When advocacy hurts, remembering Beth Caldwell

When Advocacy Hurts – Remembering Beth

When your advocacy efforts revolve around breast cancer, hurt happens. When your advocacy efforts often focus specifically on metastatic breast cancer, hurt is inevitable. Not only is it inevitable, hurt happens again and again and again. The reason is obvious, or should be by now. Too many keep dying from metastatic breast cancer. Too many. Just too many.

As many of you know, Beth Caldwell died on November 2nd from metastatic breast cancer. She was 41. Beth’s family has been added to that ever-growing list of families who have had dear ones stolen by this wretched disease.

When will it stop?

How many times can our hearts break?

Beth’s voice was an intelligent, forceful yet thoughtful one in the metastatic breast cancer community. Beth will be dearly missed by many, including me. The heartache of her family, especially her beloved husband and two young children must feel unbearable. My heart aches for them.

Every year, more than 40,000 lives are stolen by metastatic breast cancer in the US alone. We cannot forget this fact. Beth wouldn’t stand for that. Every life stolen is special. Every. Single. One.

I want to share a few things I admired about my friend Beth and yes, I considered her my friend even though we never met in person.

Beth stirred things up. 

Beth was blunt and said things that needed to be said, and I don’t mean just things about breast cancer. Oh no, Beth spoke out about any injustice or inequity she saw. She advocated for kids’ rights, women’s rights, patients’ rights. Human rights, period. She supported the LGBT communities, the disabled, the poor and the dying. She took on social injustices of all sorts and called out politicians (and others) when she felt the need to do so, which was pretty often! She stirred things up alright. I couldn’t wait to check her Twitter feed every single day. I am going to miss that. I already do.

Beth had a way with words.

I suppose this is no surprise. After all, Beth was an attorney who worked in the Department of Education’s Office of Civil Rights. Beth’s blog, The Cult of Perfect Motherhood, was chalk full of wisdom, wit, humor, honesty and yes, a bit of cussing. Let’s just say, she knew how to get her points across!

Beth was a fighter.

And I don’t mean in that rah-rah, stale breast cancer narrative sort of way. Beth was a fighter in ways that truly made a difference. If Beth was in your corner, you had an ally and a damn determined one.

Beth was a doer.

So many of us say stuff and make plans to get things done. Some of us, like me, are procrastinators. We move slowly or sometimes not at all. Not Beth. Beth not only wanted to get things done. She expected to get things done. And she expected others to get things done. And guess what? She got things done! One of those things she got done was co-founding MetUP.org, an organization Beth was very proud of and rightly so. When advocacy hurts, remember Beth Caldwell

Beth made those of us who knew her, whether it be online or in person, better advocates. She made us better people. Period. Who else can you say that about?

Beth was a Girl Scout.

I was a Girl Scout. Dear Daughter was a Girl Scout. I was a Girl Scout Co-Leader. I bet Beth was one heck of a Scout and Scout Leader.

Beth wanted unity.

Beth understood there are walls in cancer land and that those walls need to come down or at least not be quite so high. Love this comment she left on my post about those very walls:

If we don’t work together, we’ll die apart. I wish more breast cancer organizations would listen to all the voices–too often, when we express what our community needs, we’re treated with hostility instead of compassion. The best conversations I’ve seen in Cancer Land are when people with different experiences listen to each other, so we can understand each other. Empathy is so much better than walls!

Amen to that! And there was this one she left on my I will be an ally post about divisions that exit:

“…all cancer is shitty and that ours is shittier doesn’t mean theirs isn’t shitty.”

Ditto.

Beth was passionate.

Sometimes Beth’s passion got her into trouble, heated discussions. Sometimes others didn’t (and still don’t) understand the reasons behind the frustration and the anger. Sometimes others didn’t (and don’t) even want to understand. Beth understood that anger is sometimes very much needed to move the needle. And hell yes, people are angry about the lack of progress in nearly every realm of metastatic breast cancer.

Beth was supportive.

Beth didn’t comment here on the blog often, but she was a loyal reader and supporter, often tweeting and/or re-tweeting, not just my writings, but writings of countless others as well. Beth was one of the very first people to read my memoir and then write a review on Amazon. It couldn’t have been an easy read for her and after she read it, she told me she wanted to give me a hug one day in person. Well, that didn’t and now won’t happen, but I felt her hug nonetheless. Thank you, Beth.

Beth was our friend.

I only knew Beth virtually, but I knew her well enough to know she was smart, loyal, kind, compassionate, understanding and inclusive. Beth was a good friend to many, including me. And oh, that smile. We will miss you, Beth.

Beth was a fierce advocate right to the end.

Beth didn’t stop advocating even when she was dying. Literally. Dying. Struggling to breathe. Why didn’t she stop? Because she wanted others to understand what metastatic breast cancer means.

There is so much more to say; my words feel inadequate because they are. Words are always inadequate when I learn of yet another person’s life stolen by this insidious disease. Sadly, there will be more. But I will never turn away. Why not?

Because each loss feels personal. Each one makes me circle back to remember the others. Each one takes me back to my family’s heartache. Each one feels different and yet each one feels the same.

Beth, you inspired us, you inspired me, to keep advocating and to keep asking, will this save lives?

We will keep doing both.

Because we have to do more than care. We have to act.

Thank you for being you, Beth. Thank you for living out loud and yes, for dying out loud too. We heard you. We love you. And #wewillnotforget.

Do you want to DO something, right now?

You can donate directly to a personal fundraiser page set up in Beth’s honor to support mbc research at Fred Hutch in Beth’s hometown of Seattle.

When advocacy hurts, remembering Beth

You can consider donating to any of the fine charities represented in this piece, Forget the Pink Stuff: 5 Charities That Are Making a Real Impact for Breast Cancer Patients & Survivors. A couple other good ones to support are:  The IBC Network Foundation and Metastatic Breast Cancer Network. 

Finally, 10% of profits from my books will be donated this year to MetUp.org, in honor of Beth.

AND – doing something doesn’t have to mean $$$. Start a conversation. Speak out. Do something. Click here for a few more ideas.

#forbeth

#fearlessfriends

#researchnotribbons

Fred Hutch donation image via The Underbelly and shared with permission. Featured image via Facebook.

Do you have a memory of Beth (or another dear one who has/had mbc) that you’d like to share?

What action will you take and encourage others to take to help move the needle forward to help save lives?

Do you have metastatic breast cancer and if so, what do want others to know about it?

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22 thoughts on “When Advocacy Hurts – Remembering Beth

    1. Beth, Thank you. And you’re right every single death from this disease is a horrible loss – so many families devastated every day. We must do better.

  1. Thank you for writing such a thoughtful and heartfelt post, Nancy. I love the comments from Beth that you’ve included here. Her fire and resolve will continue to be an inspiration. Wishing for peace and strength for her family.

    1. Liz, I loved those two comments and had to share them. I especially love the opening sentence in the first one, “If we don’t work together, we’ll die apart.” Very profound. And I love the other one too. Cancer any kind, any stage is shitty. Thank you for reading and commenting.

  2. Thank you for the beautiful tribute for Beth. I met her last year and was in awe of her fierce drive to keep advocating. We now will all step up our game for research.

    1. Mary, How wonderful you got to meet in person. Beth’s drive was amazing indeed – I could feel it right through my computer screen. She inspired us all to keep at it and that’s what we’ll try to do. Thank you for sharing.

  3. Nancy,
    Thank you for this. While I did know Beth personally, before I met her in person I felt I knew her. That was Beth. While I was caretaking and feeling exhausted, Beth would say “put on your o2 mask” so many memories and heartache this year. And, yes all come rushing back. Beth you were so well loved. Time for an o2 break.

  4. Nancy,

    Beth was my best friend. Although you “only” knew her virtually, you hit the nail on the head. You seem to have known her pretty well. Thank you for this touching tribute *wipes tears from cheeks *.
    Please keep the advocacy work going!

    1. Paige, I am so sorry; your heart must be aching so much. What a blessing to have been such good friends. Beth was very special to so many, including me. It’s pretty amazing how many people she impacted. She truly lived out loud and she had a way of connecting with just about anyone. We’ll keep the advocacy going, each of us in our own way. Beth won’t be forgotten. Thank you for sharing and again, I’m sorry.

  5. Thank you so much for this tribute. You really encapsulated what Beth contributed to the world, both as an advocate and as a person. I wish she were here to read it. It hurts.

  6. Nancy, what a beautiful tribute to Beth. Yes, she was something. What a voice. What an advocate. What a human being. I was always amazed at the energy she found for advocacy when she was so sick. She has touched so many lives and I could never forget her.

  7. Thank you, Nancy, for this wonderful tribute to a one-in-a-million woman. You captured Beth perfectly. My life is better for having known her, even if she couldn’t turn me into a bourbon drinker!

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