut across all bounds, so therapy was designed for a cross-section of people. If a fifty-year-old man suffered a spinal cord injury after falling off his roof, or a thirty-five-year-old woman fell down some stairs and suffered a spinal cord injury, the standard therapy was three hours a day because that was what most people could physically stand.
Chris was a college athlete at the time of his injury, and he was used to working out all the time. Some patients were runners or swimmers and able to withstand a more rigorous pace of therapy. Despite the average, everyone was different. Frustrated with the slow rate of progression and physically able to do more, Chris asked why he was only getting three hours of therapy. He was told it was the average number given.
Chris countered with a very profound statement. “I’m not average,” he said. Some people fell into the average range, but he didn’t, and many others didn’t either. He wanted more time to work with the therapists, he could handle more work, and to their credit, they bumped his therapy to four hours a day.
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“Experiencing this journey with Chris has given me the tools and confidence to challenge those who criticize SCI recovery.”
~ Megan Gill, PT, DPT, Clinical Lead Physical Therapist for Spinal Cord Injury, Mayo Clinic
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Even after he went from three hours of rehab per day to four hours, that still wasn’t enough to satisfy Chris. He was beyond focused on getting better and wanted to maximize every second of every day. Once, in the middle of the night, while sleeping in his room after a hard day of rehab, I heard him say, “Dad?”
“Yeah?” I responded, worried something was wrong.
“You know, the extra things I do are what’s going to make a difference in my life. I’m going to be successful because of all the little things I do.”
“That’s right,” I said. “It’s all the little things that make anyone successful.”
“I'm going to focus on today and do the best I can,” he said.
Goal setting was similar to planning, and they didn’t call me the salesman for nothing. “Do you want to put a list of goals together? We can post them on the wall.”
“Yes,” he said, “but I want my goals to be on what I’m going to do, not the outcome. You need to help me write a list of all the things I can work on.”
“That’s a great idea,” I grumbled, relieved he wasn’t hurting, “but can we wait three hours to get started? It’s four in the morning!”
Even in the middle of the night, that made so much sense. In other words, he didn’t want to put on the wall that his goal was to move all of his index fingers or to walk by a certain date. We based his goals on whatever he was working toward at the time—for example, to complete ten sets of head nods every day, or to have the therapists stand him up for five minutes.
Sometimes the goals didn’t change. If they did, we updated the list or changed it altogether. His goals focused on the process instead of the end result. Very early on, Chris understood that he could only control his end of things. He even coached me through setting achievable goals because I kept thinking too big. He understood well before I did that the outcome would take care of itself. Chris was constantly thinking about ways to improve. We put that list up on the wall, and then we spent time doing those things in addition to therapy. He was just go, go, go all the time.
The whole time Chris was at Mayo, I don’t think he ever ate a hospital meal. At the time of his injury, he played the safety position at 185 pounds. He was lean, wiry, and strong, and there wasn’t an ounce of fat on him. Within a few weeks after his injury, he was down to a 151 pounds and we were very concerned. We expressed our unease about his weight loss to the doctors and nurses. Part of the answer was muscle atrophy and a decreased appetite, but we knew that couldn’t possibly account for the sheer bulk of weight he’d lost.
We kept bringing up his weight loss until a nutritionist got involved, agreeing he’d lost too much weight and starting him on protein shakes and smoothies. That experience taught us early on in his battle that even though the professionals were doing the best job they could, we still had to look out for his care. Our family, along with Chris himself, was his single best advocate. There were times when I had to move outside my comfort zone and push for what I knew was right by asking myself, If you don’t do this for your son, who’s going to?
In addition to pushing to get a nutritionist involved with his weight loss, we were very vocal about how many people were necessary for helping him transition to the chair using the overhead lift system. We insisted they put in their notes that three people were needed. I quickly learned how to help, so it was typically myself and two other nurses, but whenever they started to transfer him without three people, we intervened and insisted they get more help. His neck was extremely sensitive, and he couldn’t protect himself during the transfer.
Chris told me he felt like he was strapped to the bed in a f
ull-body cast that gradually moved down. The doctor said he would improve for up to two years, with the bulk being in the first six to nine months. For an eighteen-year-old trying hard to focus on one day at a time, six months sounded staggeringly long. The mantra I started using with Chris was “six months for sixty years.” I don’t know where I came up with it, but I told him he had to give up six months of his life to gain sixty years of living. In other words, six months sounded like a long time right then, but he’d get to six months, and he’d recover to where he was going to recover, and he’d have sixty years of life after that to be at that point. He had to give up six months for sixty years.
In talking to people who’d suffered spinal cord injuries, we discovered most regained feeling in their legs around the six-week mark. Some said four weeks, some said five, but by six weeks most had gotten some life back in their legs. I lay in bed at night as we closed in on that six-week mark and wondered how we’d keep his spirits up if that marker came and went without movement. Chris stayed positive, even after a month of not being able to move his legs, but we were using that six-week timeframe to fight off some of the demons. That was easy to do during the first two days, or the first two weeks, but as we inched closer to the six-week mark and he still hadn’t moved his legs, I prayed and prayed for progress.
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I can do all things through Christ who strengthens me.
~ Philippians 4:13 NKJV
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AT THE beginning of November, therapy really picked up steam. They were helping me get used to standing up so I could use the Lokomat, an advanced walking machine. We worked on feeding myself in OT, and we’d just started working with the electrical stimulation bike (RT300) in PT. It felt as if my body were coming out of that post-surgery drowsiness, and the fatigue that kept pulling me under.
