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.