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.

Embracing Life Challenges

Therapy isn’t fun, but the progress and inspiration I get from other patients encourages me. Last week I met JR. He’s a recent amputee who is embracing his new life challenges. I told JR about Uniting Caregivers and asked him if he’d allow me to share his story. He graciously agreed to let me interview him.

I took a seat in the large, open sitting room just as you enter inside Rocky Mountain Care in Riverton, Utah. This area is a popular place for the in-patients to read, do crossword puzzles or chat with visitors, so we found a quiet corner by the grand piano looking towards a fireplace which wasn’t lit due to the unseasonably warm November day. The home-like atmosphere makes this place comfortable, but I have to admit, I’m glad to be here as an out-patient.

JR is sitting in a wheelchair wearing a white T-shirt with dark blue, bold letters which say, “I’m retired. Do it yourself!” I told him I look forward to wearing a T-shirt like that someday. He told me he bought it in California as a statement to his grown children. They brought their kids for him to watch every day after he retired from a newspaper printing company in 2011. “Don’t get me wrong, I love my grandchildren, but I had just retired and wanted time to do some things which I couldn’t do before retirement.”

I nodded and told him it made sense to me.

“You know you never retire from family. I wouldn’t want to,” he said as he shrugged his shoulders. “It’s just every day that made it too hard.”

I asked JR what diagnosis brought him here.

“Well, in 2001, I was diagnosed  with type 2 diabetes. It progressively got worse and by 2011, I couldn’t drive anymore because I didn’t have feeling in my feet. I couldn’t feel the gas or brake petal. I could step on a tack or staple and not feel a thing. I couldn’t feel items on the outside of my feet, but inside, my feet were very painful.”

“That sounds awful,” I said.

“Yes, and it partly led to my retirement, but the hardest part was I’ve always been an outdoor person. My feet problems made camping or driving ATV’s hard. I finally bought a Jazzie to save my feet and to use it to motorize when I’m outdoors. I also have a manual wheelchair for when I would go out to Village Inn or do other activities. I like to use that chair when I’m indoors.”

“Aren’t wheelchairs great,” I added. “My husband needs an outdoor and indoor wheelchair too.”

JR nodded in agreement.“They allow me some independence and I knew this was coming,” he said as he glanced down at his gray sock which covered his shortened leg. Later he told me the compression sock which covers the ace wrap around the newly cut leg is called a “shrinker.” It decreases swelling, which is critical for the proper fitting and use of an artificial leg.

“What happened,” I asked.

“I got an ulcer in my ankle. The open sore failed to heal even after weeks of being on a heavy duty antibiotic through an IV pic line. On week four of fighting the infection I had surgery to clean it out. Week eight they did an MRI which showed the infection had gone into the bone. On week nine my skin actually peeled when they unwrapped my leg. My toe was black. The infection had moved down into my foot and toes. That’s when the decision was made to do an amputation,” he said in a matter-of-fact way.

“I’m sorry,” I said. “I’ve heard it’s harder to heal when you have diabetes.”

“Yes it is. I fought the infection for about three months. The doctor called it gangrene and recommended amputation.”

September 1st they did the first cut on his right leg and he was scheduled for a second surgery six days later. On that sixth day he was feeling pretty good and thought he could get to the bathroom on his own. Unfortunately, he fell and broke his left hip. Instead of surgery on the amputated leg that day he had a titanium rod placed in the left femur, which was secured with two screws into the broken hip. The following day he had his second surgery on the right leg. In an eight day period of time he had three surgeries. After twenty-one days of hospitalization he was taken to the care center on a stretcher for rehab.

“The first week was torture. Not because of the amputation, but because of the broken hip. I worked hard and have done more than they’ve asked me to do. The hip has been the most painful.”

jrI first met JR on Halloween. My therapist said, “You have to meet JR, he’s a great example of embracing life challenges.” She wheeled JR into the room. I had to smile as she introduced us; he was dressed like a pirate, complete with a wooden branch for a peg leg.

I told him he looked great and we both laughed. I thought his jolly disposition along with his long white beard and hair made him also a good candidate for Santa Claus. He later told me about the trick-or-treaters who came that evening. One boy asked him what happened to his leg. His father seemed embarrassed and hurried him on to the next bag of treats. Another boy also asked what happened, but this time JR was given the time to respond.

“I was in a sword fight and lost my leg. Boy—did that boy’s eyes get wide,” JR said with a mischievous smile. “I imagine his dad had some explaining to do later,” he chuckled.

JR and I discussed how this incident reminded me of many conversations we’ve had through the years where children ask questions about Mark being in a wheelchair or why he talks the way he does. Some just bluntly ask, “What happened to you?” Or simply state, “You talk funny.”

“Some parents are so mortified they turn away and rush their child away from us. This actually makes us feel more awkward. Parents don’t need to be embarrassed. We understand Mark looks and sounds different than most,” I said.

JR agreed and added, “I’m not ashamed of my missing leg. I didn’t do anything wrong. It is what it is.”

JR shared his goals and timeline with me and said he should have his artificial leg on November 28th. He also has some work to do at home, especially modifying the shower because he won’t be able to stand to shower. He’s working on those arrangements as well as his rehabilitation.

“I want to be independent and I can be with modifications. I know there will be some limitations, but I can work around those. I came in on a stretcher, but I’ll walk out of here.” Then he added, “Hopefully before Christmas.”

Thank you, JR, for sharing your story. I really appreciate your example of embracing life challenges. Best wishes to you and your family as you make the transition home. It’s been my pleasure getting to know you and I won’t forget your example along with others at Rocky Mountain Care who have made my shoulder rehabilitation more pleasant.

There’s No Place Like Home

Nestled in the gorgeous Wasatch Mountain range is the beautiful Sundance resort. For the past several years my brother Steve has pampered us along with our parents and other siblings to a delicious dinner and outdoor theater tickets. Just a few days before Mark’s surgery in July, we found peace and entertainment surrounded by the huge pine trees as we enjoyed the Wizard of Oz. The storyline and music were perfect timing for the turmoil ahead. A few tears streamed down my face as Dorothy sang, Somewhere Over the Rainbow. The promise of blue skies, dreams coming true and troubles melting like lemon drops gave me hope for a brighter future. I’ve reflected on the story often through Mark’s recovery.

In the classic story written 77 years ago, of Dorothy and her dog, Toto, being caught in a tornado’s path which took them to the magical Land of Oz where life is strange, but beautiful. Wishing to return home, she is helped by the Good Witch of the North, but in trouble with the Wicked Witch of the West. She follows the yellow brick road to Emerald City where the great wizard lives in hopes he can take her back to a familiar way of life with the people she loves. In her travels she meets a scarecrow who wants a brain, a tin man who yearns for a heart and a cowardly lion who desperately needs courage. They all hope the Wizard of Oz will help them before the Wicked Witch of the West catches up with them. There are many twists and turns in their journey to meet the wizard who everyone says can help Dorothy return home and grant her new friends their wishes for a brain, heart and courage.

It’s common to hear in the halls of a rehab center, “I want to go home.” I’m quite sure it is the sentiment of most patients and the motivation for everyone who works hard in therapy. Some landed in rehab after surgery, while other storms such as a stroke, illness or loss of limb brought them there. All have left the comfort of their home in an effort to improve or save their health. The physical condition cyclone has taken each of them to a life that’s strange and unfamiliar. It’s made beautiful by a caring environment and other patients who understand the pain and share the goal of recovery. Wishing to return home, each is helped by good doctors, nurses, aides and therapists. The patients follow their advice like Dorothy followed the yellow brick road in hopes to get the help they need to return home. In real life there’s no Wizard of Oz who can magically get you home with all your goals achieved. Instead it takes persistent and painful work. Just as the scarecrow, tin man and lion found out, most patients learn from the journey they have within them what it takes to obtain their desire.

Dorothy was right, there’s no place like home and on Friday we were finally able to return. There is nothing more restful than sleeping in my own bed. However, I appreciate wonderful places like Rocky Mountain Care when we’re not capable or safe to be home. I’m filled with gratitude for therapists who work a bit of magic with their knowledge, and a caring staff that is all heart. I value the friendships we made there and am motivated by their life stories and courage. The environment there is very different from home, but it’s made beautiful as people improve and friendships form.

It’s hard to say goodbye to people we may never see again, who have inspired us in our lowest hours and have been with us daily in the pain and success of recovery. We return home changed by our experience and blessed by many people’s influence.

I am grateful to Steve for a wonderful annual summer tradition and for this years play which reminded me that Somewhere Over the Rainbow, skies truly are blue.

Put Your Shoulder to the Wheel

2015,  My Dad

“I just need to work it off,” Dad says whenever he has an illness or any physical trial. He grew up on a farm and made his living working construction, so work for him has always kept him physically active. He’s a talented heavy equipment operator, but has never shirked from digging with a hand shovel if needed. My parents taught me how to work at a young age. No excuses were ever accepted. My dad still goes to work every day operating equipment and some days when they’re short-handed he’s also found with a shovel doing the hand work. He’s amazing and willing to do whatever it takes to get the job done. Dad believes work will cure whatever ails you. I’m proud to be his daughter.

Work for me is sitting at a desk in front of a computer. Tapping my fingers across the keyboard or calculator as fast as I can isn’t much of a workout. I have to intentionally exercise to be physically active and I haven’t been able to do much of it lately. I’ve noticed my mood isn’t as pleasant as it should be and I don’t feel as well as I do when I exercise or can spend time outdoors hiking, biking or gardening. I’m missing my Vitamin D and unfortunately, summer ends in a few short weeks.

I shouldn’t complain because I’m surrounded by people who have physical challenges that make it difficult to be active. A few are like Mark and it’s impossible to do exercises on their own. At the rehab center most are concentrating on therapy to build strength and improve coordination.

I’ve notice a few people which resist therapy. I’ve heard a few say they don’t need it or give excuses to get out of it. Others push themselves with exercise and hope the insurance company will prolong the benefit because they feel the improvement. I suppose it all depends on the circumstances and their pain tolerance, but it’s evident to me that the ones who push themselves are the happy ones.

“You’ll be surprised what you can do when you put your shoulder to the wheel,” is a phrase my dad said to me often. “If we all put our shoulder to the wheel we’ll get this job done in no time. Many hands make light work,” are the encouraging statements I grew up with. I can’t sing “Put Your Shoulder to the Wheel” without thinking of Dad. If you haven’t heard it, here are the lyrics:

  1. The world has need of willing men
    Who wear the worker’s seal.
    Come, help the good work move along;
    Put your shoulder to the wheel.

(Chorus)
Put your shoulder to the wheel; push along,
Do your duty with a heart full of song,
We all have work; let no one shirk.
Put your shoulder to the wheel.

  1. The Church has need of helping hands,
    And hearts that know and feel.
    The work to do is here for you;
    Put your shoulder to the wheel.

(Chorus)

  1. Then don’t stand idly looking on;
    The fight with sin is real.
    It will be long but must go on;
    Put your shoulder to the wheel.

(Chorus)

  1. Then work and watch and fight and pray
    With all your might and zeal.
    Push ev’ry worthy work along;
    Put your shoulder to the wheel.

(Chorus)

Text and music: Will L. Thompson, 1847-1909

What does put your shoulder to the wheel mean? The metaphoric term, alludes to pushing a heavy handcart as many pioneers did. The dictionary states: “To apply oneself vigorously and make a concentrated effort.” I’m inspired by those who do. .http://idioms.thefreedictionary.com/put+shoulder+to+the+wheel

Last week while I was visiting the new Neuroworx, Dr. Dale Hull said, “there are some sad stories here of people and their struggles, yet this is a happy, positive atmosphere.”

“No surprise to me,” I said. “In our years of experience, I’ve noticed people are happy when they are striving for self-improvement.”

I try to imagine what it’s like to be trapped in a body that can’t function like most of us do, with ease and with little thought. How shattering it must be to lose abilities you once took for granted. It must be disheartening to see others move freely with capabilities you were never given. The world has need of willing men and women who wear the workers seal. I’m so grateful for those who come and help the good work move along by putting their shoulders to the wheel. I appreciate many who do their duty with a heart full of song. I’m inspired by the need for helping hands, with hearts that know and feel. The work to do is here for me and you, so lets put our shoulder to the wheel.

It’s a proven fact that exercise is good for us physically and mentally. It doesn’t matter what your age or limitations are. Everyone benefits from being as physically active as possible. It’s why I work and watch and fight and pray with all my might and zeal. Therapy for Mark is a worthy work which needs to be pushed along. If it isn’t, he suffers with blood clots and joints that calcify and are no longer able to function. Some days I wish I could stand idly looking on, but the fight for improvement is real. It will be long (a lifetime long), but must go on because it’s better than the alternative.

I’m trying to do as I’ve been taught. Working energetically towards a goal. I realize we all have work and I don’t want to be the one that shirks.

I was raised with the philosophy that work cures whatever ails you. If it can’t cure you, at least it makes you feel better. I’m grateful for a mom and dad who taught me this valuable lesson.

Hidden Blessings

Everyone can benefit from the encouragement of a promoter and believer in their abilities. I’m grateful for the activists in my life and therefore try to reciprocate by being supportive of others, especially Mark. Being his advocate is a responsibility I take seriously. I’ve witnessed the difference it makes not only in ours life, but in other’s lives as well. It boosts one’s drive to improve and changes their therapy and even the care they receive. Likewise, therapists and professional caregivers buoy up when they know there is a supporter on board. Being an advocate can feel heavy at times and weighs me down, but I see the blessing of improvement which comes from it.

Surgery or illness always brings more caregiving involvement due to the strength loss it brings and for Mark, another issue is his speech. Many people don’t take the time to understand him or they feel awkward when there is miscommunication. Some people are embarrassed to say they couldn’t grasp what he was saying. Mark realizes his speech is impaired and he is not upset by having to repeat himself. He’d rather do that than to be ignored or have someone not comprehend what he’s saying. With uncomfortable and pleading eyes others often look to me to interpret what he just said. Therefore, I feel the need to always be by his side to love, protect and encourage others to understand him. I see the blessing the blessing that comes from communication and when others get to know Mark’s fun personality.

I get lots of advice about what I should or should not do and I have to remind myself it’s generally coming because that person cares about our well-being. Some people think the level of dependency is unhealthy and wrong, while others praise the assistance. Ultimately, I’m just doing what I feel is best, which isn’t necessarily what I prefer to do. As most caregivers know, it isn’t about me. One of the blessings in all this is as I help Mark, my love for him grows and when I come to his aid with the right attitude, it becomes an honor to do so. Not all people can be caregivers, but I’m fortunate to have the health, strength and support which enables me to do so.

This year has brought some unusual difficulties in my caregiving journey. Starting with my large hernia, which was an easy fix with the obstacle being the six-week recovery time and finding someone dependable to care for Mark. Originally, I was in hopes to have my surgery right after Mark had his hip surgery. I thought it made perfect sense for me to recuperate while Mark was in the rehab center. Due to complications, Mark’s hip surgery was postponed and my recovery plan was ruined. Thank heaven for family and friends, especially a daughter who was willing and capable of moving in for the recovery time. It turned out to be a great blessing for all of us, bringing us closer together as we worked through those weeks.

After my recovery, Mark was approved and scheduled to have his surgery. Less than a week before the long-awaited date we were informed he would have to go a larger facility with an ICU due to the risk of complications. It became more frustrating when we were told the surgery date was now uncertain because they weren’t sure when they could fit the four-hour surgery on the bigger hospital’s schedule. Another hurdle was the surgeon wouldn’t start the surgery late in the afternoon. We anxiously waited until the day before surgery to get word whether Mark could be fit in or not. Fortunately the surgery was able to take place on the original scheduled date and having it done at the larger hospital proved to be a blessing. Mark needed one radiation treatment to hinder the excessive bone growth from recurring. This hospital has an oncology center so Mark didn’t have to go far the day after his surgery for the treatment.

I was disappointed when I learned Mark’s insurance plan wouldn’t allow him to go to the rehab center of our choice. I appealed to the insurance company and the doctor wrote a recommendation for an acute rehab center. There was no persuading the insurance company. Saddened by their decision, I searched for an alternative. I learned that not all rehab centers allow a family member to stay overnight with their loved one. I understood their concerns, but for our situation, I couldn’t abide by the rule. Although Rocky Mountain Care discourages overnight stays, they do allow it, so here we are. Another benefit of this place was that Mark had rehab here two years ago after three hospitalizations for blood clots. The admitting personnel and rehab coordinator were familiar with us. It has proven to be another blessing that we are here. We love the therapists. They work hard to help Mark gain improvement. We appreciate their knowledge and the equipment available. The in-house doctor, nurses and CNA’s are helpful. It may not have been my first choice, but I believe he is getting the best care possible.

isaiah-55-8-9Some days it feels like I’ve had more than my share of things not turning out the way I’ve planned, hoped for and worked diligently towards. However, when I look back on the end result, I realize it worked out for the best. I’m feeling fortunate as I recall these hidden blessings and realize there are many who support us. I’m grateful for each one of you and especially for our greatest advocator. He pleads for us and knows what is best.

The Value of Testing

Rehab GymAs Mark’s physical health stabilized and his awareness consistently improved, his daily therapy sessions became a test to find out what he remembered and what he needed to relearn. The physical therapist, Sharon, didn’t just do range of motion exercises where she did all the stretching, but now tried to teach him how to move his own body. The occupational therapist, Cheryl, and speech therapist, Kris, worked on simple math, reading and writing skills. Evident from the beginning, his long term memory was good. He remembered not only family and friends, but employers and events from his past. However, remembering what happened the day before or even just hours earlier in the day was poor. The therapist gave him a notebook and instructed him to write what he had worked on after each therapy session. In the next session, the therapist asked him about the previous therapy. When he couldn’t remember what he had done, they reminded him to check his notebook.This occurred in all six therapy sessions each day in hopes to improve his short-term memory.

The tilt table was as unpleasant as any test could be for Mark. After transferring him onto the padded table, Sharon positioned his feet so they rested on the footplate. Safety belts strapped his body to the table to ensure he wouldn’t slip off. Sticky patches (electrodes) were placed on his chest, legs and arms and were connected by wires to an electrocardiogram (ECG or EKG) machine, which monitored his heart rate. A cuff was wrapped around his arm to check his blood pressure. While pushing a control button, the table slowly moved from a horizontal to a vertical position. His heart rate and blood pressure regulated the degree Sharon would angle the table in each session. If his blood pressure dropped or there were prolonged pauses between heartbeats, she slowly returned the table to a horizontal position. It took several therapy sessions before Mark could tolerate going from lying flat to a head-up position. Once he could endure the vertical position, Sharon extended the length of time being upright from five to forty-five minutes over the next few weeks. She vigilantly monitored Mark and I always felt like he was safe. However, it appeared to me he felt unsafe, possibly confined or maybe light-headed because he despised the tilt table. When I asked him why or what was wrong, he said, agitated, “It’s just a waste of time!” While in the upright position, he often lashed out at the therapist, “Get me out of this senseless contraption,” or he’d demand I take him home.

When Cheryl and Kris gave Mark simple math problems and he correctly answered, my heart soared like a kite. He could read children’s books with little difficulty, but Mark had double vision, which made it nearly impossible to read the small print in adult books or a magazine. After reading a couple of paragraphs to him, the therapist questioned him on the content and he’d have trouble remembering what they had read. Mark seemed frustrated and/or embarrassed. My heart dropped into a dark hole as I remembered his perfect grades in college and the pride I had the previous year as he passed the ultimate test and earned his Electrical Master’s License. I wanted to give him the answers and save him from the humiliation. Other times it appeared he had the correct answer on the tip of his tongue, but the words came out wrong. Knowing he’d given the wrong answer, he struggled to find the right words to correct it. Irritated and impatient with himself, he’d say he was useless or felt inadequate. By the end of his daily therapy schedule he’d be exhausted and discouraged. It definitely was the hardest and most painful work he had ever done. The brightness of the day came at night when I’ brought the kids for a visit. They didn’t ask him trivial questions, or expect him to do hard and painful movements. They loved him unconditionally and were pleased just to see him awake and have him close to home. Every night they filled his empty cup with love and encouragement, which helped him get ready for the next day’s drain.

Mark was anxious to come home and nearly every night he’d make a comment like: “You need to take me home with you.” or “This is not a good place to be, please get me out of here.” Another night he said,“You need to take me far away from here. They ask silly questions.” One night he recited our home address and told me specifically, “That’s where you need to take me!” I was happy he remembered our address. I understood his longing to be home, to return to familiar surroundings and a normal way of life. I had the exact same yearning. Our house didn’t feel like home without him, but I silently worried about the future. How long would we have to deal with this new way of life? When would Mark be able to come home? How could we speed up this rehabilitation program? My biggest question: What changes did I need to make to improve this situation?

Learning how to transfer Mark in and out of his chair was the first answer that came to mind. It took two aids to do that. Could I learn to do it by myself? I went to the hospital library and checked out a how-to-video on transferring. That night I watched it and the next morning I told Sharon I wanted to learn how to transfer Mark. She demonstrated how she positioned her feet in front of Mark’s, pressing her knees on his legs. Her arms stretched over his shoulders with her hands reached under his arms. Using her body leverage she pulled him forward and up towards the chair and then set him down gently. I felt confident and anxious to try it, so I did and to my relief, I didn’t drop him. From then on we no longer had to wait for the aides to help Mark, which made us one step closer to getting him home.

A New Routine

Wouldn’t it be nice if we had a crystal ball and could see into the future? It would make decisions and choices so much easier if we knew ahead of time what the outcome would be. The feeding tube was an answer to prayers for Mark’s improved health. If I would have known the difference it would make, I wouldn’t have given the feeding tube a second thought. With better means of nutrients came more frequent and longer episodes of consciousness and alertness. I continued to play Mark’s favorite music along with cassette tapes with voice messages from his mother and sisters from out of state. I read and talked to him, assuming he understood everything I said. He continued to have speech, occupational and physical therapy every day. While Mark was becoming more aware of his surroundings, I was learning how to talk and encourage him. We were growing together in new and unfamiliar territory.

Mark with Christopher and Katie 1991 Just a few days after waking from his coma.

Mark with Christopher and Katie 1991
Just a few days after waking from his coma.

Christopher and Katie were developing in this different world also. They went with me nearly every evening to visit their dad and reassured him of their love through hugs and kisses. Mark was unable to hug and kiss them back, but that didn’t seem to discourage them. One evening after we left, Mark told the nurse he needed to work hard because he had two kids that needed him. They inspired him to exertion.

Three weeks after the feeding tube was placed, Mark passed his swallow test. He was able to eat yogurt, Jell-O and pudding, which made eating dinner with him more interesting. The kids cheered him on as he learned to chew and swallow as I fed him the food. After our meal, we’d push Mark in the wheelchair to go outside to enjoy the nice summer evening air and we watched the kids play on the green lawn. Often I would question Mark about the colors around us in the sky, ground or of the ball the kids were playing with. Usually he got the color right. One night near the end of July I started singing with the kids some of our traditional campfire songs only without the campfire. To our pleasant surprise Mark joined in. He didn’t sing every word, but I knew he was following along in his head because every few words he’d say with us.

On the wall near the clock was a paper with the month and year on it. Another paper told the date. To help keep him oriented, the nurses and therapists asked him often about the date, time and year. If he couldn’t recall, he soon learned where to look to find out and hallelujah, he remembered how to read! Also on the wall was a lined piece of paper for the visitors to write their names and the date of their visit. Some would write a brief note of encouragement or an improvement they noticed. The therapists and I would use the information to remind Mark of what went on during that day or the night before.  Every day his alertness grew and we were encouraged.

Since we were so close to home, Mark received visitors nearly every day. Family and friends were a great source of support and comfort. Mark’s mother and sister, Jerrie, flew in from Washington State for a few days. Jerrie brought her wedding photo album from eight months before. Mark could name family and friends in the photo album.  What a relief to see he remember every person who came for a visit. Sometimes he’d get confused, but usually it was just his short-term memory he struggled with. His responses were delayed, with only a few short words, but we were thrilled to be able to converse with him.

On Sunday’s I’d take the kids to church and after Sacrament Meeting, while the kids were in Primary, I’d drive to Western Rehab to take Mark to the Sacrament Meeting there, then drive back to church to pick up the kids from Primary. On Sunday, August 4, 1991, I wrote in my journal, “Pay day – Mark said, ‘I appreciate you and all you do for me and the kids.’” He not only comprehended, but was grateful for my efforts.

A few days later when my brother Steve was visiting, Mark said, “I want to talk about your sister.”

Steve asked, “Which one?”

“The one I take care of, Barbara.”

“What about her?”

“She works hard and is always busy.”

This was particularly meaningful because Steve was also one of my employers. It appeared not only did Mark recognize family and friends, but remembered their connections. He was aware of my busyness. Every simple realization and improvement was a step in the right direction.

There was a large sitting room at Western Rehab where family and friends could gather to visit. In the corner of this room was a piano. My oldest brother, Mick, along with his family, would often come to visit on Sunday evenings and he would play the piano. Other patients gathered there with us to enjoy his playing and the encouragement his music brought. Once his talent was known, patients or staff would asked him to play whenever he came to visit. The entertainment was always a welcomed distraction from the pain and hard work of rehabilitation and the loneliness of not being home.

My sister, Rosanne, and her family put together a few musical programs to perform for us and any other patients who wanted to come to the sitting room. Usually a good crowd was there to be lifted up by the sounds of my brother-in-law, Klint, at the piano, Rosanne on the cello or flute and their five children, age’s five to fourteen, all on violins.  Everyone in attendance enjoyed the entertainment and the healing power of music.

I am grateful for our family and friends who turned what could have been the dark days of rehabilitation into sunshine. However, there is no place like home and as the summer was coming to an end, I longed to bring Mark home.