My mom used to say that she knew it was November in New England when the skies were perpetually gray. Having been away from the region for six years, I almost forgot what those skies looked like. But each morning for the last week or so I look up at the sky and think of her – she was right, and in a way, I find a comfort somehow from the dreary looking sky.
These feelings of both comfort and dread, or solace and sorrow, I’m sure are not exclusive to me. Even though I was admittedly pretty busy last week, my heart broke when I heard the news that Beth Caldwell died.
Who was Beth Caldwell? Well the funny thing about people is that they’re not the embodiment of their obituaries. I know, right, imagine that.
I didn’t know Beth personally, but I respected and admired her from afar. She was the co-founder of an impassioned and dedicated organization that supported women with metastatic breast cancer, Metup. She was a fierce civil rights lawyer, a dedicated mother and a loving wife. I know all this about her because she was incredibly vocal on her blog, The Cult of Perfect Motherhood, on Twitter, and hell even on Capitol Hill. If you’ve ever read a post from her, it’s pretty clear – you don’t dare fuck with Beth fucking Caldwell. Hey Komen, Metastatic Breast Cancer Alliance, and the National Breast Cancer Coalition, I think you’ll especially know what I mean.
Beth Caldwell suffered from a rare form of metastatic breast cancer: neuroendocrine breast cancer. She was diagnosed pre-menopausal. She had only just entered her fourties when her cancer took a final turn for the worst. And yet even when she was barely able to breathe, she was still joking about her love for oxygen on her blog. What a friggen champion.
What also struck me most about watching Beth online wasn’t actually Beth, but her husband. During her last few weeks, her husband J would post humbling status updates that were so raw and so real. There was one time about two months ago, I was taking a bath actually, and through stifled tears I just kept re-reading one of J’s post on Facebook over and over again. I got to a part in his post where he revealed how their kids were upset – they wanted to see their mom and didn’t know why she was so sick. I remember feeling that helpless, watching my dad hold the house together even when everything was falling apart. J provided the world another window into Beth’s life, and it’s been an experience reading his social media posts too. I respect the hell out of him.
It’s truly been an honor to gain such an intimate glimpse into Beth’s tenacious life. Watching her tell her story online, I learned a few things about what it truly means to be an advocate.
1) Being an advocate is a labor of love. In sickness and in health, an advocate fights.
2) Being an advocate means shining your own light in the midst of darkness.
3) Being an advocate is more than just caring about a cause – it’s becoming your cause, embracing it at your core.
To be honest, most people reading this will not become breast cancer advocates. You just have to have a certain spark, a certain passion, to be an advocate. In a world of uncertainty, there are few Beth Caldwell’s out there, and you can’t help it but feel lucky when you find them. And when you find them, you’d be hard-pressed not to learn a thing or two from them. I know I did.
Beth’s advocacy was earth throttling and controversial. She wasn’t afraid to tell it like it was, to throw fire, in the name of doing what was right. She highlighted a rift in the breast cancer community, between the recently diagnosed and the metastatic women. She didn’t just advocate for awareness – she created it, even if it felt like she had to fight tooth and nail to achieve it. She knew in her last days that the effort for creating advocacy about issues concerning metastatic breast cancer aren’t over, but we’re all a lot better off as a result of her brazen efforts.
Beth’s writing also taught me and others the value of showcasing human connection online in all its glory and tribulation. She helped me feel connected, not just to her, but to everyone she was connected to. Through her advocacy, she built and embodied a community. I can only hope my writing and soon-to-be podcast can continue to pass the torch in Beth’s honor, symbolizing a continued legacy of conviction and truth-telling in the breast cancer online community, especially in the metastatic space.
This moment probably feels bittersweet for her close family and friends. My heart goes out to J and their children. It’s undoubtedly tragic that she passed, but as her husband wrote on Facebook, she died in his arms on a sunny afternoon in Seattle, just after the clouds and rain from the morning had passed. My mom passed away on a beautiful sunny day too in the middle of winter. It was gorgeous, in a weird way. My mom was suddenly at peace. And for Beth, for the first time since her diagnosis, she’s no longer in pain, and sometimes that realization can provide a feeling of unspeakable relief.
On a end note, Beth is not alone in her struggle. She was far too aware of the fact that with her death, she was joining the estimated tens of thousands of women that have died from breast cancer in the US this year alone. Many of us mourn Beth, but she’s not the first, and she won’t be the last.
Do you want to pay tribute to Beth? Don’t be dumb, think research over ribbons, and oh yeah, be sure to vote for affordable universal health care – she’d like that.
I didn’t know you Beth, but damn will you be missed. I hope you’re having a hell of an after party up there, and if you happen to see my mom, would you mind telling her I say hello?✨
PS: Want your money to go towards metastatic breast cancer research? Donate now to this fund which will go specifically to Dr. Kevin Cheung, an MBC researcher at Fred Hutch who Beth knew and believed in. One of her last messages read: “Get Kevin’s research the money it needs!”