The Living Story: The Transformative Power of Sharing and Listening to Transplant Stories With Care, Communion and Courage

The Living Story: The Transformative Power of Sharing and Listening to Transplant Stories with Care, Communion and Courage.

Saturday, April 30, 2022

Presenter: Heather Harpham MA, MFA

Presentation is 28 minutes long with 17 minutes of Q & A.

Summary: Storytelling is a skill that we all possess that can help us make sense of difficult life experiences, like transplant. Listening to others' stories - written, spoken or communicated through dance or art - is the companion gift for storytelling. 

Highlights:

• Transplant can bring a feeling of senseless suffering, but story is a medicine that heals.
• Storytelling is an entirely democratic, universal power. It belongs to everyone. It's a skill we've all got at our fingertips.
• Asking for people’s stories and actively listening to them gives the storyteller the chance to heal and gives the listener insight into another's journey.

Key Points:

(07:27): We tell stories, in part, to bear the unbearable, and we tell them because we need to tell them.

(07:52): Transplant, whatever else it may be, is always also a story, a cliff hanger, a nail-biter. The ultimate tale of hoped for transfiguration.

(10:40): I came to be a part of this community through my child, born a girl with a life-threatening blood disease, who is now a healthy, strong young man, Emmett.

(17:47): Anyone who's lived through medical adversity has heard this phrase from well-meaning friends or acquaintances, 'I can't imagine what you're going through'.

(18:41): The performance piece Happiness sought to share the most personal and painful moments of witnessing a child go through transplant.

(19:47): Medical life, even at its scariest can often be absurd, ludicrous, slapstick even.

(22:20): In reality, not everyone will want to hear our stories, but some will, and they'll listen with attention.

(22:53): Listening is the companion gift to telling stories, real deep listening.

(24:31): Stories in the form of music, or images, or language, or even movement help us remember who we are. They encode our values, reflect our beliefs.

Transcript of Presentation:

(00:01): [Susan Stewart] Introduction. I'd now like to introduce to you with pleasure, our guest speaker for today, our keynote speaker, Heather Harpham. I first met Heather after reading a wonderful book she wrote in 2005 called Happiness: The Crooked Little Road to Semi-Ever After. This book chronicled her child's successful bone marrow transplant in 2005 and was actually awarded the 2018 Reese Witherspoon Book Club Selection. She's currently having it developed into a film, and if you haven't read the book, I highly recommend it.

 (00:40): Heather's a great writer. It's a really good read and it will really hit home. Heather is a writer, a teacher and a theater artist. Her work has appeared in the Guardian, Slate, Parents, Moore, Water-Stone Review and Red Magazine in the UK. Her writing also includes six solo plays which have turned nationally and internationally. Mrs. Harpham currently teaches at Sarah Lawrence College and lives outside New York City with her family. She's led several online and in-person creative writing workshops for BMT InfoNet, which have been extremely popular and I'm hoping we can persuade her to do another one or two later this year for us.

(01:25): Heather is a wonderful storyteller and she firmly believes that each of us have a very important story to tell about our own transplant experience. She also believes that it's important that we listen to other stories, and that stories can help us navigate difficult times like a transplant. She's prepared a presentation for us today called The Living Story: The Transformative Power of Sharing and Listening to Transplant Stories with Care, Communion and Courage. We'll share her presentation with you now and if you have any questions for Heather, please chat them into the question box and she'll answer them afterwards. Thank you.

(02:14): Heather Harpham] Hi, hello. I'm Heather Harpham and I'm honored to be here with you today. Thank you to Sue Stewart especially, and all of the staff of BMT InfoNet for the invitation to talk with this community whom I cherish. I wish we were in the same room together, in the more traditional synchronized heartbeat, swimming in the same molecules, shoulder to shoulder sense, but I'm very grateful that we can gather collectively, virtually.

(02:45): I want to tell you a story. Listen, I'm going to tell you a story. That's a line most of us associate with childhood coziness, winter nights, long drives. Story opens a portal for children into a realm they innately sense is there, a realm we can intuit, but never prove, of unseen powers, of magical possibilities.

(03:14): As we grow older, we often forsake the magic in our stories for trauma. The number of TV and movies depicting terror of one kind or another, if countable, feels incalculable. We often lose contact with that element in story, which is mysterious, inexplicable, wondrous, which is too bad, because the world is heartbreaking. It can, it will break our hearts. At the same time, we live in a state of grace, and story has the depth, the breadth, the flexibility to contain both heartbreak and grace.

(04:04): If I sound like a propaganda machine for story, let me say upfront that I am a storyteller by trade. I tell stories on the stage, in the form of solo performance pieces and on the page in the form of essays and memoir. I also teach storytelling to writers, so for better or for worse, I have built my life around telling stories. I am stories', if you will, fan girl.

(04:40):But one of the things I love best about stories is that they are no one's special territory. Storytelling is an entirely democratic, universal power. It belongs to everyone. It's a skill we've all got at our fingertips. We tell stories big and small, constantly, consciously, unconsciously and we move one another, change one another, shape one another with the stories we tell.

(05:15): One small example. Recently I was staying on a farm of a friend of mine. I asked my friend if I could pick anything up for him in town, because he lives far out in the countryside of Vermont, very unostentatiously, on an enormous farm that he bought with money he inherited. Which is a story unto itself, for another time.

(05:43): I was staying on the farm to clear my mind, collect my thoughts to think about this talk. But also I needed to get my haircut, so I was going into town. "Can I get you anything," I asked. "What do you need from town?" My friend said, "Oh, you could pick up some medicine at the pharmacy at the hotel." This did not make sense to me, the pharmacy at the hotel, but I held onto my questions. My friend went on, "I have a friend with MS, I visit her on Fridays. Her body is totally frozen now and she can't go anywhere, so I bring her what she needs like meds."

 (06:28): He continued. "I used to take her swimming when she could still get out. I would take her to the YMCA across the border in New Hampshire, and she would get into the water as this paralyzed laden body and then open up like a sea anemone." My friend has these delicate, beautiful, expressive hands, and he spread them, he moved them. "In the water," he said, "She just opened." A story can be just that. A woman after a week of being frozen in her own muscles, opening weightless as a sea anemone.

(07:27): We tell stories, in part, to bear the unbearable, and we tell them because we need to tell them. The act of storytelling is as necessary as air. The writer Margaret Atwood says, "Storytelling is built into the human plan."

(07:52): Let me pause to address what I think you're wondering. Which is, why am I talking about story to this particular group? Because everyone who can hear my voice right now, everyone watching this, has been touched in one way or another by the transformation that is transplant. Transplant, whatever else it may be, is always also a story, a cliff hanger, a nail-biter. The ultimate tale of hoped for transfiguration, even if you will, resurrection, a comeback story. Though transplant does not, we live with this truth, always have a happy ending, often, even mostly it does.

(08:48): How we talk about what has happened to us, how we understand it and frame it, how we record it and pass it mind to mind, heart to heart, to our orbit of people and beyond the bigger orbit, this matters. It matters most of all, perhaps to us, to the storytellers, the story makers.

(09:19): As a writing teacher, I often ask my students to write about the deepest thing they know, so I tried to locate the deepest thing I know about transplant to share with you. I tried to locate what I know about life after transplant, about loving someone, nurturing someone through a transplant, and also about those unanswerable questions we're exposed to, battered by inside transplant. The most excruciating of which was, for many of us, why? Why do innocents suffer? At the end of suffering, is there any sense to be found? Because in the midst of suffering, it feels nothing if not senseless.

(10:22): What I finally arrived at, at least as one version of the deepest thing I know is this: story is medicine, story heals.

(10:40): I came to be a part of this community through my child, born a girl with a life-threatening blood disease, who is now a healthy, strong young man, Emmett. Emmett's gender transformation is yet another story for another time, but his bone marrow story is one I've shared often and in myriad forms. I wrote a solo piece about it, I wrote a memoir about it, both of these titled semi-ironically, Happiness. I'm now working hard to translate this story one final time into a screenplay. I am not suggesting this path to anyone else, this constant cannibalizing of your own history for drama. If anything, I suggest a new path to myself, but I do want to share this.

(11:34): One thing, perhaps even the main thing which pulled Emmett through transplant was story. He relied on the ability to go somewhere else, be in another time, another body via the portal of his imagination. During his inpatient time in the hospital, the animated Disney film Spirit, The Stallion of Cimarron was among his favorites. For those of you unfamiliar with Spirit, it follows, well, a spirited young wild mustang as he comes of age, and crucially escapes entrapment. There's a lot of running across rugged Western landscapes. At one point in the movie, which Emmett watched almost every day for upwards of 100 days, Spirit leads his herd over the crest of a hill as the music swells. At the exact moment that the herd reaches the horizon line, manes flying, hooves flashing, Emmett would gasp with surprise and pleasure. He would audibly gasp, virtually every time. He was that deeply inside the story's spell, that much of a believer.

(13:02): Part of the reason he believed so fully, was because he needed to. The alternative was to be where he was on the unit, and that was the last place he wanted to be. Walt Disney once said, "That's what we storytellers do, we restore order." Or in Emmett's case freedom with imagination.

(13:36): It's no surprise that this moment enchanted Emmett, it's hard to think of a stronger antidote for the confinement and the malaise of hospital life than a wild animal in the fullness of its power. We were so grateful for Spirit and for all the stories that sustained Emmett through transplant. His love of story by the way, has continued to grow. When he learned to read, he would sometimes look up in a daze from his book. When questioned, he told his dad and I that when he took for a break from reading, he was often surprised to see the regular world around him, surprised not to be at the long dining room hall table of Hogwarts, or on a boat bobbing in the ocean beside a tiger.

(14:36): Emmett is now in college, passionate about, among other things, screenwriting. Perhaps someday he will create an alternate universe where another child takes refuge. For certain, he was carried through transplant largely by people he never met, but in whose imaginations he found safe harbor.

(15:10): When people come through harm out of refugee camps, out of war, out of natural disasters, we ask for their stories, sometimes in a voyeuristic or commercialized way, but that's not what I'm talking about. Relief workers, aid workers, know the power of asking for story. It can't always be shared right away or shared in full. But asking for story, asking to know is a tremendous gift.

(15:48): The same friend who owns the farm in Vermont, spent years funding and advocating for the revival of performing arts traditions in Cambodia. In the wake of the Pol Pot genocide, in the refugee camps, relief workers saw the value of art. As soon as the survivors from Cambodia had their safety restored and assured, they turned to art, including storytelling. Because my friends said, the arts allowed them to envision life without harm again, to activate their imaginations beyond what they'd lived through into the future. They literally had to imagine their way free of those disasters.

(16:49): Similarly, my husband reminded me recently that during World War II, many soldiers carried with them slim volumes of poetry into the trenches to remind them of the world they hoped to return to.

(17:09): Personally, I had a very different relationship to story after Emmett's transplant. I often felt full of stories that I feared no one wanted to hear, or stories I was afraid to impose on other people. I remember a sense of being isolated, almost as if on an island. The writer Maya Angelou has described this as "The agony of bearing and untold story inside you."

(17:47): Anyone who's lived through medical adversity has heard this phrase from well-meaning friends or acquaintances, 'I can't imagine what you're going through'. Which I often translated privately into,' I don't want to imagine what you're going through', which is understandable. Most of it was not that fun to live through, why ask others to imagine it? Sometimes when people would say, 'I can't imagine', I had to stop myself from saying, "Well, try. Put your back into it. Put your mind. Put your whole body into the act of imagining. Try to conceive of this experience as if it were your own."

(18:41): Making the solo performance piece Happiness, was my attempt to meet people halfway. To try to open a window onto the world, which we'd lived through, but now felt almost as hazy as a dream.

(19:03): When I first began to shape these stories publicly in the play, I asked a mentor of mine, the playwright, Deb Margolin, is this fair? Deb knew precisely what I meant. Was it fair to ask an audience to listen to and even inhabit, however briefly, the most painful moments that we lived during transplant, to take them through that time? "Yes," she said. "It's fair if you do it with care. People want to know."

(19:47): One way I tried to take care was to leaven the material with humor, because as much as we endure transplant, it can sometimes be funny. Medical life, even at its scariest can often be absurd, ludicrous, slapstick even. I'd like to share with you one moment from the performance of Happiness, in which the narrator, my character, physicalizes the difference between what a doctor is actually saying to her about her very ill baby and the way she hears it. Here's the excerpt.

(20:31): [Actress] "Before you deliver bad news to me in the middle of the happiest moment of my life thus far, let's just review, okay. For instance, do you ever have the feeling that you might not work in this hospital? I mean, you know that nagging feeling like you don't fit in. You don't fit in, you're not like everybody else. Well maybe in your case, it just happens to be true, and you don't really work here and I don't want to personalize this, but your hair is really '70s. Isn't it possible, just bear with me for a second? That through no fault of your own, you've hit the space time continuum at an awkward angle and you're in the totally wrong era."

(21:16): The more I think about the 'I can't imagine what you've been through' people, the more I think I've got them wrong. Probably they're trying to say your pain is so immense, your hardship so unique, that I give it deference. Yet I think most of us do not want our pain deferred to or made special. We simply want to share it. We want to be able to tell stories and have them heard, listened to. We want the heartbreak and the grace to be received, because more than anything, stories well told, fully received so empathy, understanding connectivity, they create a bond. They enable us to stand with shoulder to shoulder, to occupy someone else's island. Listening is another way of saying, you're not alone, I'm here.

(22:20): In reality, not everyone will want to hear our stories, but some will, and they'll listen with attention. We've all had this experience, so keen it's like prayer. We won't always pause to ask one another questions or acknowledge one another's stories, but sometimes we will. Sometimes we'll ask and sometimes we'll listen and sometimes we'll tell and be heard.

(22:53): Listening is the companion gift to telling stories, real deep listening. One of the greatest gifts we can give one another is curiosity. Curiosity, coupled with attention. The wish to know, together with the time to hear. The true desire to hear, how was it for you? How did you get through it? What did it teach you? Are you different now after that, than you were before? What would you offer someone else as advice if they were at the beginning of the journey you just came out of? Who got you through it? Who?

(23:42): Over the past few months in working with BMT InfoNet, I've had the pleasure of interviewing transplant survivors and their families, of recording their stories as they tell them. Much of what they have to share is a testament to the force of resilience. Perhaps one of the most moving things I heard came from Dominique Martin, whom when asked what helped him through transplant, talked about the music he listened to.

(24:12): "Listening to different artists tell their stories and finding artists who are honest about what they're going through, helped me reach myself and get in tune with who I am.," Such a poetic phrasing, Dominique's.

(24:31): Stories in the form of music, or images, or language, or even movement help us remember who we are. They encode our values, reflect our beliefs. They are the first and most lasting piece of culture of collective memory. They point us not just to the past, but to the future, in that they reflect what we have chosen to remember, to enshrine, to carry forward.

(25:06): In closing, I invite you, I invite us to tell stories. True, gripping, terrifying, short, long, funny, unexpected, swerve off the road, swerve back on stories about what we've been through, what it taught us. Ask yourselves, in the wake of the transplant experience, what do you urgently need to say to the world? Or just to the three or four people whom you love the most, about what you've been through? What do you hope to preserve, to pass, to transmit? These might be heartbreaking moments, or comic, transcendent, banal moments. In your hands, the material of transplant is malleable, alive. You can form it in the way you wish to form it.

(26:10): When you tell the stories of your time inside medical life as a patient or a parent, a caregiver, a healer, I hope you will look for those shiny forgotten pieces. The moments that reflect a flash of magic or a leap of imagination. The moment you saw yourself or someone you love anew, remade, in a different light. Most of all, I hope you will assume the power to shape the events you lived, however painful they remain. Into something that to you makes sense, because we are finally sense makers. We feel ourselves as vulnerable, fragile, breakable, at the whim, the whimsy of a world we will never fully understand. At the same time, we're here. Resilient and sentient, sharing and listening and that in itself is an astonishing story.

(27:27): I hope you'll tell stories and take the time to listen to the stories of others and I thank you so much for the honor of talking about story with you here today. Thank you.

Question and Answer Session

(27:51): [Susan Stewart] Thank you so much, Heather for a wonderful and inspiring presentation. I know we took away a lot from that and love to hear about your experience. We have a few questions that have been submitted. One of the people has asked, do you think there's value in telling or writing a story without an audience? In other words, just writing a story for yourself, Heather?

(28:28): [Heather Harpham] I absolutely do. First of all, since this is my first chance in getting to greet everybody live in this moment, I'll tell you that it's a pleasure to be with you in virtual community today. I'm coming to you all the way from Iceland in this moment. I know we're all spread out all over the world, so this is where my little dot is.

(28:53): Absolutely, I believe that there is tremendous value. I mean, you are your first audience. Each of us is our own first audience. The act of shaping story, of making meaning out of the miasma of experience and especially out of painful experience is tremendously valuable, and I think it focuses our attention on those parts of what we've lived through that we most want to remember. It doesn't have to be shared with a wider audience through writing, it doesn't have to be shared even with your best friend over tea.

(29:37): It can be shared within the sanctity of your own mind as you record in a journal, or in a blog, or in something that's totally private. Those moments that are writing with you and you can write them down and, in that way, helped to understand the experience and sort of wade through it. I think it's also valuable, even if you're telling something to yourself, alone, for the future you, who will look back and see what you recorded and remember what you've lived through.

(30:22): [Susan Stewart] Thank you. We had a comment from one of the listeners. Maybe you'd like to comment on it. She said, "I think that people say, 'I can't imagine.' Not because they don't want to hear your story, but because they know you are hurting and there's a lot they are not necessarily going to be able to understand and to let you know, they are there for you. Sometimes only when you go through something, can you really understand? You can hear and empathize, but you can't know at the same level as the person experiencing it." You want to comment on that? [

(30:56): [Heather Harpham] Of course, absolutely. I couldn't agree with this person more. You can't know until you go through, but I will say that there is something very universal about pain, loss, trauma, which is a word I think might be kind of over used and under-impactful at this point. But those things that are incredibly challenging that we go through, or grief or real pain. They take extremely different forms. Someone might have lost a sibling, someone else might have had a perilous medical experience, someone else might be dealing with a parent who's deeply compromised. But I think that the universality of challenge and being called to resilience is something we can connect across circumstance.

(31:51): The circumstance itself is not so crucial as the emotional undercurrents that we live in, in all these different experiences. I'm suspecting, or I'm hoping that this person wrote this comment between the moment I first said that my reaction to the phrase, I can't imagine. And when I actually came back to it in the talk and said, "I get it. I know that people are trying to say, I realize how extraordinary the circumstances you lived through were." I think people are by and large in good faith with one another. We want to understand each other's experience, and absolutely if you haven't lived a very complex medical journey, you won't know all the ins and outs. But none of us get through life without experiencing peril, fear, loss. In this way, we can understand each other, hold each other up.

(32:58): [Susan Stewart] Someone else wants to know, how do you handle when someone tells you you're an inspiration? Do you take that as a compliment? Do you not like that? How do you feel about that?

(33:13): [Heather Harpham] It's an interesting question. I mean, I think first of all, I would take it as a compliment. Obviously, the person is trying to express that they, they perceive something in the way you're handling the experience or moving through the experience, that they find inspirational, or that they want to emulate. I appreciate that. Of course I would graciously receive the compliment, I hope. I would also probably try to turn it around and find out how they're going through an experience of their own, because there is something about that, "You're an inspiration," that's slightly distancing, right? You're on this other level, moving through this in this way that seems impossible to me. We're all muddling through the biggest challenges of life as best we can, so I'm grateful or honored when somebody says that and at the same time, I want to learn from them.

(34:16): [Susan Stewart] We have a question about the transplant experience when you were going through it. Did you journal, is that how you remembered all of these incidents?

(34:28): [Heather Harpham] There's a combination of ways that I remembered. Since you're talking about how I wrote the book, when you say, how did you remember all these incidents? I do want to go back and say that the book, Happiness: The Memoir I wrote, was published in 2017 so it's a fairly recent book. The way that I kept record of that time was, in multiple sorts of streams. One, we kept the CaringBridge page as many transplant families will, and I wrote on that exclusively, my husband, Brian, did not. Brian kept notes. We're two writers living this experience, and one of the ways we knew to keep ourselves sane was to write. I wrote on the CaringBridge page, Brian kept notes, and I also kept some private notes and journals. Those were the three ways we were writing and recording the experience as we lived it.

(35:29): [Susan Stewart] Another person wants to know; how did your child feel about you sharing his transplant story with the world?

(35:40): [Heather Harpham] To be honest, I think he had some ambivalence, and I don't think it's a settled question. He felt one way when the book was published, and I think he feels slightly differently. Now when the book first came out, which is now five years ago, Emmett was 16. No adolescent really wants their parent to be describing them to the world as a four-year-old. I mean, every adolescent wants to be crafting their own identity, so to have your parent make an indelible record, is maybe not just what you want at 16.

(36:26): On the other hand, he certainly didn't express any objections to the book and he absolutely seemed to take some pride or happiness in seeing his parent create a project to fruition, there was a sweetness in that.

(36:50): Emmett doesn't relate powerfully to the Gracie who experienced transplant, and that's not just to do with his gender transition. But because Emmett really doesn't remember, and I know there was never another question that asked this, much if anything, his memory of transplant is extremely limited. I remember him saying to me, and this will be one of those strange senses that emerges out of gender transition. I remember him saying to me not long after the book was published, I don't relate to that little girl. I don't really feel like I'm that little girl. Of course they are one person, but those aren't the memories that Emmett carries around with him, so he came out of transplant at four and a half years old and I think it feels like a very distant point on the distant horizon for him. It's in his rear-view mirror.

(38:01): Whereas for Emmett's dad and I, for Brian and I, it will ever be transplant is never truly totally in the past. Because you sort of freeze in a sense, those moments in which you're most frightened. And worrying about your child's life is one of the... I don't know, a more terrifying scenario, so it's very different for us than it is for Emmett. Ultimately now five years later, I think he sort of circled around again, to feeling happy that some record of his experiences exists and that he might turn to them when he's ready to delve in, whether he remembers it or not.

(38:50): [Susan Stewart] We have another question which I think probably is reflective of what a lot of people think. You and your husband are both writers, and so it would be a natural thing for you to write your story, to tell your story. How does somebody who's not a professional writer, has never really been into writing, how do you start writing your own story?

(39:15): [Heather Harpham] I think that can happen so organically and easily and it's really as simple as keeping paper and pen handy. Some of us are going to be writing into our phones instead, but myself I still prefer to be scratching notes on paper and I keep a notebook with me all the time, because you never know what jostles a memory, or when you go through something in the moment, like a really tough day at clinic and you want to just get it out. Writing externalizing things that have happened to us by articulating them into language helps. I don't know why I can't explain, I'm not a neurobiologist, I can't tell you exactly why. But I know that it is therapeutic to take what you've experienced and pin it down on the page a little bit. You sort of tamed it a little bit and contained it.

(40:17): I think that can happen in your daily life, in the quiet beats between getting dressed and running out of the house. Whenever you want to capture something, you can. That's different from I'm now going to shape all this writing into a manuscript, because I want to publish a book. I don't think that's the path everybody wants. If you wanted to do that, I'd recommend starting with a writing workshop, there are many different pathways to writing a book. But I don't think that for most of us, we can get a tremendous amount of writing also by just if you want to set aside literally five minutes at the beginning of the day or the end of the day, to sit with your notebook and record what you can, it can be very valuable.

(41:17): [Susan Stewart] Wonderful. We have another question and I think a lot of people relate to this one as well. How do you deal with someone who, without listening to what you're saying and who doesn't ask you, any questions jumps in and tells you what to do? Have you had that experience and how did you deal with it?

(41:40): [Heather Harpham] I'm positive, I've had that experience. I'm happy to say I don't really remember it. We're now more than 15 years out from Emmett's transplant. I mean, it depends on who's doing it. If it's your sister, you'd probably give her a shove and say, "Back off." Or your best friend. If it's a well-meaning stranger... I mean, you said it was somebody who doesn't know. If it's a well-meaning stranger, I'd probably nod and say, "Ah-huh." And look for the exit, go get a... Time to wander on to get a snack, or I'd just gently move away. I wouldn't engage somebody like that, I would assume that there are intentions are essentially decent, but they don't have the first foggy idea what they're talking about, and I'd redirect my own attention.

(42:40): [Susan Stewart] All right and I think we're coming up on the hour, so I'll ask this final question. She says, "In retrospect as a caregiver, the feelings of the experience my story has changed as more time goes by and my loved one's transplant is behind us, and as life becomes more normal. Can you comment on the intensity of feelings changing over time in reshaping your story?"

(43:13): [Heather Harpham] Absolutely, and I think it's a wonderful thing. It's certainly a trope, but it's also true, as so many tropes are, time heals. Essentially it does heal. I don't know if it heals every wound, and I don't know if it heals every wound completely, but it does heal. Yes, the intensity drains and normal life resumes and that's beautiful, that's a gift, right? That's what we're all aiming for. It's not always a clear straight path there and I certainly remember... I remember very vividly our first months back in 'normal life' when we'd returned from Durham, North Carolina, where we went for the transplant, to the New York metropolitan area where we were living. I remember our child going back to nursery school. To me, returning to 'normal life' felt like a dream, felt unreal. It seemed to me that either transplant had to have been the dream or this return to normal life was the dream, but it was very hard to hold both realities. Because what we'd experienced was so extreme.

(44:38): Yet over time, that strangeness faded and we All four of us, Brian and I, and both kids folded back into ordinary life, ordinary times with tremendous gratitude and you don't forget. You know what you've been through, but you are able to give yourself to the rest of the things you love and care about in life. Work, creative life, your kids, your friends, and it's a joy to get back.

(45:16): [Susan Stewart] Closing. Well on that note, I think we're going to need to end the session. There was one question wanting to know what the name of your book was, and again it is Happiness: The Crooked Little Road to Semi-Ever After. A great read, I encourage you to give it a try. On behalf of BMT InfoNet and our partners, I want to thank you Heather for a thought-provoking presentation. I'd also like to thank the audience for your excellent questions. I would also like to thank Kadmon, a Sanofi company, for sponsoring the keynote address and bringing Heather to us.