About

Barbara in her own words

Having spent the last 15 years of my life as a breast cancer activist and leader of the breast cancer movement, I now find myself living with a different illness: ALS (incorrectly aka  Lou Gherig’s disease).  The issues are both different and remarkably similar.

How I think about this illness and how I react are influenced by my years as a breast cancer activist. How people deal with me now makes me think about how people deal with others who are ill.

The purpose of this blog, Healthy Barbs, is to encourage people to learn to think in new ways about illness and health and to prompt them to be critical of the mainstream coverage of health issues.

It’s not meant to be comfortable. It’s meant to make people THINK!

Speaking of think, if you have never thought about pink ribbons and what they are connected to and cover up, take a look at the trailer for the new documentary Pink Ribbons, Inc. http://www.nfb.ca/film/pink_ribbons_inc_trailer/

I was the recipient in February 2012 of a Smith College Medal for my exceptional professional accomplishmentsand outstanding contributions to the breast cancer community, which, in the words of the college, exemplify the value of a liberal arts eduction.

I was delighted and humbled to receive in December, 2012, the LoLa Hanzel Courageous Advocay award from the ACLU of Northern California for my voluteer work with the ACLU and my work as a health activist.

For more about me, and how I’m coping with ALS, see the profile of me published  in USA Today and The San Francisco Chronicle

Also, listen to podcasts of my perspectives on KQED related to living with ALS, or any serious illness:

Don’t Ask How I Am

I Have A Voice

I’m Dying to Live

For information about my view of media cover of AlS see my Letter to New York Times about how research news on ALS should be released to the public

I can be reached via email: Barbara@barbarabrenner.net

Barbara passed away on May 10, 2013. For eulogies and published obituaries, please see the section of this blog titled “Afterwords.”

44 Responses to About

  1. Glen Janken says:

    Love the name of the blog!

  2. Susan Tobin says:

    Another thought…your mention about “thinking” reminded me of a short story that I will sorely paraphrase between Ralph Nader and his father. When Ralph was a child, his father asked him, “What did you learn in school today? Did you learn how to believe or did you learn how to think?”

    Judy, the intrepid birdwatcher, is still in Cambodia and it’s environs.

  3. Annette Schutz says:

    Barbara~

    This blog is an example of one of the many reasons so many people love and respect you. Amazing.

    Thank you,

    Annette

  4. Penny Cooper says:

    Sitting in library at Fiordlands Lodge en route to Milford Sound…thoroughly “get” your message! So don’t ask me if I’m going to hike …(as my left leg is somewhat dysfunctional these days!)…
    We are thoroughly enjoying New Zealand and I was so happy to “hear” such wise words from you, all the way down here .. Sending much love up your way, Penny

  5. Abby Abinanti says:

    OMG not think….you know how I hate that….thank goodness I just got three kinds of chocolate and I can THINK about what order to eat them in….does that count???

    your the first actual blogger I know….leave it to you to once again force me along. it is about to rain in our world as you can see.

    I shall keep up with it. and learn as I go in spite of myself….abby

  6. Margie Adam says:

    I like this new way of engaging with you, BB. It satisfies my intense interest and concern about your well-being and state of mind and it does so on your terms. I’m glad to be part of your community and to be among those who are joining in to weave this love-cloak for you to cozy up into any time you want.
    From One to Another-
    Margie

  7. Terri Burgess says:

    I am not surprised that I am once again learning from you BB! You are a most intriguing woman; I really do love the way your mind captures and explains complex/emotional issues! You clearly have very cool friends/bloggers too–I wish to join all “who are joining in to weave this love-cloak for you to cozy up into any time you want”
    Terri

  8. Ben Wilkinson says:

    Nice work on getting your blog set up and keeping your wealth of knowledge open and accessible! Thank you again for the honor of working on the now launched and squeaky clean bcaction.org. It was truly a pleasure working with your old team. Cheers to you, Barbara!

  9. kgapo says:

    Hi Barbara,
    Was surprised to find you and your blog via a tweet of @harriseve! I thought you were already managing another NP! Congrats on your new activity as a blogger.I am sure that with your long health advocacy expertise you will have quite a few stories to write! Looking forward to read you,
    Kind regards
    Kathi

  10. I love this. Looking forward to your next installment!

    xoxo
    Anna

  11. Kim Klausner says:

    Can’t wait for the next post; glad to have this connection with you.
    –Kim

  12. Hilary Crosby says:

    Seems that growing older means we converge onto disability – each of us at our own pace. To reference the Christopher Hitchens quotation on a different post, yes, you’re getting slower faster than many of us. That sucks. Not a race you wanted to enter, I bet.

    I feel flattered to be included in the circle of your blog, and appreciate that you are being an organizer and advocate for health care in this new phase.

    love,
    Hil

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  14. Nina Sherak says:

    Awesme blog! Reading your engaging blog made me consider things differently than I had before….. made me feel, made me think, made me smile. You have such a tremendous gift for invoking shifts in thinking and action.
    love the button :)
    - Nina

  15. Vicki Gabriner says:

    Hi Barbara: How fortunate I am that Amy Pett, with whom I worked @ Sojourner when it still was, hooked me up to your blog yesterday. I did a round with breast cancer in 2007-8. I hoped I had paid my cancer dues but that was not to be the case. This past January I was handed a diagnosis of ProLymphocytic Leukemia (PLL), a rare blood cancer. It’s another ball o’ wax from my bout with breast cancer, gotta pony up again & learn new facts, outcomes, possibilities, treatment options, etc. & etc. I look forward to following your blog. Your words are an inspiration. I send you big hugs from Brookline. XO Vicki

  16. szkolenia says:

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  17. admin says:

    Valuable information. Lucky me I found your site by accident, and I am shocked why this accident did not happened earlier! I bookmarked it.

  18. Hillary says:

    Will you post more about this subject?.

  19. Ross says:

    Thank you for sharing such blog

  20. Cody says:

    What a fantastic post, appreciate it very much..

  21. Brian perry says:

    greate blog, i’m goin to follow it

  22. wonderful points altogether, you just gained a brand new reader. What would you recommend in regards to your post that you made a few days ago? Any positive?

  23. isadd says:

    Thanks for all your time & work.

  24. Usually I don’t learn post on blogs, however I wish to say that this write-up very compelled me to take a look at and do it! Your writing style has been surprised me. Thank you, quite nice article.

  25. Beading says:

    Wow! This can be one particular of the most helpful blogs We have ever arrive across on this subject. Basically Excellent. I am also a specialist in this topic therefore I can understand your effort.

  26. Super Artikel, nichts zu meckern, Danke!

  27. Evan Deerfield says:

    Barbara, good to be able to read your thoughts again. I’ve missed getting to read your ED letter for BCA as I posted it to the site. You always manage to make me think about issues in a fresh way and do it in an elegant, insightful way. Best luck to you in your new venture.

  28. natalie Portis says:

    Hi Barbara! I have just taken my first look at your blog. All great stuff, of course! Any comments on the latest Avastin hearings?
    Love to chat with you about it.

  29. John Fensterwald says:

    Barbara: It’s been 40-plus years since our families were together in Charm City (I moved out to the Bay Area in ’98.) I heard your piece on KQED and made the connection. I admire your courage and leadership on health issues, but it doesn’t surprise me. You were the smartest, most outspoken kid I knew. You were a fighter then (had to be in the Brenner family) and remain so. Thanks.

  30. Stacey says:

    Barbara, my dear friend Michael Jack was diagnosed with ALS almost 15 years ago. His blog is hysterical, poignant and irreverant. I thought I would connect you two. http://jacquoff.blogspot.com/search/label/ALS

    I look forward to following your blog as well.

  31. Forever our fearless leader and national health advocate, Barbara….Just to find out you play the piano too? Kisses Karen

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  33. Lois Heaney says:

    Barbara,
    We haven’t been in touch in a very long time. I learned only today of your ALS diagnosis – I was shocked — and went from there to reading your honest, literate, and challenging blog. I can see that you are handling this as you have your life speaking truth with extraordinary intelligence and clarity. You have me deep admiration.
    Lois Heaney

  34. Matthew Coles says:

    It is so good to be hearing your wise words again. Much love, constant respect.

  35. Lise Lalonde says:

    Hi Barb,

    Thank you for your contribution to Pink Ribbons. You are a major force of the film and the reason I want to be involved. In Health – Lise

  36. Pingback: Context is Everything — Framing the Film Pink Ribbons, Inc. «

  37. Gayle Shiba says:

    Hi Barbara -

    You are such an advocate and giving person. With all that is happening with you, you are still sharing and informing others so that things can be better for others in the who are going through a similar experience. You are the “strongest” person I know.

    Gayle

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  39. Anna says:

    Barbara, I want to say thank you for your decision to publicly fight ALS and breast cancer, especially with such strength, and poise, and outright obstinacy. My mother fought ALS for six years. Two of which when it was a nameless, un-diagnosed disease stealing her strength and coordination. Would it have been any better if we had had an answer earlier? My parents had divorced years previously, so she had just us three kids, with her family thousands of miles away. It turns out that you and she have had a lot in common; the strength, and poise, and sheer orneriness to survive an undefeatable disease. Friends and allies came out of the woodwork for her. I think mostly because she would not sit down an fade quietly. ALS is a devastating disease, more-so than almost any other disease I can think of, save perhaps Alzheimer’s. Most everyone in our town knows a face of ALS now, because of my mom. Because she wouldn’t miss my brother’s high school football games, because she’d ride her hot-pink electric wheelchair everywhere she could, and because of her laughter. She would always laugh, despite the difficulty, and in spite of the inevitable death that would steal what should have been decades more of joy. Trudy would have been fifty-four this August.

    Thank your for your work. I enjoy the honesty and humor of your writing, and I look forward to following your blog.

  40. Theresa says:

    Hi Barbara,
    I just finished watching Pink Ribbons, Inc. which I think is brilliant. I was especially taken by your comments and careful analysis. Your assessments of the whole situation of breast cancer and the commercialization of the disease was insightful and compelling. I love the way you cut through all the BS and spoke with such clarity and simplicity. I was a Women’s Studies professor for over thirty years; I only wish this film had been available when I was still teaching, but I intend to show to staff where I now work. If anyone who is reading this comment has not seen the film, I can’t recommend it enough. It reminds us yet again that we created feminist activism ourselves and we can never rely upon corporations or government to end our oppression. Thank you for all your excellent work.
    Theresa

  41. D Smith says:

    Barbara,
    Like other blog commenters I as well just finished watching “Pink Ribbons”. I’m taken back and frustrated by the information given. I always new that these ” Race for the cure” fund raisers were for someone’s pocket instead of for finding a cause/cure. I want to know what I can do to help. The thought of actual living people viewed as a marketable demographic really put it in to perspective for me. Thank you for what you do!

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