National Ability Center Summit Challenge: Not riding, but still in the saddle.

The National Ability Center, Park City, Utah

Last month I had the opportunity to volunteer at the National Ability Center’s Summit Challenge  Bike Ride.  The event is an annual fund raiser for the Park City based organization that provides recreation for people with disabilities, from autistic children to veterans.

A few of the 800 riders at the start.

 I’ve ridden for the last four years, but this year due to my knee replacement, I was unable to ride.  I figured registering other riders was a good way to be involved.  Plus, I got to spend some quality time with my daughter Erika, who had also signed up to volunteer.

So Friday morning, August 26^th I found myself at the Newpark Hotel at Kimball Junction at 6:30 a.m. with NAC staffers Julia, Kassandra, Heather and Jan, and volunteer (and fellow spin class sufferer) Pat handing out bib numbers and swag bags to a good portion of the 800 riders registered.

   

Cyclists of all abilities hit the road.

Saturday morning, the day of the ride, Erika and I were in the parking lot near the NAC at 5:00 a.m. in the 42 degree darkness, setting up tables, organizing spreadsheets and bib numbers, getting ready for an onslaught of riders who had yet to pick up their numbers. There were three routes: a 102, 52 or 16 mile ride. The 102 milers started at 7, the 52 milers at 9, and the 16 mile riders at 10:30.

 

The Summit Challenge is aptly named.  The 102 mile route features 3000 feet of climbing, as riders navigate through Kamas, Woodland, Frances and Oakley up some insanely steep roads, sometimes in fierce headwinds.   The 52 mile ride isn’t any easier.  I’ve done 38 miles of that route and it beat me up pretty good, especially the nasty headwind in Brown’s Canyon.  Even the 16 mile ride has 900 feet of vertical and it’s no piece of cake. But it’s extremely rewarding, and well worth the effort for such a great cause.

Me at a previous Summit Challenge.

Husband-and-wife team Meeche White and Pete Badewitz founded the NAC in 1985 as a ski school for people with disabilities. White, a recreational therapist with a degree from Florida State University, and Badewitz, a Vietnam veteran and below-the-knee amputee she met while teaching skiing in Colorado, decided Park City would be the place. That first year, with a $5,000 grant from the Veterans Administration, they taught 45 adaptive ski lessons.

At the NAC, skiing is for everyone.

This year, their 30^th Anniversary, the National Ability Center will provide more than 28,000 experiences in alpine and Nordic skiing, snowboarding, aquatics, archery, biathlon, cycling, mountain biking, kayaking, river rafting, camping, hippotherapy—the use of horseback riding for physical and emotional therapy and more. It is considered one of the leading year-round recreation centers in the world for people with disabilities, as well as a center for training world-class Paralympic athletes. Their stated mission was—and still is—to provide opportunities to discover abilities

Good times with Erika.

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I’ve been involved with the NAC since 2006 as a participant and volunteer.  It is an amazing organization staffed with passionate and committed professionals who make life better for thousands of physically and mentally challenged people. They’ve transformed Park City and Utah into one big therapeutic clinic

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This year’s Summit Challenge is the biggest to date.  While it was hard to sit behind the registration table and watch those 800 riders speed by, it was gratifying to know that I was able to be a part of it. Next year, I’ll be back in the saddle, along with my daughter Erika, son-in-law Jason, wife Jayne and granddaughter Ellie.  It’s on the family bucket list. 

Kayaking at East Canyon Reservoir with TRAILS.

Putting water to good use.

Last week I went kayaking at East Canyon Reservoir with my wife Jayne and my friends from TRAILS (Technology, Recreation, Access, Independence, Lifestyle and Sports). TRAILS is the comprehensive outreach program of the Rehabilitation Center at University of Utah Hospital for individuals with spinal cord injury or disease.

Dr. Jeffrey Rosenbluth healing mind and body.

It’s the brainchild and passion of Dr. Jeffrey Rosenbluth, director of the Spinal Cord Rehabilitation Center. The goal is to get patients reactivated and socially plugged in through recreation, education, and wellness programs. Spinal cord injury or not, everyone needs the opportunity to go outside and play to be healthy in mind and body.  

Tanja Kari in her natural habitat, winning gold at the 2002 Paralympics.

TRAILS, under the daily guidance of  Paralympic gold medal winning nordic skier and Finnish wonder woman Tanja Kari, has put together year round programs and adaptive equipment that make it possible for everyone to get out and go whether on land, in the water or on the snow, regardless of physical ability.

There's a floating craft for everyone regardless of ability.

That’s why they sponsor events like the annual Kayaking and Sailing Camp every summer.  It was mega fun. They have an array of water toys suitable for everyone, from people like  me--mobile quadriplegics who can walk and have full, but impaired use of all their limbs--to true quadriplegics, who cannot use any limbs and rely on technology like sip and puff.

Sip and Puff technology makes sailing accessible to everyone.

Sip and puff is a high tech system that allows someone who can't move any limbs to put things into motion by sipping or puffing air into a straw.  They can control the direction of a sailboat by sipping or puffing, which causes electric motors to move rudders back and forth. With a little help from somebody who can help launch the boat and tend to the sails, they can have the same sailing experience as an able bodied person.  It also works on snow, on a sit-ski.

My wife Jayne paddling in the front seat.

On this day I shared a tandem kayak with my wife Jayne, me in the back seat.  It was a perfect day-- calm water, sunny, not too hot.  Paddling along in the quiet morning with just the sound of the oar slapping the water is one of those times you’d like to bottle and save for a cold wintry day.  It took a while, but we finally got our cadence synchronized and made some good headway.

Adaptive equipment like outriggers make kayaking accessible to everyone.

We were joined by Andy Dahmen, another spinal cord injury survivor, and Wendy, a volunteer with TRAILS, and an expert kayaker.  East Canyon reservoir is only 41 miles from my home, yet we were a million miles from our everyday existence.  Mother Nature has a way of cleansing our souls if we only give her the opportunity.

Removing the wheels from Andy Dahmen's kayak.

I’m fortunate to have fairly good balance, hand and arm strength, so I didn’t need any adaptive equipment, just a stable kayak with a slightly wider hull.   Andy’s injury is more severe than mine, so he needs a bit more help.  No problem.  A kayak with outriggers and paddles with Velcro straps to aid hand strength were readily available.  It also had removable wheels, so he could transfer from his wheelchair into the kayak and then be wheeled into the water.

Andy Dahmen getting underway.

We all paddled together and I can promise Andy's enjoyment matched mine, based on the smile on his face.  Truth is, Andy does a lot of river running and is a true outdoorsman, wheelchair or not. He’s the perfect example of how the strength of the human spirit can overcome just about anything given the right support…the kind that TRAILS provides.

On the water, with Andy and Wendy leading the way.

It didn’t take long for my arms to start feeling the effects of paddling, so we returned to shore after about ninety minutes of gliding across the smooth green waters of East Canyon Reservoir. When we got to shore, we were greeted by Tanja and Dr. Rosenbluth, who dragged our kayak far enough up on shore so I could get out on dry land.  They make it so easy to have fun.

Jayne and me with tired arms and big smiles.  

Driving home, we basked in the calm that descended upon us while on the water.  We both commented on the powerful uplifting we felt from such a brief interlude from our daily routine.  That’s the beauty of living in Salt Lake City, which is literally surrounded by mountains, lakes and rivers.   Mostly, it's the desired result that TRAILS wants for all of its participants: a life changed for the better, regardless of physical ability.  Once again, mission accomplished,

Out Of The Pain Cave, Into The Water

Knee replacements are commonplace these days.  Baby Boomers are taking a number and getting in line so they can get back to running, skiing, playing tennis, pick-up games of hoops, touch football, soccer or any other form of Weekend Warrior nonsense that ruined their knee(s) in the first place. Maybe they didn’t do any of the above and just had crappy knees to begin with. Mine was compliments of a bone-head motorcycle wreck when I was 16.

 If it was only turbocharged.

The fact that they’re commonplace doesn’t make recovery a routine experience. There’s a reason why the medical folks pound into your head the pain scale of 1 to 10.  You get to experience the whole spectrum.  Regardless, my knee had to be fixed.  Going up stairs was torture. Riding a bike was nigh impossible.

Dr. Thomas Rosenberg

So April 14, 2016, I put myself into the extremely capable hands of Dr. Thomas Rosenberg, renowned knee specialist and founder of Rosenberg Cooley Metcalf orthopedic clinic at Park City Medical Center.  He assured me that even with neurological issues from my spinal cord injury, I could still benefit and have a full recovery if I work hard.  Key words: “work hard”.

First steps three hours post op.

Surgery went well. Fast forward past the first two weeks of hell on earth, with muscle spasms, an uncooperative bladder, multiple catheterizations and daily doses of hydrocodone.  Fast forward beyond the home health care physical therapist prodding me to walk into the other bedroom one more time.  Keep going past the grueling therapy sessions at the University of Utah Orthopedic Center to the present, 14 weeks post op.

A special day: swimming with Erika.

Still walking with trekking poles on a weakened right leg, I find myself doing laps with my 36 year- old daughter Erika at Cottonwood Heights Rec Center--me with one good leg and her with one good arm.  Her left arm has virtually no range of motion due to an improperly used post-operative pain pump that destroyed the cartilage in her shoulder after a minor shoulder surgery.  Fourteen unsuccessful attempts to implant an artificial shoulder resulted in nothing more than ghastly staph infections and a railroad track scar from elbow to neck.

              

Me with one good leg.

Erika with one good arm.

Thanks to the magical weightlessness of water, we’re swimming side by side, exulting in the joy of physical exertion as we adapt our minds and our bodies to doing things differently rather than sitting on the sidelines. I’m using “speed fins” with small holes in them to provide some extra propulsion with a minimum of strain on my leg.  She’s holding a kick board under her left arm and swimming only with her right arm, with amazing results.

Adapting mind and body is a quest I’ve been on since breaking my neck in 1972.  Erika's journey began in 2004, when shoulder surgery resulted in the loss an arm and the beginning of a lifelong autoimmune disorder known as CIDP (Chronic Inflammatory Demyelinating Polyneuropathy).  The struggles for both of us are enough to fill the book that I'm working on.

A work in progress. Success ahead!

The final chapter of this post is that I have emerged from the pain cave, there is recovery ahead, and I’m cherishing a special time with my only daughter, as we both say “no way” to our potentially devastating physical challenges. 

Granddaughter Ellie Skis Alta's Baldy Chutes

Alta's Baldy Chutes.  The Main Chute is on the right.

Big Courage In a Small Package.

Ellie contemplating the Baldy Chutes.

In terms of determination and guts, I have some big shoes to fill: those of my 11 year-old granddaughter, Ellie Creech.   This last weekend, she climbed and skied Alta’s intimidating Baldy Main Chute.  This is a supreme accomplishment for any skier…but for an 11 year-old?                     It’s awe inspiring.  

It's a long way up.

To begin with, the hike up is daunting enough.   

It’s a tough slog up and parts of it are near vertical, like climbing a ladder.

Not for the faint of heart.

Slogging it out.

 It takes about an hour to get to the top, which is above 11,000 feet elevation.  

Ellie said the climb up was almost as scary as the first couple of turns down.  

Jason and Ellie at the top.

The drop into the Main Chute is near vertical too.   A fall could be very dangerous.
Fortunately, Ellie has an excellent instructor, mentor and guide--her father Jason.

Ready to drop in.

Ellie in the Main Chute.

Jason is a world class skier who lived in Aspen for more than a decade with Chris Davenport, a World Extreme Ski Champion and well known mountaineer/back country skier.  

Jason can flat out ski.   

So can Ellie. Three years on the Alta Race Team have molded her into a confident and 

strong skier who doesn’t flinch at the steep and deep.

An Epic day!

Jason and Erika chillin'.

Jason, Ellie and my daughter Erika are season pass holders at Alta, and ski 30 plus days a year.  Gratefully Erika, who was a Snowbird ski racer and expert skier herself, is back on the slopes again.  It makes my heart sing to see them on the hill together.

I hope to join them next year on my sit-ski…though I won’t be doing the Baldy Chutes.  I’ll be happy carving some nice turns on Sugarloaf or Collins. I’ll be the guy on a sit-ski with extra long legs and a big smile.  If you see me, wave and look for a hotshot redhead nearby.  That will be Ellie.

To see a POV video of Jason skiing the Baldy Main Chute in a previous outing, click here.

Paying for my stupidity one knee at a time.

More painful than tax day…guaranteed.

Is there anything more brainless than a testosterone driven 16-year-old male?  In my case, no.

This April 14, I will undergo right knee replacement surgery largely due to one Bonehead Moment in 1966.  In some ways it seems like yesterday.  This year will be the 50^th Anniversary of my Bonehead Moment, so it’s even more fitting.

Here’s my Bonehead Moment:

My Honda 160 Scrambler

It was a warm summer day. I can’t remember the exact date.  David Bickmore (my frequent partner in crime) and I were in front of his house, messing around on my motorcycle, a Honda 160 Scrambler, which was the 60’s version of an off-road bike. Translation: messing around means having too much time on our hands, which spells trouble.

 

Here’s the Bonehead part: the throttle cable, which hooks into the twist grip on the right handlebar, had broken.  It was just hanging loose unconnected, so to rev the engine, you had to pull on the cable with a pair of plyers.  That would have been enough for anyone of average intelligence to put the bike away and get it repaired before driving it one foot.

   

Not this 16-year-old testosterone-soaked idiot.  I figured I could drive it home with a pair of plyers in one hand and steer with my left hand on the handlebars.  But there’s more.  I also figured that before I drove home, I would go over the homemade jump that David and I rigged up on the street in front of his house.   It was very highly engineered....a ramp made of plywood with one end on a cinderblock. 

Evel Knievel used better judgement

With Evel Knievel in my head (and not much else) I took a run at the jump.  Predictably, the motorcycle went up the jump, the piece of wood teeter-tottered and I came down on the other side front wheel first.  Also predictably, with only one hand on the handlebars, I lost total control of the bike and crashed, jamming my straight right leg into the pavement, and ripping my knee to shreds.  

My 1966 Surgeon

I was sure I had broken my leg…which in the long run would have been better.  I succeeded in tearing my ACL and MCL, requiring major surgery, which in 1966 was performed with a chainsaw rather than an arthroscope.

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That little episode effectively ended my high school athletic career (and motorcycle jumping), requiring a good two years to rehab.  However, the knee held up pretty well until the last few years.  

Dr. Thomas Rosenberg 

Now 50 years later, it needs replacing, so on April 14, I’ll be in the Park City Hospital as Dr. Thomas Rosenberg attempts to repair the damage caused by my Bonehead Moment of 1966.   Any pain coming my way is entirely deserved and expected.

 

 I also expect that I’ll survive and do well in the long run.  He’s an excellent surgeon and I’m no stranger to physical therapy and rehab.   Dr. Rosenberg says that in terms of pain in my knee, it will be at least a year before I forget that I’ve had the surgery.  In this case, I think he’s wrong.  This surgery was 50 years in the making.  While the pain may subside, the memory of it will likely be with me for my remaining days. 

Putting gravity to work so I can play on my birthday.

March 4, 2016.  My 66^th birthday turned out to be one for the ages.  I skied Alta with my daughter Erika and granddaughter Ellie…something I never thought I’d do.  I had given up downhill skiing in 2003, when a neurosurgeon  cautioned me about skiing because of the weak spot in my neck from my original spinal cord injury. So I took up cross country…safer, great exercise and a lot cheaper.  But I missed being at the top of the mountain, and I missed the adrenalin rush and effortless fun of bombing down the slopes. 

 With granddaughter Ellie at Alta. Behind me is Ginger,
a freestyle coach at Deer Valley, who was assisting that day.
At the bottom is the ski instructors pin  I earned a
month before I broke my neck.  I took it along for good luck.

Ellie ripping GS gates.

I resigned myself to the sidelines, as I watched my granddaughter Ellie turn into an accomplished skier and member of the Alta Race Team.  Then when my daughter Erika was able to overcome her CIDP and return to the slopes, it got even tougher sitting in the lodge while they hit the slopes

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Enter Dr. Jeffrey Rosenbluth, head of the University of Utah Spinal Cord Rehabilitation unit.  He suggested I try a sit-ski, through TRAILS (Therapeutic Recreation and Independent Lifestyles) a recreation program at the University of Utah hospital for spinal cord injury survivors like me.  New technology had made sit-skis much easier to use and shortened the learning curve.

   

At the top of Sunnyside with
Mt. Superior behind me.

The bi-ski I was on is basically a frame with a bucket seat mounted on two regular skis.  It’s designed so that as the skier transfers weight to one side or the other, the skis articulate and turn effortlessly.  It also has a handle in the rear that provides for a stand-up skier to ski behind, providing stability and assistance in learning.  It’s a bit like learning to ride a bike with your dad running behind you holding on to the saddle.  Mostly it was a big rush.

 

My co-pilot was Casey, an exercise physiology graduate, expert skier and sit-ski instructor who works for the TRAILS program.  I would start the turns by angling a left or right outrigger attached to my arm which would turn my body in the proper direction and Casey would help me finish the turn and provide the necessary stability. My previous training as a ski instructor prior to my injury was invaluable, as the physics of turning a sit-ski are very similar.  Lead with your head, keep your shoulders on the same plane as the slope and you’re on the right track.

 

Ellie and Erika ready to
shred the Alta pow.

We didn’t pussyfoot down the hill.  We were cranking it, making some great turns and passing a lot of skiers at what felt like Mach 2.  We skied Sugarloaf and Sunnyside lifts and even got in a black diamond called Extrovert. But the best part was having my two girls with me on the hill.

My next move will be to a mono-ski, which has the same dynamics, but is more advanced.  You sit higher and have more freedom…and there’s no co-pilot.  You’re flying solo on one ski.  I can’t wait.  To think that I can get back on the hill and share some turns with my family is beyond belief.

I learned once again that having a spinal cord injury doesn’t spell the end of a fun, dynamic outdoor lifestyle.  You just have to open your mind to new ideas, problem solve and adapt your thinking.   That’s why they call it adaptive recreation.

 

My sincere thanks to Dr. Rosenbluth for his visionary TRAILS program and for urging me to give it a try and to Casey, who worked so hard to make sure I had a great time.  Casey, by the way, just got accepted to medical school at the University of Utah. Congratulations! He’s going to be one great compassionate doctor!

Header Photo:  Cycling in Capitol Reef National Park, Utah    Photographer:  Bill Raddatz

Turning Disability into Thrivability.

I was born March 4, 1950, which makes today the perfect day to introduce my new blog about my life before and after a paralyzing spinal cord injury.

Like many young boys, I spent the first twenty-two years of my life pursuing the joys of competitive sports.  I began swimming and playing baseball when I was seven.  I swam in the AAU Junior Olympics and pitched in the WBBA Little League World Series when I was 12. I also began taking guitar lessons at 13, when the Beatles and the Beach Boys stirred my young soul.

I continued swimming and playing baseball through high school and mixed in a stint on the tennis team until a motorcycle accident destroyed my right knee when I was 16, effectively ending my high school athletic career.  But I continued my musical pursuits as a lead guitarist in a rock and roll band. 

In 1968, our band was featured on a national television show hosted by Paul Revere and the Raiders. We toured briefly as the opening band for Mitch Ryder and the Detroit Wheels and submitted an audition tape to Dunhill Records.

College days, channeling
Steve McQueen.

In 1969, college and military commitments put an end to our band.  I chose to attend Utah State University, where I majored in journalism, and continued to play music to earn money.  I also earned my certification as a professional ski instructor and taught skiing.  Skiing and being in the mountains became the love of my life. I found the second love of my life and married Jayne Smith on June 12, 1971.

A year later I started life over.  On May 29, 1972, I dove into a reservoir and hit a submerged tree stump, breaking my neck.  I was instantly paralyzed from the neck down.  Life as I had known it was over.   Fortunately, I had not completely severed the spinal cord.  Within a year, with a lot of good fortune and hard work, I could walk and had some use of all my limbs, although I was much weaker and had lost much coordination.   But, I had been given a second chance and vowed to make the most of my physical abilities in returning to the outdoor active life that I loved.

At the MS Bike finish line
with granddaughter Ellie.

Within five years, I was riding bicycles, playing golf and skiing again, although at a much reduced level of performance. But I had reestablished the connection with outdoor physical activity that my spirit craved.   In the next two and half decades, I went on to build a successful career as an advertising copywriter and eventually became a partner and creative director of an advertising agency.  I continued my active lifestyle, skiing, riding bicycles, playing golf and boating.  In 2006, I left the advertising agency to pursue a freelance writing career.

Shortly thereafter, my only daughter Erika, 26 years old at the time, became seriously ill with an autoimmune disorder known as chronic inflammatory demyelinating polyneuropathy (CIDP), resulting from multiple orthopedic surgeries and subsequent staph infections.  A former ski racer, competitive figure skater, white water kayaker and rock climbing instructor, she experienced a substantial loss of function in her arms and legs, with a loss of balance and strength that severely limited her mobility.  The similarity of her physical struggles to mine was beyond belief. She had a battle ahead of her and my new life was being a caregiver and support for her and for my granddaughter Ellie. 

At Alta, only 13 miles
from my house!

In the last five years, my life has taken a challenging turn once again.  Now 66, I have been experiencing a substantial loss of function, strength and balance due to my aging spinal cord injury.  Today I’m walking with a cane again and living in more pain due to constant muscle spasms.  But I have not lost my drive to continue my outdoor active lifestyle. I’m now using a sit-ski instead of stand-up skis and riding shorter distances on my bike, but I’m still swimming and working out regularly.  I’m about to undergo knee replacement surgery on my previously damaged right knee. But I will not give up.

While laying immobilized, still paralyzed right after my accident, a stark realization etched itself into my soul: we only get one of these marvelous machines we call our body.  Why would we not care for it, maximize its capabilities and use it to find the joy in nature that is there for all of us?

I know that none of us can foresee what life has in store for us.  I also know that the human spirit is stronger than any adversity life can throw our way.   With love and support from family and friends and our own inner strength and determination, we can thrive, not just survive.  I invite you to join me in my quest to make the most of every day.  Together we can push the limits, enjoy better health and a live a joyful life!