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

Greg & Laura-landing pad.pngThe 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.

Greg & Laura-tableWhen 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.

Greg & Laura-walkIn 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.

What Doesn’t Kill Us Makes Us Stronger, part 1

A German philosopher, Friedrich Nietzsche, actually said it more eloquently: “That which does not kill us, makes us stronger.” I thought this title was fitting for the couple I’m highlighting this week. 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

Written by Greg Nordfelt

Greg headshotI am a three time Traumatic Brain Injury Survivor (TBI). By looking at my picture, you’ve already noticed I have a huge forehead. Many have told me I could rent space out on it as a billboard. Well it’s also a magnet to immovable objects. That’s why I’ve had three TBI’s. The first was in high school when I was skiing at Alta. I fell on a mogul run and hit the post of a sign that ironically said, “SLOW SKIING”. I hit it head on with the left side on my forehead. The second time I was racing heavy bicycles in England downhill on the wrong side of the road. I didn’t make the turn at the bottom and my front tire hit the guard rail. I hit a lamp post head first, again with the left side of my forehead. The third time I crashed my motorcycle into a bed of Lava Rocks and, again, I hit them, you guessed it, with the left side of my forehead. I am an adrenaline junky, but unfortunately my forehead had a crazy attraction to all of those immovable objects which eventually caught up to me.

Last August was our 5 year anniversary of my accident. We drove to Coeur d’Alene, this time in a car, to meet with Kootenai Health’s executives, two surgeons, and the critical care team that save my life. This was my first time to meet them consciously. I wanted to thank them individually, face to face, and hug them so they would know how grateful I am for what they did for me and my family!

Greg & Laura-Gala

2016 Greg & Laura, Festival of Trees

The press showed up and articles were written. We were on the cover of magazines. They asked us to be their “Spokespeople” for their Festival of Trees. It’s a black tie fund raising Gala.  They asked us and we agreed to help them set a donation record. They were expanding their Emergency Department and Operating Room, the two areas that saved my life. They called us the “talent”. Put us in wardrobe and makeup. They ran out of spray for my face and said I’m “Ruddy” and “Scaly”! I’ve crashed into too many immovable objects and my “talent” and “cover” days are over! We helped them set the record they asked for and raised over half a million dollars!

My primary focus after I got home from the hospital was keeping my marriage with Laura because the TBI divorce rate is huge at 70%. My second focus was keeping my family together. Everything else I had was intently driven into relearning how to speak, read, write and walk again in Neuro Rehab. I worked harder than they asked me to so I could get my job back!

Unfortunately, I lost most of my friends and communities. They became the casualties of brain injury. As a survivor, I ruminate, isolate, avoid loud noise, bright colors, confusion, strangers and crowds. I fatigue easily.

As a result, I was no longer the late night party animal I used to be. I wasn’t as apt to go on long road trips on a whim. I avoided situations where I would get over stimulated and fatigued – the exact opposite of my old self.

I woke up one day after fighting to recover and realized I was a newer version of my old self and I had lost the human connections I once had. The good news is our neuro rehab physicians and therapists not only helped me remap my brain, but gave me tools which helped me nurture my most valuable relationships. Now it was up to me to reach out to friends and family and hold fast to the human connections that were dear to me.
On my second outpatient speech therapy session I learned my biggest lesson after my accident and it had nothing to do with learning how to talk again.  It had everything to do with being taught how to nurture the most important relationship I had – my marriage! I showed up complaining about having my first disagreement with Laura since the accident.  Remember I didn’t have my wits about me yet and could barely speak, so disagreement was a huge stretch!  I sat down across the table from Kim with a huff.

Greg & Laura-landing pad.png

2016, Greg & Laura Coeur d’Alene Hospital Landing Pad

“What’s wrong?” Kim asked. I tried to explain what happened the night before with Laura. After a few minutes she said, “Greg I’ve heard enough. Where’s Laura?”

“In the car,” I said.

“You need to stand back up in your walker, walk to your car and ask her nicely to come and stand next to you.” Then say these words to Laura.  I’m sorry.  I love you.  Thank you for all you are doing every day to take care of me and then HUG her.

This was the most important thing I learned in all of my therapy, by far!  It was an awakening moment for me. I learned that day I was a traumatic brain injury survivor and others were working their butts off to take care of me.  And, I need to thank them – often.

Thank you Greg for sharing and to your therapist, Kim, who told you what caregivers need to hear often. You are an inspiration and definitely stronger by your experience!

Greg had a 35 year career with Zions Bank and was Senior Vice President before the accident. Now he is a motivational speaker and a professional member of the National Speakers Association. The year 2016 was a big year for Greg as he was the Utah Speech and Hearing Association’s (USHA) Ambassador was awarded Survivor of the Year by the Brain Injury Alliance of Utah (BAIU) in October. He is a mentor and volunteer with Neuro Rehab patients and caregivers at IMC and is writing a Memoir expected to be published in 2018.

 To see Greg’s website visit: www.gregnordfelt.com

On Wednesday, Laura’s will share her perspective.

Where to Find Support

Support gearsWhen Mark was in a coma twenty-six years ago, the hospital provided a class once a week to discuss the effects of traumatic brain injury. Hating the position I was in and the information I now needed, I continued to drag my overwhelmed self into class every week. I wasn’t ready for the information, but I continued to go to the class and read the material they provided because I knew I had to know what might be ahead of us. I felt like I was just going through the motions, but it helped prepare me. Being with others who were in a comparable frightened state brought solace. Through our similar feelings and circumstances, empathy was found.

Months later at the rehab center there was a monthly support group, which Mark and I attended together. I felt comfort associating with others who were experiencing like situations. There is consolation when you realize you’re not isolated from society.

In the past, I hadn’t heard of a support group especially for caregivers, nor did I feel I had the time to participate in one. I knew there was a need, but finding the time is difficult if not impossible for some caregivers. That’s why I started Uniting Caregivers, which includes stories, tips and thoughts for online support.

My good friend, Laura Nordfelt, had a different vision. She saw the need to actually meet and strengthen each other by sharing experiences. She started Caring for the Caregiver shortly after I started Uniting Caregivers in October 2013. They meet monthly at Intermountain Medical Center in Murray, Utah and she’s done a marvelous job picking topics for caregivers. Laura asked me several times during the past three years to join forces since we are both passionate about supporting caregivers. I’ve given a few presentations to the group, but really didn’t know how I could add another item on my overloaded plate, even though it looked delicious and tempting to so.

This group meets at the same time the survivors do so I didn’t have to worry about Mark while I was at another meeting. I also belong to two writing groups; I enjoy the encouragement and information shared amongst authors. Support groups enhance my life and meeting face-to-face deepens relationships.

I decided it was time to juggle my schedule and join forces with Laura last November. I’m excited about the New Year and the presenters we have lined up and will share more of that information in upcoming newsletters.

Support-Stronger TogetherI still realize how hard it is for some caregivers to make time for a support group meeting. Since my mission is to encourage and help others realize they are part of a special society, I’ve decided to write monthly newsletters. I’ll share information and notes from the support group meetings I attend and list others around the Salt Lake Valley. I will include this newsletter on Uniting Caregivers. If you’d like to follow the blog, enter your email address on the website and receive notifications of new posts by email.

If you prefer just a monthly newsletter, please email Barbara@UnitingCaregivers.com. Type “subscribe to newsletter” in the subject line and you will receive a monthly newsletter with upcoming events and information on support groups.

March 2017 Newsletter <<<Click for PDF

What has been your experience with support groups?

 

Seizure Insights

Christine told about her sister’s seizures in Laura’s Story, part 2. Seizures are scary to witness, especially when you don’t understand what’s going on. I know because I’ve seen Mark have many. They look painful and leave him very confused and sometimes unresponsive. Mark’s first seizure was seven years after his traumatic brain injury (TBI) and left me with many questions and concerns. I found the short article below very informative.

What is a seizure? 

Reference http://www.epilepsy.com/learn/epilepsy-101/what-seizure

  • A seizure is a sudden surge of electrical activity in the brain.
  • A seizure usually affects how a person appears or acts for a short time.
  • Many different things can occur during a seizure. Whatever the brain and body can do normally can also occur during a seizure

What happens in the brain during a seizure?

  • The electrical activity is caused by complex chemical changes that occur in nerve cells.
  • Brain cells either excite or inhibit (stop) other brain cells from sending messages. Usually there is a balance of cells that excite and those that can stop these messages. However, when a seizure occurs, there may be too much or too little activity, causing an imbalance between exciting and stopping activity. The chemical changes can lead to surges of electrical activity that cause seizures.
  • Seizures are not a disease in themselves. Instead, they are a symptom of many different disorders that can affect the brain. Some seizures can hardly be noticed, while others are totally disabling.

The nature of seizures varies, because the lobes of the brain control different behaviors, movements and experiences.

Does just one or two seizures mean I will get epilepsy?

  • About half of the people who have one seizure without a clear cause will have another one, usually within 6 months.
  • If there is a known cause for your seizure (for example, brain injury or other type of known brain condition), then you are twice as likely to have another seizure.
  • If you have two seizures, there’s about an 80% chance that you’ll have more.
  • If your first seizure occurred at the time of an injury or infection in the brain, then you are more likely to develop epilepsy. Often, more seizures don’t occur until weeks or months after the initial injury or infection.
  • More seizures are also likely if your doctor finds abnormalities on a neurological examination (tests that are done in a doctor’s office to see how the nervous system is working).
  • An EEG test can look at the electrical activity of the brain and may help predict whether more seizures will occur. Certain patterns on the EEG are typical of epilepsy. If your brain waves show patterns of that type, you are about twice as likely to develop epilepsy.

In The Beginning

It has been too many years since I’d sat at a desk in a classroom, I thought while looking through the Adult Community Class Winter Schedule. My 2013 goal was to write a memoir about our experience surviving traumatic brain injury (TBI). It had been a story I wanted to write for twenty-two years, but didn’t know how to go about it. I knew I needed knowledge and help with this goal, so I was especially interested by the “Writing Class” listed on the schedule. I didn’t know how I’d make time for this class between my work and caregiving demands, but I signed up for it anyway.

I recognized the familiar echoing taps of my shoes as I rushed down the large empty hallway of Indian Hills Middle School looking for the classroom.  It should have only been a ten minute drive, but it took me longer because I’d never been there before and it was hidden in a subdivision unknown to me. I opened the closed door, late as usual and unsure of what I’d gotten myself into. As I hurried to find the closest chair, the teacher, Brenda Bensch, smiled and welcomed me to the class.

Embarrassed by my tardiness, I apologized as she handed me the outline for the next several weeks. Although I wasn’t getting a grade or any kind of credit for the class, I wanted to do my best. I felt overwhelmed by the schedule. How would I fit writing on top of all my other responsibilities? I stayed focused on my goal and stuck with it.

Not the most flattering picture of me, but the only one I have with my writing teacher, Brenda Bench (in the red) and favorite classmate, Susan Knight (in the blue).

Not the most flattering picture of me, but the only one I have with my writing teacher, Brenda Bensch (in the red) and my favorite classmate, Susan Knight.

That class and the next one in the spring influenced my life for the better and I have Brenda Bensch to thank for it. Some of her words of encouragement ring in my ears to this day. She taught if you want to be better at writing, you have to practice, just like anything else you do.  “Start a blog; write every day or at least three times a week.”  In my mind, I scoffed at the suggestion. There is no way I could make time to do that. I just want to focus on my book.  The more I wrote and had my chapters critiqued, the more I realized the importance of practice.

That summer Mark was hospitalized three times for blood clots. He got really weak so we spent twenty-one days at Rocky Mountain Care Center. While we were there, Mark’s occupational therapist, Jessica, suggested I start a caregiver’s support group. I thought, Where would I find time to do that? Jessica urged me by expressing the need, which she observed from other personal caregivers. “Your experience could be valuable to them.”

“Maybe I could start an online support group which could encourage and help other caregivers in the comfort of their own home and whenever it’s convenient for them.” Jessica loved the idea and just about every day for the duration of our stay she encouraged me to do it.

I work on a computer daily, but had no experience online. How do I create a website which could encourage caregivers? My talented daughter, Katie, designed Uniting Caregivers and taught me how to use it. I’m so grateful for her skills and patience with me in this endeavor.

My past writing experience has mostly been on a business level of composing demand letters for payments on delinquent accounts. Writing a book or an article is a very different style of writing and much more enjoyable I might add. I appreciate and I’m so grateful for my sister-in-law, Dianne, who proofreads every article and corrects my punctuation. She gives me the confidence I need to publish the article.

Today marks the second anniversary of Uniting Caregivers.  I’ve learned much about caregiving and caregivers through the story’s others have shared. Through my experience the past two years, I realize how therapeutic writing is. It has increased my understanding of others as well as myself. As I search for the right words to express my thoughts and feelings, I come to see things more clearly.

In the beginningEvery caregiver I see, I admire. They’re putting another’s need before their own wants. I feel their exhaustion and worry. I share their overwhelming responsibility and increased love for the person they care for. Without even exchanging words, I feel connected to them. I want to know about their story. How do they manage all they have to do? What keeps the love growing and resentment at bay? When would they have time to share their thoughts and feelings?

I’ve greatly benefited from this experience and appreciate you as a reader or a guest author. If you’d like to share your story, I’d love to publish it on Uniting Caregivers. It may seem like a daunting task, but I’ll help and support you any way needed. Your experience will be valuable to me and to others. We are in this together, encouraging and inspiring one another.

Greg Nordfelt’s Story

Laura & Greg

Image credit: Greg & Laura 2011

One of the benefits of my caregiving journey is the people I meet and have the privilege to rub shoulders with. I met Greg and Laura Nordfelt at the 2013 Annual Brain Injury Conference. Immediately, our hearts connected when they shared their story with me. The circumstances which caused Greg’s traumatic brain injury (TBI) were different from Mark’s, but the feelings and experiences with therapy and the fight to return to a familiar way of life are very similar. They agreed to let me share their story on Uniting Caregivers in March of 2014, Greg and Laura Nordfelt’s Story. We have kept in touch over the past two years and I’ve enjoyed my friendship with them. Watching this couple grow and seeing the amazing outreach they both give to others inspires me. Thursday, September 17, 2015, Greg shared more of his story with Channel 4 News. With their permission, I share what Laura writes and the Channel 4 News interview.

“I am so proud of Greg Nordfelt and this interview on Thursday with Channel 4 news. Most of the recording ended up on the cutting room floor, but what showed was a glimpse of what he has been through in the last 4 years with his recovery process. More than all of this is the amazing job he has done volunteering with the TBI patients since then at TOSH, who meet twice a week working through their aphasia issues. On top of all this, three weeks ago he started volunteering at Intermountain Medical Center (IMC) on the very floor where he learned to get his life back with Physical, Occupational and Speech Therapy, giving hope to TBI patients and their caregivers. This is my sweet, giving and incredibly loving husband. xoxoxo .”

http://www.good4utah.com/news/local-news/new-study-provides-better-treatment-for-traumatic-brain-injury-patients

Greg & Laura

Image Credit: Greg & Laura 2011

I appreciate the inspiration Greg and Laura give to everyone who knows them. I am grateful for the awareness of TBI they spread by sharing their story. Together they are a powerhouse and are making a positive difference in our community. I can’t wait to see what they accomplish next. They are wonderful and I’m blessed by their friendship. Ride on Greg and Laura!

A Remarkable Experience

Beauty-GardenI love this time of year and the message Easter brings. One of my favorite articles I’ve written was posted on Easter Sunday 2014, He Lives. I decided to repost parts of it today, because it’s a marvelous, comforting experience worth retelling.

The spring season is the transition from winter to summer. It’s a time of growth and renewal of life, when plants and trees which have been dormant for a season regain life and begin to bud into a lush, green, beautiful plant. The timing is perfect for the event of our Savior’s resurrection. Springtime is usually my favorite, however, in 1991 it was a lost season because Mark literally slept through it in a coma after our horrific car accident.

I was grateful Mark appeared to be in a safe and sheltered place, unaware of the hospital surroundings, while I struggled to hold myself together. Helpless to make Mark better, I sat next to his bedside in the Intensive Care Unit at MacKay Dee Hospital in Ogden, Utah. My right arm was in a sling and I wore a brace for my broken collarbone, but I hardly noticed the pain—it was nothing compared to my broken heart and worry. Mark, lying perfectly still and quiet, wasn’t bothered by the loud noises from the monitors or the shunt inserted at the top of his head, draining excessive fluid from his brain.

During the long three months Mark was comatose I wondered, where is he? I could see his body, but often his spirit felt absent. Peace radiated from him and I felt a glimpse of heaven in his presence. What will he be able to tell me when he’s conscious? I was certain it would be something special. I longed to hear his voice. There were some days when I felt his company for a short time and on a few better days our spirits were able to communicate through thoughts. I would talk to him and hear his reply in my mind or feel his comfort. It was an impressive, angelic form of communication and I cherished those moments, but I had no control over when or how it would happen.

Mark’s ability to regain consciousness was a slow and gradual process which took several more weeks. At first he would occasionally answer yes or no questions by blinking his eyes once for no and twice for yes. We tested him often with obvious questions. As he improved he would whisper a word or two. One day I showed Mark a picture of Christ and asked him if he’d seen Him. He quietly said, “Yes.” Months later when he could talk in sentences he told of his experience, which he has now written down.

“Just before waking from my coma, I thought I was walking the length of a long white hallway. Standing at the far end of the hall was another man about my same height. I say this because neither of us had to look noticeably up or down to look directly into the other’s eyes. He had a full head of pure white hair longer than shoulder length, and a pure white beard that was chest length. I presumed that man to be Jesus Christ. Thinking I had died and would be in His proximity for eternity, I walked up to within a few feet of Him and stopped. I asked for the location of Heavenly Father. He then pointed up and over His shoulder with His thumb toward the door behind Him and said, ‘In the next room.’ I reached around Him and opened the door. Before seeing anything in the next room, I awakened from my coma. I wish I’d known then how short that meeting would be; I would’ve liked to have spent more time with Him.”

As Mark related this experience to me, I knew it was true. During his months of unconsciousness, I knew he was in a special place feeling peace and contentment. I believe there’s more to his experience than he remembers and appreciate the comfort this memory brings to him. It brings comfort to me also; not only does it reassure me that Christ is real and knows each one of us, but I believe that the doors were Mark’s choice and the door he chose brought him back to me. He loves to relate this experience to whoever will listen. Remarkably, he tells it using the same words. Since his TBI, Mark has short term memory loss, meaning he can’t remember who he’s told or the words he used. Nevertheless, he uses nearly the same words each time. This confirms to me that Mark’s experience was real and he was given the memory of it and the words to share it, not only to bring comfort to himself, but to touch the lives of others.

By this experience and others, we know Christ lives! He is resurrected. We will return to His presence, where joy, peace and comfort will be found. We were blessed to survive the shocking car accident and we were blessed again by this marvelous experience. We share it along with a beautiful rendition of our favorite hymn in celebration of His resurrection. Happy Easter!

<p><a href=”http://vimeo.com/29685920″>I Know That My Redeemer Lives</a> from <a href=”http://vimeo.com/user8691070″>INTO THE LIGHT Journal</a> on <a href=”https://vimeo.com”>Vimeo</a&gt;.</p>