Hurdles in Our 5K Goal

5K 5 years ago

BIAU 2012, 5K: Katie, Mark & I

For many years we’ve enjoyed participating in the annual Brain Injury Alliance of Utah (BIAU) 5K Run, Walk & Roll. The past two years we’ve missed due to recovery from a hernia surgery one year and a hip surgery another. The 5K is always held the third Saturday in May, so in January we put it on our calendar and set a goal for me to push Mark in the wheelchair most of the way, but the last stretch he would walk with a walker to the finish line.

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2014, Family at the 5K, Cami, Ruth, Don, Katie & Mark

We’ll name our first hurdle plantar fasciitis and heel spurs. My feet were killing me and not just in the morning when I first got out of bed, but lasting throughout the entire day. With the 5K just two months away, I decided it was time to get medical help from a podiatrist. After x-rays which revealed a bone spur on each heel and an ultra sound to detect the inflammation of the ligament on the bottom of each foot, I opted for a cortisone shot. With little improvement, but determination to walk the 5K, I went back a month later for another cortisone shot.

The second hurdle we’ll call a VNS replacement. A month ago Mark had his regular six month appointment with the neurologist to check his Vagus Nerve Stimulation (VNS). This device is designed to prevent seizures by sending regular pulses of electrical energy to the brain via the vagus nerve. These pulses are supplied by a pulse generator somewhat like a pacemaker and are sometimes referred to as a “pacemaker for the brain”. It is placed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck.

VNSMark has had a VNS for ten years now and it keeps him from having grand mal seizures. Normally, the device goes off every 1.8 minutes and the regular pulses are set at the strongest setting available. Every six months we have the generator checked, which consists of  Mark holding a wand to his chest where the generator is located. The neurologist is holding a hand-held computer, which is attached to the wand by a cord. Like magic, a report appears on the screen indicating how well the VNS is working and the amount of battery life left. The neurologist can make needed adjustments on the computer while the wand is placed over the generator. It’s amazing and weird all at the same time.

In September, the neurologist told us the pulse generator was running low and should be replaced soon. I was recovering from a total dislocated shoulder and the thought of another surgery overwhelmed me. The neurologist called the manufacturer of the VNS and gave them the numbers on the report. They figured the device would last until May. When we went in for the next check in March, there were no numbers to report, only a message stating, “urgent, replace immediately”.

Unfortunately, it takes weeks to get an appointment with a neurosurgeon even if it’s urgent and another ten days to get the surgery scheduled with the hospital. They didn’t realize we were determined to make it to the 5K, nor would it have mattered. The surgery finally happened, but just one week before the 5K.

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Mark & I before his VNS surgery 05/12/17

Mark sailed through the surgery. It’s nothing compared to a total hip replacement. We thought we were on the homestretch until we came to the next hurdle: seizures. Since the old VNS hadn’t been working properly, the neurosurgeon didn’t set the new one at full strength. He thought it best to increase the strength gradually. In the past week after his surgery, Mark has had several seizures. Apparently, it’s set at a lower level than the old, worn out VNS. The pulses of electrical energy must be too mild to do much good.

The 5K was one day away and we were still determined to walk to the finish line, but one more hurdle got in our way. I’m not sure if it was something we ate or a 24-hour bug, but we both were hit with diarrhea. Not fun for me, but worse for Mark.

5K train3We had to make some adjustments to our 5K goal. I wouldn’t be able to push Mark in his wheelchair, but we were still determined to walk at least 150 yards to the finish line. That might not seem like much of an accomplishment, but for us it was quite a feat. Mark worked on hard on gaining strength, mobility and endurance with his therapists, volunteers, family members and his dedicated trainer, Jonathon. He walked with a walker about four times a week with two people assisting, one in front and another behind him, keeping the wheelchair close by in case a seizure occurred. He often joked, “Must I drag all of you along?”

I wondered if one might think we looked like a train wreck, but the cheers of encouragement told us otherwise. We were thrilled to reach our goal past the finish line. The 5K, which turned into a 150 yard walk for us was quite an achievement with the hurdles we had to overcome.

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JonathanDadEldinThank you Jonathon, Eldin and Katie for your support in helping us reach our goal!

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Two Hats of Many

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Wanda holding sister, Jerrie (1), Karen (2) on Mark’s 11th birthday

I’ll bet every woman feels she is wearing too many hats from time to time as she tries to fulfill the needs of family, friends, personal, professional, neighbors and colleagues. Today we celebrate mothers of the family and the influence women have in society. Next to my own mother who gave me the gift of life and continues to effect who I am today, stands my mother-in-law, Wanda. Her optimistic power in Mark’s life is a great blessing to me too.

Besides being a creative, fun, loving and caring mother, she made a career as an Occupational Therapist (OTR). Wanda was the first OTR I’d met and I assumed she helped people find a job. It didn’t take long for Mark to set me straight. She helped people with mental illness perform activities needed in daily life by using a crafts media.

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Mark and Wanda

Through the years after our accident, I quickly learned the importance of skilled OTs. The ability to brush his teeth, feed himself and get a shirt on became the tasks Mark had to relearn after his Traumatic Brain Injury (TBI).

Since 1991, I’ve met more OTs than I can count and I appreciate each one for their help with improving Mark’s quality of life.  Whenever meeting an OT for the first time, Mark proudly states, “My mother is an OT” He then shares some experiences he had as a child with her work.

I’ve written, “I was raised to be a caregiver.” My upbringing helped prepare me for this challenge. Likewise, I believe Mark’s childhood prepared him to be a survivor.

Two hats, Mother and Occupational Therapist, which have had the greatest impact in our lives.

I asked Wanda why she chose this career and she agreed to let me publish this interview.

The first thing that drew me to OT was a movie called Snake Pit. It was about a woman who was committed to an asylum and how she eventually recovered and was released. When I was picking a major in college and looking through college catalogues, OT caught my eye because it involved helping people and a lot of crafts. I learned that psychiatric hospitals had OTs and the deeper I looked into it the more interested I became. Psychiatry and the idea of helping someone improve their attention span, concentration, attention to detail, better living and socialization skills and generalization by using crafts media was what influenced me most.

How long and what kind of schooling did you need before you could practice OT?

I had four years in college with a major in OT and a nine month internship working with other OTs and passing the national exam, which qualified one to add the R after OT. The internships had to be in all these fields: pediatrics, general medicine, tuberculosis, orthopedics and psychiatry and you had to be over 21. I started college in 1948 and got my degree in 1952. By the time I finished internships I really liked both orthopedics and psychiatry and decided I would take either kind of job. Psychiatry was the first job that turned up so I started in 1953. At that time about the only hospitals that had psychiatric patients were institutions. Since then most hospitals of any size have a small unit for psychiatric patients.

How long did you work in this field?

If I remember correctly, I think I worked in psychiatric settings for 22 years: small private settings, large state and territorial settings and the last 16 years at a medical teaching university.

What made a good patient to work with and what made a good family member or caregiver?

All patients were good to work with. We seldom even met family members because until recently, families were ashamed or afraid of mentally ill family members and seldom even acknowledged them. The patients were committed to hospitals and lived there, seldom seeing or hearing from their families.

How did you feel about this separation from family?

I thought family abandonment was terrible, but that’s just how it was. Some of the staff were concerned about the patients, others not so much. In hospitals where patients stayed a long time (years), they formed friendships and the hospital was like a community.

Describe a typical day at work and some of the crafts you did with the patients.

At Oregon Health Sciences University, the day started with rounds, then OTs led an exercise group and a crafts group before charting and lunchtime. After lunch, we led a relaxation group, then an activities group where we worked on attention span, concentration, social skills, etc. This often involved playing games of all kinds, quizzes or planning for the lunch that the patients got together to cook for everyone on the unit once a week, then more charting. Yes, we used a full variety of knives and never had a problem with them in any of the groups. We did check tools and equipment after all groups. In other settings, OTs were responsible for arranging social events, mostly dances and church services. This included everything from getting the band or minister to setting up the room. Sometimes we took patients on outings such as bowling, walks, etc.

 Some of the major crafts we used were: leather work (hand tooled and carved purses, belts, etc.), weaving on pot holders frames to floor looms, ceramics (slab construction, pinch pots, molds), needlework (knitting, crochet, embroidery, sewing) and all minor crafts you can think of.

There was a job cut, so Wanda retired in 1998, seven years after Mark’s TBI. From my own experience with OTs I can imagine the constructive difference she made to hundreds of patients she helped, along with the students and colleagues she influenced. I witnessed some of this when Wanda visited Mark in the rehab center as she quickly became friends with Mark’s OT  The therapist was new to the field and appreciated Wanda’s experience and sought her advice at times. Since Wanda lived several hundred miles away, she mailed things for Mark to work on or sent articles with ideas to help him.

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Wanda & Mark 2016

There are all kinds of influential women in this world. If you’re lucky, you get one for a mother. Some people aren’t so blessed, but have other women in their life who nurture, teach and inspire them. Today we celebrate all women who make us feel like we’re easy to love and fun to be with. Who gives us freedom to grow and lets us know it is okay to make mistakes. I’m fortunate to have several such women in my life. The greatest of all are my own mother plus a mother-in-law or more appropriately thought of as a “bonus mom.” I think Mark is equally fortunate. He was raised by a wonderful woman and has the advantage of an ideal “bonus mom.”

MothersDayImages1To all the wonderful women in the world who benefit lives in a positive way!

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

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

Written by Laura Nordfelt

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

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

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

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

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

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

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

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

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

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

A German philosopher, Friedrich Nietzsche, actually said it more eloquently: “That which does not kill us, makes us stronger.” I thought this title was fitting for the couple I’m highlighting this week. I met Greg and Laura Nordfelt at the 2013 Brain Injury Conference, just two years after Greg’s motorcycle crash. I’ve enjoyed our friendship and watching this couple get stronger through their traumatic experience

Written by Greg Nordfelt

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

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

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2016 Greg & Laura, Festival of Trees

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

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

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

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

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

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

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

“In the car,” I said.

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

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

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

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

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

On Wednesday, Laura’s will share her perspective.

My Broken Habit

writingloveI can’t believe it’s been over three months since I’ve written on Uniting Caregivers. I’ve missed it and the therapeutic nature writing is for me, but as with any good habit, they are hard to start and easy to break. Why is the opposite true with bad habits? They’re too easy to start and hard to break. Now that I’ve broken my writing habit, I’m struggling to know where and how to restart.

A lot has happened in the past few months. December is always a crazy month with it being the end of the year and the holidays thrown in the mix with related parties. It’s joyful and stressful all wrapped up at the same time. This year my mom, who is the supreme organizer and chief executive of all our family gatherings, was not feeling well so my siblings and I tried to step up to the task. We enjoyed our time together, but nobody can fill my mother’s shoes.

Arthritis and a bad hip are keeping my mother in constant pain and making it very difficult for her to move. Using a walker has been a hard recommendation for her to follow, but for safety sake’s she reluctantly agreed. My mother has always been the ultimate caregiver to those around her, yet it’s difficult for her to accept help from others. Switching roles is a hard transition for all of us, but there isn’t a better alternative than to accept health problems and make the best out of life challenges. Therapy and cortisone shots are her best hope now and she’s doing both.

Dad works hard to keep up with his new household responsibilities in addition to all his old ones. Assisting Mom with cooking meals and doing laundry along with driving to every doctor and therapy appointment can be strenuous. Living in the same household with them has been a blessing and I help as much as I can along with four wonderful siblings who all live nearby. Unfortunately, Dad recently developed pneumonia. We’ve all stepped up a little more to help out and as our family works together, our love and appreciation grows stronger.

Caregiving comes in all sorts of intensity sizes and experiences. Soon after Thanksgiving, our twenty-year-old, outdoor cat became very sick. I love all animals and have had many in my lifetime. Several years ago I started suffering with asthma and my complete dependence on breathing and the adverse impact that animals have on my airways made it necessary for me to love them at a distance. What I wish could be indoors had to be outdoors and as our beloved pets passed on, we haven’t replaced them.

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Sammy, February 2017

Sammy is a beautiful Siamese cat with more than nine lives. He has stayed with us longer than either of our two children, who both left home at eighteen years. He isn’t cherished more than our children, but still cherished for being a loyal friend day in and day out for a very long time. When I pulled our van into the garage, which is also Sammy’s apartment and he didn’t come out to greet us, I was worried. I found him in a corner looking distraught and unloved with his matted hair. I grabbed his hairbrush and with the first gentle brush stroke he nearly fell over. I put him in his bed and brought it in the house. He lay motionless for most of the night, which I know because I tried to sleep on the couch by his bed with one eye continually on him. I expected him to die that night.

I don’t know for sure what happened to Sammy, there was no blood or noticeable injury, but I suspected a cat fight. There had been a black cat hanging around, which Mark named Spook Impostor after a similar adored black cat we had thirty-five years ago. This particular night we saw him leaving the yard as we drove in.

The next day Katie helped me give Sammy a bath and we inspected his body for wounds. We did find a couple of puncture wounds by his right shoulder, but they didn’t appear to be bad. Days went by where he only woke up to eat and to use the litter box. I continued daily breathing treatments and shed many tears because I didn’t expect he’d live much longer and it would be the end of the pet era of my life.

Some family and friends suggested I put him down. I had to do that eight years ago with our cat, Figaro and that tied my stomach up in knots along with giving me a bad asthma attack from the vets office and all the animal dander in the air. Since Sammy didn’t seem to be suffering in pain, I wanted him to go naturally.

Nearly four months later, I continue to give Sammy hospice care. He’s had a cyst fill with infection, drain and heal, then come back four times now. He has gained weight and strength, only to lose it again. It’s a roller-coaster ride, but I want to care for him as an expression of my appreciation for his long-time companionship.

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Dad with Sammy December 2016

Amazingly, my asthma is doing better. I rarely need breathing treatments now. We did get an air purifier, which I’m sure has helped my allergies, along with hypoallergenic wipes I use on him almost daily. I’m enjoying this time with Sammy and he is the perfect house cat. He’s too old to jump up on furniture or counters. I know his days are numbered and I enjoy every day we have with him.

Aging in any life is hard. As I try to help and support my loved ones through it, my life is enriched. So as much as I enjoy writing, providing for the needs and cares of my family will come first while I try to mend my broken writing habit.

The Advantages of Gratitude

Gratitude Unlocks.jpgLast Thursday I had the opportunity to speak to the caregivers of the Brain Injury Alliance of Utah support group. The title—Gratitude When You Don’t Feel Grateful.

I’ve been asked, “How long after the accident did it take you to feel grateful?”

gratitude-shortcutsOne of my first thoughts after I realized we had been hit and were pinned inside the wreckage of our car was, I’m grateful the kids aren’t with us. It was on a Saturday afternoon and we needed to make a final decision on which home to purchase. Fortunately, we left our two young children with my parents while we traveled to our three favorite homes one last time before making an offer. Looking at the back seat of the car makes it evident their chance of survival would have been near impossible. During the three months Mark was in a coma, I realized it could’ve been worse had our kids been with us.

I recognized the blessing right from the beginning, but that doesn’t mean I always see the positives and feel grateful. Sometimes my mind stumbles into a pity party where I’m entertaining thoughts of how Mark’s, mine and our children’s lives would have been if the accident never happened. Yes, at times I wish life could have turned out differently.

I suppose it’s human nature to feel this way, but before long I realized what a drag it is. When I recognize I’m staggering in self-pity, I remind myself what a waste of time and energy it is because all the wishing, worrying or feelings of regret do not change the situation. It only brings me down.

Some days are dark and worrisome, but the best way to pull myself out of discouragement and unhappiness is to turn my thoughts around by looking for the positives. Sometimes this is harder to do than other times, but I’ve learned it helps every time. When I consciously focus on the positive, I see the it in more situations. It gets easier with practice and before long my outlook on life changes for the better. I’ve learned I attract what I’m focused on.

As I recognize the positive interactions of family and friends, I can readily appreciate them for the love and support they give. The result is—they’re usually all the more helpful and loving. That isn’t the motivation for appreciating them, it’s just the way it works out.

gratitude-transformsWhen my kids were teenager’s I started a gratitude journal. It helped me get through a rough time. Every night I wrote down five things I was grateful for. Some nights it took a while to think of five things I appreciated. Knowing I needed five things to write each night encouraged me during the day to notice the positive in simple things and take mental note. This practice turned my discouragement into encouragement. It brought inner peace because I was focusing on the good instead of dwelling on the bad.

I don’t believe gratitude always comes naturally, which is another good reason to write down what we’re grateful for. In times of discouragement we can go back and read it. I found that remembrance really does help.

be-thankfulOne evening a few years ago, we were having a birthday celebration with my parents and siblings. The conversation centered on their travel destinations and the wonderful things their grandchildren were accomplishing—two things which are lacking from my life.

My mind traveled to that depressing pity party, with thoughts turned to all the places I’ve never been nor could possibly go to with Mark. I lost focus on how blessed I am to have my siblings who all live nearby and both my parents still alive. For an evening, I forgot how fortunate I am for the love and support we all share with one another. Instead of enjoying with them their experiences, I let ungratefulness take over my heart and mind. grateful-happiness

I didn’t live in thanksgiving that night, yet I know I’m happiest when I do. I believe gratitude is the key to happiness. I remind myself often to count my blessings so I can feel peace and contentment in my life. It works every time.

What hidden advantages do you feel gratitude brings to your life?

 

Embracing Life Challenges

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

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

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

I nodded and told him it made sense to me.

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

I asked JR what diagnosis brought him here.

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

“That sounds awful,” I said.

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

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

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

“What happened,” I asked.

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

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

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

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

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

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

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

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

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

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

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

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

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

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