By Jennie Grimes
The terrors of the early AIDS epidemic. The unknowing. The limited treatments. Inadequate funding. Living within a limited timeline. Dying before your time. All while watching your friends around you die, from the very disease that you fight. With over 40,000 deaths a year during the height of the AIDS epidemic, these numbers startled the country. Shook us to our core and demanded that we all do more.
Eerily, the same thing is still happening today. At the same rate, with over 40,000 women dying of metastatic breast cancer (Stage IV) each year—averaging 108 deaths a day. Again, 108 women, just like me are dying every. single. day.
I was again reminded of this disheartening statistic by researchers as I attended Living Beyond Breast Cancer (LBBC)’s yearly Metastatic Breast Cancer Conference in Philadelphia this past weekend. An event that took every bit of my strength, as it is tough to do much of anything only three short days after chemo, let alone fly across the country. But away I went. Networking with these women, gathering information and just sitting in a room full of women like me- is a connection that is worth any amount of neupogen, facemasks and coffee.
And this year was made even more special, as I was invited to be a part of LBBC’s inaugural class of women with MBC for the “Hear My Voice” (remove link, I don’t believe they are accepting applications now) advocacy training. A training that connected me with women across the country, of all ages (ranging from 24-68), and gave more space and voice to African American women with MBC then any other program that I have participated in during my 4 plus years of living with this disease.
It was magic in that it allowed us to rally, to brainstorm, to tease out the reality of this disease without us needing to make it pretty. To make it polite. The training gave us the information, the tools and put it in our hands—I just don’t think they realized how quickly we would move into action. And to be honest, neither did we.
After a grueling day of information and the noticeable absence of women no longer with us, a group of us sat at dinner drained. A few even unable to eat, as the heaviness of our own journeys collided into the reality of our collective. It was then that the 108 number came up again. That 108 of us died today.
That during the course of our three days at the conference, over 325 were estimated to have died, a number that equaled the number of conference attendees. I realized, “We died. Over the course of the past three days of the conference, that death toll estimate wiped out the number of people at the conference”. The shock, the stomach dropping reality moved us into action.
Many of us have likened this journey to the early years of the AIDS epidemic, the limited prognosis and the number of our peers passing away as they speed through limited treatments.
The deaths of 108 people today from metastatic breast cancer will not make the nightly news. If they did, most of the public might be surprised, but then conclude that these women and men probably did not get a mammogram early enough or fight the disease hard enough.
— Shirley Mertz
With organizational speakers even sharing the parallel through their own presentations and demanding that we push and suggesting that we find a way to “ACT UP”. ACT UP (AIDS Coalition to Unleash Power) was developed in the midst of the AIDS crisis to bring about legislation, medical research and treatment and policies to ultimately bring an end to the disease by mitigating loss of health and lives. A diverse, non-partisan group of individuals united in anger and committed to direct action to end the AIDS crisis that led a number of actions to demand more.
I have learned a lot from the AIDS community first hand, as my “pre-cancer career” was spent working with these amazing individuals for over a decade. I was able to view this level of pushback, advocacy and coordination, including my own arrest in protest at the White House doing a “die in” to protest abstinence only funding. A “die in” is similar to a “sit in”, a non-violent form of protest that pushes a bit further to demonstrate the death of the participants. A striking imagery that screams– WE ARE DYING!
Perhaps we were not at the White House this past weekend nor had the time to make a perfectly organized protest. But we did have a large group of women with MBC disease (the largest group that meets annually)- some of which would not make it to the next year. That we at least had the capability to lay down and make a visual mark to symbolize the 108 of us that die each day.
So we rallied the troops overnight, with 3 am posts, emails and drafting. After alerting our LBBC trainers to our plan, we were supported and logistically helped with planning a “die in” for 108 of (their staff was AMAZING). Set to happen midway through our last morning of the conference, we even had the inspirational director of the Metastatic Breast Cancer Network Shirley Mertz join us. And at 10:45 am Sunday, we laid down together.
Hand in hand, a eulogy written by the amazing Beth Caldwell, a young mother with MBC, was read aloud:
“Dearly beloved, we are gathered here to say our goodbyes to the 108 Americans who will die of metastatic breast cancer TODAY, and EVERY day, because there is no cure for our disease. They are our friends, our mothers, our daughters, our sisters, and they deserve better. They deserve a cure, and we honor their memory by DEMANDING IT, not someday, but NOW. And now, let’s have a moment of silence for those 108 women and men who are no longer with us.”
Laying head to head, hand in hand, I heard the sobs of the women around me. The moment of silence echoing the last breaths of so many of us that have gone before. My Keeley. Jolene. Linda. Tobi. Helen. Jaimie. Carla. Jenn. Darcy. Tracey… and so on…and so on. We collapsed into each others arms afterwards. The endless hugs and tears of what a moving moment to finally show our reality.
Prior to the event however, I was approached by another woman with Mets, forcefully asking that we not do something so drastic. That this imagery was not something that should be shared with our kids, our families, or others with MBC. That there were other ways that we could do this. Other ways that were not so morbid, so ugly, so unnecessary.
Her concerns followed me on to the plane that afternoon. Aside from the emotions of the “die in” still lingering and my own exhaustion setting in from the weekend, I felt haunted by this woman’s words during the six hour flight back to LA. Did we go too far? Was it too much? Too dark, too scary? An unnecessary image? Was this not what the MBC community needs?
That was until my flight touched down and my phone lit up with the news, that another young woman- the second that I knew this week- had died from MBC. A 34 year old woman, the same age as me. And I suddenly had my answer- we have NOT gone far enough.
Sephora died at 34, the same age as me. A Huff Post writer and advocate, she will be missed.
Pamela died from Metastatic Breast Cancer… She was 29 years young with 2 small children.
Would I love to happily pose for a “live in” rather than a “die in”? 100%. But I have tried those tactics, done those walks, shared my blog and I continue to get sicker while my friends around me continue to die. Harder for our families to see an image of us laying on the ground “pretending to die”, is the fact that we ARE DYING. That they are actually watching us die. Why have we not rallied harder? Why have not pushed past the pretty imagery of breast cancer like our leaders in the AIDS epidemic to demand more? The women that are no longer at the conference each year, the ones missing from my photos, aren’t there because they were cured. They aren’t there because they died.
I have lost my fertility. My career. My hair. My energy. My hobbies. A number of women, my friends, to MBC. The only thing that I have left to lose is my life. So I am making my demands on cancer and taking back what I can. Doing what I can to fight like hell for all of us with the time that I have left.
I’m not asking us to all lay down in protest, I am simply asking that we no longer just lay down in defeat. I ask that we no longer lose 108 Americans every day. I AM asking us to “METUP“.
Read Jennie Grimes’ original post here.