Go For The Gold

The Olympics are packed with hopefuls, and I love to hear their stories of overcoming obstacles while pushing the boundaries in pursuit of their dreams. The passion for their sport and years of dedication to training is motivating. A week before the Olympics started, I watched a documentary, The Crash Reel, which gave me a new perspective on the snowboarding events.

Do you remember the snowboarder Kevin Pearce?  He expected to be the gold medal contender for the United States in the men’s halfpipe in the 2010 Winter Olympics. On December 31, 2009, he was critically injured in Park City, Utah, during a training run. He struck his head above the left eye halfway down the pipe doing a double cork. He was flown to the University of Utah Hospital and was in critical care for nearly a month, shattering his dreams for the gold in Vancouver, Canada.

Shaun White won the gold that year, while Kevin was immersed in the hardest, most meaningful training of his life. Once stabilized enough to move, Kevin was taken to Craig Hospital, a center which specializes in traumatic brain injuries located in Denver, Colorado. For the next four months he worked harder and focused entirely on relearning to do the simple tasks of daily living before he could move back home with his family in Vermont.

The Crash Reel, recounts the ambitious rise of Kevin and the support of an extraordinary family confronted with a devastating injury. Kevin is the youngest of Simon and Pia Pearce’s four sons. His brothers, Andrew and Adam are also snowboarders. David, who has Down syndrome, snow skis in the Special Olympics. Their story is inspiring as they come together to help Kevin re-discover himself and find purpose and meaning in the snowboarders lost dreams. I appreciated this family for allowing the cameras in his hospital room and in their home to share the intimate details of the recovery process. The documentary captures vulnerable moments as Kevin reconciles his new life post-injury with the snowboarding superstar he was before.

In 2008, Kevin was the first athlete in X Games history to compete in three medal events in one day and he won medals in all three in Aspen, Colorado. Even as a young child he was entirely focused on snowboarding and he couldn’t imagine life without it. After the accident, he was determined to ride on the snow again. His family and doctors tried to discourage him from doing so. Because of his short-term memory problem, it was a constant battle. Kevin states now that the brain injury was hard for him to understand because he couldn’t see it, nor did he have any memory of the tough recovery. When Kevin reviewed the recordings of his accident, he said he’d had worse falls and came out okay, so he couldn’t understand the concern. The neurologist told him he had several concussions leading up to the one that caused a coma, and one more blow to his head could cause death. While most wouldn’t be willing to share such a difficult experience on film, this family didn’t shy away from the opportunity.

Kevin resolved to push the limits and return to what he called his “true love.” Almost two years after the accident he strapped on his board and took his first ride with his friends and two brothers by his side. The movement made his vision double. He lacked the coordination for even a small jumped. In many ways, he said, he didn’t feel like himself on a snowboard.

Kevin finds comfort in a quote from Eckhart Tolle, “What could be more futile, more insane, than creating inner resistance to something that already is?”

Likewise, Kevin said, “This brain injury is. This happened to me, so creating inner resistance to this is completely insane because I cannot take it back. I cannot change what happened to me and I never will be able to change December 31, 2009. That day happened.”

Kevin has a new passion now, Love Your Brain Foundation. It was born from the documentary, The Crash Reel. His mission is to educate about concussions and other types of brain injuries, along with transforming physical and emotional well-being through yoga, and building a community through brain health experiences. It’s apparent to me that while Kevin’s life is different now, somethings haven’t changed. Kevin’s still determined and focused. He still gives his all to his passion and never settles for average. Check out the website, it’s impressive. http://www.loveyourbrain.com/

Kevin may not have a gold medal from any Winter Olympics hanging in his trophy case, but his comeback story is real and relatable to all kinds of survivors and caregivers. It’s been a tough journey, but he has found peace and acceptance with his new life, which I believe makes him a first place winner.

I admired the Olympic candidates. Their determination and perseverance for their beloved sport are inspiring. The opening ceremony was enthusiastic, filled with anticipation for the games to begin. The closing ceremony was pleasurable with a flicker of melancholy. The stories of triumphs in between were most rewarding and why I loved to watch the participants. When the flame was extinguished, it felt like the end of an epic holiday. The sadness comes from knowing it will be a while before we’re going to enjoy that kind of excitement and inspiration again. However, their lives and ours go on. Day by day we each have a deep sense of purpose, along with struggles to overcome for advancement. My take away from this year’s Olympians and Kevin Pearce’s story is, embrace where life takes me, while striving to do, and be the best I can. We should all go for the gold, even when life changes our dreams.

Thanks Pyeongchang for being a great host to the world. I wish the love and unity could last forever!

 

 

 

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.”

I 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 28^th. 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.

Our Happy Place

Two months ago today Mark had his second total hip replacement surgery. Out of the three most common replacement surgeries, hip, knee and shoulder, we’ve been told the hip replacement is the easiest to recover from. We saw many people during his seven weeks of in-patient rehab days who healed a lot quicker than Mark, even with a knee or shoulder surgery. It’s hard not to get discouraged. This is when I realize having a short-term memory problem is a blessing that Mark inherited from his traumatic brain injury (TBI). He lives in the moment, which is what I’m trying to learn how to do.

The pain of moving joints, muscles and tendons which have been cut and were not in good condition beforehand seemed at times unbearable. Mark’s ability to make his body move is difficult with his TBI under normal conditions, but throw a surgery in the mix and it’s nearly impossible. However, he persistently works hard to please the therapists and me, doing all that is asked of him, even when he doesn’t feel like it. He has made remarkable progress for his circumstances. When I liken his abilities to before surgery and not another patient, I am thrilled with his progress.

Often right before or during a painful stretch, Mark’s therapist would say, “Go to your happy place.” To that Mark would reply, “My happy place is any place other than here.”

Wanting to be helpful, I started naming vacation spots which hold wonderful memories. “How about the beauty of Zions, Bryce and Grand Canyon; remember the thrill of seeing the parks for the first time on our honeymoon?”

“I just want to go home.” Mark replied.

My thoughts moved to the gorgeous State of Washington where Mark grew up. “I love Deception Pass and the San Juan Islands. I look forward to our next trip there, how about you?”

“Home is my happy place so take me home.” Mark pleaded as the painful stretch continued.

As a wife and caregiver, I want nothing more than for Mark to be better. My world has revolved in this endeavor for twenty-five years next month. In the first few years after his TBI, it was a race against time because it was believed that the greatest amount of progress would happen in the first year and then slow down and plateau within the following couple of years.

Subsequent years we continued seeking for improvement with foot surgeries on both feet to correct foot drop and toe tendons cut to release curl to make standing possible. Also he’s had previous hip surgeries to clean out the joints for improved movement and a Vagal Nerve Stimulator (VNS) implant to help control his seizures along with the various surgeries in the beginning which saved his life. All told, Mark has had fifteen surgeries since the car accident.

Mark turned sixty last November so the path of our journey seems shorter than it used to, which adds a new dimension for recovery importance. It’s evident to me that striving for improvement is a lifetime pursuit. But this is not the life we’d planned and there is a certain amount of grieving that happens over the loss of dreams and honestly some dreams are harder to bury than others.

I’m human and some days I run out of patience and energy. I want Mark to be better now, but recovery is still happening. We are no longer in an in-patient facility, but are now engaged in out-patient therapy. I’m finding it hard to get into a regular routine with the interruptions of driving to and from the needed therapy sessions daily, preparing meals, managing prescriptions and doing the regular household chores. These are the responsibilities I was relieved from while Mark was at the rehab center. Don’t get me wrong, I’m happy to be home, but I’m looking forward to these common tasks becoming second nature to me again. Feeling overwhelmed makes me wish for a far-away trip, a vacation from health concerns and worries. However, the TBI and physical limitations go with us no matter where we are—so there’s really no escape.

Backyard – My happy place.

At the same time, I’m grateful to be home where we have our privacy and some control over our own time. I appreciate the beautiful place where we live, which was custom built to meet Mark’s needs. For us it is the most comfortable and peaceful place on earth, designed to make our life easier. The openness and wide hallways make it possible for Mark to maneuver in a wheelchair. The large shower which Mark can roll right into and a bathroom sink he can roll under creates independence. Even outside we have cement sidewalks around the backyard so we can enjoy the outdoors together. We are fortunate to live in such a house and we have awesome neighbors too. Whenever I feel sad about the places we can’t go, I remember, there is truly “no place like home.” We are grateful after nearly eight weeks of being away to finally be back in our “happy place.” We couldn’t be more thrilled that the surgeries are finally behind us and given a year to heal, I’m certain Mark will be entirely pleased with his hip replacements.

Where is your happy place?

Feeling Lucky

I appreciate Christine Scott sharing her story over the past five weeks of growing up with her mentally disabled sister and the challenges they faced as a family. It’s been insightful and very helpful for me while Mark has been recovering from his second total hip replacement.

We’ve been at the rehab center for the past seven weeks and we’re looking forward to returning home on Saturday. This second battle of recovery has been easier and harder. Easier because we knew what to expect and Mark was in better physical condition to start with.  Harder because we knew what lay ahead of us and right from the start we were still tired from the first surgery.

We were tempted to wait awhile until our vivid memory of the surgery and rehab had dimmed. We moved forward with the original plan because we were anxious to get it behind us and we didn’t want the therapists who worked with Mark on the first recovery to forget what they’d learned about him the first go around. We saw more pros than cons in doing it sooner rather than later, which meant there were six months in between the left and right hip surgeries.

It was a good decision. We’re glad to have it behind us and fortunate to have the same therapists. Their previous experience working with Mark and knowing his physical limitations and capabilities have proven to be beneficial. We’re leaving the rehab center after 52 days rather than the 60 days it took with the first rehabilitation.

Mark in therapy

Physical Therapist, Brandi

We’re happy with his progress and the new range and mobility he now has with both hips done. Last August, I wrote an article, A Man with True Grit, which is my favorite way to describe Mark. He reconfirms his grit daily as he works hard through painful therapy. Since I’ve watched and encouraged Mark through rehabilitation for nearly twenty-five years, the pain is both heartbreaking and tiresome. It’s easy to wonder why it has to be so hard.

Sam & Mark with their crazy hair hats

One of the benefits of being in a care facility is that we are surrounded by people with similar struggles. Most of the patients here are overcoming a knee, hip or shoulder replacement. A few have a more serious struggle like cancer or a stroke. As I get to know each patient, my heart goes out to them and I rejoice in their progress conquering their individual health challenges. We’re encircled by people with true grit and a few of them are still here from our first stay and feel like family now.

Mark wasn’t the perfect candidate for total hip replacements and we were told it would be a tough recovery for him. He had several tests to determine whether it was even a possibility. Every test revealed a new problem such as severe degenerative disc disease, osteoporosis and scoliosis of the spine. The results were discouraging and overwhelming. The bone density test revealed he was a high risk for a break.

The orthopedic surgeon gave Mark only a 50% chance of the surgery being successful. Mark replied, “I’ve beaten lesser odds,” and wanted to go through with the surgeries despite the risks. Mark’s continuing optimism and determination for betterment is one of the reasons why I love and support him so much. He’s taught me you don’t have to be a cowboy to be a man with true grit.

If you’re old enough, you may remember one of my favorite John Wayne movies made in the 1969, True Grit. The fearless, U.S. Marshal, Rooster Cogburn, was hired by a determined young girl, Mattie Ross, to find the man who murdered her father and fled with the family savings. Rooster was cantankerous and drank too much, but his shooting ability was flawless. He was known as a man with true grit.

The scene that runs through my head as Mark valiantly works in therapy is the one where Rooster rides his horse into an open area and faces alone the gang of four outlaws he’s been tracking down for days.

One of the outlaws shouts, “What’s your intention Rooster? Do you think one against four is a dog-fall?”

Rooster hollers back with sincere determination.“I mean to kill you in one minute or see you hang in Fort Smith at Judge Barker’s convenience. Which one will it be?”

The gang unwilling to surrender to this one-eyed, pot-bellied marshal moves forward on horseback.

Rooster puts the horse’s bridle reins in his mouth, drawing his rifle in one hand and his shotgun in the other as he charges towards the four men, shooting with both guns.

Despite the unlikely odds and with one heart-stopping mishap, he does take all four gangsters down.

This comparison may seem a bit uncouth and a little irreverent, but it’s what goes through my mind as I watch Mark courageously combat rehab. He boldly confronts each challenge with every ability he has. He fearlessly fights for improvement and gives little thought to it taking him down. He may ride on top of a different kind of saddle, but he is indeed a man with true grit. However, I must add he’s much better looking than Rooster Cogburn and his language, manners and conduct are much nicer too.

Right now I’m surrounded not by cowboys, but warriors with true grit and I’m particularly fond of the one I’m married to. Just like Rooster, Mark has come out the winner thanks to his surgeon, Dr. Rasmussen and his staff, along with the great therapists at Rocky Mountain Care Center. The fight isn’t over yet, but the end of this ride is near and that’s why I’m feeling lucky. A bright rainbow is in sight!

The Wonders of Recovery

Mark’s left hip replacement went well last Tuesday, January 26^th, despite the delay. It didn’t even get started until 5:30 PM due to difficulties with a prior surgery. Around 9:30 PM he was moved into a hospital room groggy, but awake. It made for a very long day and night. His appetite and strength have been very good. The main concern has been the dark, huge bruise from under his armpit to his waistline, not where we expected to see bruising after hip surgery, which makes me wonder what went on in that surgical room.

Wednesday, Mark had a radiation treatment to slow the bone growth in his hips, which is the cause of his joint problems. Thursday, he was released from the hospital to Rocky Mountain Care.

If you’ve experienced rehabilitation, you’re probably familiar with uncertainties like: How long will it take to recover? When will we realize the advantage of surgery? How much pain will have to be endured? These and possibly many more questions, along with the enormous desire to feel better right now are part of the recovering process.

Before Mark was discharged from the hospital with the right hip surgery last July, I visited six rehab centers in our area which were listed with the insurance company. I can’t imagine spending such an important and limited time in a facility without doing research first. With the doctors recommendation, we’d wanted Mark could go to HealthSouth for rehabilitation. They specialize in neurological problems and since Mark has a traumatic brain injury (TBI), I knew they had equipment which Mark would need for rehab. However, the insurance wouldn’t allow it because this rehab was based on a hip surgery and not TBI. Disappointed, yet determined to get Mark the best possible help with therapy, our second choice was Rocky Mountain Care. I was impressed with their homelike atmosphere, clean smell and they had more equipment than the other gyms I visited on the insurance approved list.

Mark’s TBI and physical limitations give him special needs. At home we have a standing frame and a roll-in shower along with a shower/commode chair which he uses daily. The rehab centers on our insurance list didn’t have either and since they’re important for his recovery, therapy plan and general health, I’m willing to bring them from home along with his custom walker. The challenge is finding a room which has space for it all, plus an extended bed for his height and a trapeze, which helps him change position while he’s in bed. Along with these essentials he needs the capability to maneuver his wheelchair in and out of the room. Wow, this list sounds pretty lengthy and must be why we don’t travel anymore.

Suite kitchen and my office area. Door in between goes to bedroom.

Suite living room

Fortunately, Rocky Mountain Care has a couple of rooms which can accommodate Mark’s needs and they’re willing to let us arrange the room to do so. In August and September of 2015, we were lucky enough to get a suite. It was beautifully furnished and definitely the nicest room in the building. The kitchen had a full-size fridge , small microwave and a solid wood dining table with six cushion chairs.

Suite living room with therapy balloons and balls.

Suite bathroom

The living room was furnished with a couch, two comfortable stuffed chairs separated by a table and lamp and a television on top of a beautiful wood stand. A large wood desk was in the back of this room by a glass sliding door which led out to a small patio. The view of the mountains from the living room and patio was spectacular.

The separate bedroom had two twin sized beds, a large dresser, a chest of drawers and a roomy closet. The bathroom had ceramic tiles with a roll-in shower and was perfect for the shower/commode chair or wheelchair. This is unlike any other room Mark’s ever had in a rehab center. We felt spoiled and a little guilty for having it.

Therapists, Brandi and Trish

The room was wonderful, but the biggest advantage to Rocky Mountain was the therapists. They were knowledgeable, caring and worked hard to improved Mark’s abilities. For this reason, they were our first choice this time around. It was nice to have the decision made before surgery and it actually decreased a day in the hospital because we made the arrangements beforehand.

Since Mark has a severe short-term memory problem, he is dependent on me to keep him oriented. Unfamiliar surroundings and routine make him feel unsettled and his memory is worse. He forgets what he’s supposed to be doing and where he is, which can make him agitated or anxious. Since I want him to get the full advantage and have the best experience with rehab, I prefer to stay with him. The suite made it easier, but because it’s a lot more costly than a regular room, we are not in the suite for this round of rehab. It’s been an adjustment and the difference is like being on a cruise verses camping complete with an air-mattress for me. It’s hard for me to go home because I worry he might have a seizure and the nursing or aide staff will not know. I wonder if he’ll be able to find or remember how to use the call button when he needs help and the waiting time for that help also concerns me.

Mark’s bed on the west wall.

Entrance to room

I like to be involved in Mark’s care—not to interfere, but rather assist while he is here. However, it’s awkward to step back since I’ve been taking care of him for so many years. I have to continually remind myself  that what seems so obvious or natural to me isn’t for the professional caregiver who has several patients at one time with all different levels of abilities. I’m realizing every rehab experience is different even with the same patient, therapists and caregiver staff.  But the goal is always the same—to get home stronger and better. We’re confident it will happen with the therapy and supported care we have here.

Mark’s standing frame and my work station. West and south wall.

East wall with my air-mattress standing up, which I lay down for sleeping.

 

 

 

 

 

 

 

We are grateful for all the well wishes and prayers. We feel blessed and amazed at Mark’s ability to heal and adapt to foreign implant objects. This along with all the love and care of others is the most wonderful part of recovery.

I Need Thee Every Hour

Right hip replacement with extended rod for added stability.

Left arthritic hip with calcium buildup preventing free movement.

It’s been a hard couple of weeks.  We expected the healing process from a total hip replacement would be difficult, however, the distinct difference between expecting and knowing is living it day by day, which makes the actual experience a reality.

As I was searching for the perfect thought to go along with my last story and tip concerning true grit, I found a quote from John Wayne. “Life is tough, but it’s tougher when you’re stupid.” I chuckled when I read it, but it haunted me through our “tough” week.  I couldn’t stop wondering if we took a ridiculous chance or made a senseless choice in choosing major surgery for Mark.

We took months to decide. Vacillating back and forth nearly drove me crazy. When I was reluctant, Mark was assured and visa-versa. The stiffness and painful ache was bound to get worse over time and with the results of his bone density test, we realized if he was going to have the surgery we needed to do it now. After much prayer and discussions about risks and concerns, the surgery felt like the best solution for helping Mark to sit comfortably and move better as well as making it easier for me to transfer him in and out of his wheelchair. We were hoping this would bring an improved quality of life for both of us. I’ve wondered if the uncertainty was a sign we shouldn’t go through with the surgery, yet we couldn’t let go of the a hope for improvement.

Since the day of the car accident, I’ve felt responsible for Mark’s care. It isn’t because I want to be in control of his life, but while he was in a coma, I was forced into that position.  It overwhelms me to be in charge of another person well-being and I guess I could have shirked from the responsibility, but my love for him wouldn’t allow me to do so.  I hated the circumstances and would have loved to escape from having to make many decisions—however, obligation felt like the right choice.

In a rehab center, it’s easy to notice another person who’s had the same surgery near or on the same date who’s healing and progressing at a much faster pace.  Some of the patients here who came about the same time we did have already gone home or are getting ready to do so in the next week. It isn’t that they’ve worked harder or more diligently, but they had a physical advantage to start with.

I’ve wondered if we made the right choice or if we just made our life harder. Sure, Mark’s gained movement, but he’s lost strength and so far the improved movement doesn’t make up for the lack of strength, which makes transfers even harder than before. He’s far from ready to come home and that’s discouraging. We’re praying he’ll turn a corner soon and his recovery will speed up, but in the meantime, I’m trying to be patient and positive.

Every Sunday they have a short church service at the rehab center for anyone who’d like to participate. Today the opening hymn was, I Need Thee Every Hour. I fought the tears as the words seemed especially significant and reminded me how much I needed God to calm the raging storms in my life. Noticing a few others who also had tears, reminded me that our anguish can either humble us or make us bitter.

Looking around the room, I saw others with more serious problems than my own. Realizing my fortune gave me strength and desire to lighten their loads. It amazes me what some of these people endure with a smile. They have taught me I can focus on what’s right or what’s wrong in my life. It’s my choice.

Life is hard, and making stupid choices makes it harder. Sometimes I’m right and other times I’m wrong, but I’m always trying to do what’s best. For me life is easier and I have more confidence when I rely on the Lord.

A Man With True Grit

August 2015, Mark in rehab

Here we are again at a rehab center, eleven days after surgery. Since I’ve watched Mark battle rehabilitation for more than twenty-four years, the pain is both heartbreaking and tiresome. It’s difficult not to question why it has to be so hard and painful. One of the benefits of being in a care facility is that we are surrounded by people with similar struggles. Most of the patients here are overcoming a knee or hip replacement, but a few have an even more serious struggle like bone cancer or a stroke. As I get to know each patient here, my heart goes out to them and as I watch their progression in conquering their health challenges, I rejoice. We are surrounded by people with true grit.

Mark was not a perfect candidate for a total hip replacement so he had several tests to determine whether it was a possibility. Every test revealed a new problem such as severe degenerative disc disease, osteoporosis and scoliosis of the spine and osteopenia (a precursor to osteoporosis) of the hips. The results were discouraging and overwhelming. The bone density test reveal he was a high risk for a break. What should we do and when do we give up? These two questions took months to answer.

The orthopedic surgeon gave Mark only a 50% chance of the surgery improving his condition. Mark replied, “I’ve beaten lesser odds,” and decided to go through with a total right hip replacement despite the risks. Mark’s continuing optimism and determination for betterment is one of the reasons why I love and support him so much. He’s taught me you don’t have to be a cowboy to be a man with true grit, which has become my favorite way to describe him.

If you’re old enough, you may remember John Wayne in the 1969 movie, True Grit. There was a remake in 2010, but I preferred the original western of a totally fearless, one-eyed, pot-bellied U.S. Marshal, Rooster Cogburn, who was hired by a determined young girl, Mattie Ross to find the man who murdered her father and fled with the family savings. Rooster was cantankerous and drank too much, but his shooting ability was flawless. He was known as a man with true grit.

The scene that keeps running through my head is the one where Rooster rides his horse into an open area and faces alone a gang of four outlaws he’s been tracking down for days.

One of the outlaws shouts at Rooster, “What’s your intention? Do you think one against four is a dog-fall?”

“I mean to kill you in one minute or see you hang in Fort Smith at Judge Barker’s convenience. Which one will it be?” Rooster haulers back.

“I call that bold talk for a one-eyed, fat man.”

“Fill your hands…” Rooster yells while putting the horse’s bridle reins in his mouth, drawing his rifle in one hand and his shotgun in the other as he charges towards the four men, shooting with both guns.

Despite the unlikely odds, he does take all four down.

This comparison may seem a little irreverent or uncouth, but it’s what goes through my mind as I watch Mark combat rehab. He boldly confronts each challenge using every ability he has. He fearlessly fights for improvement and gives little thought to it taking him down. He is indeed a man with true grit. However, I must add he’s much better looking than Rooster Cogburn and his language, manners and conduct are nicer too.

We all have something to overcome and having true grit helps us get through it. Right now I’m surrounded not by cowboys, but warriors with true grit and I’m particularly fond of the one I’m married to. Just like Rooster did, I believe Mark will come out the winner too.

The Value of Testing

As 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 Blessing in Disguise

There is always plenty of work to do and the holiday season is no exception. Thanksgiving dinner was wonderful, but a lot of work. After hours of preparation, there’s the cleanup. What about Christmas? There’s more preparation for parties, dinners, decorations, shopping for gifts and all of this is done after employment hours. Sometimes I wonder why we do so much. Work can be stressful, strenuous and difficult. During those times I’ve dreamed of a genie (pun intended) granting my wish for less work and more play. In my youth, I also loved to watch the fantasy comedy sitcom, Bewitched. I’ve thought how awesome it would be to have the magical ability to accomplish anything with a twitch of my nose, clap of my hands, or a snap of my finger and thumb, eliminating all the hard work.

Have you ever thought of work as a blessing? Usually I think of it as the means to provide for the necessities of life. Without work, how do you pay for, prepare for, or participate in recreational activities and vacation time? Everything takes work, including the fun times.

I didn’t realize the worth of work until after our car accident, which made it impossible for Mark to continue in the electrical career he was schooled and trained in. He dedicated twelve years to the trade and was successful, reaching the highest level as a master electrician. After eighteen months of rehab, he was anxious to get back to work. Realizing he wouldn’t be able to work as an electrician while in a wheelchair, he asked every day what he should do with his life. He said he needed to be productive to have self-worth and wanted a purpose for life. Work provides purpose.

It was hard to imagine what he could do or that any other kind of work could bring him the fulfilment the electrical field did. I tried to convince him that rehab was his job. His focus should be regaining his physical and speech abilities so that he could go back to work as an electrician. Two years passed and he continued with his rehab, having eye surgery to fix his double vision and two surgeries on his feet to correct the foot drop, which made it difficult for him to stand. He continued to ask often when he could go back to work. I hadn’t realized before how important work is for making life worthwhile. Sometimes we don’t appreciate what we have or what we can do until it’s no longer available.

We volunteered at our children’s elementary school twice a week, reading with the kids or helping with math and spelling. Mark enjoyed the kids, but sometimes they couldn’t understand him because of his speech impairment. Children are so honest and they would ask him often what happened to him or why he couldn’t walk or talk. These comments appeared to bother me more than Mark, who is accepting and understanding of others curiosity. I wanted to protect him and our own two children, wondering what questions and comments they had to endure. I was worried our children might become discouraged or uncomfortable with our circumstances so I thought it would be best if we volunteer elsewhere.

After checking into options with our church, Mark was able to do some volunteer work at the Bishop’s Storehouse posting food orders in the computer twice a week. He also went to my brother-in-law’s family music store to stamp their logo on their sheet music at Day Murray Music. He enjoyed and appreciated the opportunity to go to these places and volunteering his time, but he wanted to financially contribute to our family needs.

The next year brought two more surgeries to fix Mark’s hip joints, which were filled with calcium, making it impossible for him to bend at 90 degrees. With his sight still set on getting back to work, I heard Mark often rehearsing electrical codes or terms so he wouldn’t forget them. He wanted me to pay the fee to keep his Master’s License current, but he was willing and wanting to do any kind of work until he got back on his feet. I had a hard time envisioning him finding any kind of employment because he was dependent on me for most tasks of daily living such as dressing, transferring in/out of the wheelchair and transportation, but wanting to support his goals, we pursued Vocational Rehab.

Mark at work desk at Discover Card

The male crew in the mail room

He went through an intense week of testing. His I.Q. score was higher than normal, but his physical skills were low. The program helped place him in a part-time job at Discover Card. He did computer work recording P.I.N.’s (personal identification numbers) and enjoyed that job for eight years until they closed down the mail center. This was the appointed area for all the eight employees with special needs. They worked together with one supervisor who was trained to oversee and help each individual accomplish their job. Most of the special needs employees sorted the mail to the various departments and delivered them there. Mark worked on the computer, but because he needed help getting to and from the Paratransit bus to his desk, the restroom, lunchroom plus make sure he was stocked with the paperwork needed for his computer entries, his work desk was located in the mail room. He couldn’t do this job without the help of the supervisor. The group of special needs employees were devastated when they were replaced by equipment which sorted and delivered the mail to the various departments in 2004.

2004 Discover Card mail room crew

What do we do now? I knew it would be hard to find a job where Mark would be safe and get the help he needed to accomplish work tasks. I also knew he wouldn’t be satisfied being at home every day without work. I learned the importance of work and realize its worth is so much more than the monetary value. Work brings happiness.

Work is a blessing in disguise. We may curse it and wish we had less of it to do. I no longer dream of a genie to lighten the work load, but rather one who could help us find work for Mark. It would be nice if I could twitch my nose, clap my hands, or snap my finger and thumb and make a job appear.

On Tuesday I’ll share with you tips on how we found work for Mark.

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?