Go For The Gold

Kevin PearceThe 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.

Kevin Crash ReelThe 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-pearce-2 years post TBIKevin 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 love your brain

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!

 

 

 

Advertisements

Let it Snow!

This slideshow requires JavaScript.

As far as I can see, our world is draped in white. Everything looks so fresh and clean.  The trees, bushes, and homes along our street look beautiful in their new bleached attire. I’ve enjoyed the sun and not needing a coat outside, but It seems very strange for January. The anticipation of this cold outburst made me appreciate it all the more! I was a little sad when the snowplow made its way down our street this morning. The covered streets looked peaceful, void of cars, and I imagined the quiet morning the storm provided each family by the appearance of being snowed in.

The last few snowflakes dropping calmly from the sky were not in a hurry to make a landing. They appeared to be enjoying their slow, belated trip with graceful twirls that made for a fun dance to watch, reminding me of the value in embracing the journey. They performed with a peaceful solitude, without care they didn’t make it with the crowd of snowflakes earlier. It is a reminder of the calm I feel when I’m not comparing my life to another and the time it takes to complete a goal. I’m happiest when I’m not in competition and applaud others for their accomplishments.

After the snowplow awakened our street, I watched the neighborhood kids outside making a slide for their sleds. My mind drifted back to the fond memories of my childhood, sledding down many hills. Then I recalled my children making forts, snowmen and a snow hill on the slide Mark built on their swing set for a fun winter inner-tube slide.

yellowstone-snowmobiling-bison-wildlife-1280x853In my youth, my parents bought snowmobiles and Yellowstone during the Christmas school break became our annual vacation spot. To me the ride was more thrilling than any in Disneyland, with beauty unlike anywhere else. The bubbling hot pots and geysers were colorful and stood out on the white canvas. The intense heat from nature’s tubs kept the snow melted around them, making an easy place for the wildlife to graze. These beautiful pictures are forever etched in my brain. Fortunately, this tradition lasted into the first few years of our marriage, so Mark was able to enjoy this winter wonderland with us.

Since the car accident, which rendered Mark wheelchair dependent, we usually stay indoors during the winter months unless I’m shoveling the driveway or driving to a destination. It’s been many years since I’ve played in the snow. Maybe it’s time to take advantage of the fun it can provide.

I sent Katie and Eldin a text. “Would you like to build a snowman in the back yard? Hot chocolate, dinner and a movie are also possibilities.” To my delight, our 33-year-old daughter accepted my invitation. The snow was powdery and nearly impossible to pack and we are seriously out of practice in how to build a snowman. Katie came up with a brilliant idea of making an igloo instead. I thought about her Barbie and Ken dolls I have in storage and how fun it would be to put them inside the igloo. It was getting cold and this would take more time to dig out. We opted for the Fisher Price family instead.

Life is about memories. Sometimes I’m so wrapped up in my caregiving responsibilities I forget to enjoy the journey. There are experiences I know I’m missing out on and under our circumstances are impossible for me to do. I’m grateful for slow, peaceful snowflakes after our first winter storm, which reminded me to embrace my life without comparing or being in competition with anyone other than myself. An igloo isn’t the snowman we set out to create, but the event of being together was still fulfilling and made for an amusing memory.

Yes, snowmen are cute and I still hope to build one sometime this winter. For now, I’ll enjoy the ones that adorn the inside of our home. I love snow for its beauty and the possibilities it creates for play. The memories of winters past and present are cherished. I appreciate snow from indoors too. With the fire burning and the quiet, peaceful feeling of being home bound, I’m provided with the perfect opportunity to write. So tonight, inside our warm, cozy home I’m singing, let it snow, let it snow, let it snow!

Celebrating an Annual Close

New YearI hear noisy fireworks outside, the sign of people celebrating the close of another year. I needed the reminder that there is always something to celebrate when we finish a year.

I always suffer with melancholy at the end of the year. As a child, it was because the Christmas season and break was coming to an end. As an adult it’s because I’m haunted by the goals and resolutions I didn’t achieve. My unfulfilled expectations discourage me. I’m plagued with wondering how I can better plan for the New Year and actually complete my goals. Instead of progressing each month, it feels like I’ve been regressing.

The antidote to my despair is hopefulness in the things I have accomplished, and gratitude for the people in my life who make it possible. A change of heart occurs when I reflect on the blessing of family, friends and experiences of the past year with a grateful heart. When I’m thankful I find peace with my life and my relationships.

When something good happens I like to write about it in detail. When I’m feeling down, I’m lifted when I read it. I’m finding it hard to write lately, partly because I’m out of practice so it takes more time, and secondly it’s difficult to make the time. Fortunately, I’ve taken time to at least capture some of the good times with pictures.

These pictures help me remember the joy I’ve experienced this year. Maybe I achieved more than I originally thought.

Forgive yourself

This month I didn’t accomplished near the things I traditionally do in December. It’s the first year I didn’t hang Christmas lights outside, or send out Christmas cards. I didn’t bake sweet bread like I wanted to for my neighbors and friends. Luckily the world didn’t come to an end and my neighbors and friends are still good to me. I hear them outside with joyous fireworks. They are finding reasons to celebrate tonight. I think I will close this article and go join them.

 

Give ThanksI thank you for being a part of my life’s journey.

 

What 2017 accomplishments are you celebrating tonight?

Ending a Thanksgiving Month

This month has been hard, harder than usual. So another fitting title came to mind, Grateful This Month is Over. However, the word thanksgiving makes me smile, so it quickly became my preference.

Sammy

Sammy at 22 years old.

The first two days in November were uneventful, like the calm before the storm.  The cliché is most fitting due to the unseasonably nice and warm weather we were enjoying. On the third day, my month fell apart when our twenty-two-year-old cat, Sammy, disappeared. He seemed anxious that day, meowing and pacing the house. The weatherman predicted a storm coming and I assumed Sammy sensed it too and wanted to go outside to enjoy the nice weather while he could. I let him outside and took advantage of the empty house by vacuuming. When I finished, I opened the back door, but he wasn’t there. At this point I wasn’t too worried and thought he just ventured farther than usual. I went back inside to complete a few more chores. The wind started to howl and it was dark. He wasn’t there on my second check. I earnestly searched all his favorite outdoor spots to curl up, exploring every possible place in our yard and garage. When he wasn’t there I got in our van and searched the streets. No Sammy. Did he run away to die? For the past year I’ve joked he was in hospice care because last November I brought our outdoor cat inside, due to wounds he received in a cat fight.  I really didn’t expect he’d survive then, but wanted to make his last days comfortable and happy even though he often triggered my asthma. He was my irrigation buddy and kept me company every time I worked out in the yard. He was there for us when our children grew up and moved away. A portion of our garage became his apartment, which he could freely go in and out of during the day, but closed in at night. He was there for me every time I came home, which I appreciated, especially during the times Mark was hospitalized. We’ve put a cat down before and I wasn’t ready to do it again despite his old age. I hoped Sammy could pass naturally in our home with us by his side.

It’s hard not knowing what happened to Sammy. I feel cheated I didn’t get to give him a proper goodbye for all those years we’ve enjoyed his companionship. But I’m grateful for the memories made and I especially appreciate this past bonus year we’ve had with him.

Dad & Sammy

Dad with Sammy, Dec. 2016

Six days later, after I’d raked most of the leaves in our yard and moved every storage box in the garage looking for Sammy with no closure made, my dad had a heart attack. Heart disease is unfortunately prevalent in my family. Dad’s first heart procedure was in 1985 – a triple bypass surgery. Then he was only 57 years old. In 1995 he had an heart attack and they put a stent in to correct the blokage. For the past year I’ve been going with Dad to his cardiologist appointments treating his heart murmur, a-fib and congested heart failure. I worried his heart was a ticking time bomb and I fretted about the when and how it would go off. Luckily it was a mild heart attack and not the massive one I feared. Over the next 6 days he had many tests and two procedures to create the best treatment plan for his heart problems. A heart valve replacement and a pacemaker were the remedies given and he made it through the surgeries with only one complication. His heart rhythm was off, so they had to give him a shock treatment which corrected that problem. We were relieved and expected to bring him home in a few days. On discharge day his heart went out of rhythm again and despite medication, they couldn’t get his heart to slow down.

IMG_2385

Taking time to celebrate with my mom and my super siblings. I sure love this crazy bunch! We were missing Dad, so we took the cake and ice-cream to the hospital conference room to have with him. Nov. 2017

After two days another shock procedure became necessary. It did the trick and now we pray he can stay in rhythm. He is a miracle and we’re grateful for so many prayers which aided his recovery. Close calls like this make me realize how fortunate I am to have my parents. It renews my appreciation for their influence in my life and the foundation they set in building a strong family. I have wonderful siblings and collectively we support and unite, especially when one of us is in need. I’m blessed to go through life with them.

As if the above wasn’t enough stress, Mark’s severe bladder infection and elevated PSA level led to more tests, which found a lesion in his bladder and an enlarge prostate.  Surgery to fix both problems is scheduled the first week in December.

An unfortunate side effect of Mark’s traumatic brain injury is seizures and they are more numerous when he has any other health issue. This month the seizures have come abundantly.

IMG_2389 (2)

Nov. 2017 Mark and I

Mark is blessed with a great sense of humor and he uses it constantly to cope and to put others at ease with laughter. The other night after a seizure, I asked him how his head felt. He said, “Full of wisdom.”

“I’m not sure how that feels, but I assume it would feel pretty good,” I replied as my worries were lifted.

In the urologist’s office, after the doctor explained the upcoming procedure, he looked at Mark and asked him if he had any questions. Mark rubbed the top of his bald head and said, “How do you keep your hair?”

The doctor laughed and replied, “I have a hair Goddess. She blesses me with hair so I can cut it and donate it for wigs. Then she blesses me again.”

I‘m fortunate to have a man that works through hardships with comedy. He’s a joy to be with and knows just how to lessen my concerns.

I can’t blame Sammy for taking off. There have been days this month I wish I could crawl under a bush somewhere and not be found. I wonder if he sensed a different kind of turmoil than the weather storm that was brewing the night he left. I speculate he thought he’d do me a favor by leaving and give me one less thing to tend to.  If this was he thought, he didn’t realize the hole in my heart he’d leave.

The month of November encourages me to have a gratitude attitude. This month I’m thankful that despite the hardships and worries experienced, I still have a lot to appreciate!

Daddy’s Girl

Scan0029

Me at age two

As a child I heard Mom say, a time or two, I had Dad wrapped around my little finger. I was the only child out of their five that he witnessed the birth because way back then fathers were not allowed in the delivery rooms at the hospital. I suspect I didn’t want him left out, so my delivery was at home.

It all started after my grandparents came to take my sister, Rosanne, home with them for an overnight stay. They did this often, taking turns with each grandchild. After they left, Mom started having strong contractions so Dad called the doctor and told him they were on their way to the hospital. Because of the pain, Mom struggled to walk to the back door towards the garage. Dad rushed ahead to drive the car out of the unattached garage closer to the back door. When he got back in the house to help her to the car he realized her water broke and the impatient and determined baby was already on its way. He ran to the phone to call the doctor again and heard the television. Realizing there was only a stairway between where they were upstairs in the kitchen and where my two brothers were downstairs in the T.V. room added concern to this already stressful situation. Dad hollered down the stairs, “No matter what, you boys do not come up these stairs!”

Scan0032

Rosanne, Mick, Me & Dad

Mickey, age seven and a half and Donny nearly four, paid little attention to the hustle and bustle at the top of the stairs. Fortunately, they were more interested in the show than the arrival of a new baby, so it was easy to obey their father’s order.

By the time the doctor got to our home I had already arrived. What an entrance for a nine pound baby! I wish I could remember it… What I do remember is being referred to as their “kitchen baby”. Depending on the day, or the mood, I was amused at the thought of coming into the world in this unusual way, or completely embarrassed.

04-FamilyMurrayHomeI’ve been told Dad often teased Mom during their four pregnancies that he had delivered lots of calves on the farm, so there was no need for a doctor. I guess I was listening.

Scan0031

Don, Me & Dad

I’ve always had faith in Dad’s abilities. He can usually fix anything I break and is willing to help me build whatever my mind dreams of.  I enjoy discussing ideas with him because he doesn’t tell me I can’t accomplish it, but rather points out the difficulties and then helps me find solutions to make it work out. He’s taught me to work hard for what I wanted and not to be afraid of failure. If the intended outcome didn’t occur on the first, second or third attempt, you just keep on trying and learn from your mistakes. His wisdom, experience, encouragement and optimistic attitude greatly benefit’s my life.

Dad & I Snowmobiling

1980, Dad & I

Dad and Mark

1980, Dad & Mark

Dad showed me how to have fun by providing many outdoor adventures. Horseback riding, waterskiing, snowmobiling, four-wheeling are just a few of my favorite things to do with him. He instilled in me a love for the outdoors.

Dad playing horse

Enter a caption

In addition to being adventurous and hard-working, he is generous with his time and shares everything he has. He cares about people, especially family. He loves my children and husband just as deeply as I feel he loves me.

Dad’s endured much heartbreak, but you’d never know it by his cheery nature. His mother died just a couple of weeks before his twelfth birthday and his father’s death was ten years later. Years passed and a sister was sadly murdered and he was the one who had to identify her body. He’s borne family and business disappointments without bitter feelings. He’s dealt with many health issues with no complaints. His life demonstrates how to accept the things you can’t change with calmness, while having courage to change the things he can. Without calling attention to his hardships, I recognize them and have learned a lot from the way he quietly handles his trials.

Many years have passed since my rare entrance into this world and I’m grateful for the bond it made between us. I appreciate the model he’s given me to pattern my own life and thankful for the love and support he gives me. Dad, I love you!

Scan0091

2008, Mark & Dad on his 80th birthday party

Happy Father’s Day to two of my favorite men!

 

Tender Mercies Amid the Challenges

Written by Peggy Peterson Martin

Peggy Dave 2014My husband, David Paul Martin, age 74, passed away the morning of November 5, 2016 at a Hospice Facility in Las Vegas, Nevada.

It all started with blood clots in early 2016… first one in his right leg, then one in his neck, then two in his left leg. Dave’s Oncologist couldn’t figure out why a 74 year-old man would suddenly start getting blood clots. She scheduled him for a colonoscopy, because he had colon cancer in 2003, and an endoscopy which they were supposed to do the same day. However, the doctor didn’t receive the orders for the endoscopy in time, so he only did the colonoscopy, which was clear.

Then on September 25, 2016, Dave had a stroke and was taken to the hospital by ambulance. He was expected to make a full recovery and released, but he developed pain in his side and back which kept getting worse. He was also unable to swallow solid food. Less than a month after his stroke, he was frustrated by the pain and liquid diet. Unable to get satisfactory answers from his Primary Care Physician, he asked to be taken to the ER. He was admitted and spent eight days in the hospital where an endoscopy was finally performed, which showed a large tumor at the base of his esophagus. It turned out to be stage 4 esophageal cancer and had metastasized to his liver. We found out it was the cancer that caused the blood clots and stroke! Dave was allowed to go home to consider his treatment options.

Martin's last family picture

2016, “Our last family picture,” Dave is in a white shirt and tie while the rest of us are in our grubbies because he wanted to have an obituary picture taken. We used something else, however. The blanket is covering his pajama bottoms!

Feeling a sense of urgency, all seven kids arrived within three days, including our son, David, who had recently moved to St. Thomas, Virgin Islands. This was a beautiful weekend together. Despite his almost constant pain, we shared many tender moments, laughs, tears, and memories. It was also a difficult weekend because Dave decided to forgo chemotherapy which would only have limited effectiveness at best. Hospice was called a couple of days later. Dave was getting weaker, but his wish was to spend his remaining days at home. Unfortunately, hospice couldn’t give him the medication he needed to manage his pain at home, so they transported him to their care facility in Las Vegas. He never regained consciousness once they medicated him. He passed away only ten days after his diagnosis. Though this was a very difficult time, we recognized several tender mercies from the Lord.

Martin's KidsA year earlier, our daughter, Missy, and her family surprised us and drove all the way from their home in Charleston, Illinois, to show up at our son, Steve’s house in Herriman, Utah, for Thanksgiving dinner. All our other children were there, and it was the first time in over twenty years that we’d all been together for Thanksgiving. Dave was particularly touched and told Missy, “I’ll never forget this special surprise.”

Martin GrandkidsIn June of 2016, despite pain from two blood clots in his leg, Dave and I made a trip to Salt Lake City to see our kids and 23 grandchildren, including Missy and her family who were there on vacation. Jeff and his family from Henderson, Nevada, also just happened to be there for his wife’s family reunion. Our son, Rob, invited us to do some temple work with him. When we agreed, he decided to open the invitation to his siblings as well. Maybe it was Rob’s offer to buy everyone lunch, but all seven of our children and all but two of their spouses joined us in the Mount Timpanogos Temple that day. Having our whole family together was such a special experience, and everyone felt the significance and joy of being together there. It just happened to be our 49th Wedding Anniversary! This is a memory I especially cherish since we didn’t make it to our 50th which would have been next month.

Dave & Peggy 1967As soon as Dave came home from the hospital after the devastating diagnosis, our son, Rob, took off work and stayed at our home for over two weeks, not leaving until after the funeral. I couldn’t have done it without him. He was a rock of strength and faith. He helped Dave with many of his physical needs which would have been difficult for me. While Dave was on his deathbed, we had a sewer flood through our house causing significant damage, both to the main floor and the basement. Rob discovered it and was there to help me bail water, trying to keep it from going into the bedroom where Dave was sleeping. Though we didn’t succeed, Dave never fully realized the extent of what had happened. Rob and some of our other children were invaluable in handling the mess and dealing with the plumber, restoration company, and insurance matters.

A tender mercy Dave had in his final days is that he was visited on two occasions by his deceased parents and brother, Leonard, who was killed while serving a mission for our church in Pennsylvania. This brought him great comfort and made him feel he would be with them again when he died.

Dave never became a burden. It was a pleasure to care for him. Several of our kids stayed in our home during Dave’s last few days. They took turns caring for him at night and spending time with him during the day. He was uncomfortable most of the time and in obvious pain, so it was heart wrenching to feel so helpless, but we were willing to do anything to give him even a moment of relief. His rapid decline and death were both devastating and merciful…devastating because it happened so fast and we felt cheated, hardly knowing how to prepare for or deal with our loss…merciful because he wasn’t made to suffer any longer.

We all feel gratitude for the few days we had with our dear husband and father before his passing. His love of family, great example, words of wisdom, and the blessing of serving him will stay with us long after the grief has passed.

***************

Dave and Peggy were one of the first ones to welcome us to our new neighborhood in Draper, Utah in the year 1996. Our friendship grew as Peggy and I participated regularly in a line dancing class for exercise. We also enjoyed serving together in a women’s organization for our church. In 2002, they moved to a new home in Boulder City, Nevada. Fortunately, the miles between us did not break the friendship bond. I treasure the memory of a few surprise visits when they came to Utah to see their kids. They always left with an open invitation for us to come to Nevada and stay with them. Dave encouraged us by commenting their home was wheelchair accessible. I regret we never made the trip. 

On this Memorial Weekend, I thank Peggy for recognizing and sharing her tender mercies during such a difficult time. I cherish our friendship and appreciate that when we’re together, it doesn’t seem like years have passed. We easily pick up right where we left off! 

 

 

 

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.

124 (2)

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.

IMG_1561

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.

5K train7

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

5K train8