Life and Death and Life. For Leigh.
This blog entry is excerpted from an email dialogue between me and my friend Jason about death, a topic that I think is exceptionally important to bring out of the shadows and into the light, especially here on Planet Cancer.
Hey Heidi, I got home from yoga tonight and opened my email to find that a friend, somebody I wasn't particularly close with, but who I spent a week with at Camp Mak-A-Dream, passed away last week. Her name was Holly Young and a year ago when we met she was in treatment, but one of the brightest, spunkiest, hardest fighters there ever was. I am just sitting here crying and I'm so angry...it's not that I was close with this girl, but she wanted to live and was a positive-thinking fighter and it just feels so wrong…
How do you deal with this knowing so many young adults with cancer? It just makes me feel so mortal. It's like I am doing everything I possibly can, have access to the best possible care and support, but it just kills me because so did Holly.
Jason
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Hi, Jason--
Wow. You know how to pull out the tough ones, don't you?! And your timing is uncanny because I'm working through a loss of my own right now that has really hit me hard: my wonderful friend Leigh died a few weeks ago. She was in her 40s; a singer and actress with a wickedly twisted sense of humor and a way of making every single person who came into her sphere feel special.
So, let's see if I can bring my half-formed thoughts into something that makes sense, for both of us.
I met Leigh through her boyfriend Scott Barber, who was our artist-in-residence at some of our earlier weekend retreats. Scott had recurrent lymphoma and died of complications from a transplant. Leigh was diagnosed with breast cancer a year after Scott died. She went through treatment, had a few months of "all clear," then it came roaring back. She fought for the next year and then died on January 5.
I was with her at her home when she died, along with her family, her dog Happy, and a gazillion friends. It's so weird in those circumstances, when people know what I do. They always say, "You must see this all the time," as though I have some sort of secret insight or password. I never know how to respond.
Yes, I know many people who have died. It is, for sure, an occupational hazard.
Yes, it is painful and raw. Every single time. Sometimes more than others.
No, I never get used to it.
I am drawn to the Buddhist vision of a cycle of life, death and rebirth,
and of seeing the instant of death as a momentous opportunity to move towards enlightenment. I love the vision of us all as interconnected beings, all part of a vast source of energy, or spirit, or love--however you choose to describe it.
If I see it that way, then Leigh is not really gone. She's still a part of me and I am a part of her, as I am also a part of her friends and her family, even the ones I don't know--because we are all one and the same. Her death is not a moment of sadness, grief and loss, but becomes instead an opportunity and cause for happiness as the instant that she became pure energy and love, and freed herself of the pain of her physical being.
That doesn't mean that it doesn't hurt like hell when I realize, every morning on my way to work, that I can't pick up the phone and call her to check in and bounce Top Ten ideas off her. But I am trying to come to terms with the fact that that's just me feeling sorry for myself.
So how do you and I deal with this reality and go on? Maybe the best response I can give is from a conversation that I had with Leigh after Scott died. I don't even remember whether she had been diagnosed yet or not. She was lost and sad and questioning the point of going on, when someone like Scott---strong, positive, a fighter in every sense of the word--could lose the battle.
I remember that my answer came, through tears, without any thought or deliberation. It was something to this effect: "We go on because Scott would have given anything to be able to do so, and that choice was taken from him. We have that choice, so we choose to go on, and we honor him by living and loving and being joyful and appreciating every single second that we have on this planet. Because he can't."
Personally, I can't default to "everything happens for a reason." It feels like a cop-out to me. Nor can I go down the path of "It's what God wants." Unlike many people whose faith is strengthened in these circumstances, this cancer thing has made me abandon the idea of a personal God up there picking and choosing who gets sick and who doesn't; who lives and who dies. I think if I believed that, I would get so angry that it would probably destroy me. I have known way too many amazing, positive people who have died, and I have come to believe that their cancers weren't caused by anything but stinkin' bad luck and a bum roll of the genetic or environmental dice.
But that doesn't mean I think we are at the mercy of a totally random universe. We do hold a certain amount of control in our hands: the ability to research, to find the best treatments, to do everything we can--physically, mentally, spiritually and emotionally-- to maximize the impact of those treatments. But beyond that we have to realize that every single person brings their own individuality to the experience, right down to the cellular level, and that there is so much we DON'T know that it is really impossible to make comparisons. We all do the best we can, and that's all we can do. Period.
Every once in a while, when several deaths occur in succession, as they often do, I feel myself getting emotionally "thin.” When I’m at home, I have to just close the office and go home to play with my kids. When I was at Leigh’s house before she died, I started feeling like this, and I reached out to Dave Marsh, a writer and an incredible mentor of mine who lost his daughter Kristen to sarcoma and is really the whole reason I started Planet Cancer. Here is a portion of his response to me:
"But you carry on—I mean, you, personally, Heidi—for the same reason that I do, and Joanne does, and a lot of others, including the best of the doctors and nurses. At its simplest, we do it because we can and because there are so many more people we have known whose struggle didn’t work out or did for a while and then didn’t, and they need to be honored. ..."
...What I take from them [cancer patients] is much more immeasurable than what I give. They know the value of life, which is a much more interesting thing, to me, than anything at all about death. So, do me a favor, and thank Leigh as you once thanked me, for reminding you of what the intensity is like when you’re in the fight. Leigh has your love, and she gave love to Scott, love of a very high order. She’s a winner, not a loser, because if it just boils down to how long we breathe, then everybody’s a loser because nobody lives forever.”
Dave’s so right—there is a certain intensity of life when you're constantly faced with evidence of your own mortality, and only those who have come up against this same evidence can understand it. I would never have known Leigh or Scott or you if it weren't for being in this cancer world. The relationships form more quickly and go deeper faster, because we don't know how long we have, but we do know what's important. And as painful as it is to lose friends, I cannot imagine not having had them, or you, in my life. I have to back off from time to time, because I can't always live on that knife's edge of life and death, but I always return.
So take time to grieve your loss, and then take a few deep breaths, lift your head and rejoice in the knowledge that this amazing person was AND IS part of your very living being. I never knew Holly, but I bet that's what she would want you to do.
And now that I’ve written all this, I know Leigh is chiding me to do the same thing. Up there, shaking her finger at me and saying, “C’mon, precious one. Get a move on.”
This is Leigh. Isn't she beautiful?! She's probably thinking about her butt, and how she's glad it's not in the picture. She had a thing about her butt. (Photo courtesy of Allison V.Smith)
Hey Heidi, I got home from yoga tonight and opened my email to find that a friend, somebody I wasn't particularly close with, but who I spent a week with at Camp Mak-A-Dream, passed away last week. Her name was Holly Young and a year ago when we met she was in treatment, but one of the brightest, spunkiest, hardest fighters there ever was. I am just sitting here crying and I'm so angry...it's not that I was close with this girl, but she wanted to live and was a positive-thinking fighter and it just feels so wrong…
How do you deal with this knowing so many young adults with cancer? It just makes me feel so mortal. It's like I am doing everything I possibly can, have access to the best possible care and support, but it just kills me because so did Holly.
Jason
-----
Hi, Jason--
Wow. You know how to pull out the tough ones, don't you?! And your timing is uncanny because I'm working through a loss of my own right now that has really hit me hard: my wonderful friend Leigh died a few weeks ago. She was in her 40s; a singer and actress with a wickedly twisted sense of humor and a way of making every single person who came into her sphere feel special.
So, let's see if I can bring my half-formed thoughts into something that makes sense, for both of us.
I met Leigh through her boyfriend Scott Barber, who was our artist-in-residence at some of our earlier weekend retreats. Scott had recurrent lymphoma and died of complications from a transplant. Leigh was diagnosed with breast cancer a year after Scott died. She went through treatment, had a few months of "all clear," then it came roaring back. She fought for the next year and then died on January 5.
I was with her at her home when she died, along with her family, her dog Happy, and a gazillion friends. It's so weird in those circumstances, when people know what I do. They always say, "You must see this all the time," as though I have some sort of secret insight or password. I never know how to respond.
Yes, I know many people who have died. It is, for sure, an occupational hazard.
Yes, it is painful and raw. Every single time. Sometimes more than others.
No, I never get used to it.
I have thought a lot about dying and death ever since I was diagnosed myself. Leigh's brother gave me her copy of one of the books that I found strangely comforting 12 years ago during my own treatment--"The Tibetan Book of Living and Dying"--and I find that it is comforting once again as I reread it and mourn her loss.
I am drawn to the Buddhist vision of a cycle of life, death and rebirth,
and of seeing the instant of death as a momentous opportunity to move towards enlightenment. I love the vision of us all as interconnected beings, all part of a vast source of energy, or spirit, or love--however you choose to describe it.
If I see it that way, then Leigh is not really gone. She's still a part of me and I am a part of her, as I am also a part of her friends and her family, even the ones I don't know--because we are all one and the same. Her death is not a moment of sadness, grief and loss, but becomes instead an opportunity and cause for happiness as the instant that she became pure energy and love, and freed herself of the pain of her physical being.
That doesn't mean that it doesn't hurt like hell when I realize, every morning on my way to work, that I can't pick up the phone and call her to check in and bounce Top Ten ideas off her. But I am trying to come to terms with the fact that that's just me feeling sorry for myself.
So how do you and I deal with this reality and go on? Maybe the best response I can give is from a conversation that I had with Leigh after Scott died. I don't even remember whether she had been diagnosed yet or not. She was lost and sad and questioning the point of going on, when someone like Scott---strong, positive, a fighter in every sense of the word--could lose the battle.
I remember that my answer came, through tears, without any thought or deliberation. It was something to this effect: "We go on because Scott would have given anything to be able to do so, and that choice was taken from him. We have that choice, so we choose to go on, and we honor him by living and loving and being joyful and appreciating every single second that we have on this planet. Because he can't."
Personally, I can't default to "everything happens for a reason." It feels like a cop-out to me. Nor can I go down the path of "It's what God wants." Unlike many people whose faith is strengthened in these circumstances, this cancer thing has made me abandon the idea of a personal God up there picking and choosing who gets sick and who doesn't; who lives and who dies. I think if I believed that, I would get so angry that it would probably destroy me. I have known way too many amazing, positive people who have died, and I have come to believe that their cancers weren't caused by anything but stinkin' bad luck and a bum roll of the genetic or environmental dice.
But that doesn't mean I think we are at the mercy of a totally random universe. We do hold a certain amount of control in our hands: the ability to research, to find the best treatments, to do everything we can--physically, mentally, spiritually and emotionally-- to maximize the impact of those treatments. But beyond that we have to realize that every single person brings their own individuality to the experience, right down to the cellular level, and that there is so much we DON'T know that it is really impossible to make comparisons. We all do the best we can, and that's all we can do. Period.
Every once in a while, when several deaths occur in succession, as they often do, I feel myself getting emotionally "thin.” When I’m at home, I have to just close the office and go home to play with my kids. When I was at Leigh’s house before she died, I started feeling like this, and I reached out to Dave Marsh, a writer and an incredible mentor of mine who lost his daughter Kristen to sarcoma and is really the whole reason I started Planet Cancer. Here is a portion of his response to me:
"But you carry on—I mean, you, personally, Heidi—for the same reason that I do, and Joanne does, and a lot of others, including the best of the doctors and nurses. At its simplest, we do it because we can and because there are so many more people we have known whose struggle didn’t work out or did for a while and then didn’t, and they need to be honored. ..."
...What I take from them [cancer patients] is much more immeasurable than what I give. They know the value of life, which is a much more interesting thing, to me, than anything at all about death. So, do me a favor, and thank Leigh as you once thanked me, for reminding you of what the intensity is like when you’re in the fight. Leigh has your love, and she gave love to Scott, love of a very high order. She’s a winner, not a loser, because if it just boils down to how long we breathe, then everybody’s a loser because nobody lives forever.”
Dave’s so right—there is a certain intensity of life when you're constantly faced with evidence of your own mortality, and only those who have come up against this same evidence can understand it. I would never have known Leigh or Scott or you if it weren't for being in this cancer world. The relationships form more quickly and go deeper faster, because we don't know how long we have, but we do know what's important. And as painful as it is to lose friends, I cannot imagine not having had them, or you, in my life. I have to back off from time to time, because I can't always live on that knife's edge of life and death, but I always return.
So take time to grieve your loss, and then take a few deep breaths, lift your head and rejoice in the knowledge that this amazing person was AND IS part of your very living being. I never knew Holly, but I bet that's what she would want you to do.
And now that I’ve written all this, I know Leigh is chiding me to do the same thing. Up there, shaking her finger at me and saying, “C’mon, precious one. Get a move on.”
This is Leigh. Isn't she beautiful?! She's probably thinking about her butt, and how she's glad it's not in the picture. She had a thing about her butt. (Photo courtesy of Allison V.Smith)
14 Comments
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Comment by runnin donna on February 6, 2008 at 3:25pm - Great post. I sometimes find being part of this family of survivors is very difficult when we lose a member. Sometimes I don't know what it's supposed to mean to me, and even feel guilty. But I do think that they all want me to go on, being me, and then I smile knowing that they are there with me...
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Comment by Abby and Josh on February 6, 2008 at 9:37pm -
Heidi,
I loved your words...each and every one...I hung on to them. But, at the same time...it's this kind of stuff I can barely read right now. I get this panicky feeling in my belly and want to hang on to Josh for dear life. We are trying so hard to stay right in the moment and think about living and life. I am so sorry for the loss of your sweet dear friend, Leigh. And thankful to be reminded what we're living for...the beautiful relationships that touch our lives.
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Comment by SarahW on February 7, 2008 at 7:21pm -
Thanks so much for this post, Heidi. We share many perspectives and it's great for me (and I'm sure others) to hear them put into words by you.
A year ago today, he and I were packing and preparing (i.e. platelet and blood transfusions for Mike) for our trip to Texas and the Inaugural PC Couple's Retreat. What I can think to add from a surviving spouse's perspective are a few lines from what I wrote below Mike's obituary on our website just after he died 11 months ago:
"...I miss him immensely. That's the toughest thing for me right now. It used to be that when we were apart if I missed him, I also would be missing his medical routine since I felt like one was intrinsically bonded with the other. Now, I just miss him. And I miss him deeply. All the time, not just when he crosses my conscious mind, or when I catch myself thinking of him as still alive...
He made me a better person. More easy to laugh, more creative, more loving. I'm thankful to have had over 12 years knowing & loving him, but it wasn't enough. It never would have been enough."
I've never subscribed to the thought of cancer as a "gift" either, but I do have to admit that having it in his body, having it in our lives, and living to the fullest despite it brought us close and cut through a lot of the crap that other people take years to get through.
If given the choice for Mike to never have had cancer, of course we would have chosen that route, but we weren't given the option. As a result, we loved so deeply that now I seem to feel him in every part of my self. Those feelings include missing him painfully but I'd gladly choose both over neither.
With mortality so much in our face, I sometimes begin to live in fear...fear of my own, others, and even a renewed fear of his already-happened death. Luckily, Mike didn't live with "death" on his mind. I try and remember that and pull up reserves of the strength he taught me.
And Mike, similar to Leigh's predicted advice to Heidi, would have told me "Come on, Wenstrand...enough already!" I can hear him now, with a smile in his voice and a loving chuckle.
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Comment by 1knocR on February 7, 2008 at 9:00pm - Heidi, I know the feeling about thinking if their is a God up there picking and choosing. I have a friend that keeps telling me I need to change my ways because God is waiting. Waiting for what? What will he do if I change my ways? What ways do I need to change? I have attended the funerals of 4 friends who passed away of their cancers in the past 3 years and I am the one left standing. What does that mean? That I win? I don't know what to think sometimes but I am here and I want to be well. All I can do is live for the moment or I will go insane thinking about the future.
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Comment by Heidi on February 7, 2008 at 9:19pm - Thanks, 1knocR. I am glad you're here, too. We'll keep reminding each other to stay present, okay?
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Comment by Jennifer on February 7, 2008 at 10:30pm -
Wow...these words are all so touching. When you're here, living it, you don't stop to think about what other's may be going through. The pain of death is immense, but I often tell people that pain isn't always for naught. We have all gone through painful experiences, and it's through that pain that we have learned some of life's greatest lessons. Yes, it would be preferrable to not have gone through that pain, but I know that I feel I am a better person for my experience.
Now, the question is how can we all take our painful experiences and turn them into something positive? How can we turn a negative into something beautiful? I know that I am inspired by everyone's words here, and especially with people like Heidi who are working on making this world a better place. Even if we all just touch one life because of our experiences, even if just one life is bettered by our making a positve out of tragedies, it can give meaning to our lives.
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Comment by 1knocR on February 8, 2008 at 4:21pm
- will do, Heidi!
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Comment by nikki on February 13, 2008 at 7:06am - I lost two fellow male patients who had the same cancer as i did over 5 years ago. we nearly spent a year together in hospital, but they did not make it to the end. It was hard at first to talk about them not making it through, i would just heave in tears, sorrow and guilt. As time has passed, I still am brought to tears when they are in my conversation or thoughts, and I am so very glad that i cannot forget them and what they went through, however, i now cherish this deep saddness that dwells up inside of me as it serves as a remeberence for me at how precious every minute of life is.
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Comment by Amanda on February 16, 2008 at 10:35pm -
Heidi I loved this post. It reminded me a lot of something my aunt told me when I had just lost a very close, intense friend to cancer. I got to see her a few days before she died. I held her hand and watched her struggle to breathe. As I got up to leave, she whispered, "I wanted to see how your life would go."
Any ways, I told my aunt this, and she sent me back this note:
"Yes, loosing a friend is difficult....and if it were not so, what kind of friend would we have been anyway. How wonderful it was for your friend to have you along the journey. Sometimes we stay away from difficult situations because we fear allowing ourselves to feel. When that happens, the person has to walk alone and face 'the now' alone. Both of you were feeling many things, and I dare say your togetherness brought a special type of healing and gratefulness to each of you...and you each were able to say, "Thank you, I had a nice time". ....and the depth of your relationship allowed freedom to soar. We are grateful you each had each other to share the journey."
This really helped me be where I am at. The intenseness of life in this community amazes me. Every once in a while it is too much, but I am here because Chris, Ceri, Jude, Jordan, Carol, DJ, and everyone else were there for me.
I will live my life remembering my friends who came before me. Each moment I will live with their blessing spilling their lives into mine.
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Comment by Heidi on February 18, 2008 at 6:40am
- Amanda, thank you for sharing your aunt's words and the memories of your friends. Beautiful!
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