Presenter: Barbara Abernathy PhD, LMHC, Pediatric Oncology Support Team, and BMT Survivor
This is a video of a presentation at the 2019 Celebrating a Second Chance at Life Survivorship Symposium
Presentation runs 30 minutes.
You do not go through transplant and come out the same on the other side. Transplant survivors and their loved ones draw on an inner strength they may not know they have to persevere and become the heroes of their own stories.
- Our humanness and ability to rise above circumstances makes us remarkable.
- Courage isn't having the strength to go on. It's going on when you haven't got the strength.
- A hero is no braver than an ordinary person, but is brave just five minutes longer.
Transcript of Presentation:
00:00 We will talk not about becoming a hero, but acknowledging the hero that you are: I see just a lot of courage in this room. I can feel it all the way up here, and it's such an honor to be among you today, and have the privilege of speaking with you.
Today, we're going to talk a lot about heroes, we're going to talk about telling your story, and we're going to talk about finding your power in times of despair.
So, the title is that You're Already the Hero of Your Own Story. We're not going to talk about becoming the hero, we're going to talk about acknowledging.
0:35 We live the stories we tell ourselves and others: I'm sure that you find yourself telling your transplant story again and again, whether you're a patient or a caregiver. And that for the most part, when you're telling your story, a lot of people will say to you, "Well, are you cancer-free? Are you in remission?"
They only have one question. And if the answer is "yes", that's where the story ends for them. They don't know how to follow up, they don't know what it is to live beyond a bone marrow transplant. They don't understand how it is to walk in your shoes.
When you tell your story though, it's important to listen to the story that you're telling, because we live our lives with the stories that we tell ourselves. We become the stories that we tell ourselves. So, it's important that we frame them in ways that are empowering to us, even when we aren't feeling it.
01:32 Caregivers are transplant heroes too: And for caregivers in the room, I know that for many of you, you feel like you're not the hero of the story. Trust me, you are. There's a lot of caregivers in the room. Can I see some hands?
Amen. You guys are heroes of your story. It's not your patient's story. It truly is your story as well.
There's a new term that's being floated for caregivers, and it's called "co-survivors". I actually prefer that word, because you survived too.
02:19 So, today, we're going to talk about heroes: what they are, what they're not, and we're going to learn how to connect you to your most powerful self at the times that you need it most.
"Hard times don't create heroes. It is during hard times that the hero is revealed."
So, imagine for a minute that you're the hero of your own story. How does that feel to you? Do you resist that label because we hear the word "hero" so much, or do you embrace it? Does it empower you, or do you turn away from it?
02:56 Our ability to rise above circumstances with our humanness makes us remarkable: You know that the word "hero" gets thrown around in our society a lot, and some of us feel like it's overused. And we're not talking about superheroes, we're not talking about Superman, and Spider-Man, and Captain America. We're not talking about people who are born with superhuman abilities. It's really our humanness that is impressive. It's our ability to rise above circumstances with our humanness that is what makes us so remarkable.
You've had to find your most powerful self in order to survive what you've been through. And you may not think of it that way, but we're going to talk about what that looks like, and how you can find that part of you when you need it.
03:48 Can brokenness and powerfulness co-exist?: In transplant and after transplant, we tend to focus a lot on what's broken. When you go to the doctor, they don't want to necessarily hear about ... You spend a lot more time being problem-focused; and so, we tend to become problem-focused, and we tend to hone in on what that is.
Can brokenness and powerfulness can co-exist: Yeah. You've already proven it. You're the living example of that. From our brokenness, we find our greatest strength.
04:30 So, I love this quote: "True darkness is not the absence of light, but the conviction that there will never be light again."
If you look at that quote, and you substitute the word "despair" for "darkness", and the word "hope" for "light", then it reads: "True despair is not the absence of hope, but the conviction that there will never be hope again." And we've all found ourselves in dark places where circumstances in life drive you to your knees, and you feel like that you're not going to get up again. But the fact that you're here proves that you did. And you may not know how you did it, so we're going to spend a little bit of time breaking that down.
05:17 We create hope in darkest times: Hope is something that we create over, and over, and over again. In the darkest times, it feels like hope is gone for good. Yet it appears over and over again. We don't know how we create it, but we do.
Hope always rises. Even in your darkest time, you're looking for hope. You're seeking hope, and you're finding it, whether you're finding it inside yourself, inside your friends, inspiring movies, or stories, or something that causes you ...
And sharing our stories gives each of us hope. And I think Sue made a great point about that we're sharing our wisdom with each other by being here this weekend. We're hearing from speakers who have a lot of wisdom, but you have a lot of wisdom. What you've been through, the story that you have to tell, is so important for someone else to hear.
So, don't hide your story, because your story is so important, and you don't know that the person sitting next to you doesn't need to hear your own story and be inspired by your story.
06:22 Childhood cancer patients teach us about living in the moment: So, as you heard, I've worked in the area of pediatric oncology for the last 21 years, and have been inspired by over 2000 children and families fighting cancer. And they really are heroes to me. No matter what I was going through, when I would walk through the doors and see these kids, it truly lifts me up.
It's hard to have a bad day when I walk through the door. And because these kids, they're getting their port accessed, and it's, "Ow, ow, ow, ow!" And five seconds later, like, "Where's the playroom?" They teach us about living in the moment. They don't dwell on what happened five minutes ago. They move on. That's such an important lesson for us, because I think sometimes something happens, and we process it, and process it, and process it, and we get stuck in it. And so, living in the moment is a lesson that I learned from this three-year-old boy.
07:20 Story about Paul with ALL: Let me introduce you to Paul. At three years old, he was diagnosed with acute lymphoblastic leukemia. And so, he quickly dubbed himself "SuperPaul." And I don't know if you can tell, but in the photo on the left, he's wearing a cape with a P on it. And that cape was his costume for coming in for his treatment. And when he was wearing the cape, he knew that he was going to be okay. That was like his power, and that's who he was.
So, I had the opportunity to have a conversation with Paul one day, and I said, "Well, what do you think about having cancer?"
And he said, "It's only cancer."
So, I thought, "Well, that's ... Well, all right."
08:15 Cancer doesn't have to define us: So, from this three-year-old, I learned, "Cancer has power, but so do I, so do we." "Cancer" is a word. Cancer, it doesn't have to define us. It certainly impacts us in very profound ways. But he also taught me that courage comes in all sizes. We don't own all the courage just because we're adults.
So, these kids have really been a profound part of my journey. But so have a lot of other people.
Really quickly, Christohper Reeve, as most of us know, was Superman from the '70s and '80s, had a serious fall from a horse, and was paralyzed from the neck down. He lived with a lot of courage, and he has a quote about heroes that I really love:
"A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles."
Well, that defines everybody in this room. There's nobody here that hasn't had to find that strength to persevere, the strength that you didn't know you had, the strength that you didn't feel, and somehow you did it anyway.
09:37 Myths about heroes: So, I'm going to talk about some hero myths, what a hero is not. Because this is what we tell ourselves.
A hero is not somebody born with superhuman abilities. They're not better than us. It's about our humanity.
It's not someone who has to prove they have to go it alone. And if any of you are getting nudged by somebody next to you, I completely understand that.
Heroes are not infallible or perfect, they're not fearless or always brave, and they're not stoic and never complaining. Right?
That doesn't take away from the hero that we are that we have hard times, and that we have to share it, and we have to talk about it, and we have to process it. Again, that's our humanity and the courage that we're showing that's shining through.
So, essentially, what a hero is is, at the most basic element, human: it's our very humanness that makes our courage so remarkable, so outstanding, so audacious.
There's a couple of movies that you'll be familiar with which talk about a Hero's Journey. You might recognize Harry Potter and Lord of the Rings.
10:56 So, a hero's journey happens unexpectedly. None of us expected to have the path that we're on, and to have to deal with the challenges and struggles that we've had to deal with. The other thing that you'll notice about these stories is that they had a lot of helpers along the way. They didn't have to do it by themselves. They couldn't have done it by themselves. So, we're going to talk a little bit more about that. But all great stories and myths are about overcoming adversity and challenges of some kind.
11:27 Map of hero's journey: So, I want to talk about Joseph Campbell, because he breaks down what a Hero's Journey really is, and he has such a fascinating way of talking about it. And he talks first about our ordinary world. That's the place where we feel safe, where we feel normal, where we spend most of our time. And that's what our life was before we had to deal with illness, or cancer, or transplant. It was normal. Maybe even boring. Boring would sound really good. I like boring. And so, that's home, right? Everybody has a sense of what home is. It's safe.
And then along comes some event that rocks your world, that shakes you to the core, that shatters everything you know and believe about yourself and about the universe and how safe it is.
And then there's a threshold in which you cross into what is considered an unknown world. So, when you got a diagnosis, and things felt surreal, like "This doesn't even seem real right now.", and the rules are different, you don't know what to expect. That's when you've entered the unknown world.
And so, the first threshold a lot of times is refusal: "No, this isn't really happening to me. I'm going to make my life as normal as possible. I'm going to fight this, and it's not going to affect me." A lot of us went through that. But you're at that time crossing into that unknown world where the rules are different, and you have to learn a new language, and you have to figure out the new customs of whatever it is that you've going through.
But also at that time, that's when we meet our mentor and our helpers who are going to be there with us through the journey. They're the ones who step up. And we all know that sometimes the people you expected to be there for you are not the ones who are the most key to you. Sometimes they are, which is fantastic. But there's always some unexpected people who step in to help.
And we have the Road of Trials, and you can fill in the blanks with what your Road of Trials looked like. For each one of us, that's different. But you're going to be able to fill into those blanks what it looked like for you.
And again, you can see this is the role of the helper, which results in a supreme ordeal, and defeating of the enemy, and some sort of death and rebirth.
Well, how much more perfect is that imagery of death and rebirth to a room full of bone marrow transplant survivors, who have literally faced down death?
14:07 You do not go through transplant and come out the same on the other end: And the important thing to know about the Hero's Journey is that it is transformational. You do not go through this and come out the same on the other end. Whether you feel like ... If your stance is "Cancer's not going to define me.", but you are changed. You are profoundly changed in many ways by the experience that you've gone through.
And then as we're sort of starting to return to some sort of normalcy, we're always trying to get back to normalcy, there will be a stepping up to the final challenge, and then a return.
But you can see you're crossing another threshold. It's not as easy as people want to ... People expect us to return to normal quite easily I think. Does everybody agree with that? People in your life are wondering why you're not just stepping back into your old life: "Just get on with it. Move along. You're done with transplant, why are you still talking about that? Why is that still an issue for you?" We're moving back toward whatever the ordinary world is. But the ordinary world may be the same, but it's not the same for us because we're transformed.
So, we talk about new normal, and I know a lot of us resist the term "new normal". I personally am not a fan; but there's not a good terminology that really captures what it is to kind of return to your life and what that looks like.
15:38 We all need a reason to fight on: Viktor Frankl says through our search for meaning and purpose in life we endure hardship and suffering: So, Viktor Frankl, he has an amazing story. He was an Austrian neurologist and psychiatrist, as well as a Holocaust survivor. And after surviving Nazi concentration camps, he developed a theory that it is through our search for meaning and purpose in life that we endure hardship and suffering.
So, we all have a reason to fight. You had a reason to fight. And if you don't, then you find one. Some of us fight for those we love. It's okay to fight just for yourself, just for your own life, for that which is most precious that is given to you. Your life.
16:21 Viktor Frankl also said, "When we're no longer able to change a situation, we're challenged to change ourselves." And that's what we were talking about with the Hero's Journey and how transformational it is, because we couldn't control the situation. We've all been through a lot of situations where you felt out of control, which is really uncomfortable for most of us. It's a fundamental change in our attitude toward life. "It doesn't matter," he says, "What we expected from life, but rather what life expects from us."
So, that's what it means to be the hero of your own story. It's calling forward that strongest part of yourself. And there are times that life gives us no choice, and we rise to the challenge.
17:13 What is courage: "Courage isn't having the strength to go on. It's going on when you haven't got the strength." I think that's an amazing quote.
So, for just a moment, I want you to just join with me, and I want you to think of a moment when you were not sure that you could go on. It doesn't take us very long to get there. Or at least, a time when you weren't sure whether or not you could. Think about that time. Now think deeper. Think about the moment where you knew that you were going to go on. Was it a decision, or simply a realization?
Where did that conviction come from? Was it a Higher Power? Was it a close friend or a helper? A loved one? Was it your inner voice? It's important that we kind of take a look and step back to see what that is for us, and that's how we learn what inspires us.
18:18 Finding your inner power and strength: So, this is one of my patients. This is Riley. And I love this picture of Riley because she's showing us her power, and I wanted to use her to talk about how we find our own power.
One of the ways is by calling on a memory. It could be a memory of something that's happened to you. When I work with kids, even if they're little, almost all of them can remember the first day of school, the first day of kindergarten. You're terrified going into kindergarten, but now we look back on it and like, "Well, that was no big deal." But at the time, it felt pretty overwhelming, and like, "How am I going to get through this?" And yet you did. And every obstacle that we look back at our lives we thought, there was a moment when we thought, "I can't do this." And yet you did. So, sometimes it's calling on a memory of a time that you've overcome, or someone else's story.
It could be a stance. And her stance right there is so powerful, and it speaks to her. But you're going to have your own. You've got your own stance, and I challenge you to find it for yourself, what that looks like. Finding your power so that you can call on it when you need it.
It could be a word or a phrase. One of my patients wrote the word "fierce" and put it on the wall in her hospital room. And that reminded her who she was. Or the phrase could be "Never give up.", or whatever it is for you. But write it down. Keep it for yourself so that when you're going through dark times and you can't find your way forward, that you have something that you can call on.
It could be a piece of clothing. You saw with Paul that he used his cape. We've had kids who came into the hospital wearing their cowboy boots, because that was fierce for them. That was their warrior.
For me, when I was going through transplant, I had a patient who, at 17, was diagnosed with sarcoma. And by the time they diagnosed it, it was Stage IV. And he was a tough nut to crack. He didn't want to meet with a counselor. And so, I finally just started going in and sitting in his room while he was watching Maury Povich. And I was like, "Really? Okay."
So, he didn't want to talk about his feelings or what was going on. And so, I would just sit there and be like, "Who's that?"
And he's like, "Well, that's the baby daddy."
"Okay. All right. Who's that?"
"Well, that's the baby's mama's girlfriend's aunt."
So, when Maury was over, I left. And day after day, I came back, and we watched Maury together, to a point where he came in and he said to me, "You're not watching Maury with anybody else but me?" And I was like, "God, no! No. Trust me. No."
When it was time for me to go to transplant, Justin, every time he was in the hospital, he had a blanket on his bed. And every time I walked in the room, I would say, "That is the most beautiful blanket I have ever seen." And ... Oh, I forgot a part of the story. With Justin, no matter what he was going through, and he went through some really, really tough times where he lost the use of his arms and his legs. And as an 18-year -old man, that was demoralizing for him. It was emasculating. And yet, every time I would walk in the room and say, "Justin, how you doing?" And he would say, "I'm living the dream."
And Justin inspired me, and when I went to go for transplant, he gave me his blanket.
And that blanket stayed on my bed in transplant every day that I was in there, and I drew strength from him. So, that was important to me.
It could be a look or a facial expression. We talk about game face. So, find your game face.
Music. A song. I don't know how many of you are familiar with Fight Song. If you've listened closely, there's a line in Fight Song that says, "I might only have one match, but I can make an explosion." What does that mean to transplant survivors? My god! You might only have one match, but you created an explosion. You're still here. You're still rocking your life. You're still rocking the world, and you're still making a difference with one match.
23:05 Find your most powerful self: So, you've come with me this far, so I'm going to invite you for just a moment ... I want you to think about your most powerful self. And so, I'm going to ask you to close your eyes, and that may not work for everybody. But if you do, close your eyes and focus in on your body.
Do a mental scan, and think about where you hold your power in your body. It may be in your arms, or your legs. It could be your chest. It could be any part of your body. And you may feel like a power humming or vibrating, buzzing, kind of trying to get your attention.
So, that part of you is waiting to give you a message. If you're ready to receive it, you can do so. Listen carefully and hold onto that message in whatever way makes sense to you. If you're not ready, he or she will be waiting for when you are. And that's an exercise that you can do anytime that you're looking to find your own power, when you're feeling powerless, when you're feeling out of control, and when you're feeling like hope is nowhere to be found. That's when we dig deeper, and that's when we go bigger and we go bolder, or we go home.
24:44 One more breath: I'm going to tell you just one story, one of my transplant stories. There was a moment in transplant where I was so sick, and I sort of felt like I could just close my eyes and slip away. And I didn't know whether to pray for the strength to keep going, or the courage to let go.
And my friend was there, and I said, "I can't do this."
And she said, "Well, just hang on, because they're saying that in three weeks you're going to feel better."
And I was like, "Three weeks? What? That might as well be a lifetime."
She goes, "Okay. Okay. A week. Just do a week."
"What? No. You're not listening to me."
And she said, "How about a day?"
And she said, "Five minutes. Just five minutes."
And I said, "You're not getting it."
And she said, "Then just do one more breath."
And I thought, "I can do that. I can do one more breath." And there were times in my transplant journey where I had to just do one more breath, and there are times now that I can only do one more breath. And sometimes, that's all we're capable of doing, is one more breath.
26:08 Which brings me to probably my favorite hero quote: "A hero is no braver than an ordinary person, but is brave just five minutes longer." Sometimes that five minutes is all you need. That five minutes is enough to get you across the threshold. That five minutes will make all the difference. And I want to thank you for giving your five minutes to yourselves, to your loved ones, to your life, and being here today. And thank you for this opportunity to speak with you.
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