Tami Simon: You’re listening to Insights at the Edge. Today my guest is Janine Shepherd. Janine is a motivational speaker and author who draws on her experience of rehabilitation as a walking paraplegic and former Olympic hopeful to share how she learned about her own incredible strength in the process. Among other accreditations, Janine was awarded her country’s highest civilian honor, the Order of Australia, for her work in raising awareness of spinal cord research. Janine is well known for her TEDx Talk, “A Broken Body Isn’t a Broken Person,” which became the subtitle for her newest work with Sounds True—a new book called Defiant, which chronicles her remarkable journey and offers hope and encouragement for anyone facing a life challenge, sharing Janine’s hard-won wisdom and priceless advice for navigating one’s way from loss to healing.
In this episode of Insights at the Edge, Janine and I spoke about being alive as a choice, and the power in knowing that. We talked about her experience firsthand of being more than her body and how that experience has informed her view of death. We talked about the qualities of resilience and perseverance, and how Janine feels fear without being afraid of feeling fear. We also talked about how she sees challenges as experiences that hold special gifts, and finally Janine read a passage from her new book, Defiant. Here’s my conversation with Janine Shepherd:
Janine, your life story is quite unusual and quite remarkable, and I’m wondering for listeners who are meeting you here in this conversation for the very first time if you could share a synopsis, if you will, of the accident that you went through and a bit about the recovery process, and if you will, just a bit about the path your life has taken?
Janine Shepherd: I’d love to. Thanks Tami. My story is very well known in Australia so this is—for a lot of the listeners, they wouldn’t be familiar with my story. I guess that’s part of the reasoning for writing this book too, is to introduce a new audience to my journey. Many years ago I was an athlete in Australia and I was a member of the Australian ski team. I was a cross-country skier training for the 1988 Winter Olympics in Calgary.
I was on top of the world at the time. I’d been invited to train with the Canadian ski team in the lead-up to those Olympics and I was on a training bike ride with my fellow teammates from the Australian ski team, riding from Sydney up to the Blue Mountains. It was about a six-hour bike ride. We’ve been on our bikes for around five-and-a-half hours when we got to the part of the ride that I really loved, and it was the hills because I thrive on hills. My last memory was just looking up and seeing the sun shining in my face and then everything going black.
I was hit by a speeding truck with only ten minutes to go in the bike ride. I was airlifted from the scene of the accident by the Westpac rescue helicopter to a large spinal unit in Sydney with extensive and life-threatening injuries. I’d broken my neck and my back in six places. I’d broken five ribs on my left side, my right arm, my collarbone, bones in my feet. My whole right side was ripped open and filled with gravel. My head was cut open across the front exposing the skull underneath. I had head injuries, internal injuries, and massive blood loss. In fact I lost about five liters of blood—which is, for someone my size, that’s about all I would hold—and by the time the helicopter arrived at this spinal unit in Sydney my blood pressure was 40 over nothing.
So, I’m not meant to be here. I actually have no recollection of the accident, which is really interesting. The first ten days I had what I call—I don’t even call it a near-death experience; I call it a death experience because I did leave my body. I spent ten days, I guess, in-between dimensions, in a place that is really difficult to describe and I don’t often talk about it, but I was given a choice to return to my body. Having been someone who was an athlete and who defined themselves by my body it was a really difficult choice, because I didn’t want to come back because I knew that my life would never be the life that I had chosen before. I wouldn’t have the life of an athlete, and for reasons that even I’m unsure of today I made the choice and came back to my body.
They did some tests on my back. They discovered that the worst break in my back, L1, was what they call a comminuted fracture; It was completely crushed and the bone was shattered in my spinal cord. I had extensive spinal surgery; they used two of my broken ribs and they rebuilt my back. After almost six months in the spinal ward, I left in a wheelchair and I was told that I would never be able to do the things that I did before and I would have to rethink everything that I did in my life. It was—for me, being an athlete, it was my worst nightmare.
At that point I got home in my wheelchair, and suffered terrible depression where I didn’t want to be in my body. I didn’t want to be where I was, and I felt that there was nothing really to live for. Everything that I’d worked for, my goals, everything I valued had been taken from me by this speeding driver, and it really got to the point where I ended up on my knees on my bedroom floor saying, “Show me a way through this or show me a way out of this.”
That was really a seminal point in my life where I actually—what I say [is] I really let go and reached this place of acceptance about where I was, and when I did that everything changed. I was sitting outside in my wheelchair covered in a plaster body cast, and an airplane flew overhead. I looked up and I thought to myself, “Well, if I can’t walk, then maybe I can fly.” It was an unlikely decision on my part. Everyone thought I was crazy, but that moment changed my life. I was, not long after that, taken out to a flying school at Bankstown Airport, carried into the flying school, and lifted into an airplane, a light aircraft, for the first time and taken out for a flight. It was the most magical moment of my life because I was no longer a person with a disability. I was free, and that was my decision—that I was going to fly.
To cut a long story short, I went on and I eventually, at the same time as I was learning to walk again, I learned to fly and I went on and became a commercial pilot, and an aerobatics flying instructor, and wrote books about my experience. I ended up having three children. They said I would never have children. It just seems that that moment in my life, when I looked up and saw that airplane flying overhead, changed everything about what I thought was possible in life.
TS: There’s so much, Janine, that I want to tease out from your story. First of all, just to say that your story is very moving to me, and I want to go directly to that moment where you’re on your knees and you’re back from the hospital in a wheelchair. I read in the book Defiant, your memoir, that you’re weighing 80 pounds at this point. You’re in a plastic body cast. You have a catheter, and that the nurse in the spinal unit had warned you that you very well may feel depressed when you go home, so of course that makes sense; good warning.
And here you are. I can imagine that things could have gone either way and that for a lot of people in a situation like that, it goes a path of addiction and spiraling downward, and eventually just death, and just a downward spiral. Here you prayed, [and] saw a plane in the sky. What do you think happened? What in you—you said it was a kind of acceptance. What was that shift that happened in you that gave you this new unfolding and expanding life?
JS: It was a remarkable experience for me. I think that I was in such pain at that point—not just physical pain, I mean, the emotional pain was extraordinary. Going back to the whole idea of a catheter, people—now that I’m up and walking it’s very difficult—people look at me and say, “Well what do you mean you’re a walking paraplegic?” Well, I have no feeling from the waist down. I use a catheter. I’ve had to use a catheter since I had my accident, and I think one of the moments that really was shattering for me was, I was in my wheelchair, I was wheeled into a doctor’s office, and he said, “Well, let’s talk about sexuality,” and that’s something that’s not often talked about with spinal cord injury.
He said, “You know, you’ll never have the big O again.” I just remember sitting there and thinking, “What else can I lose? I’ve lost everything,” so even my sense of being a woman was being taken from me. I think that was the moment—when I got home on my floor, covered in a complete body cast; I couldn’t walk, I couldn’t use the bathroom. I had a body that didn’t function. I just thought, “You know, I don’t want to be here.” I really contemplated how I could get out of my body at that point.
I think, in the end, it came back to the awareness that I had actually made a choice to be in this body. I felt in many ways that I owed it to my parents because of what they had been through, but I needed to find out what it was about. Why did I make the choice to come back to my body? And maybe until then, I would just put that aside and give my life a chance, give it a second chance to find something in my life. I think it was the letting go of the attachment to my old life, of the expectations of my old life—letting go of my idea that I was an athlete. I was not an athlete anymore. I was a person with a disability.
I think it was just [that] the letting go really freed me up, and suddenly I was able to see other possibilities in life. Mind you, I’d never wanted to fly an airplane before. It was the last thing I’d—where did that come from? I don’t know, but I think it was just the letting go of the old ideas of who I was. I love the Lao Tzu quote, “When I let go of what I am I become what I might be,” and I think that that really defines that moment to me. “I’m letting go of that, now who might I be?”
TS: It’s an interesting paradox because your new memoir is called Defiant and yet you’re talking about this moment of letting go—you could say a moment of accepting; not defying but accepting. How do you understand that paradox in your own life journey? Clearly, you have an incredible will. I mean, the original version of your story published in Australia was called Never Tell Me Never. Never tell me I can’t do this—I can’t have kids, I can’t have a sexual life, productive life—so this balance, if you will, paradox between defiance and surrender.
JS: It’s an interesting paradox. The whole journey of calling this memoir Defiant was interesting as well. I think I’ve done quite a bit of reading about the word “defiant” and I’d like people to think of it in a different way. I mean you look at someone like Viktor Frankl, who survived the atrocities of the prison camps, and he talks about the defiant human spirit. Often we think of the word “defiant” as being an angry fist raised in the air, but defiance can be expressed in all sorts of ways. I mean Mother Teresa was defiant. Defiance can be also the gentleness that we have. To me, defiance is not listening to the naysayers; defying the things that hold us back. Defiance is also—it works wonderfully with acceptance, because firstly, let me say, I’ve written a book about acceptance too. We often think of acceptance as resignation, which it’s not. Acceptance is just being able to say “OK, well this is the ‘is-ness’ of my life. Now what?” It’s certainly not resignation.
To me, defiance is an incredibly important word and a concept that we need to embrace. It’s about saying “OK, so this is my life. How am I going to honor my life and my journey, and my path?” Not listening to what everyone else says is possible or isn’t possible in my life, which is what I’ve done the whole time, but to be able to say, “This is what I want in life. This is what my life is about,” and honoring that authentic path. To me, that’s defiance. It’s defying the things that hold you back from being all that you can be. To me, it’s a quality that we all need and should embrace in a healthy way.
TS: Now, you talked about recognizing that you had made a choice—that you made a choice to come back into your body, to use your language, and to be here. You made a choice to be alive and to be here. I’d love to hear more about that moment of choice. When did that happen in your process?
JS: Well, it was sometime during those ten days. Mind you, those ten days were not clearly linear for me. There were ten days that I was in and out of my body. It was a time that was just pure awareness. I read as many books as I could after my accident about NDEs because I just didn’t understand why my experience was so different from everybody else’s. I’ve just come to the conclusion that we are able to move between these dimensions.
What I remember about my experience—and mind you there’s so many books about people that have been through near-death experiences and they focus on that, and I’ve always said that I’ve written about my life experience, not my near-death experience, because to me it’s about embracing life and not trying to get out of it. That’s what we’re here for.
Briefly, what I did experience is the knowledge of that if I did return to my body, that I would have a body that had a disability, that I would have enormous challenges to deal with. Despite that, I made the choice to come back. It was almost as if I was shown a film of what my life would be like if I came back to my body—with all the challenges, the physical challenges that I would have with that body. Making that choice, is an interesting one because I’ve always thought “Well, if I knew that it was going to be such a painful and challenging life, why did I take it?” I believe that the challenges that we face in life are actually the most important times of our life. They’re the times that help us to dive deep and to ask the really important questions. Why else would I have come back?
TS: I’m curious what you think—I think in terms of this, that most people, I think, don’t experience their life as a choice, Like, “I’m here. I don’t really know how I got here. Somehow I kind of landed here and so I’m going to make the best of it because I guess I’m here,” but they don’t think about it as a choice. What do you think about that?
JS: Well, it’s interesting, because I’m really very keenly aware that I made a choice and also that we’ve all made a choice. If I know that I’ve been out of my body and I made a choice to be back in it, so if I’ve done that then I believe—it’s my belief that we’ve all done that. There’s an incredible gift in knowing that. The title of my TED Talk that I gave was “You’re Not Your Body,” so I’m hoping that people will also have some insight into their own lives and that they have made a choice.
It is a challenging thing, concept, to think about because especially when times are tough, I mean, who wants to think that “I chose this?” I think that if we can actually keep reminding ourselves that we did, it’s helpful. It’s a benefit because everything can be useful, every experience.
TS: Now, you mentioned your TED Talk and this idea that you are not your body, and that this is something that you now know in a definitive kind of way from your experience, and particularly those 10 days when you were in the hospital in this limbo state. If you’re not your body, then what do you feel you are, and what is the relationship between this you are-ness and your body? How do you understand that from the inside out, from your own personal experience?
JS: Well, it’s interesting because I always thought that my real strength was connected to my body, and as an athlete, I guess that’s what most of us believe. When I lost the one very thing that defined who I was, I had to look elsewhere, and that really became my turning inwards in my internal search. Well, if I’m not that, then who am I? I guess there are so many ways, so many words that we hear people talk about, whether it’s awareness with pure awareness, with the observer, with spirit whistle. I don’t think it really matters.
To me, it’s not about putting language to it. But if we were going to put a language to it I would have to say being a pilot, that I call it my “pilot light.” I see that there’s a part of us inside that is just always burning and even during the most difficult times if we can tap into that part of us that will never die—the part of us that I believe lives beyond lives because I’ve been out of my body, so that’s my experience—that’s how we find the strength to overcome the great challenges that we have in life. I believe it’s those times, those really challenging times, as I said, are the really, really important times.
What’s the word for that? We are spirit. We are soul. We are eternal that never dies—the part that left my body that was still alive, that was still aware.
TS: What is your view—and I’m just asking you these questions, Janine, because you’ve had such an unusual life experience, and these are questions that are actually important to me as a meditator and spiritual practitioner, and being able to talk to somebody who’s had your experience is a gift, and so I want to make the most of that gift. But I’m curious to know what your experience now is when you imagine dying, if you’ve been informed by your experience in a certain way?
JS: Well, I see it as being a really beautiful thing. I am actually very close to that at the moment. I have a very, very dear friend that I’ve known for a long time through my involvement with Deepak Chopra and the Chopra Center. She’s in a bed at the moment in Sweden with only probably a few days to go, so the whole idea of death is very close right now in my awareness. It’s really interesting because I see it as—although there’s a sadness that I won’t have her in my life in this body anymore, I’m really overjoyed for her because I understand that she’s going to be having quite an incredible, an amazing experience.
To me anyway, my experience is that it’s not we’re either here or we’re there. We’re in all places at once. We’re in the body. We’re out of the body. This is just an experience. Where we are now, being in this body, is just an experience. We’re going to have many of those. Being out of the body is also an experience and I think we get very attached to the whole idea that this is who we are, that this is where we are. It is, now, for this very brief time—very, very brief time—but where she’s going is also just another experience.
TS: Now Janine, when we started our conversation and I asked you to share a little bit about what happened to you and your life story, and you shared the event of the accident and you said it’s really interesting that you have no recollection of the actual accident. You made a kind of off-handed comment, “Isn’t that interesting that I have no recollection.” I’m curious what’s interesting to you about that and what your thoughts are about that?
JS: I think that I already had left my body before I was actually hit, and that’s what I find interesting. How did I know what was happening? I’m not quite sure, but I just have a lot of awareness about being able to see my body being loaded into a helicopter, and awareness of seeing my body lying in intensive care with my father sitting by my side holding my hand, and also being in and out of my body—at one point being able to experience excruciating pain and on the other hand being in a place that was completely pain-free, which was out of body.
I didn’t have the typical near-death experience a lot of people talk about, but I do have an awareness of being guided through the experience, particularly by three beings that were with me who were helping me to make the choice whether to come back or not. Nobody was forcing me to make the decision; it was my decision alone and that’s why I think it’s important to remind myself that I made the choice to be here, which is very helpful to me because when I’ve experienced many other challenges in my life it helps me to remember that, “Well, you made the choice to be here, so make use of it.”
TS: Now, a couple times, Janine, you’ve pointed to this very positive view of challenges. I’ve heard you speak to business people, and executives, and you have this sentence about how you love the hills. As a cross-country skier you loved to go up the hills and down the hills, loving that climb. I think a lot of us don’t necessarily have a positive relationship to when really challenging things occur in our life, and things that seem like they’re coming from the outside that seem difficult. Maybe it’s market forces, or other people—other people, people in our family, things like that. What do you have to share with people that might help us shift our view of when difficult challenges appear in our life?
Well, I love the expression. I always tell people that as an athlete I did love the hills, and that to me they offer a gift and a challenge. As a young athlete training myself to like the hills—which wasn’t easy at first, it was something that I had to continually learn to do, it’s like cultivating any quality. Maybe not as physically strong but mentally tough, and it also gave me the insight that once I was over one hill there was always another one. I say that just like the hills that I face as an athlete, the hills that we face in life are the challenges in life. Every challenge that we face in life offers a gift, and often the reason that we don’t turn towards those challenges are because we fear what’s on the other side.
I think when you turn around and you lean into those challenges you really learn a lot about yourself. You find a strength within yourself that you didn’t know existed, and often there’s a gift in that. Well, there always is. To me, there’s always a gift in everything that you happen when you choose to see it like that, but it’s a choice like everything else. You also realize that the thing that you were probably afraid of really wasn’t as bad as you thought it was.
TS: OK, but this idea that I fear what’s on the other side, that might be part of it, but another part of it might be just, I don’t want to go through the pain. I don’t want to go through the pain of this experience.
JS: Yes, I mean it’s normal. Who would want to go through pain? I’m not saying that we should go out searching for it, but if it’s there, if there’s an experience that’s there, it can actually bring incredible qualities to our life, a tenderness that we wouldn’t have experienced before. It can open our hearts. Just from my own personal experience having to use a catheter, for example, it’s something that I don’t like it. I’d rather not do it, and it’s a painful thing at times. I get very ill from using it. I’ve got to take medication for the rest of my life, but like anything there’s a gift in that too, and I’ll tell you a story about that.
Many years ago I was speaking in Australia and at the end of my presentation I was signing books, and there was a lady at the end of the queue, and she said, “Look, I brought my daughter along to meet you. She really wanted to meet you because she’s had a similar accident.” I asked where her daughter was and she said, “She’s in the bathroom. She’s using her catheter.” Finally the daughter came along. We were chatting and she was a young girl, probably early 20s, and I said to her—we were talking about catheters and handbags, and how to put your catheter in a handbag, and I remember saying to her as a young girl, I said, “How are you coping with using your catheter?” She turned to me and she said, “I love it.”
I remember thinking, “Oh my goodness. How could she love using a catheter?” I said, “Tell me more.” She said, “Well, since my accident I’ve now started working with children with disabilities, and a lot of them use catheters, and my catheter is a bridge, and now gives me something to connect to them about, and I understand them” I thought, “Wow, it’s an incredible gift.” It had really cracked her heart open. Her story, her sharing helped me too. A lot of the painful things in life open us up to be more compassionate, more empathic, and more loving people. Isn’t that a gift?
TS: Now Janine, you wrote the book Never Tell Me Never in Australia and it came out in 1994, about the story of your accident and your recovery, and becoming a flight instructor. And here we are 20-plus years later, and a new memoir, Defiant: A Broken Body is Not a Broken Person, is being released into the world. What has happened in the last 20 years that made you feel that another book about your personal story could be beneficial for people?
JS: Well, I always think that when it comes to anything in life, putting anything out there in the world, there comes a state of readiness. I’ve come to the point in my life where I had had many more experiences. I had given a TED Talk. I was sitting at home answering some emails and feedback from my TED Talk and one of them—I opened my computer and there was a letter from a man in India. The email went something like this: “Dear Miss Shepherd. I have suffered from an ailment for the last 19 years. In fact, it was so bad that I’m considering suicide.” He said, “But I saw your talk today and my life starts now. Pray that I’m successful.”
I remember sitting there reading this email and thinking you couldn’t have two lives that are possibly more different than me sitting at my home in Australia and this man in India, and there was something that connected us about our struggles, about our suffering. I thought about when I wrote my first book Never Tell Me Never, and it was very much in a mindset of not dwelling on those struggles, and the disability, and the loss, and just telling a story. I think that state of readiness was that I’m now ready to be more honest and open about the full extent of my journey, and all the losses, and all of the emotions; all of the hills as well as all of the successes.
It wasn’t just a story about overcoming an accident. There were common experiences about my marriage breakdown, and losing my home, and financial loss, and I thought things that were universal experiences that many people would benefit from hearing. That’s why I wrote this book.
TS: I wonder, Janine, if you would be willing to share with us a passage from Defiant.
JS: Sure. I’d love to. I think I’ll read a passage relating to the first time that I saw my body after my accident, which was a very confronting moment for me.
“While standing and generally pleased with my progress, I happened to notice a large mirror placed so that the patients could watch themselves walking as a learning aid. It was the first time since the accident that I had seen myself in full view and I was dumbstruck by the gaunt figure staring back at me. The clothes I wore hung on me like a sack. My legs were little pegs, weak and thin. My body, once muscular and athletic, had been reduced to a bag of bones. I knew I had lost weight, but to be faced for the first time with the full extent of atrophy was shocking.
I stared at the reflection of this strange person who was supposed to be me and I sagged under the weight of the reality. ‘It’s a bit of a shock seeing yourself for the first time isn’t it?’ Stephanie offered. Overcome with dejection I couldn’t even answer. ‘Don’t worry, now that you’re up you’ll start putting on weight quickly, and the muscle will come back too after you’ve been working out for a while.’ At that moment Mum walked through the door. She had missed seeing me get out of bed the day before. Now she was seeing me on my feet for the very first time since I’d left home the day of the accident.
Not a word was spoken as our gazes met in mutual understanding. I watched as tears welled up in her eyes and rolled down her cheeks. I suspect she had feared she might never see this day. The emotional exchange overwhelmed me and I began to cry as well because I had often feared the same. As Mum came closer her expression warmed into a smile. She leaned over and kissed me on the cheek whispering, ‘You look fantastic.’ Engaging Mum at eye level was an extraordinary experience that belied its simplicity. She and Dad, alone and together, had given me more support and love than I ever could have wished for. I couldn’t imagine how I’d manage my recovery without them. Now facing Mum and standing for the first time in five months, the joy in her eyes told me she felt all her efforts were worthwhile.”
TS: Thank you. One of the things I’m curious about, this quality of perseverance. There’s a lot being written now about grit, the stick to it-ivness, and that that’s the most important determinant of success—whether that’s in sports, or the military, or in business. Is that something that you think some people are just born with and other people aren’t? Do you think it can be developed? What’s your view of that?
JS: It’s such an interesting concept. I love the word “grit” and I love the TED Talk that came out recently about grit. I think that while I agree that there are people that have a high level of grit, but I also think that’s something that can be developed and nurtured like any quality. One of the things I tell people is to always look back at models. I’m a believer of modeling— going back in life, and particularly when you’re going through a challenging period, and remind yourself of a time when you’ve experienced grit, when you’ve shown a high level of grit, and use that as a model, and bring that forward into your life for the challenges that you’re now facing.
TS: Are there models that have been important to you, not just from your own life story, but that have inspired you?
JS: Models from other people?
TS: Yes.
JS: Absolutely. I think, for example, the girl that was my dear friend Maria, who was next to me in the hospital, was somebody who has continued to teach me not necessarily about grit but about other qualities in life. I’m continually reminding myself of experiences that I’ve had which I can bring into my current experiences and use that to cope with whatever challenges I’m having now. But I also use it with my children; I encourage them to look at models and to look at times in their life when they’ve been able to overcome a challenge. I think that’s a really useful tool that we can all use in life.
TS: Tell me about Maria, this person who was next to you in the hospital.
JS: She was an incredible gift for me. When I was moved from one part of the hospital I’d been in already for months and they told me I would be getting up or moving in a few weeks, and of course then they told me that they weren’t able to move me. My back wasn’t strong enough. I started to get terribly depressed in the hospital, and my doctors at that time decided that they would move me to another part of the hospital. They were moving me to a ward next to a girl called Maria, who was the youngest patient there and closest to my age.
I’d heard about Maria through the grapevine of the hospital, that she was the highest-level quadriplegic that was at the hospital. She’d been in a car accident and from what I’d heard, the whispering that came down to me was that she could only move her head. Her injuries were that extreme. I was a little nervous about moving next to her. I was told they were moving me next to her because it would be good for her. In fact it was actually the other way around. It was actually good for me because when I moved next to her and saw how much worse my accident could’ve been, I experienced just—I was so incredibly grateful of course, but it really cracked my heart open when I saw what she was dealing with.
We became great friends. As I said, she was a high-level quadriplegic. She could only move her head. She had damage to her vocal cords and she couldn’t really talk properly as well, but that wasn’t the extraordinary thing. The extraordinary thing about Maria was that the entire time I knew her, she was always smiling and never once did she ever complain about what she was going through in life. This is someone who couldn’t move any part of her body, and even to have a sip of drink, somebody had to bring something over in a straw to her mouth to drink. She went through her life with the most incredible sense of grace, and acceptance, and love that was extraordinary. I always say that she gave me the gift of acceptance.
TS: You know Janine, having this conversation with you today has an interesting timing for me. I was talking to somebody that I work with about seeing the glass as half-empty or as half-full. What’s interesting to me is that I feel a little foolish even having a conversation like that in the face of hearing about what you suffered through with your accident and in hearing the story of Maria. I notice it seems just a foolish idea, even, in a certain way, if you know what I mean.
JS: Instead of—perhaps asking the question is, I’m grateful that I’ve just got a glass. And that’s one of the greatest gifts that Maria gave me is even during the most difficult times of my life, and the pain, and the suffering, looking at her and really giving thanks for my life. That’s one of the greatest gifts she gave me and I call that the gift of acceptance.
TS: Now, you’ve recently moved, Janine, to the United States from Australia. I’m curious to know a little bit about why you moved and how that’s going for you.
JS: Well, as I write in my book I’ve had some incredible experiences. I wrote about the experience of having to—you know I was a single mom for over ten years struggling to pay and put my kids through school, and made all of those financial commitments. With the global financial crisis actually it came to the point where I actually lost my house and a lot of my savings. I can remember—I actually write about this—I remember sitting in the corner of my room and feeling like I’d let my kids down. I was sobbing in the corner of my room in a chair thinking “Well, where do we go now?” My eldest daughter, Annabelle, came up to me and said, “Mom, what’s wrong?” I remember crying and saying, “This is our house. This is our home. We’ve lost it. What do we do now?”
I felt like I’d let them down and she said to me, “Mom, it’s just a house. We’ll be fine. We’ve got each other.” I think, again, it sort of knocked me out of that space and into a new way of thinking. To me, I think that life is a series of loosening our grip. We tend to get so attached to things—whether it’s a house, or car, or a relationship. Sometimes the greatest thing that can happen to us is to actually lose that, because we have a chance to reinvent our lives, which I’ve done so many times. Really, that was the point in my life where I thought “Well, OK, I don’t have a house now,” and I’d move into another home that I had temporarily, and this is a chance for me now to start again for a new beginning, just like all the other ones that I’d been through. I thought, “OK, I’ve been speaking in Australia for a long time and I’ve written my books, so it’s time for me to start again, to go somewhere else and continue to share my story.”
I made the decision to move halfway across the world—to a country where, might I add, I really didn’t know anybody. I had no work. I had nothing. I had just the belongings in my car and here I am, and it’s been just the most incredible journey, and now I’m living in a cabin in the middle of Wyoming.
TS: You write in the book Defiant that you do feel fear when you make decisions and moves—like this move to come to the United States—that you do feel fear but that you don’t feel afraid. I thought that was interesting. Feel fear but you’re not afraid.
JS: I think what I really mean is that I’m not afraid of feeling fear. I’ve been through it so often that it’s familiar. It’s like an old friend. And often when I feel fear it’s usually—OK, to me everything’s information. Everything’s an experience. So when I feel fear, I get really curious about that and I ask myself, “Well, what’s that all about?”
When I told my friends and my family that I was moving to another country I remember someone saying to me, “Well I’d love to do that. That’s OK for you to do because you don’t get scared.” I said, “Oh no. I get scared. I feel fear. The only difference is I’m not afraid of feeling fear.” I think when we can remain open and curious to those feelings that life is filled with just possibilities.
I should add that from that experience I’ve actually met the love of my life, which is why I’m actually in Wyoming, and life has opened up even more interesting paths for me since then.
TS: Janine, just two more questions for you.
JS: Sure.
TS: Do you still fly planes, and if so, what’s important to you about flying now?
JS: I love flying. Flying, to me, is the most magical experience, and when I’m up in a plane I’m not a person with a disability. Nobody can tell that I walk funny, so it’s the most incredible sense of freedom. My flying has been put on hold for quite a few years as I’ve been speaking, and writing, and being a single mom. Of course my partner David and I—he’s a pilot too and we fly together, and we fly over the beautiful Teton ranges and I look forward to getting back into my little aerobatic airplane and zipping around the clouds once again. Yes, I do fly and that’s the plan, to get back up there and maybe get another little aerobatic airplane one day, and perhaps even take other people up flying, which is just something that I love to do, to share that gift of flying.
TS: OK, one final question for you. This podcast series is called Insights at the Edge and I’m always curious to know what somebody’s current “edge” is. What I mean by that is where do you see your own growing edge at this moment in time, personally?
JS: I would say that my edge right now is owning my disability and not feeling shame about that, which is something that I think I have for a long time. There are certain aspects of being a walking paraplegic that people don’t know about, people don’t understand. I’ve written about some of those experience in Defiant because I think that it’s important for people to understand that paraplegia isn’t just about walking.
When I first got out of the hospital and I remember sitting in my wheelchair in the rehabilitation doctor’s office and her saying to me, “Janine, it’s going to be especially difficult for you because you don’t look disabled, and that’s a burden you’re going to have to carry in your life.” I didn’t understand what she meant at the time, and I think my entire life I’ve been coping and getting on with life, and showing people how I got to where I am and how I’ve achieved what I have achieved, and I’ve written about that in previous books. I think I’m at the point where I realize that, well, I am a person with a disability and there really isn’t anything to be ashamed of. In fact it’s something that I’m proud of. I’ve written about that in Defiant. I’ve also written a recent essay on that, which is about the hidden aspects of spinal cord injury.
I feel almost free. It’s an incredibly cathartic experience, but I feel like I’ve sort of come out and I’ve owned my disability. I realize that having these issues, the hidden aspects of spinal cord injury—which are everything ranging from lack of feeling, sexual dysfunction, and worst of all bladder and bowel dysfunction—are not things that I should feel like I need to hide or that I should feel ashamed about. I’ve written about it and I’m speaking about it, and I guess you could say that that has been probably the most challenging aspect of writing about it in this book and talking about it, and owning it and saying, “You know, I’m proud of this.” And hopefully [it] will make the journey for other people with spinal cord injury a little easier, knowing that they’re not alone on this incredibly challenging and difficult journey of living with spinal cord injury.
Being able to talk about my disability and embrace my disability has given me an incredible sense of freedom, in a way. There’s a certain level of letting go that comes from bringing something out that I’ve had hidden for so long, bringing it out of the cupboard and airing it, and a level of acceptance that I hope will also give people that read Defiant permission to also embrace the things that they might have been hiding, or they might feel shame about, and to know that we’re loved and accepted just as we are. I think that’s a really important message.
TS: Thank you for who you are. Thank you for your honesty and your courage, and thank you for being a guest on Insights at the Edge.
JS: It’s been an absolute pleasure, and I have to say being part of the Sounds True family has been an incredible gift and a great blessing to me, and I want to thank you for that.
TS: I’ve been speaking with Janine Shepherd. She has written a new book and it’s also available as an audiobook read by Janine. It’s called Defiant: A Broken Body is Not a Broken Person. Thanks everyone for being with us. SoundsTrue.com: many voices, one journey.
