A place– and space– for a star

When I had breast cancer, I never would have believed a day would come when I’d say cancer brought me any rewards.  But it has.

Photo by Amie Adams

One of those was knowing Susan Niebur.

Since this is breast awareness month, I should maybe mention that neither of us had any.

Susan was a rare survivor  who, like me, had lost both her breasts, didn’t have reconstruction and didn’t wear fakes.

When I first met her, that stunned me.  It took me years to work up the courage to do that.

Not Susan.  To quote Brene Brown, Susan was the essence of daring greatly.  She put her authentic self out there.  In fact, I originally heard about the red dress when Susan wore it.

Susan was a star—who studied the stars—a real rocket scientist.  Really.

I always found it ironic that she was so associated with outer space; what I found so remarkable about Susan was her inner space.

She seemed to have infinite depth and an infinite amount—space for her two little boys, her husband, her friends, her work, and space for the many people she inspired via her blog after her diagnosis with inflammatory breast cancer at age 34.

Through her honest and eloquent words, she took everyone along on her journey, which sadly ended last February.

Susan and I were both on the American Cancer Society Blogger advistory council; and she was there the first time I visited New York City’s Hope Lodge.

It’s a magical space in itself, a haven  in the heart of Manhattan–a place for cancer patients to stay during treatment, to relax, and find comfort and peace..

I’ve been back several times, doing mosaic workshops with cancer patients.   On my last visit to Hope Lodge this past summer, Susan was there in spirit.

To honor and remember her, a group of her friends and other bloggers gathered to paint tiles to honor her memory .

Photo by Christine Koh
Photo by Christine Koh
Photo by Christine Koh

It was during BlogHer; and the event was like Hope Lodge itself, a little  island of peace in the middle of the craziness that is BlogHer.  Some of the women who attended wrote about it– here and here and here and here.

After BlogHer, I took all their tiles, had them fired and I arranged them into a piece, which is now on the way to the American Cancer Society headquarters in Atlanta.  .

Displaying this piece will be a wonderful way to honor Susan; yet for me and everyone who knew her, the real place –and space–for Susan Niebur–will always be in our hearts.

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  1. says

    This is truly and INCREDIBLE post. I loved reading every word and your art project is stunning. Thank you for being such an amazing ambassador in the fight against cancer. We are all lucky to know you.

  2. Marty says

    It’s perfect, Darryle. Honestly.

    Thank you so much for creating this – for helping us help you create it. And than you for your words about Susan.

    I really needed this today.

  3. says

    Thanks, Jesica; but truly I’m the lucky one. I’ve so appreciated my involvement with the American Cancer Society–which led me to know Susan, and so many other people that have enriched my life. Doing the workshops at Hope Lodge and making this piece for Susan have been such rewarding experiences– to be able to connect my art to cancer. I’ve loved every minute.

  4. says

    Marty, I can only imagine how hard every day is for you without Susan. I’m so glad you were able to be there for the Hope Lodge event; and thank you so much for your words.

  5. Judy Brooks says

    There are no words. I’m glad I saw the piece when it was still a work in progress. What a beautiful tribute to a life tragically cut so short. You know this always touches upon my survivor’s guilt. That’s something you never get over even after 31 years. I’m still so sad for those not so fortunate.

  6. says

    Oh Darryle! This is so absolutely beautiful. Your words, your art…One of the rewards that I’ve gotten through my involvement with ACS and being involved in the BAC is your friendship. I am so eternally grateful for you! xo

  7. says

    So sweet of you, Judy to comment–and I do know, I can’t quite grasp sometimes that I’m here when so many aren’t. Glad you saw the piece in progress too–I’m happy about how it came out; and so thrilled to be able to help keep Susan’s memory alive.

  8. says

    Thank YOU Christine, for YOUR work on this. It never would have happened if you hadn’t supported it and put it all together–it was SUCH a beautiful event; and such a perfect way to honor Susan. Thanks so much.

  9. says

    I feel exactly the same way about you! I really loved what you said about Susan at the Hope Lodge event–still remember both of you on that first visit. You were lucky to have each other as friends. xxxoo

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