How to Recognize Angels

In Laura’s Story, Part 5, by Christine Scott, she remembers the angels in their lives who came to their aid after the death of her father. We often think of angels as beautiful beings with wings, but Christine was referring to family, friends and even strangers who helped them through a difficult time. A friend of her father sold equipment and hang gliders and put collection jars around town to raise money for their family. An aunt single-handedly packed up their belongings to help with the move and grandparents who welcomed them to live in their home.

These were angels who walked among them on earth—real people with mortal bodies. These wonderful people seemed to be sent from above and knew just what was needed at the moment. How can we recognize the angels in our lives? The answer is simple: acknowledge the kindness and help given to you. Those people who have made a positive impact in your life. I’ve been thinking about it and have listed a few.

• Our biggest angels are parents. They brought you into the world and most of them sacrificed time and money for your care and well-being. They spent sleepless nights when you were sick or out too late. They were your advocates in sports, music and/or drama. They were your cheerleaders in school and other activities.
• Our littlest angels are children. They are pure and wise beyond their years. Their innocence and curiosity gives us a new and delightful outlook on things which are often taken for granted.
• Friends who are honest and loyal and lift you up when you’re feeling down.
• Teachers who taught you how to read, write and do arithmetic. Most have angelic patience and without their help, you wouldn’t be able to read this right now.
• Doctors and nurses who attend to your medical needs and help you feel better.
• Therapists who help you overcome hardships and improve your abilities with their knowledge and encouragement.

We can all be angels by lending a helping hand. As we appreciate and recognize the good in others, more angels become apparent.  When I think of the angels in my life, I realize they all have at least two things in common. First of all they are thoughtful and caring and second, they don’t always seem like angels. But how can they? They are people with mortal bodies and not perfected yet.

It reminds me of a “standing joke” Mark and I have. When I help him stand up I often say, “Look up at my halo,” to encourage him upward. To that he replies, “Oh there it is, resting on top of your horns.”

It’s true, sometimes I’m sweet and sometimes I’m not. However, by recognizing and appreciating the helpfulness in others, it usually triggers more kindness.

Who are the angels in your life and why?

There’s No Place Like Home

Image credit: http://www.sundanceresort.com/summer/

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.

Image credit: http://www.sundanceresort.com/summer/

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.

Current Situation

I’d be willing to bet every caregiver has had to make a difficult decision concerning their loved one’s health and it’s hard to give thanks for all of it. For the past several months we’ve been struggling with what to do about Mark’s hip pain and the lack of movement in them, which makes every transfer tough. Because he can’t bend his hips at 90 degrees, his sitting posture is poor, causing spine and neck issues. We finally concluded that the situation isn’t going to get better on its own and without a total hip replacement his general health will decline. With his osteoporosis bone loss he has a risk of a hip fracture, which is why this decision for a total hip replacement has been difficult. Also, his muscles need to be strong enough to hold the hip replacement in place, which is an additional risk. When we weighed the risks against the probability of decline in his movement if we don’t go forward with the surgery, the scale tipped slightly in favor. Therefore, next month Mark is scheduled to have his right hip replacement done and in October he will have the left hip done. He will have a three day hospital stay and three weeks in a rehab center. This year will have major medical expenses, but we can give thanks to a skilled orthopedic surgeon, nurses and therapist who we put our trust in for his care. I’m sure there will be more lessons to be learned from this journey. I hope we will be a quick study.

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.

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.

Closer to Home

by Katie, May 1991. One month after her 7th birthday. A picture of Katie and Christopher. Our cat, Spook in a picture on the wall. She expressed her biggest fear, “I hope you will remember us.”

Mark’s neurologist explained that it’s difficult for any physician to predict the outcome of traumatic brain injury. Along with family members, they have to “wait and see” how the patient progresses. They encouraged me to bring Mark’s favorite music and surround him with familiar people and things.  After meeting each one of the therapists assigned to work with Mark, Mom drove me home.  What a huge difference it made having him only 2.3 miles away. What used to be an hour drive to see Mark now took five minutes. This relieved the pressure of feeling like someone needed to be at the hospital at all times. Knowing I could get there quickly in an emergency lightened the stress. My dad, brothers and brother-in-law would no longer need to take turns spending the night at the hospital. I will be forever grateful for the weeks they did so.

May 1991, Christopher’s drawing of the swing set Mark built for the kids

I picked up the kids from the neighbor’s house and they gathered pictures they had drawn and colored for their Dad over the past seven weeks with get well notes to him. They were excited to decorate his room with them. Christopher put his prized pinewood derby car in a bag, along with the first place trophy he had won the week before. I packed up some family pictures, clothes and dinner for us to eat in Mark’s new hospital room. We were all anxious to be together again as a family and we went there with the intention of making Mark’s hospital room feel like a second home. Our excitement made the memory of their fearful first visit disappear.

At the hospital, the kids helped me tape their pictures on the salmon colored walls and closet door right in front of Mark’s bed. I put framed school pictures of the kids and some family pictures on the shelves above the drawers. We hoped these pictures would be the first thing Mark would see when he opened his eyes. While I placed underwear and socks in the drawers, I encouraged the kids to read to their Dad, which was the nightly routine before the accident. I hung a few pullover shirts and sweat pants in the closet before taking a seat in the room. There was a small, round table with only two chairs in the room. I asked  the nurse if I could bring in one more chair from the recreation room so we could each have one. The three of us sat around the table and we ate our first meal by Mark’s bedside. It felt so good to all be together again and the kids seemed to be happy to see their dad. Christopher pulled the pinewood derby car and trophy from the bag and set it on the night stand next to his dad’s hospital bed. A touch of home was now in the room. We knelt by his bed and said our prayers with him before leaving the hospital. This became our nightly routine which enabled me to sleep better than I had in the previous seven weeks. Having Mark so close to home was indeed a big blessing.

Struggling to understand this complicated condition, I made sure I was at the hospital every morning for Mark’s therapies. On my way, I would drop the kids off at the neighbor’s home or my parents would take them to their home or their cousin’s home to play for the day. Before dinner, I would pick up the kids from wherever they spent the day and we’d take dinner up to the hospital. After our meal together, the kids would play with the other children in the hospital playroom; some of them were patients while a few were visitors. They enjoyed playing and helping the children. The nurses and aides were friendly and caring in helping our children adjust to our new situation. They helped the kids become comfortable in the hospital setting, encouraging them to sit in the wheelchairs and learn to maneuver them.

The uncertainty of Mark’s health condition was frightening. Each family member and friend dealt with this crisis in his or her own way. Being responsible for Mark’s well-being,  I felt an urgency to learn everything about his condition so I could make wise choices in his behalf. All the stress and worry made it difficult for me to concentrate and remember explanations given to me. Keeping a journal of events, feelings, concerns, and questions became my way of coping. Overwhelmed, I felt the need to write down my questions and the answers I received from therapists, doctors and nurses. Some of the staff were fine seeing me doing this, while it made others feel guarded and suspicious of my motives. I was constantly taking notes because I didn’t want to forget what I was told and it helped me understand and stay focused on what I felt was most urgent at the time. I was aware of each staff member’s concern, but I just focused on the most critical ones at a time. I believed Mark would come out of his coma once his other injuries and infections healed, but for his therapists, the coma was the most concerning.

After three weeks of the powerful intravenous medication, Amphotericin B, Mark’s red and white cell counts were in the normal range and it was another victory to complete this treatment. The next focus for improvement was weaning Mark off the ventilator. The respiratory therapist came three times daily. I asked and kept record of his respiratory rate and the breaths Mark initiated on his own. I was encouraged every time the preset pressure value was turned down. After one week of weaning him off of the ventilator, the tracheotomy tube was downsized and a smaller tube was inserted. The smaller size allowed for the stoma site to shrink. The next step towards removing the tracheotomy was to plug it. The purpose of this cork was to insure that he was able to clear his own airway effectively without the need for suctioning. After a couple of days without any complications, the doctor ordered the trach tube to be removed. Glorious news, but I was taken by surprise when they pulled the tube out right there in his hospital room and then covered it with dressing and taped it in place. I was unprepared for the gasping, high-pitched sound he made and I panicked. It was hard to watch him struggle. The respiratory therapist kept a close eye on him and tried to reassure me the hole would close up on its own quickly. Since I had no previous experience with this, I doubted him. It was the first night since Mark had been at Western Rehab that I didn’t dare take the kids to see him nor did I want to leave him. Thankfully, Mom and Dad were able to keep the kids overnight and within twenty-four hours, Mark was breathing more easily all on his own.

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.

Conflicting Viewpoints

With my collarbone healed and my right arm free from the sling, I started writing daily notes about Mark’s progress. I recorded his red and white cell counts, temperature, heart rate and respiratory pressure support. I did this so I could recognize the improvements no matter how small they might be. It helped me stay focused on just parts of the recovery instead of thinking about everything Mark needed to overcome.

Mark’s white cell count was high and since the increase indicates an infection, they did a body scan. Mark’s liver was abnormal. With his weakened immune system, they treated the liver infection aggressively with a powerful intravenous anti-biotic because they were worried the infection would spread quickly to other organs, causing death. Within a week his white cell count went from 50,000 down to 11,000, which was an answer to our prayers. He was schedule be on this medication for two weeks with the goal range of 5,000 –10,000. In my mind he had almost reached the elevated end of the goal range.

With high blood sugar levels, Mark was now on insulin and with a large blood clot in his right leg, he was getting heparin. He was now in a floatation bed to help with the blood clot problem. There were so many health concerns that at times I thought I’d lose my mind from the anxiety. I found it helpful to write down the worries and the normal or goal range for his white and red cell counts, heart rate, temperature and the respiratory pressure support. I tracked the numbers daily. I recorded when they did a test and then the test results. Gathering all the information I could helped me understand the process and what was happening with Mark’s body. I recognized and celebrated every little miracle that happened.

Mark’s low red cell count was a cause for concern because it could indicate internal bleeding, bone marrow failure or kidney disease. Within this same week his red cell count increased from 3.3 to 3.8 million with the goal range of 4.0-4.5. I saw the numbers as a great improvement.

I also noted on one day I saw Mark move his finger, on another he held his head up slightly to cough and another time he yawn. I rejoiced in every movement and recorded them in my journal. Unfortunately, Mark wouldn’t do these things when the doctors, nurses or therapist were there so my joy had no merit by their standards.

Without meaning to, I annoyed the doctors and nurses with my records and positive notations. It became a daily routine when the doctor walked into Mark’s room with the hospital records and stated, “No change.” I would then read from my records and report what I had witnessed. The doctor then left the room as frustrated with me as I was with him. We definitely did not see Mark’s progress in the same way. He never specifically said, but it was written all over the doctors face, who was I? A young 32 year-old spouse, uneducated in neurology, who had the audacity to question and challenge his words. I was truly grateful for his knowledge and skills which saved my husband’s life, but I didn’t appreciate his bedside manners. My observations were not taken seriously. The doctor was the medical professional, reading and understanding what the results of many tests were telling him. However, I knew Mark and was the one spending many hours with him day in and day out. I felt his spirit and knew he felt mine. It was so frustrating that what I witnessed had no value with the professional caregivers. I wanted us to be on the same team, working together in Mark’s behalf, but instead it felt like we were on opposing teams. There were a few days I was tempted to throw my shoe at the doctor as he walked out the door. Equally frustrated at me, I’m sure he was tempted to stitch my lips together.

The day after my 32^nd birthday, they did a Brain stem Auditory Evoked Response (BAER) test which measures how the brain processes the sounds you hear. The BAER test records brainwaves in response to clicks or other audio tones that are played. The test can help to diagnose hearing loss and nervous system disorders in people who are not able to participate in a standard hearing test. While Mark was lying in bed, a technician placed small electrodes (sticky patches with wires attached) on Mark’s scalp and earlobes. The electrodes were connected to a machine which recorded his brain activity while he heard a series of clicks and tones played through earphones.

I was elated as I watched his brainwaves being recorded in black on the continuously fed white sheets of paper. He was reacting to the noise he heard, which confirmed my belief that he could hear and his brain was processing it. My spirit jumped for joy with each spike his brain activity made every time he heard one of the clicking sounds or other tones. The printout of the test results was something tangible which showed the spikes. I didn’t know what a normal or abnormal test looked like, but the report appeared wonderful to me. I was excited to hear what the doctor would say. I was positive it would be good news.

The next day the doctor told me that the test indicated significant damage to the brain stem, which is responsible for breathing, sleep patterns, hunger and thirst, blood pressure, heart rhythms, and body temperature. It regulates the central nervous system. “Mark has bruising and injury throughout all parts of his brain, but the most severe damage is to the brain stem. When you go to sleep, it’s the part that wakes you up. With the amount of damage he has, I don’t expect he can ever wake up.”

A chill ran up my spine while a flashback flooded my mind. After I gave birth to Katie, I hemorrhaged and had to have an emergency surgery. When I was coming out of my sedated state, I heard doctors talking about all the blood I had lost. I felt one of them pull down the bottom part of my eyelid as he commented on how white the area was, which should be pink in color. Inside I panicked, but could not make my body move. I worried they thought I was dead and I felt helpless to show or tell them otherwise.

With this doctor’s words, I felt Mark’s terror. He, too, was trapped in a body unable to respond. I followed the doctor as he left Mark’s room. “Please don’t ever give reports like that at his bedside again. I prefer we meet in the conference room to have these discussions. After all, the BAER test confirms he can hear, right?”

“Yes, he can hear, but I don’t believe he understands a word that’s said. However, if it makes you feel better, we can meet in the conference room from now on.”

Experience is a Great Teacher

While I appreciate the years of education a professional caregiver has, it’s still really hard for me to leave Mark at the hospital. I realize they can be an expert in their field working with people who have a wide variety of disabilities and illnesses. They may have the education and the skills of an excellent doctor, nurse or therapist, but that doesn’t make them an expert on the person they are treating. Even though I know this, it’s difficult to stay calm when they don’t know how to do something which seems obvious because it’s common to me such as transferring, bathing and the other daily tasks of caring for Mark.

The memory of three hospital admissions in 2013 for blood clots is still etched perfectly in my mind. They didn’t know how/or want to transfer him so he was bedridden for a few days. I watched him get weaker as they treated him like he could not move. I asked the doctor if the nurses and aids weren’t getting him out of bed because of the blood clots. He said no, in fact, lack of movement brings on blood clots. I asked him to please order Mark some therapy, which he did. To my surprise, the therapist wheeled in a bedside lift.

“I don’t use a lift to get him up,” I said.

“Well this one will not only help me get him up, but he can walk with this lift stabilizing him.”

I watched anxiously to see how this would work. The harness was complicated and appeared to be new to the therapist. Mark was in a weakened state and this method of getting up took little effort on his part. He wanted to help, but was confused by this foreign process. It took nearly thirty minutes to get him in an upright position, leaving little time for walking.

“He can walk with a walker,” I stated.

The therapist looked at me like I was crazy.

“I will bring it tomorrow and we’ll show you,” I said and the next day, I did just that.

With assistance from the therapist and me, Mark took steps the length of the hospital room. The therapist was impressed and amazed he could do it. I was shocked at how fast he had weakened because he usually walked better and much further.

It took the full month of August 2013 in a rehab center to build up his strength again. This hospital experience taught me I needed to let them know immediately Mark’s capabilities and I took the walker to the rehab center.

With the bitter taste of last year’s experience still fresh in my mind, I was worried about how this year’s hospital stay would go and decided I needed to be more assertive with the professional caregivers. Shortly after we entered his room and met the nurse and aide who’d be caring for him for the next two days, I asked, “Would you like me to show you how I transfer Mark into bed?”

“Sure,” they replied in unison.

Standing directly in front of him, I lifted his foot and I swung the leg rest to the side to move it out of the way. I followed the same routine with the other foot while Mark unfastened his seatbelt. With his feet on the ground and carefully positioned with the foot closest to the bed out in front of the other, I placed my feet in front of his to hold them in place. I wrapped my hands over his shoulders and tucked a few fingers under his arms. With my knees pushing against his legs, I pulled upward with my arms as he stood.  He’s 6’2” when he’s upright and his height usually surprises people when they see him stand for the first time. I used my legs to help direct him as we pivoted to the side of the bed and I lowered him to a sitting position. As he lay back, I picked up his legs and swung them onto the bed.

“You do this by yourself every day?” the nurse asked.

“Yes. It’s really not that hard after the initial pull. I use my knees against his to help him straighten upward.”

“It looks hard; you must be really strong,” she said.

Some people may take that as a compliment, but I felt like she was saying, that’s too difficult for us to do. I left for work worried that he would be confined to the hospital bed all day long and when I returned at night my worry was confirmed. Someone had even written on the white patient information board in his room “bed rest”.

My blood nearly boiled, but I took a deep breath and asked who wrote the “bed rest” order. No one knew, so I wiped it off the board. “He can lose strength so quickly and with me being the only one to transfer him at home, I need him to stay as strong as possible.”

“You have your routine and you’ve been taking care of him for a long time. It’s second nature to you, but it isn’t to us,” the nurse said.

I knew she was right, it is second nature to me and not to them, but I was also right, he needs to move to keep up his strength. By both of us being assertive and expressing our concerns, we came to an understanding with a plan for physical therapy while he was there. I didn’t necessarily like that they wouldn’t get him up and it’s hard for me to understand that some nurses and aides are not comfortable doing transfers, but we found some middle ground. I realize that rehab centers are different than hospitals where the majority of the patients are capable of walking or transferring into a wheelchair with minimum assistance and transferring Mark does take more assistance. However, I do it every day so it’s an obvious part of caregiving to me.

It’s not always easy to express what I think and feel in a positive way, creating mutual respect, when I view things differently than another. I don’t want to be passive by giving into what I don’t believe is right. If I don’t express my feelings, I get upset inside and after time it can build until I explode or become aggressive by yelling or being sarcastic. I don’t want to be disrespectful of others and their opinions. Being assertive is the ideal middle ground—where I want to be. Sharing what I have learned through my experience with professional caregivers can be intimidating and difficult. Tuesday I’ll share some great information I found on how to be assertive without offending another.

What positive experience have you had sharing what you know in a difficult situation?

More Than a Survivor

Mark and I with Ron Roskos, who received the Lifetime Achievement Award.

Over twenty years ago I was introduced to Ron Roskos, then president of the Brain Injury Alliance of Utah, a non-profit organization. The group helps community members affected by brain injury by providing resources and information to survivors and their families. They also educate the community on preventing brain injuries. They have an annual conference every fall which brings together healthcare providers, educators, families and survivors. We appreciate the information given at the conference and enjoy seeing therapist and nurses who have worked with Mark in the past. It also appears to give them pleasure to see the progress Mark has made over the years. During the conference lunch they award five individuals in the following categories: Survivor, Family Member, Healthcare Provider, Educator and Lifetime Achievement. Mark was nominated for the Survivor award and we were thrilled to see him receive it. A month ago I was informed Mark was the chosen nominee and they wanted it to be a surprise for him. It was hard to keep the secret as I prepared for the celebration. I believe Mark’s survivorship has been based on the support of family and invited them to join us at the luncheon. Since Mark’s mother and sisters live out of state, it took more planning and time on their part to attend. Mark’s mom flew in from Washington to be at the luncheon and his sister, Karen, and brother-in-law, Mark Ray, flew in later that evening to celebrate with us. It made for a wonderful and memorable day. Our daughter, Katie, and I wrote the following introduction, which the presenter read when announcing Mark’s award. Mark Wilson survived a Traumatic Brain Injury due to a car accident he was in with his wife, Barbara, in 1991. He was comatose for three months and hospitalized for eight months. He is wheelchair dependent and struggles with memory and epilepsy. What a great example he is, especially to his wife and two children, who were ages seven and eight at the time of the car accident. Mark demonstrates the value of perseverance as he pushes through strenuous therapy relearning to speak, write and regaining the ability to feed himself. His ultimate goal is to walk and after twenty-three years he remains hopeful. With the assistance of a walker, his wife at one side of him and a friend at the other, he practices walking at least twice a week with determination. He’ll often look at the two people assisting him and jokingly say, “This is really hard. Must I drag you both along?” He shows burdens can be lightened and joy can be spread with a sense of humor. He enjoys making others laugh with what we call “Markisms,” like telling others that the scar on his stomach from the feeding tube he had is really a second bellybutton, which makes him “twice the man.” Despite many obstacles, he chooses to be happy by looking for the positive in every situation. He is forgiving and thoughtful towards others. Mark is patient and never demanding. He enjoys being productive and looks for ways he can help. He expresses gratitude often for what he has and for the help he is given. Mark once said, “Adversity is the exercise that strengthens the muscle of character.” His muscle of character has Hercules’ strength. He’s more than a survivor – he’s a THRIVER!

Mark and I with Mark Fox, the award presenter.

I’m so proud of Mark and believe he deserves the award for the way he cheerfully handles his difficult, unexpected, unwanted and painful life. I’m blessed to be his wife and caregiver. I loved what the presenter, Mark Fox, said after handing Mark the plaque. “I have to put in a side note…I was relatively new in my career back at the time Mark had his accident and was working in rehabilitation at what is now called HealthSouth,but was then Western Rehabilitation. Mark was at the center for a long time. He had speech impairment and you really couldn’t understand anything he said. Being a young clinician and seeing how hard they work for a long time in rehabilitation with limited progress in speech intelligibility, I really didn’t believe he could ever be verbally understood. But he was always determined. Several years later I saw him at the community rec center. They were doing exercises in the pool and he said, ‘hi’ to me. I about fell over. He was so clear. So, if you get an opportunity, I strongly encourage you to have a conversation with Mark. He is a wonderful man with a wonderful family.” In looking back, I was naively optimistic about Mark regaining all his abilities, but the determination and hard work has paid off. I’m grateful for Mark Fox’s statement recognizing his continued improvement even after his rehabilitation. Gratefully, Mark has never given up and a professional healthcare provider acknowledged it. There are only a few people who have been with us from the beginning of Mark’s traumatic brain injury and they are the only ones who can fully realize and appreciate how far Mark has come. We love to surprise them and see their joy in what he has accomplished. Life can be challenging. We don’t expect it will get any easier as we age, but it’s rewarding to overcome hardships. I’m grateful for organizations like the Brain Injury Alliance of Utah which provides support, education and shows us we’re not alone in our journey.

Marks mom, Wanda with Katie

Eldin with Steve in the background.

Dianne, Mick, and Mom

Dad

Mom, Katie, Eldin, Rosanne, Dianne, and Mick

Missing picture of Ruth and Steve who were also there, but sitting at a different table. Don, Klint, Jerrie and Jon were unable to attend due to work. We also missed our son, Christopher, who wasn’t there due to new employment which has taken him to Washington to live:-( We love and appreciate our family and their support!

Four minute video of the Survivor Award

Enjoying treats and our visit  at Sundance

Weekend fun with Mom W, Karen & Mark Ray

Mark lovin’ his root beer

After a fall ride on the Alpine Loop we enjoyed a picnic at Sundance

Miracles Happen

Some miracles take time and aren’t always what we hoped for, nevertheless, they are still miracles. Mark’s life is a miracle, but it’s not the full recovery I hoped for. I was discouraged and hurt by doctors, nurses and the therapist who tried continually to squashed my hope with their negative statements and statistics because they didn’t believe I was facing reality. Concerning Mark’s recovery I was told I looked through rose colored glasses because I remained optimistic and hopeful. Twenty-three years later and with more life experience, I understand and have forgiven them for their pessimism. They were doing their job and I was adjusting the best I knew how with the strong feelings I had about his recovery. I’ve thought a lot about “false hope.” As shocking as the statement was to me, I recognize the spot the therapist was in, but that doesn’t mean I agree or like the statement. I truly appreciate their knowledge, which kept Mark alive, but couldn’t understand their lack of hope for improvement. I feel without hope life loses purpose. I closed my Sunday Story asking if there was such a thing as false hope. I loved Laura Nordfelt’s comment:

“This is a thought provoking question for me now. I realize that for the first year, I don’t think I placed any expectations on Greg’s recovery. I lived one day at a time. Go to the hospital. Go to appointments. Work with him on his therapy. Go to my job. Cook for him. Encourage him. Love him. Watch him nap. Watch him play brain games on his iPad. Go for walks up and down the street. I just went through the motions.

Then all of a sudden one day, he went to work for 3 hours. Pretty soon, it was 4 hours and so on. One day, he got his driver’s license and a whole new world opened up for us. Our lives began to take on a different meaning. Independence crept back in piece by piece.

I don’t think I ever had feelings that our lives would ever be the same because his physicians set me up from the beginning with cautious expectations. So hope? I tried to set the bar low and decided we would be grateful for whatever we were given. We (Greg) worked as hard as two people could possibly work with all the tools that the therapists had in their boxes and any more we found along the way. I believe it helps tremendously that we are hopelessly optimistic people! Just try and tell us we can’t do something, nope, not having it!”

Thank you, Laura, for sharing Greg’s miracle. I think being optimistic, hopeful and having faith is the most important tool in the box. It is the fuel that drives us to work hard for something. Twenty-three years ago, I set the bar high. Part of it was my lack of experience with life, but most of it came from being an optimistic, hopeful person full of faith. A person who proudly looks through rose color glasses and realizes there is a higher being in charge of life. I’m grateful I set the bar high and I’ve never regretted it. Have I been disappointed? Yes! But I wonder where we’d be today if I didn’t have high expectations and a belief that only God knows all.

We are all on a different journey with different experiences, however the feelings and emotions are the same. No one should tell another how they should feel or react to a given situation, especially when it’s a traumatic experience.

What miracles have you witnessed?