My Name is Amanda Boxtel

Mine is a universal story of hope and healing. After eighteen years of paralysis and a journey across continents, my pursuit is one of spirit-mind-body transformation. While my spinal cord injury took away my ability to walk, it did not take away my ability to dream.

My story is about my hopes, dreams, curiosity and indomitable will to pursue treatments around the world in order to gain a better quality of life while striving to walk again. Today I am turning my dreams into my reality one baby step at a time. Continue reading my biography →

Pursuit, the documentary (rough cut)

Please take a moment to view the rough cut of my documentary. I’m currently seeking funding to help complete this film. If you’re interested in helping, please email me here.

Defying Gravity

I’m through accepting limits
‘Cuz someone says they’re so
Some things I cannot change
But till I try, I’ll never know!

It’s time to try
Defying gravity…

Defying Gravity from Wicked

 July 09 019

July 09 025

Altering the weight of my world…

Today I walked on my legs for thirty minutes in the most normal unrestricted gait for the first time in seventeen years of paralysis!  No, I didn’t even use my leg braces.  Imagine being a NASA astronaut suspended in a pressure regulated device that defies gravity.  Today was my third day on the Aspen Club & Spa’s newest toy, the Alter-G, an anti-gravity treadmill.  With the help of my trainer, Mark Alderdice, and my friend Zander, I threaded my legs into a pair of customized neoprene compression shorts and wormed my way into the machine.  Mark zipped the skirt-like extension at my waist to the ballooned frame and I wiggled my legs into position.

“Okay Amanda, put all your weight on the treadmill and keep as still as possible.”

Mark touched the computer screen while it calibrated my body weight.  From a crouched position I rose to standing as the bubble inflated.  Digital numbers clicked by 20, 30, 40, 50, 60…Within seconds I was almost weightless and completely vertical standing tall on my own two legs…without leg braces! 

“Are you ready for the treadmill Amanda?” asked Mark

“Yes, go for it.  I’m ready.  I won’t know ‘til I try.  Now let me FLY!”

 “We’ll start really slowly.  We can increase the speed in one percent increments.”

Before I knew it I was walking!

It’s been so long.  It’s almost too long to remember.  Something has changed within me.  I feel tingles.  My legs are alive.  They’re moving.  Blood pumps through my veins.  I feel light yet I’m supported.  I’m almost weightless but I can walk!  I’m defying gravity.  I’m defying the odds.  I would never have imagined it possible—especially two years ago prior to my first embryonic stem cell injection.  I couldn’t move anything below my hips for fifteen and a half years.  My body is still awakening.  I am walking!  It’s happening.  It’s possible.

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Words can’t even describe my sensation of standing tall in my five foot seven frame on my own two legs while walking in a true heel-toe-bend-knee-swing-forward motion.  As I marched onward consciously focusing on planting one foot in front of the other, I stretched my memory back to when I was a teenager recalling the days when my legs ached after ballet or running hard.  Today my legs ached…and they are still aching and tingling as I sit at my computer this afternoon.  I have longed to feel my leg muscles ache since that fateful ski accident that rendered me a paraplegic seventeen years ago. 

While the idea of unweighting isn’t new, the Alter-G is apparently the first company (www.alter-g.com) to use a pressurized bubble that provides a counterforce to a person’s bodyweight, reducing the effective weight on the treadmill surface.  In essence, the machine gave me unrestricted mobility to maintain my normal body position and a somewhat normal gait.

“What do I look like Mark?  Normal?”

“Well…n-o-r-m-a-l…like you’ve had a few drinks!”  We laughed.  “But you’re getting there.”

Actually, Mark and Zander were amazed at my newfound ability to move my trace muscles in this weightless device.   Through the gift of the Aspen Club & Spa I will have the opportunity to use the Alter-G machine twice a week incorporating it into my therapeutic regimen.  Thank you Michael Fox and thank you Mark (and Zander too).  I am grateful beyond words.  Today, you brought me to tears once again—sobering tears that remind me that I can be beautiful in my tallness and that with a little determination and help from my friends I can achieve the impossible.

So if you care to find me
Look to the western sky!
As someone told me lately:
“Ev’ryone deserves the chance to fly!”
 

And if I’m flying solo
At least I’m flying free
To those who’d ground me
Take a message back from me
Tell them how I am
Defying gravity
I’m flying high
Defying gravity
And soon I’ll match them in renown
And nobody in all of Oz
No Wizard that there is or was
Is ever gonna bring me down!

 Defying Gravity from Wicked

July 09 029

Touchdown

Touchdown on Butterfly Wings

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This butterfly is back!  I’m home at last with Tucker by my side and we are content.  I have been indulged with caring love from my sweet friends, and a fridge of yummy nutritious goodies to welcome me home (Thank you Carolyn and Tami).  The angels have answered and I am on the mend.  CP greeted me at the airport with Tucker on Monday night and drove me home, and Emily has planned for a small collection of friends to deliver meals for a few days.  My gorgeous Gabrielle drops in unannounced to take Tucker for a walk, and see me in my morning glory with messy hair and coffee breath…and I don’t care.  That’s what best friends are for.  I am truly blessed.  My nurturing home has reignited the cooling embers of my energy.  With massive doses of sleep and rest Amanda is reawakening. 

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A delicious salad prepared by chef extraordinaire Carolyn Fisher

The mountains are so incredibly beautiful with a nip of spring in the air.  This morning’s temperature is a crisp 34°F (1°C), the blue sky is unpolluted, fresh limey-green leaves are budding, tulips and daffodils are popping their heads up from the soil in a palette of yellow-red-orange-pink-and-purple, and the river is swollen with the spring run-off.  I feel like I live in the lap of luxury in my gorgeous condo…and the simple pleasure of driving on uncongested roads in my own smooth-rolling jeep with power-everything and full suspension makes me feel like a princess for sure.  For the past six weeks I’ve been flagging down auto-rickshaws or tuk-tuks that jolted my body with every bump.  I realize I have so much more than I need.  Delhi always puts life back into perspective.

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My haven on the river

Zander accomplished a feat that most wouldn’t be able to bear.  In five days he flew approximately 15,500 miles (mostly in cattle class) from Aspen to Delhi to sweep me up and escort me home.  I’ll never forget seeing him stroll through customs last Friday night.  Surreal is an understatement.  It was the first time I had left the hospital walls in 12 days.  Tears filled my eyes in disbelief that my dear friend was actually in Delhi.  With a throbbing headache and lingering nausea, I embraced him and didn’t want to let go.  Z had arrived.  He is now qualified to write a Lonely Planet entry on what to do in Delhi in 48 hours.  From the moment Z landed he was on the fly sightseeing, dining, taking care of me, and stretching his six foot frame through two private yoga sessions with the infamous guru Rawatt.  As my topless male nurse he never showed an ounce of jetlag, we laughed, and he lifted my spirits.  Thank you Zander – I’d do anything for you.

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While my stamina improves I shall write about my last few weeks in Delhi and my plans for future treatments.  In-a-nutshell I learned that I am Dr. Shroff’s only foreign patient who has undergone five intensive stem cell treatments in the span of twenty-one months.  My body is saturated with new life and it is now time to take a break and rest.  I never knew that I could sleep so much—it’s truly like being pregnant.  I need to allow my embryonic babies to assimilate and gestate so that transformation can take place in my limbs.  Dr. Shroff and Dr. Ashish recommended that I take a year off from treatment.  I will continue to work out in my home diligently with yoga, physical therapy, meditation, and outdoor recreation.  I can already feel that my left leg is ever-so-slightly stronger but I have a long way to go.  My spinal headache is dissipating and I am nurturing my body back to life one day at a time.

Mum, you no longer need to worry ‘cause your baby’s home safe and sound.  I am already missing my Indian family of doctors and nurses who have seen me at my very worst and nursed me through thick and thin.  Finally, to all my email friends, thank you for your love and for your cherished notes of well wishes.  When my light was fading you helped rekindle the spark within me.  Thank you.

With deep gratitude, grace and love,

Amanda (A.K.A. Butterfly)

March 22nd – Arrival into Delhi & Thank God for Mum

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From Aspen’s Maroon Bells…to…

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Delhi Traffic!

 

“In God’s world there can be delay, but, there’s no darkness!”

 

I know I’ve arrived in Delhi when…my freshly ironed white blouse now has yellow curry stains dribbled down the front (and so it shall remain for the next month); my arms feel like pin cushions from daily stem cell injections; my eyelids feel like they’ve got lead weights pulling them closed because my circadian clock is off; dust hangs in still air; the light is subdued and a sky is never really blue; my hospital room is adorned with 15 color photographs of friends and family reminding me of the love that I can feel even though I’m on the other side of the world; and my Indian family of doctors and nurses welcome me with huge open arms emanating a genuine undertone of caring and compassion like no place I’ve ever experienced.  I feel grounded.  I feel the pulse of this ancient country.  I embrace all that is ahead of me.  I’m back.

 

I know I’ve arrived in Delhi when…a statuette of a Hindu Ganesha that sits behind my taxi’s steering wheel is BIGGER than the speedometer and a strand of prayer beads hangs from the rear vision mirror;

india-march-09-006… and the van in front of us has JESUS LOVES YOU that covers almost the entire rear window;

india-march-09-007…a plastic icon of Lord Shiva rests nestled in the base of a tree on the side of the road; and a beautiful woman clutching a baby tightly to her bosom rides side-saddle on the back of a motorcycle as her Sikh husband with a full black beard and curled-up moustache weaves in and out of stand-still traffic.  The irony is that he has a helmet balanced on top of his turquoise blue turban and she chooses to go unprotected.  Wisps of her hair catch the breeze as her thick plait sways back and forth like a pendulum across her bright pink and orange sari covered in sparkly sequins.  Welcome to India where there is an inherent respect for all faiths under one God.

 

I know I’ve arrived in Delhi when…small trucks and big trucks are adorned with silver and gold tinsel and brightly painted flowers.  Bold lettering painted on the backs say “Blow Horn!”  Traffic somehow squeezes five cars across into two designated lanes.  Nobody follows road rules.  Drivers honk their horns as a courtesy to oncoming vehicles at least twenty times in a half hour.  Taxi drivers are quick to charge me triple until I tirelessly barter them down.  AC (air-conditioning) is at least 100 Rupees more per taxi ride, especially if you’re blonde and fair skinned.  Getting from point A to B can easily take an hour, even if it’s just a few miles.  When there’s an open stretch of pavement, most drivers will push the pedal to the floor and scream down the road regardless of the speed limit or oncoming traffic be it a car, truck, bicycle, rickshaw, tuk-tuk, donkey, mule, camel, elephant or the revered holy cow.  Traffic lights are often ignored—I’ve lost count how many times we’ve sailed through red stop lights.  It’s okay to drive the wrong way down a one-way street (at least all of my taxi drivers have gotten away with this death defying feat).  A head wobble is a sufficient gesture as if to say, “Oh well!” when another car accidently dints your car.  Despite this lunacy, somehow it all works and road rage is almost non-existent.

 

Delhites who openly defy road rules slow down only when they spot speed guns.  Officials question whether they should raise the speed limit on expressways from 50km/hr to 80km/hr.  Increasing the speed limit will increase accidents, especially when the road is shared by pedestrians, rickshaws and animals. Some argue that rules must be realistic for them to be observed and suggest focusing on driver’s education and enforcing lane driving.  I see that never happening.  How can you change a society that is hell-bent on drivers who do what they want?  Delhi it seems is still as corrupt and nonsensical as ever! 

 

Thank God for Mum!

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Mum arrived this morning at 5:15 am.  She’s sleeping right now, catching up after her 24 hour jaunt from Australia.  God I was pleased to see her.  Tears filled my eyes, we embraced and I didn’t want to let her go.  I haven’t seen Mum since last November when we parted at the airport, flying east and west farther and farther apart.  I’ve seen more of Mum these past twenty months since beginning my stem cell journey than I have in years.  We are committed to seeing our days in India through together.  I will attempt to walk as much for me as I will for my Mum.  She has been there with me every roll, glide, crawl, baby step, and leap of my life.  She is my rock and I adore her.  I am so grateful to have my Mum. 

 

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We strolled through Lodhi Gardens today with the sun beaming down on our shoulders and a burst of spring in the air.  Flowers of every color lined shaded pathways.  Ancient stone tombs sat peacefully in the background.  Families gathered to picnic or play a game of cricket.  School girls in neat uniforms giggled.  And lovers held each other underneath huge leafy trees.  That’s the Lodhi which I crave as my refuge away from the bustle of Delhi’s streets.

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Tonight Mum and I have been invited to dinner with Ted and Karen Wachtmeister.  Ted is on his third round of stem cell treatments for IBM—Inclusion Body Myositis is a progressive muscle weakness and wasting disease.  Dr. Shroff has been able to stabilize his condition and bloodwork identifying his CPK (creatine phosphokinase) levels have returned to normal.  I applaud Ted for his courage to come to Nu Tech Mediworld.  Like many deemed incurable, he basically had no other options.  The treatment is working to the degree that the stem cells are keeping his disease at bay. 

 

A wise Indian man named Ajay whom I met on a previous visit to Delhi happens to share the same birth date as me.  He was one of eleven others who seemed fascinated by my life story and subsequently performed a collective astrological chart reading on my past and future.  The group divulged precise dates when cataclysmic events took place in my past, including my accident, and made some interesting predictions for my future.  I keep Ajay posted on my progress through my blog journal entries.  He sent a thoughtful email welcoming me to Delhi for my fifth treatment. 

 

Here’s what he wrote…. 

 

Dear Amanda,

 

Warm welcome to New Delhi.  I’m so happy about your wonderful recovery. With US President Barrack Obama clearing the way for ‘Stem Cell Embryonic Research’, there will be new floodgates of hope opening up. Who says there’s no God?

 

There’s a legendary saying in our land, which in Hindi goes like this:

 

“Bhagwan ki nagri may dayr hai, andayr nahi”.

 

The English translation means:

 

“In God’s world there can be delay, but, there’s no darkness!”

 

Tomorrow I begin an intensive month-long treatment schedule.  An early morning ultrasound followed by a stem cell injection, physical therapy, and then my first spinal caudal procedure.  Dr. Ashish has promised that he will jump start my body back to life and promises great results.  It’ll take a lot of hard work, determination, and belief.  Belief is at the core of my awakening.  I still believe and while my progress is slow, I am improving.  Plus, I have my Mum to encourage, love, and support me through it.  

 

Namaste from Delhi,

 

Amanda (and Mum—Jill) xoxo

 

P.S. Thanks to Gabrielle and Jay for looking after my sweet Tucker.

 

Last minute note…pray for Mum.  We opted out of dinner because she came down with a severe migraine headache and vomiting.  The nurses have given her two injections to help with the pain and nausea.  She’s now sleeping.  The little chickie squawking outside her window doesn’t help.  The pigeons are having a party at Mum’s expense.  I think the jet lag was too wearing on her body.  I feel so badly for her.  Hopefully things will improve tomorrow.

Amanda's Recreational Video–Skiing, hand cycling, paragliding

Video Link–CLICK HERE:  http://www.youtube.com/watch?v=ULYqz_eDJUk

Yesterday I had the privilege of speaking to the Young President’s Organization in Aspen, Colorado.  Often, audience members ask me how they can access “online” my inspirational video showing how I ski and recreate.  Download this beautiful video filmed by Tom Eldridge and Michael Stoner from years past. The footage was then compiled by Chris Tribble and then synchronized to Vivaldi.  Enjoy!     You Tube Video Link:  http://www.youtube.com/watch?v=ULYqz_eDJUk  

Amanda Boxtel–If I Can Do It, You Can Too!

February 27, 1992 marked a pivotal moment – a freak somersault while downhill skiing and in a split second my life forever changed. It has taken seventeen years of paralysis to create the woman I am today. While human embryonic stem cell treatment has brought renewed muscle power and sensation into my limbs, recreating in the outdoors brings me the most joy. This is a brief video depicting my life as it was…and how it is today. When I listened to Vivaldi while skiing with headphones for the first time, I felt like I was dancing again in a three dimensional playground. I was a bird soaring with my own wings. I live every moment to the fullest. My living is determined not by what life brings to me, but by the attitude I bring to my life. If I can do it, you can too!

My Schedule for My Third HESC Treatment

Dr. Geeta Shroff and Dr. Ashish Verma

My schedule for the month is as follows:

·         2 HESC injections per day

·         Mondays and Tuesdays:  HESCs administered intravenously in higher dosages

·         May 7th:  Caudal Procedure—one day spinal procedure

·         May 12th:  Lumbar Puncture Procedure—an overnight two-day procedure that has the susceptibility to cause a horrible migraine headache (and fingers crossed God-forbidding…no vomiting!)

·         May 17th:  Deep Spinal Muscle Procedure

·         May 21—May 23:  Three-day Epidural Caudal Procedure

Dr. Shroff and Dr. Ashish were kind enough to give me my schedule in advance, so hopefully we have a plan which will give me enough recuperation time to leave on my June 2nd departure date.

When I arrived on Friday night I admit that I was filled with the raw emotion of being by myself and anxious about the forthcoming treatment.  Delhi is not easy.  I am challenged often and my emotions rollercoaster with anticipation of what might be.  I wonder how my body will change and if I will show any radical improvements.  I then tell myself to let go of all expectations and simply “roll” with flow.  What will be will be.  My mind is set, my body is as prepared as it will be, and my spirit is calm.  I am a million miles away from all those who I love and hold close to my heart, yet I rejoice that I am here.  India is a gift.  I am surrounded by my endearing Indian family and a community of phenomenal patients and caregivers who are filled with hope.  Optimism reigns over this jewel in Delhi.  The incurable show improvements with tiny miracles taking place daily.  It is this optimism that infuses me with energy and instills the hope deep inside my gut.  I notice that returning to this hospital is more than daily shots of human embryonic stem cells.  Belief is here without doubt.  An air of sanguinity exudes from every patient, physical therapist, nurse, doctor, receptionist, ward boy, or doorman.  Optimism becomes my drug. 

I feed my soul reminding myself why I have travelled half way around the world to continue plodding along my path.  I am motivated to work hard.  I watch the other patients who are all striving for something better…that something being a better quality of life. 

Ball balancing with Chavi.

 

Leah practices her “waddle walk”.

That’s what it boils down to, and a better quality of life is different for each and every one of us.  For Leah, it is to toss away her cane and walk “normally” and gracefully, free of muscle spasms and pain.  For eighteen-year-old Elaine it is combating her Lyme Disease and regaining energy.  For me, quality of life means regaining any new sensation or muscle power in my lower extremities.  For the motor neurone patients (ALS) who are literally fighting for life, quality can only mean stabilizing their disease and then hopefully regaining strength (or the ability to breathe, lift a limb, write, or voice “I love you.”).  For Perry, a C-2 quadriplegic from Australia, quality means getting rid of his ventilator forever and breathing on his own. 

Perry breathes on his own!

It is all possible.  I am witness to what the naysayers believe to be the impossible.  Each time I am immersed into this world away from the comforts of my home, I feel like the most blessed individual on Earth.

My precious yoga instructor and friend Emily Hightower arrives on Saturday evening.  Em is braving India to be my caregiver while she leaves behind her little boy, Oz, and her husband, Brian.  Here’s a slice of Emily’s enthusiasm from a recent email, which is truly infectious: 

Oh my amazing, incredible, blessing of a friend! I CAN’T WAIT TO COME TO INDIA!!! INDIA INDIA INDIA INDIA…..I think about it all the time…. I am feeling so ready, and so perfectly tuned into the trip with you, and you’re letter brings to light all of the reasons I am so blessed to get to be with you on such an amazing adventure…. I love you SO SO SO SO MUCH!!!!!  You are a goddess.  And I am eager to get going on this trip….my mom came yesterday and brought me a new luggage piece like I’ve never had, and I’m already packed!  So look out, blondy!  I’m heading to YOU!  and I’m bringing all of my massage oils, aromatherapy, facial kit….foot stuff….why not?  Let’s turn NuTech Mediworld into a spa!  See you soon sister, Em”

I cannot wait to have Emily in this space so she can bear witness to the miracles, hopes, and living dreams that are taking place in this universe away.  After Emily, I will have my friend Judy for a full two weeks—Yeah!  I am so fortunate!

For now, it’s off to have my dessert after breakfast…a shot of stem cells.  Then an hour of physical therapy with Chavi, lunch in my room, more physical therapy and possibly standing in my leg braces.

With love as always. 

Namaste, Amanda xoxo