Breathing
For what seems like months, it feels like I’ve been holding my breath. Not voluntarily, mind you. Totally against my will, I’ve felt an anxiety like nothing I’ve known before. Every action seemed both monumental and inconsequential. I had to be here and there, do this and that, and attend to details. Yet, really, I wanted to run and hide and not come out.
In late 2008, my sister Joli was diagnosed with Stage IV lung cancer. A type of lung cancer that doesn’t come from smoking. It had already spread throughout her body.
Treatment started immediately and—for a while at least—it worked well. The stats gave her around a year, plus or minus (mostly minus, honestly) depending on which stats you looked at. She beat that with the help of all sorts of treatments. Radiation. Chemo. Experimental pills. But, eventually, the treatments stopped being effective. The most horrible thing about watching a cancer like this kill your sister is that you can’t give up hope, yet hope is something that you can’t drum up in large doses. Evidence and facts work against that. But still you hope. And pulled between the two, eventually you can’t even breathe.
You can pretend to breathe, and you do. But you don’t. A bit of oxygen manages to leak into your system somehow. Enough to keep you going.
After being in Dallas the last week of January, watching my sister in the hospital, my even that last little bit of oxygen leaking in stopped. The cancer was eating her blood. She couldn’t maintain platelet counts. She was living because of transfusions. I watched the doctors do a bone marrow aspiration on Joli to determine if the cancer had gotten there.
It was.
They sent her home while I was still in Dallas. With oxygen. Transfusions continued. No further treatment other than pain management, however, was an option. It was just a matter of time. On Febuary 6th, I got the word that they had started morphine. I was driving to LA to go to TED. I sped up. I raced down the 5 to get to LAX and fly to Dallas to see her one last time. I could sneak in one more visit. But, even though I was blowing speed limits out of the water—I’ve never driven so fast for so long—I wasn’t fast enough. While still in the Central Valley of California, I got the call that she had died.
I checked myself into a hotel. And just… I don’t know. Stopped.
The next morning, I had to decide what to do. Fly to Dallas or go to Long Beach. My sister had donated her body to medicine, so there wasn’t going to be a funeral. No cremation. No macabre viewing. I was happy with her choice, but it meant that I had to live with the fact that I wouldn’t see her again, no matter what. The family was scattered, gathering later in the week. So, I just headed to Long Beach. I decided I had to keep living. I had to do the things that made me myself. I had to do that because I know that’s what I’d want her to do if the situation were reversed.
My week at TED was manic/depressive. It sucked to work so hard, yet I found that keeping so busy was great medicine. I cried when people talked about how cancer was affecting their lives. I helped lead a standing ovation for cancer researcher William Li, even though it certainly isn’t the place for a staff member to help instigate such a thing. I was a wet mess behind the camera when June mentioned that a member of staff had lost their sister to cancer from the stage. I had a hard time shooting the rest of that session.
The undeniable blessing of being at TED last week, however, was that I was surrounded by proof that life was meaningful. People doing great things. People looking for hope where there shouldn’t be any. People fighting to figure out how to keep the human race vibrant and rich over the years to come. And I was surrounded by the support of all of my friends on the TED staff. No matter what was going on, how busy they were, there was always a time for a hug and a moment from all of them when it was needed most.
I executed probably my best live stage work ever last week at TED. My mind, however, was never far from Joli. Nor her family. Her children. Her mother. Her husband. I dedicate all of the work I did there to Joli. I know that she would have loved to be there. To see the things I saw.
As soon as the event was over, I was on the first jet I could catch to Dallas—where I am now. Because of the nasty weather this last week across the east and south—along with the NBA all-star game in Dallas—it was almost impossible to get a flight that night, but I did even though it took paying cash for a one-way first class ticket. An extravagance but worth every penny. I made it. I’m here. I didn’t have to wait another day to be here. I was able to meet my family while they were still gathered here.
I miss Joli, I know that her life was a good one. She did lots of good things. She saw a big chunk of the world. She had a lot of fun, even during the times when things were stacked against her. And she has, as part of her legacy, four great children—my nieces and nephews—that will take that spirit forward.
I hate the fact she’s gone. But, in the process of accepting that fact, I’ve started breathing again. And breathing is good. I’ll use that breath to do my own life’s work. To travel. To see things. And, every time I see something gorgeous or amazing in the world—every time I go somewhere new—I’ll probably stop and think, “Wouldn’t Joli have loved to see this!” And yeah, she would have.
39 Comments
Duncan, man I am so sorry to hear that. You, your sister and your family are in my thoughts and prayers.
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I gathered much of this from your tweets over the last few weeks, but you wrote it out very touchingly.
My condolences on the loss of your sister, of course, but I also want to commend you on your approach and attitude toward the loss. I know from experience that the attitude is sometimes not enough, that sometimes we don't live up to our aspirations in the face of loss, but having the idea is the necessary first step.
I hope you get to see (and shoot) a lot of great stuff that reminds you of your sister.
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Duncan,
Quite a beautiful and eloquent article. My deepest condolences on your loss, and like Rick, kudos on your attitude.
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Today is the 21st anniversary of my stepbrother's death at age 13.
It always hurts, but it does get better with time.
And what you are doing -- telling people about your sister's experience, thinking of her, sharing Joli stories -- is something I have found to be therapeutic.
You have my condolences on your loss and my well-wishes on the road ahead.
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Duncan, I am happy you are able to breath again. I haven't lost anyone quite as close to me, but I do imagine what it feels like. I lost my uncle a couple months ago.
Life is short, the statement "living to the fullest" does not even start to describe it's true meaning. My deepest condolences to you and your family during these though times.
God bless,
Bruno
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I am so sorry for your loss. Thinking of you, friend.
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Duncan,
You've been in my thoughts every single day since you left our house last week. I'm so glad you're with your family now, and that you made it through such an incredibly difficult week.
As always, you have our love, support, wine, food, couch, and anything else you need. Come home soon.
XO,
J
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Duncan, I'm so sorry. The experience of working all week with this looming in your mind must have been strange indeed. I can see how the high level of intellectual stimulation at TED could have helped you to focus on positives in the wake of such negative news.
My condolences to you and everybody in your family. Here's to your fondest memories of your sister.
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Sorry to hear that you and your family went through all that. Thanks for sharing.
My deepest condolences.
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My condolences on the loss of your sister. I lost my sister 14 years ago to cancer (non-Hodgkin's lymphoma in her case). She had a similar course of treatments and statistics. I still think of her often, and miss her, but the thoughts make me smile these days...things like, "that picture resembles the one she painted that's in my dining room" and so on.
I'm glad you're breathing. Don't pressure yourself to feel any particular way, or to "get over it" in any particular time-frame, or to feel that, because you've accepted it one day, you shouldn't feel mad as hell about it on another day... and no matter what, keep breathing!
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I'm sorry for your loss and my deepest condolences to you and your family.
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Duncan,
Even though I am one of the many anonymous readers of your blog, I would like to say that I was very touched by your post. It is clear you loved your sister and will honor her for the rest of your days. Keep on keeping on!
mb
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Duncan,
What a beautiful post. You've left me blubbering like an idiot. Been thinking of you often since you left last week, so sorry to hear about Joli, but glad to hear your breath has returned.
—David
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Thank you for sharing. Your story makes me think of my own brother, who I lost a few years ago. I hope my story helps you reflect on your thoughts and emotions.
http://www.bocktriplets.org/articles/2007/08/21/my-fallen-hero
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So sorry to hear this, Duncan. I have no doubt you'll live up to the inspiration that you close the post with.
Take care. We're thinking of you.
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Wow....
I haven't felt this pain in about a year. My mother passed away (complications from cancer :() 1.5 years ago, and my story of trying to see her one last time was similar to yours. She ended up passing away as I was packing up to go visit her that one last time. I am very sorry for your losses, and I really need to take in a lot of what you said at the end.
Glad to hear that you are breathing again, and again, sorry to hear about it.
JD
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Wow, Duncan. I had no idea this was what was going on behind the scenes. Thanks for sharing this touching story. Reminds me of Glenna Fraumeni's talk. I can only imagine how that must have felt to hear for you. See you soon, and best wishes to your family.
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So sorry for your loss.
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Just one more message from on of your anonymous and faithfull readers. In my mother language because it's easier when it deals with such paintfull moments.
Très joli texte, très émouvant, très sincère, très bien écrit. Mes plus sincères condoléances. Mes pensées t'accompagnent pendant ce moment douloureux.
Courage,
Freddy
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hey duncan, i don't even know you but i followed a link here and i have tears from reading this. i'm so sorry for everything.
my mum is battling cancer at the moment. every time i see a cancer research fundraising pot now i put money in. i believe we can find a cure for this disease, and scientists need all the support they can get to do it.
thank you so much for sharing your story.
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Hi, James,
I know very exactly what you are talking about. It was my dad and I spent last year with this breath kept back. Now we have moved back to my parents' house to live with my mom, so I am just now recovering my breath.
Oh well, sucks
Matěj
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I said this to you once years ago on another very sad blog post. It's the single most important thing I learned when my son died:
Not every death is a tragedy and not every life is wonderful. But a wonderful life no matter how it ends and no matter how short it was is never a tragedy.
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I'm terribly sorry for your loss, Duncan. It's cruel and unfair and random, and I don't think we're ever equipped to face such a brutal end. Your approach is noble and pragmatic. Best wishes, my internet friend.
Simon
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Terrible news; best wishes.
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Duncan-
So very sorry to hear of your loss. Thank you for sharing the wonderful memory of your sister.
Best wishes and hopes.
-Josh
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Duncan,
If you need to talk while in Dallas, just stop on by Our Redeemer Lutheran Church, across from NorthPark center. We're there if you need us.
- Michael Schuermann
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I am really sorry for your loss. Thanks for sharing. Keep up the good work.
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I mentioned to someone earlier today that I know it sounds stupid but I can't imagine what you are going through. Kim, Maggie, and I send you love and an open invitation for whatever you need.
D
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Thank you all for your kind thoughts. Thank you Daniel, pprevec, mscheuermann, Josh, Benjamin, Simon, Sam, Matej, Aimee, Freddy, Dave, James, Manton, bokmann, David, Matt, Matthew, Cindy, David, Danielpunkass, Damon, Bruno, Joe, Graham, Rick, Bryan... and those that had google ids.. Thank you all. You make it easier to breathe. All of you.
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So sorry for your loss. What a well-written and moving piece.
I lost my sister to similar circumstances a few years ago. Even though I made it back to her town in time she passed while my brother and I were catching some sleep at a hotel near her home. It was all so sad and so surreal.
I wish the best for you and for her family.
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Duncan,
Thank you for sharing this. My aunt passed away from lung cancer (et al) in the Fall, after battling it for 2.5 years. I'm sorry for your loss. Thanks for the inspiration to keep creating.
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Very sorry to hear about your loss ;( My condolences to you and your family.
Thank you for sharing the experience in such an exceptionally-well-written way.
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I am very sorry to hear about your loss, my heartfelt condolences to you and your family.
Ahsan
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Everyone comes to see the world their own way, but for me, when I have the “Wouldn’t Tony have loved to see this!” thoughts about my brother, sometimes I have this quiet little feeling that maybe some part of him can.
So, just in case, I try to keep looking around, living in the world, and breathing.
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Keep breathing man.
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I don't know you at all but you have inspired me so much at the Daily Shoot and I just want to let you know that I, too, have felt this stifling feeling to the point where you let the Universe take over breathing for you. . . I am so glad you took your first new breath! Joli, I am sure, would have it no other way. Keep breathing! Joli is in the air!
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The experience of working all week with this looming in your mind must have been strange indeed. I can see how the high level of intellectual stimulation at TED could have helped you to focus on positives in the wake of such negative news.charger
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Duncan, I learnt about you because you took a photograph of me on stage at Velocity 2010 in Silicon Valley. Thank you for writing such a courageous note. Now so many of us who didn't know her will light a candle in our hearts. Vik Chaudhary.
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Hey Duncan, I was at TED Global 2010. I'm in ur crowd shots and I used some of your pics in a blog post on my site here: http://www.amazingwomenrock.com/myblog/8-amazing-performance-artists-who-rocked-ted-global-2010.html
I got here looking for a URL to which to link...
I'm so sorry about Joli. I thought you might find some comfort in these letters: http://www.amazingwomenrock.com/tributes-eulogies/katherine-martin-s-triumphal-surrender-recounted-by-her-husband-franc-sloan.html
I wish you were my brother.
Susan
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