The Losses That Echo, The Losses We Share

A starry sky, photographed exactly one year before Susan's death. (Photo by cliff_R/Flickr.)

Today, an amazing woman and spirit and human being died, after battling inflammatory breast cancer for four rounds and five years: Susan Niebur, @whymommy, an astrophysicist (!) and the blogger behind Toddler Planet. I have never met Susan in person, and she and I never exchanged comments on her blog, but when I heard the news today that she had died, I sat at my computer and bawled. And then I pressed my palms together, and bowed my head, and prayed that her soul should alight again on this planet, because this woman was a serious kind of wonderful.

She wrote about raising children (she has two sons, 4 and 6), women in science, her work for NASA, and the horror of the treatment for inflammatory breast cancer, a rare but brutal kind of breast cancer that appears without a lump, and moves very quickly, overtaking other tissues. Her words on the blog are so alive and filled with wit and smarts. And the words are also filled with the awe at the community her words built, the hundreds of women who took up her cause—not her personal cause, but the cause to spread the word about inflammatory cancer. Susan did not want one more woman to hear about IBC for the first time when they were diagnosed, as she had.

Susan had an incredible knack for seeing beyond herself, and taking in the big picture. She would turn her own personal struggle into meditations on life and compassion and community and what this journey is all supposed to mean. She faced her death with a rare grace, which is what kept me coming back to her posts. Seeing that it is possible for someone to die with wisdom and love in the forefront of her mind has soothed the wounds I carry because of my parents’ twin deaths of disconnection, denial and fear.

The day she came home from the hospital, to make her final retreat into the comforts of home and hospice, she wrote a post I will probably read every day for the rest of my life. I’ve copied it to my hard drive so I never lose it. I will probably print it out and carry it in my wallet. I will attach it to my living will and be sure my child or my partner or my caretaker knows to read it aloud for me as my own time approaches.

For her final post she didn’t write an article. Rather, she gave us a scene, an image to remember, an idea that her passing was just a part of the fabric of her life, as all the previous posts had been. It’s filled with casual banter, Susan gently teasing her husband as he’s trying to get her settled and take care of her. She pokes at him, saying, “What, aren’t you going to blog any more goodbyes?” He responds: “I am not saying goodbye to you yet. I won’t.” Then as he teases her about dressing for the hospice nurse, Susan crafts these final lines of the post:

[I'll wear] Purple. I’ll change clothes and listen to her when she comes, but I can’t promise that I’ll be sparkly to the hospice lady.

[her husband, Curt] I’m willing to bet the hospice lady is not expecting to be greeted with confetti and song.

Good point. More tomorrow, my friends. I hope.

There is no more tomorrow for Susan, except the beauty and strength of what she built and has left behind. But there is plenty of hope, galaxies of it, left sparkling in her wake. When I click over to her home page, it’s impossible not to be struck by the subtitle of her blog, small but strong letters plastered right in the middle of the banner made from the starriest nighttime sky I’ve ever seen: THE JOY OF LIFE AFTER CANCER, as if she’s already smiling down from the heavens, having a grand old time being an official member of the firmament, a glinting and oh-so-bright star now in the very galaxies she studied.

I cry because she was brave and smart and dared to be open to all we cannot control in this world, to me the fiercest act of bravery. And today I read her About page for the first time, and found this:

All that survives after our death are publications and people.

So look carefully after the words you write, the thoughts and publications you create, and how you love others.  For these are the only things that will remain.

And these things she did indeed, and she did them well. I consider these words a guide for how I’d like to live the years I have left, along with that folded-up post of hers in my wallet.

Susan, thank you for your example. The open mourning for you on the internet today was a beautiful expression of your power and reach, and we were all comforted and saddened by all the company we had, the proof of your gifts. May your light shine on forever, in the words your wrote and the love you ignited in each of us.

About stacy

I am a writer, author, mother, longtime magazine editor (20 years in the business, 6 as editor in chief of Redbook), optimist, and, above all, a searcher. Right now, I'm searching for whom I'm really meant to be, after living through a series of very jarring changes that bumped me out of the life I was living: a son, then a divorce, a cataclysimcally messed-up house, which led to a book (Falling Apart In One Piece), and then, one week after that book came out, my parents both fell gravely ill, I resigned from my job (and maybe my career), my son got very scared and then, later, was diagnosed with an anxiety/ADHD disorder, my parents died, and at the same time, my boyfriend moved in with my son and me and we started the long and very painful journey of realizing we couldn't make our relationship work (that story unfolds on this blog). Since then I've been trying to figure out what's next. Or, in other words, how to fill in the blanks.
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11 Responses to The Losses That Echo, The Losses We Share

  1. Cathy says:

    “The losses we share…” so true.

  2. This is wrenching, Stacy. And a reminder how our words can make a difference in other lives. Also, a reminder that they are more powerful and more beautiful when they’re authentic.

    Thank you for sharing this woman and her stories with us. May we all know such grace in our living as well as our departures.

  3. Lindsey says:

    weeping, weeping, weeping. Thank you for this. I too was a Susan fan, though from afar. Are there truer words than these: “she was brave and smart and dared to be open to all we cannot control in this world, to me the fiercest act of bravery.” I don’t think so. xox

  4. It’s been all I can do since about 6:30 PM yesterday when I heard the news, is read all the words that are flowing out from the people whose lives she has touched, from the dear friends in her “real” life in DC to her close blog friends to those like you who knew of her and read her blog but never exchanged words. We are a community of mourners. But also a community whose lives are full of more light because she walked among us and spread her light, inspired us in everything she did.

    I met Susan once, was friends with many of her core DC cadre and so came up to one of their rooms at the Hilton for BlogHer10. Susan was resting on the bed, slowly getting ready for the evening. She sparkled. We hugged. I am eternally grateful we had that moment. I ran into her again and again over the course of the next few days, heard her amazing VOTY address.

    I wish I had been to one of the few conferences she managed to make it to this past year, wish I had one more hug, one more sparkling smile from her. But she will live forever in my heart. I am so glad her words could help ease the pain I know you still carry about the deaths of your parents. Susan was really something.

  5. This is so beautiful, Stacy. I bawled too. It was so unexpected, as I never met her either, but the interactions we had and the effect she clearly had on others made it clear what an incredible person she was.

    A lot of heavy hearts today, I think.

  6. Pingback: One Blogger, Thousands Of Tears:The Blogosphere Mourns Susan Niebur | Care2 Causes

  7. Karianna says:

    Susan has taught me so much, and I am so grateful that she reached so many people. What an inspiration! Thank you for continuing her legacy.

  8. Lisa Stone says:

    “There is no more tomorrow for Susan, except the beauty and strength of what she built and has left behind. But there is plenty of hope, galaxies of it, left sparkling in her wake.”

    I am heartbroken for Susan’s family–and for all of us. Thank you for these sentences.

  9. Alisa says:

    This is so beautiful. Thank you for sharing this and for passing on her spirit and her words. Now I’m off to spend some time at her blog, reading her words, helping her live on…

  10. Pingback: A New Kind of Anticipation | Filling In The Blanks

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