Interview | Shane Burcaw

Shane Burcaw is a high-profile, 26 year-old American writer, public speaker and charity founder. He has documented all aspects of his life with spinal muscular atrophy with candid humour, thereby informing and inspiring others whilst also influencing the public perception of disability.

Burcaw has been commended for his ongoing determination, sincerity and ability to raise awareness of often uncomfortable issues, in a sensitive manner.

Shane kindly took time out of his busy schedule to speak with me about life with SMA, what motivates his work, and why personal care doesn’t affect his relationship with able-bodied girlfriend, Hannah.


1. Shane, please could you tell us about your disability and how it affects you and your lifestyle?

I have Spinal Muscular Atrophy Type 2, but I’m on the weaker end of the Type 2 spectrum. SMA is a neuromuscular disease that causes my muscles to weaken and waste away over time. I’ve been using an electric wheelchair since the age of two. In a nutshell, my disease affects every single function of the body that involves muscles. I can barely move my legs, arms, and hands. I have difficulty swallowing, speaking, and breathing (especially when sick). Because of this weakness, I rely on other people for pretty much every aspect of daily life, from getting out of bed, to eating, to going to the bathroom. Luckily, I’ve been surrounded by incredible people who have always been there to help me, and because of that, I’m able to live a fairly “normal” life, with a career, a variety of hobbies, and frequent traveling for both leisure and work. I live with my girlfriend, Hannah, in Minneapolis, and she is my primary caregiver.

2. What motivates you to do the work you do (writing, public speaking, raising awareness through social media and your charity LAMN) and how do you find the energy?

My disease is progressive, so my condition and abilities deteriorate over time. I learned at a young age that many people with SMA pass away at a younger age than the average, and that realisation instilled in me some sort of existential determination to leave a mark on the world. Some might call it vain, but I was terrified by the prospect of dying without having done anything to be remembered for. I began sharing my story through funny blogs and later books, and working hard to grow a non-profit organisation that provides free equipment to others with my disease. Coffee is really the only way I’m able to balance writing, the non-profit, blogging, vlogging, and public speaking!

It should be noted that two years ago, the first-ever treatment (Spinraza) for my disease was discovered and approved. I began receiving it at the age of 25, and it’s supposed to stop the progression of my muscle-wasting. This has been a huge development in my life, both physically and mentally, and I’m still coming to terms with the fact that my future might be much different than I originally imagined.

3. Could you please tell us about Laughing At My Nightmare (charitable organisation) – how it all began, aims and objectives?

Our non-profit grew out of my blog that I began writing in 2011. People from all around the world felt an authentic connection with the idea that humour can help us cope with adversity. My cousin Sarah and I co-founded LAMN as a way to spread that idea to more people, and along the way we began raising funds to provide equipment to the muscular dystrophy community. In the past three years we have provided over $150,000 in medical and adaptive equipment to people living with muscular dystrophy.

4. In 2014, you wrote your first book. A memoir also entitled, Laughing At My Nightmare. Two further books followed. Who are your books aimed at and can readers expect?

Both of my memoirs (Laughing at My Nightmare, 2014; Strangers Assume My Girlfriend Is My Nurse, 2019) are about funny experiences I’ve had, from my early school years into adulthood. Strangers is more about society’s flawed perceptions of disability. My children’s book (Not So Different, 2017) answers the most common questions that kids ask about my disability and my wheelchair.

5. In the past, you have faced criticism from some in the disabled community. The terms ‘inspiration/pity porn’ have been used. Can you explain why this is and how you feel about the backlash?

Living with SMA can, at times, be extremely difficult from an emotional/mental standpoint. Experiencing the slow decline of ability through my adolescence and coming to terms with my future and my place in society was not always a bright, cheery process. My writing has always been an authentic reflection on my thoughts and experiences, so I wrote honestly about my fears and challenges. When my story began to receive attention on a larger scale, there were some people in the disabled community who didn’t agree with my sharing of these intimate worries. People accused me of playing up the negative aspects of my disability for attention, while others thought I was exploiting my life in an attempt to be “inspiring.”

I’m glad that people spoke up with their criticism. Although my writing has always been overwhelmingly positive, their feedback helped me reflect on some of my fears about getting worse and dying. Getting involved in the muscular dystrophy community has been such a positive thing for me, and they’ve helped me reframe my outlook on a personal level, which, in turn, has changed how I write about my disease. We are all learning and growing together!

6. Has your attitude to disability, your own in particular, changed over time?

Earlier in life, my biggest concern was minimising my disability for the sake of appearing “normal.” As I’ve gotten older, I’m less concerned with fitting in, and becoming more passionate about embracing my disability and changing the way society sees disability.

7. You have been with your able-bodied girlfriend, Hannah, for over two years. If you are comfortable doing so, would you please share with us how you met and a little about your relationship.

Hannah and I live together in Minneapolis, and she has been my primary caregiver for the past seven months. After doing two years of long distance, we are both happier than we’ve ever been now that we are permanently together. Like all couples, we have the occasional disagreement, but by and large we don’t feel like the caregiving aspects of our relationship create a strain. In fact, we both agree that these caregiving activities help strengthen our emotional connection.


I would like to thank Shane for taking the time answer my questions.

I hope you enjoyed reading this interview.


Twitter: @LAMNightmare

Website: Laughing At My Nightmare

YouTube: Squirmy and Grubs

Instagram: @shaneburcaw

Tricia Downing | Paraplegic, Sports Woman & Novelist

Fiction novel ‘Chance for Rain’ shows disability experience for what it is: another version of the human experience

Tricia Downing is recognized as a pioneer in the sport of women’s paratriathlon, and as the first female paraplegic to finish an Iron distance triathlon. She has competed both nationally and internationally and represented the United States in international competition in five different sport disciplines: cycling (as a tandem pilot prior to her 2000 accident), triathlon, duathlon, rowing and Olympic style shooting. She was also a member of Team USA at the 2016 Paralympic Games.

Tricia Downing

Tricia featured in the Warren Miller documentary, ‘Superior Beings’ and on the lifestyle TV magazine show, ‘Life Moments’.
Additionally, she is founder of The Cycle of Hope, a non-profit organization designed for female wheelchair-users to promote health and healing on all levels – mind, body and spirit.
Tricia studied Journalism as an undergraduate and holds Masters degrees in both Sports Management and Disability Studies.
She currently lives in Denver, Colorado with her husband Steve and two cats, Jack and Charlie.

Visit Tricia: www.triciadowning.com


Love and disability: Do the two actually go together? In the eyes of 32 year-old Rainey May Abbott, the uncertainty runs high. But with a little arm twisting, this paralympic skier embarks on an adventure that takes her completely out of her comfort zone…

Tricia Downing: “Rainey May Abbott came to me one night as I was drifting off to sleep and wouldn’t leave me alone – until I got up and started to write.”

“I never intended to write a fiction novel. My first book, the memoir, ‘Cycle of Hope’, was a feat in itself for me. I never had enough confidence in myself that I could write and publish a book. Fortunately, my expectations were reasonable and I really had only one goal with that book; to share the complete story of my accident with those who attended my motivational speeches and were intrigued enough to want to know more after hearing me speak on stage for an hour.”

“On September 17, 2000 I sustained a spinal cord injury. At the time, I was a competitive cyclist and was out on a training ride with one of my friends when a car turned into our path. My training partner barely missed the car, as I hit it square on. I was launched off my bicycle, landed on my back on the windshield, and fell to the ground. I was paralyzed on impact.”

“I was 31 at the time, and just beginning to get my stride both professionally and personally. The accident turned my life upside down. I had to learn to live life from a wheelchair, use my arms instead of my legs, create a new body image and not only accept myself despite my disability, but to believe others would accept me too.”

“Will anyone actually love me if I have a disability?”

“Fortunately my question was answered only four years after my accident when I met the man who would become my husband. However, I have found through talking to many other women in my position, that this concern is not only real, but seems to be pervasive in the disability community. Is it possible to find love when you don’t fit the mold of the typical woman regarded as beautiful in our society?”

“When I imagined Rainey in my dreams that night, I knew her plight and I could empathize with her fear when it came to relationships. And with that, the story of ‘Chance for Rain’ was born. So too was my desire to see more disabled characters in literature.”

“I think,  so often many people with disabilities feel invisible. We aren’t seen on the cover of magazines, in the movies or books. Unless, of course, we’re the tragic character or overly inspirational and defying all odds.”

“My goal with Rainey was to show that she could have a normal existence while embodying a fear that is not unique to women with disabilities. I think at one time or another, every woman has grappled with her body image or desirability. Rainey just happens to have another layer of complexity to her: her life is not as common as the popular culture ideal.”

“I hope my novel will give readers a new perspective on disability, love and relationships as I continue what I hope to be a series of stories featuring characters with different disabilities, navigating the ordinary, complex, and the unknowns of life and love.”


Chance of Rain

Elite athlete Rainey Abbott is an intense competitor, but inside she feels a daunting apprehension about her chances of finding true love. Her life as a downhill skier and race car driver keeps her on the edge, but her love life is stuck in neutral. A tragedy from her past has left her feeling insecure and unlovable.
Now that she’s in her thirties, Rainey’s best friend Natalie insists she take a leap and try online dating. Rainey connects with ‘brian85’ and becomes cautiously hopeful as a natural attraction grows between them. Fearful a face-to-face meeting could ruin the magic, Rainey enlists Natalie to scheme up an encounter between the two whereby Brian is unaware he is meeting his online mystery woman. Rainey is left feeling both guilty about the deception and disappointed by something Brian says.
When they finally meet in earnest, Rainey’s insecurities threaten to derail the blossoming romance. As she struggles with self-acceptance, she reveals the risks we all must take to have a chance for love.

‘Chance of Rain’ by Tricia Downing is now available to buy from Amazon

Interview | Amberly Lago

True Grit and Grace: Turning Tragedy intoTriumph

Former athlete and professional dancer Amberly Lago suffered a horrific motorcycle accident in 2010 which severed her femoral artery and shattered her right leg almost beyond repair. Despite her debilitating, life changing injuries, Amberly has transformed her life and is now a fitness trainer and motivational speaker, inspiring thousands with her resilience and ability to thrive.  

In her remarkable memoir, ‘True Grit and Grace’, this Texas girl instills hope to keep moving forward by sharing the tools and strategies that have worked for her. The determination, defiance and gratitude she demonstrates encourages readers to find resilience in their own difficulties. By refusing to give up, Amberly has admirably commited herself to regaining her active lifestyle, thereby proving it is possible to hit rock bottom and still find the strength to get back up.


1. Amberly, could you please tell Disability Horizons readers how your disability affects you and how you continue to cope with ongoing, chronic pain?

Following my motorcycle accident in 2010, I was diagnosed with Chronic Regional Pain Syndrome. CRPS is known as “the suicide disease” because it causes constant chronic pain. It’s ranked highest on the pain scale and has no known cure. When I was first diagnosed, I was told I’d be permanently disabled and wheelchair-bound.

At first I lived in denial and pretended nothing was wrong. Behind my smile, I was dying inside from physical and emotional pain. Everything I read about CRPS left me feeling hopeless. Still, I continued moving forward, despite the feeling of a vice grip on my foot and battery acid through my veins. I tried every kind of treatment for my pain, including a spinal stimulator, nerve blocks, ketamine infusions, Eastern and Western medicine, and anything that claimed it could bring me relief.

It wasn’t until I accepted the fact that I had CRPS and what I call my “new normal” that I began to show myself the self-love and self-compassion I needed to start to feel better. I wish I could tell you I found some magic pill or movement that relieves my pain, but the truth is, every day is different, and so are my pain levels. What works some days doesn’t always work the next, so I just keep trying, and doing, and praying.

When I am in pain, I go through my list of helpful tools. There is no particular order.

I practice mindfulness, meaning I do whatever I can to stop thinking about and focusing on my pain. I surround myself with positive people. No more doggy downers, only puppy uppers!

I count my blessings and practice gratitude.

I give myself permission to rest on a flare day and remember that I am doing exactly what I need to do. I am recovering.

I eat an anti-inflammatory diet.

I am on a sleep schedule (and yes, this means that I have an alert on my phone that tells me when it’s bedtime).

I am still learning to meditate.

I breathe deep breaths.

I pray.

I do everything I can to be of service to others. When you focus on the well-being of others, your self-pity disappears as you improve the quality of someone else’s life.

Then I repeat. Instead of allowing my pain to make me bitter, I do my best to appreciate everything I have, no matter how big or small. I will focus on the good in my life and let that be my medicine.

2. You endured incredibly trying times prior to your motorcycle accident, including parental divorce and sexual abuse. How has maturity and resilience helped you since your accident?

I learned from a young age to “cowgirl up” because at the time, there was no alternative. Dwelling on why reality wasn’t prettier wouldn’t have done a thing for me. It would have crippled me then, preventing me from achieving everything I wanted to and crippled me years later when I was actually crippled, preventing me from choosing nothing less than recovery. As weird as it may be to say this, I believe the pain and isolation I felt in those difficult times as a child were an ironic blessing of sorts. When you know from an early age that you’re on your own and can rely only and entirely on yourself, it’s as liberating as it is sad. But if you can take the sadness and self-pity out of it, then what you’re left with is a liberating sense of freedom—and, when trauma strikes, you don’t waste any time looking for someone to bail you out.

3. How and why did you choose to ignore and defy the doctor who abruptly told you that you would never function normally within society, not walk again?

Call it my stubbornness or my love of a good challenge or being in complete denial, but I wanted, more than anything, to chase after my daughter like a mother should and be free to do the things that make my heart sing, like hiking and exercise. Just because my body was “broken” on the outside, I was still the determined athlete on the inside. I learned to truly listen to my body and to be the healthiest I could be, despite my circumstances. We may not get to control what happens to us, but we can control how we react to it. So, getting on with my life was a series of three steps up (to the degree that I could take steps) and six steps back, both physically and emotionally. Every one of my surgeries, that totaled 34, I viewed as bumps in the road. I couldn’t think of them as anything but that. If I had, I would have given up. And nothing, not even a doctor’s advice, could get me to do that. Although I love my doctors, I had to think for myself when it came to my own health and happiness.

4. Understandably, you experienced severe depression following your accident. What was the turning point for you?  And how do you find strength and energy to turn such despair into positivity?

Somewhere in between surgeries number 28 and 34, I mentally spiraled into a deep, dark depression. I could feel myself giving up and giving in to the pain, and in that moment, I thought about my beautiful children, my family, my friends, and my clients, and realized I had better make a decision. I could go down the road of despair or down the road of peace and happiness. I immediately threw myself into a place of gratitude for all I did have in my life. Every time a negative thought crept into my mind, I replaced it with something I was grateful for. I threw myself into physical therapy and stayed active with my fitness clientele. Even though I couldn’t physically train them at first, I could still create their exercise plans and coach them over the phone. Being of service really took me out of my despair and gave me a sense of purpose and a strong feeling of connection.

5. Complex Regional Pain Syndrome (CRPS) is also often referred to as “the suicide disease” due to the fact so many sufferers take their own lives. How did you overcome the odds and move forward in order to achieve your goals and live life to the fullest?

My heart sank the first time I learned I had what is known as the suicide disease. When I found out I had an incurable disease that would leave me in constant chronic pain, I defaulted to denial; it took me years to accept that I am a woman with a disability. It wasn’t until I completely accepted my disability that I could begin to heal—not only physically, but emotionally and spiritually as well. I focus on what I can do and don’t get caught up in past accomplishments. I celebrate small victories along the way, whether being able to walk up the stairs on my own or walk on the beach with my family. I only look back to see how far I have come. I connect to my higher power every day and pray. Instead of letting my chronic pain detour me from my endeavors, I use it as a tool to connect me with others going through challenges and am reminded that I am not alone on this journey.

6. Throughout the book, you discuss the need for hope, acceptance and gratitude — to be thankful for all you have rather than looking to the past and what you have lost. Do you feel this is the key to getting the most out of life?

At first I was so caught up in my past accomplishments that I couldn’t live fully in the present moment. I went from being a dancer, athlete, and fitness trainer to fighting just to stand upright for a few seconds at a time. I was so embarrassed of my scars and tried to pretend that nothing was wrong with me. Allowing others to see my scars crushed me. Slowly, however, my perspective changed and I took ownership of my story. I then viewed my scars as battles I had won. Instead of looking down at my leg in anguish, I looked at it as a blessing. I still had my legs. Once I embraced my imperfections and learned self-acceptance, I truly began to heal and be comfortable in my own skin.

Without the traumas and heartbreaks of life I wouldn’t be able to serve the way I do now. It’s not about circumstances but about what you decide to do with them. I focus on what I am grateful for and don’t leave any room for self-pity. I make my purpose bigger than my problems.

As Albert Einstein said, “There are only two ways to live your life. One is though nothing is a miracle. The other is though everything is a miracle”. I believe in miracles.

7. Your role as a wellness coach and motivational speaker involves supporting, inspiring and advising others. Why is this so important and how does helping other people through their difficulties benefit you personally?

I wanted more than ever to get back to my passion, which is working with people, but I did wonder who would want to train with me. I felt broken. I trained fitness competitors, boxers, and CHP officers for years—and then I found myself on crutches. I now needed my clients more than they needed me. I needed to get back to work. I needed to give my life purpose above and beyond trying to walk again. Purpose was what would save me mentally, psychologically, spiritually—and, for that matter, physically. Purpose was what would get me on my feet and, someday—as I prayed—running again. I did whatever I could to get myself stronger—and then came the miracle. Business began booming, and did so quickly because people saw me in the gym, in my wheelchair or on crutches, even pushing myself from station to station in a wheelchair. I became the trainer of encouragement who told people, Yes you can! and that was how I trained them. Speaking to groups of people, whether a gathering of youth or  business professionals, about overcoming obstacles is a way of connecting, and when people connect, magic happens. I believe we need to lift others up to be better ourselves.

8. What do you hope readers will take away from reading your book?

What I have learned in life is a series of choices we make regardless of our circumstances. I could either make the choice to give up and let my life be determined by my circumstances, or fight to create something positive out of my situation. My choice is to notice the gifts life offers, which are particularly plentiful when you look for them. I believe in seeing the good in every situation and learning something from it.

I believe we can have the life we have always imagined, even if our circumstances have narrowed our possibilities. My sincere wish is that my story will help each reader claim their own power and belief in themselves and their dreams, and find their own resilience to move forward and choose a life filled with laughter and love, even when things don’t go as planned. We can’t choose what life throws our way, but we can choose to be happy and live a full life, despite our circumstances. Through our trials, we can embrace our challenges, connect to our innermost resilience, and change our perspective on life. We are all strong, but together we are unstoppable!


I’d like to thank Amberly Lago for taking the time to answer my questions so considerately.

Please visit her website to learn more about her life and work as a motivational speaker.

TRUE GRIT AND GRACE: Turning Tragedy Into Triumph by Amberly Lago (Morgan James Publishing; April 17, 2018) – Available to buy now from Amazon.

Please follow me on Twitter and Facebook

Guest Blog | NewCaregiver

This guest blog comes to you courtesy of Harry Cline, who is the creator of NewCaregiver.org and author of the upcoming book, The A-Z Home Care Handbook: Health Management How-Tos for Senior Caregivers.

As a retired nursing home administrator, father of three, and caregiver to his ninety-year-old uncle, Harry knows how challenging and rewarding caregiving can be. He also understands that caregiving is often overwhelming for those just starting out.

He created his website and is writing his new book to offer new caregivers everywhere help and support.


The Best Technology For The Visually Impaired

Photo via Pixabay by Hans

With all the technological advances these days, it’s easier than ever to find ways to make everyday life run a little more smoothly when you’re living with a vision impairment. From various products that support braille to low-vision magnifiers, there are companies that provide several items that will help you be as comfortable as possible in your home.

Here are some of the best pieces of technology to aid you in everyday life:


Braille notetakers

Work in Word, Excel, and PowerPoint and view PDF documents using a notetaking application that utilizes braille.

Reading machines*

Scan printed material and have one of these machines read it to you. You control the speed of the speech and the volume, and have your choice of different models that have CD options and the ability to read through text by word, sentence, paragraph, or page and change the reading voice. The Poet Compact2 is a popular solution. It doesn’t even require a computer.

Braille label maker

If you have a vision impairment, it’s important to organize your home in a way that both makes sense to you and will help you stay safe and comfortable. One of the best ways to do this is to use a braille label maker to keep areas like the kitchen and pantry neat and easy to navigate. Label shelves, drawers, or individual items in several different areas of the home.

Magnification products

If you have issues with low vision, consider investing in a magnification product that will make it easier for you to read, watch television, and work on the computer. There are several different models and magnification strengths depending on your specific needs.

Braille money identifier

It can be difficult to handle paper money when you have a visual impairment, but there are several products on the market now to help sort bills and keep your cash safe, such as this braille model.

Braille compass

Getting around is made much easier by the use of canes and a braille compass, which can be of use when you’re out for a long walk or simply want to find your way around the city easily.

Special eyewear

According to the American Foundation for the Blind, there are now special eyeglasses for those living with low vision that digitally enhance the viewing field using a high-definition camera. This technology is mobile and hands-free, and works for both near and far vision.

While it never hurts to get some outside help for living comfortably with a visual impairment, technology has made it much easier to do so on your own.


Source material: organize your home and braille model


I would like to thank Harry Cline for taking the time to write this guest blog.

ZENKA | Book Review

Synopsis:

Ruthless, stubborn and loyal.

Zenka is a Hungarian pole-dancer with a dark past.

When cranky London mob boss, Jack Murray, saves her life she vows to become his guardian angel – whether he likes it or not. Happily, she now has easy access to pistols, knuckle-dusters, and shotguns.

Jack learns he has a son, Nicholas, a community nurse with a heart of gold. Problem is, Nicholas is a wimp.

Zenka takes charge. Using her feminine wiles and gangland contacts, she aims to turn Nicholas into a son any self-respecting crime boss would be proud of. And she succeeds!

Nicholas transforms from pussycat to mad dog, falls in love with Zenka, and finds out where the bodies are buried – because he buries them. He’s learning fast that sometimes you have to kill or be killed.

As his life becomes more terrifying, questions have to be asked:

How do you tell a crime boss you don’t want to be his son?

And is Zenka really who she says she is?


My Review:

I confess, I would not ordinarily be drawn to ZENKA based on the front cover. However, I am so thankful I was offered the opportunity to read this latest offering from the brilliant Alison Brodie.

There really is something for everyone in this fast-paced, action-packed novel. It is a rollercoaster of intrigue and excitement. One minute you will be laughing hysterically at the dark comedy, which suits my sense of humour completely. In the next moment the mystery and tension will have you gripped with suspense.

The eclectic characters are fully formed, endearing and creatively written. Zenka herself, with her amusingly unique dialect, is a force to be reckoned with. Hell, I’d love to spend a day with her – it would be an adventure to remember!

With twists and turns aplenty, an unpredictable plot and even an appropriate injection of romance, ZENKA is a must read.

It is unique, cleverly crafted and refreshing, with a thoroughly entertaining blend of elements. Personally I would love to see this cinematic story adapted for the big screen!


I’d like to thank the lovely Alison Brodie for providing me with a copy of ZENKA in exchange for an honest review.

ZENKA is available to buy NOW!


Connect with Alison Brodie:

Twitter
Facebook
Website


About the author:

Alison Brodie is a Scot, with French Huguenot ancestors on her mother’s side.

She is a writer and animal rights activist.

Her books have been published in hardback and paperback by Hodder & Stoughton (UK), Heyne (Germany) and Unieboek (Holland).

Alison is now a self-publisher. Here are some editorial reviews for her recent books:

BRAKE FAILURE: “Masterpiece of humor” – Midwest Book Review

THE DOUBLE: “Proof of her genius in writing fiction” – San Francisco Book Review.

Interview | Janine Shepherd

Here is my latest interview, with Janine Shepherd, for Disability Horizons.


Janine Shepherd: a broken body is not a broken person

Former elite athlete and celebrated author, Janine Shepherd shares her inspirational story in the best-selling memoir, Defiant: A Broken Body is not a Broken Person. It chronicles her journey following a tragic accident that cut short her bid to compete in the 1988 Calgary Winter Olympics. Partially paralysed and suffering life-changing injuries, Janine made the courageous decision to let go of her former life and face adversity head-on, creating a new dream for herself.

Here I speak to Janine about her journey, the challenges she has faced and how she’s reinvented herself and her outlook.

Hit by a truck in 1986 during a bicycle ride in Australia’s Blue Mountains, Janine was not expected to survive. Told by doctors that she would never walk again, nor have children, she spent the next few years rehabilitating her permanent disabilities and defying all the odds.

A mother of three, best-selling author, public speaker, aerobatics pilot and the first female director of the Civil Aviation Safety Authority, Janine speaks candidly and with humility about how and why she reinvented herself and changed her self-perspective.


Janine, please tell Disability Horizons readers about your disability and how it continues to affect you.

The accident gave me severe spinal cord injury – I broke my neck and back in six places. After extensive surgery and rehabilitation, there was just about enough nerve connectivity to be able to learn to walk again, albeit with a significant limp.

Now, in addition to significantly wasted lower leg muscles, I have limited feeling from the waist down and chronic bladder and bowel dysfunction. I also have to self-catheter a lot, which results in regular urinary tract infections. Your readers might agree that these issues are possibly the worst part of living with spinal cord injury.

‘Janine the machine’ is how you referred to your old self – the elite cross-country ski racer. Do you feel this remains a true representation of your character? If not, how would you now define yourself?

Even though I felt that my body was ‘broken’ after my accident, I realised that my spiritual essence and mental toughness remained unchanged. I soon learned that being ‘Janine the machine’ had less to do with athletic prowess than unshakeable determination and persistence. Recognising that gave me the strength to reinvent my life in a most remarkable way.

Following the accident and being unable to walk, you focused on learning to fly. In your book, you state: “I had to find something to replace what I had lost in my accident”. Why was it so important to set yourself such an ambitious goal?

We often define ourselves by things outside of us – our jobs, our relationships, the roles we play in life. When we lose those things, who we are and everything we believed in is challenged. When we experience such immense loss in life, whatever form it may take, it is very easy to slip into despair, which is what happened when I got home from the hospital. Flying filled me with so much joy and gave me the inspiration and hope that I really could rebuild my life in an unlikely and extraordinary way.

The feeling of despair was almost inevitable. You state that you suffered depression on returning home after a six-month stay in hospital. How did overcome this?

I overcame the despair by throwing myself into flying as well as my physical therapy. At first, this was more discipline than it was a spiritual or emotional triumph. I simply interrupted the pattern of depression by charting progress on all fronts, no matter how incremental it may have been from one day to the next. This helped to refocus my life and channel my depression elsewhere. Hope and application proved to be powerful antidotes to depression.

You discuss your choice to keep fighting versus letting go and accepting not only your body but also the circumstances. This led you to stop asking “why me?” but rather, “why not me?” Why was it so essential to change your perspective?

Before my accident, I had led a very narrow life in that all of my friends were athletes of some sort. In hospital, I met so many other people, whom I would normally not have met. This opened my eyes to the fact that I wasn’t alone on this journey.

Even though we came from very different walks of life, we experienced similar struggles with acceptance and recalibrating how to live life post-recovery. Equally important, we had in common the typical hopes and dreams of anyone for a ‘normal’ life once we left the spinal ward.

You have faced great adversity on a number of occasions. Having rebuilt your life following your accident, you then later experienced the upheaval of divorce and financial ruin. What gave you the strength to once again thrive and persevere despite these challenges?

I developed a philosophy very early on in my days as an athlete called ‘loving the hills.’ One of my racing advantages was that I took on the climbs my competitors dreaded with a passion. That not only made me physically stronger but mentally tougher as well.

This proved to be more than just a training philosophy; it became my choice as a way seeing and living life. Ski races and life experiences are both full of hills; loving them not only gave me a competitive edge but also developed my resilience. So when faced with a life challenge that, metaphorically, looks insurmountable, I take that on as just another ‘hill’. Loving it, not fighting it, teaches me the lessons I need in order to grow into a wiser and more compassionate person.

One of the themes of your book is the concept of disability. You emphasise the importance of believing in the power of potential and adopting a defiant mindset, so that one may not be defined by their physical limitations. Can you share your outlook on disability?

I went from being a gifted, multi-sport athlete to having to relearn how to walk. So, it took me years to finally and fully accept that I am a woman with a disability. At first I felt embarrassed by many aspects of my spinal cord injury, bladder and bowel dysfunction.

However, as I look back and see how much I have achieved, despite my challenges, and how much I have overcome, I feel like the aspect of loss in my life is no longer something to try to hide. Instead, I’m proud of being able to acknowledge my disability and put my energy into making the best use of my gifts.

Despite your many life-altering setbacks, you write with great humour, humility and encouragement. How have you managed to maintain such a positive and empathetic attitude? And do you feel that humour is important in maintaining a healthy outlook?

I absolutely feel that being able to laugh at life is an essential part of the healing process. I tell others not to take life too seriously or you’ll cloud the experience. There are so many documented mental and physical health benefits of laughter. Humour helps me to deal with chronic pain, something that remains a part of my life on a day-to-day basis.

You state that the loss of your athletic career and your physical limitations ultimately allowed you the freedom to embrace life’s potential and infinite possibilities. This is a remarkably refreshing and open-minded viewpoint. How have you ensured that you are defined by your accomplishments rather than your broken body?

I believe that life is about loosening our grip on the things that we feel entitled to. Many of the ancient teachings state that this only leads to suffering. When we let go of the life that we feel we should have, we gain the freedom to see the world through new eyes, and create a more ideal life we can only then envision. This is the gift that comes from realising that life is not about having it all, but loving it all, even the painful parts.

Finally, what do you hope readers will take away from your memoir?

I believe that each of us serves both as companion and as mirror to those we meet along the way. When we accept that we are not alone on our journey, and just how precious and short it is, we become open to seeing the world from a perspective of love and hope.

We then understand that, despite the inevitable life challenges, we always have the choice to reinvent our lives and embrace the new with a sense of wonder and joy. My sincere wish is that my story helps each reader better connect with his or her defiant human spirit. And, that doing so serves to foster the pursuit of the uniquely rich, extraordinary life that awaits every one of us.


I would like to sincerely thank the wonderful Janine Shepherd for speaking with me.

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