What Doesn’t Kill Us Makes Us Stronger, Part 2

I met Greg and Laura Nordfelt at the 2013 Brain Injury Conference, just two years after Greg’s motorcycle crash. I’ve enjoyed our friendship and watching this couple get stronger through their traumatic experience. They spoke last week at a combined Survivor and Caregivers Support Group sharing what they’ve learned.

Written by Laura Nordfelt

The medical helicopter which came to life-flight Greg was very old and small. In fact, half of his body was in the nose of the aircraft. The ventilator was broken and one of the paramedics was trying to bag Greg (it seemed sporadically) while trying to preform many other tasks. I mentioned to her I was an EMT and asked her if I could do the bagging for her. She agreed and I continued on every 4 seconds like I was trained to do in school. The flight seemed to take forever (I worried we were going to Canada!) and only looked out the window once or twice. When we started to land, all I saw was a “tough shed” structure on top of a roof.  Medical people ran out to get Greg and down an elevator we all went and into the Emergency Department. By the time I felt comfortable enough to leave his side, I asked, “Where are we?” When they told me Coeur d’Alene, ID, I told them I needed to take Greg to Salt Lake City, but the doctor told me he would not survive the flight. I slumped down against the wall and lost it.

I made mistakes. I am fiercely independent and a stubborn woman. In the beginning I turned family and friends away. I said “don’t fly up here, I’m fine”. Then, “we don’t need meals, I’ve got this covered.” Not only did I watch him crash, but I kept him alive for 45 minutes until the paramedics arrived. I was a mess! I had post-traumatic stress disorder (PTSD) and I was in a cocoon as much as Greg was in a coma.

An Executive Vice President from Greg’s work came to the hospital to visit and I cut her off down the hall and visited with her. There’s no way I was going to let her see the condition Greg was in. I was so worried that he was going to lose his job. I posted a sign “Family Only” on Greg’s door at the hospital. Visitors had to check with me or the nurse before entering his room. I took the phone off the wall and put it in a drawer and took his cell phone away from him. He wanted to call his office to “check on things” all the time. I was worried he’d say something inappropriate.

When Greg left the hospital, I sent out a message on Facebook telling our friends that Greg needed time to rehab and recover so if they could wait to visit, that would be much appreciated. I really only meant it for acquaintances, thinking our close friends wouldn’t take it to heart. A few months down the road some dear friends of ours called and asked if they could bring dinner and come for a visit. I was thrilled! Frankly I had wondered why they hadn’t called sooner.

While we were setting up dinner, she told me they would have come sooner, but wanted to respect my wishes of giving us our space. I said, “Oh, I didn’t mean you guys!” I realized then that I had alienated the very people Greg and I needed the most. Greg’s co-workers later expressed the same emotions. If only they’d known what to do. They wanted to help in any way, but we pushed them away.

I own a business and I needed someone to sit with Greg or run him to therapy appointments, but I said “NO, I’m fine”. I really wasn’t fine, but I wanted to be and I didn’t know how to let them help. Most of it was my fault, but some of it was not.  Caregivers leave the hospital with their tool bags pretty much empty. I had to earn my hammer, saw and screwdriver the hard way. I felt neglected, isolated, abandoned, ignored, lonely, unsupported, disrespected and misunderstood. When I needed family and friends the most, they were all gone.

In order to heal, I had to get outside of myself. I started the first ever Caregiver Group in Utah as a survival mechanism. As much as I wanted to give back to the community, I needed other caregivers. As I spent time listening to their stories, I felt not so overcome by my own problems. I felt empathy and compassion. When “in the moment” of caring for caregivers and survivors, their hurdles felt more important than my own. When we get caught up in these “feel good” experiences, we don’t need anything in return. I also joined the Board of the Brain Injury Alliance of Utah. This is my passion now!

Another way I healed is a couple of years ago a friend asked me to join her book club. I love to read, but I was scared at first because I only knew her and no one else. I went one time and almost did not go back, but forced myself to hang in there. These women are now very near and dear to my heart. I’ve read many wonderful books which I never would have picked up on my own. The social setting has its benefits as well. We trade off hosting dinner so I’m learning new recipes. I work on my listening skills and forget my problems for a few hours. By the very nature of getting together with women, it forces me to get out of my pajamas. Therefore, I get semi-dressed up, put on my makeup and lipstick and wear my fun jewelry. All of this is very good for my soul!

Thank you, Laura, for sharing your experiences and what you’ve learned. Friedrich Nietzsche was right, “That which does not kill us makes us stronger.”  I see that in Greg and Laura’s life and hope you see that truth in your own life.

The Move

After the doctor left with the agreement that Mark’s update reports would take place in the conference room in the future, I returned to his bedside. I held his hand, hoping to feel his spirit. Where are you Mark? Are you trapped between two worlds? Am I going crazy and imagining movements just because I want to see them? A thought came to mind, or possibly his spirit answering me, all energy is going to fight the infection and blood clot. Maybe, a coma is the best place for me right now.

Intermixed with all the worries, the improving numbers in his red and white cell counts were triumphs in my mind, along with his temperature and heart rate going down. With each passing day I was getting more and more anxious to move Mark to a rehab hospital closer to home.

The therapists were getting Mark out of bed two or three times per day now. After several weeks of lying in bed it was refreshing to see him sitting in a reclining wheelchair. Sometimes when his eyes were open, there was a blank stare. Other times I could see he was focused on something. However, every time he was moved, his eyes grew wide and he looked terrified. I felt and understood his fear. He had no control over his body and where it would land. I knew he was aware of the movement; I saw it in his eyes. In a soothing voice, I tried to reassure him everything would be okay.

One day I walked from one area in his room to another and noticed his eyes followed my movement. I walked a little farther away and lost his focus. When I got closer to the bed, I knew he could see me again and as I moved from the left side of the bed to the right side, he lost focus again. As I watched him from his right side, it appeared to me he was searching the left side to find me. I tested this a few times, moving from one side of the bed to the other. I was positive he could see me on the left side, but for some reason could not focus on me when I was on his right side. Every day I read to him and we listened to his favorite music on cassette tapes.

Christopher and Katie were now out of school and my mother was with them most days, but on the morning of June 12, 1991 she came early to be with me for the doctor’s report. Quickly walking towards the conference room she said, “Hi Mark,” as she walked past his room. Mark turned his head towards the door, obviously recognizing his name and her voice. A nurse was following behind her and somehow missed seeing his reaction, or at least wouldn’t admit to seeing it. In the conference room Mom told the doctor she was sure he recognized his name and her voice and he responded. The doctor and nurse would not agree that Mark’s response was worthy of any progress notation.

I was anxious to move Mark to Western Rehab Hospital for several reasons. It had a wonderful reputation for specializing in spinal cord and traumatic brain injuries and it was close to home. They only had a few beds available at the time and I was worried they’d be full when the doctor released him from McKay-Dee Hospital. The sixty mile daily commute to and from the hospital became increasingly difficult with the kids out of school and the frustrations the doctor and I felt for each other were becoming intense.

“When will Mark be released to go to Western Rehab,” I asked again.

“I don’t feel he’s should be moved yet.”

I reiterated my reasons for being anxious to move Mark and recounted all the positive improvements we had seen in the past ten days, including the response my mom had just had.

Exasperated, he said, “Well, if you’re so smart, why don’t you take him out yourself?”

Surprised by his statement, I asked, “Can I do that?”

“Yes. I don’t recommend it and you’ll have to make the arrangements yourself, but you can do it.”

“I’ll do it,” I exclaimed.

I was elated when I called Western Rehab to verify they had a bed for Mark. They helped me arrange for an ambulance to transport him there and requested the medical records from the hospital. I hadn’t been this excited since the car accident. While Mark was sitting up in the reclining wheelchair, I trimmed his beard, shaved his cheeks and gave him his first haircut since they shaved half of his head for the shunt placement, which had now been removed. All trimmed and shaved he looked better than he had in seven weeks and I was confident he was ready to move on to this next stage of his recovery. That night Dad came by the hospital and I asked him to give Mark a special blessing that all would go well with the transfer.

Saying good-bye to the Call family, whom I had shared the McDonald House with and the Peek family, who were residents of Ogden made leaving the hospital hard. These two families had become my hospital family. We spent many worrisome hours together in the waiting room while our loved ones were in ICU. We ate meals together, attended church services at the hospital and shared tears over concern for our loved ones. I knew I’d miss their love and support.

I didn’t take my decision to move Mark from the hospital lightly. I wanted to make sure everything went as smoothly as possible and was hoping I could ride in the ambulance with Mark to Western Rehab. Mom knew of my desire and was supportive in every way, so the next morning she drove me to the hospital and waited with me for the ambulance to arrive. Two EMT’s came to the room and with a white sheet under Mark’s body, they pulled him from his hospital bed onto the stretcher. The IV bag was moved to a pole on the stretcher, while his trachea tube was attached to a portable ventilator, which was placed at his side.

“May I ride with him in the ambulance,” I asked.

“Yes,” said one of the EMT’s, “you can ride in the passenger seat.”

As excited as I was to get Mark out of this hospital and closer to home, I felt intense gratitude towards the team of doctors and nurses for saving his life. I thanked each one of them as we gathered his medical records and packed up the last few personal items before walking out the door. I was leaving the hospital a changed person, realizing Mark’s life and recovery was now my responsibility. I was confident in my decision, but the accountability weighed heavily on my mind.

Greg and Laura Nordfelt’s Story

Greg and Laura Nordfelt                The day before the accident.

On August 15, 2011, our friend Jimmy, my husband Greg and I were riding our Harley motorcycles along a scenic section of highway 95, about 60 miles south of Coeur d’Alene, Idaho. Greg was feeling sick, from food poisoning contracted at a diner the night before, but he insisted that we continue on with our planned trip. I was on my own Harley behind Greg and saw him pass out and crash into a bed of lava rocks at the side of the road. I anxiously ran to him and gave first aid until the Emergency Medical Technicians (EMT) came. I’ve had EMT training and my skills took over until the professionals arrived. Greg was transferred by life flight to the nearest hospital in Coeur d’Alene.

Even though Greg was wearing a helmet he suffered a severe brain injury, a crushed leg and had deep open wounds from the impact. We spent 11 days at the hospital in Coeur d’Alene until he was able to be flown to the Neuro Rehab at Intermountain Medical Center (IMC) in Murray, Utah, which was closer to home and family. He was there for a couple weeks before coming home. He worked extremely hard to get back to work as a banker full-time over the next 5 months (starting initially at only 2 hours a week).

The left side of Greg’s brain was damaged beyond repair and the right side had to learn to take over the tasks of reading, writing, talking, walking, banking etc. This was difficult for both of us because it effected his personality and how we related to each other. Greg read a book called “My Stroke of Insight” by Jill Taylor, which explains in detail a neurologist’s loss of her left side of the brain function during a stroke. She had to cope with a complete driven right brain for all her activities.  This book had a tremendous impact on both of us.

Our marriage has been very different since the accident and not what I was prepared for. I’ve had to cope with his strange changes and sometimes I say to him, “Who are you and what have you done with my husband?” I wouldn’t say I’m a patient person and our six children can probably attest to that, but I have been extremely fortunate to be able to take one day at a time.  After all, isn’t that what marriage is all about?

Greg and I were very “fly by the seat of our pants” kind of people . . . always ready for the next adventure, whether it was motorcycles, riding our bicycles down hills at 60 mph, hiking where we maybe shouldn’t be hiking, jumping off cliffs, extreme diving, etc.  NOT so much now.  We are discovering new adventures in less dangerous ways.

I was not prepared to be a caregiver for my husband. My EMT training seemed to help some, but as a mother, being a caregiver came naturally. However, the thought of taking care of an adult TBI survivor long term was extremely hard, especially when there was no one taking care of me.  Brain injury patients are constantly surrounded by doctors and therapists. They are initially monitored and recorded and any progress is celebrated.  As a caregiver, I was left completely on my own to figure out my new life and how to make it work. I felt like I was set up to fail! There were no guidelines, no manuals and no pats on my back.

I was also dealing with Post Traumatic Stress Disorder (PTSD) from the accident. I tried personal therapy a couple of times, but couldn’t seem to find the right therapist for me.  I looked for caregiver groups, but none were readily available.  Within a year after Greg’s accident I asked to join the board of directors at the Brain Injury Alliance of Utah (BIAU).  It was my attempt at giving back to the TBI community. I was motivated specifically to start a “Caregivers Support Group” that was not available to me during Greg’s recovery. It was extremely important to me to help other caregivers that were lost like me. I also felt it would help my own healing while supporting the daily living issues of other caregivers. I felt that working together in groups would be therapeutic and healing for all of us.

Now we have our very own Caregiver Group monthly, at Intermountain Medical Center in Murray, Utah. We meet in conjunction with the Survivor Group on the third Thursday, at 7:00pm. Together we can learn how to cope, and find helpful resources. A big shout out of thanks goes to Kim Kirkham at TOSH for all her help launching this group and for her continued support. Greg has also been supportive and has helped me find a way to support TBI caregivers.

Monthly updates concerning the caregiver support group can be found on our facebook page: https://www.facebook.com/pages/Caring-for-the-TBI-Caregiver/705869382781093  Please press the “Like” button to get updates.

You can listen to Greg and Laura recount their experience and tell their amazing story.