April 27, 2015

LBBC "die-in"

I met Jennie Grimes at the recent Living Beyond Breast Cancer conference. She was also asked to join the advocacy group and was instrumental in creating our "die-in." And Jennie and I have in common our work with the HIV/AIDS communities.

Do you remember the sit-ins of the 1960's and earlier? Mahatma Gandhi, India's great leader, created this non-violent form of protest. Encyclopedia Brittanica writes:

Sit-in, a tactic of nonviolent civil disobedience. The demonstrators enter a business or a public place and remain seated until forcibly evicted or until their grievances are answered. Attempts to terminate the essentially passive sit-in often appear brutal, thus arousing sympathy for the demonstrators among moderates and noninvolved individuals. Following Mahatma Gandhi’s teaching, Indians employed the sit-in to great advantage during their struggle for independence from the British. Later, the sit-in was adopted as a major tactic in the civil-rightsstruggle of American blacks; the first prominent sit-in occurred at a Greensboro(North Carolina) lunch counter in 1960. Student activists adopted the tactic later in the decade in demonstrations against the Vietnam War. 
A tactic similar to the sit-in, the sit-down, has been used by unions to occupy plants of companies that were being struck. The sit-down was first used on a large scale in the United States during the United Automobile Workers’ strike against the General Motors Corporation in 1937. See also civil disobedience.

Jennie gave her permission for me to share her blog post about our "die-in." As we arranged ourselves to form two lines, she snuggled in next to me, took my hand, and with my roommate holding my other hand, we, for that moment, represented the 108 Americans who would die of metastatic breast cancer that day and every day.

philadelphia story

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, face masks 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” advocate 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.
Inaugural "Hear My Voice" advcates
Inaugural “Hear My Voice” advcoates
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.
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!
image (2)
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?  To 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.
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.
Pamela died from Metastatic Breast Cancer at 29 leaving two 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.
My demands include:
  • Changing the funding directed to Metastatic Breast Cancer.
    Of the $15 billion invested in breast cancer research from 2000-2013, only SEVEN percent was spent on stage IV disease. 100% of deaths from breast cancer are due to stage iv. Funding must reflect this. #stageIVdeservesmore
  • Adequate epidemiology and statistical counting for women living with MBC Currently, the breast cancer data system (SEER) only counts women at the time of INITIAL diagnosis. This means that those rediagnosed with stage IV (like myself, Tracey, and so many others), are never entered into Federal databases. Impossible to receive adequate funding, for inadequate data. #stageIVdeservesmore
  • That as a community we lift our MBC sisters of color and those with limited health care access. The stage of disease at diagnosis is higher in African American women and despite a lower overall incidence, the survival rate for black women diagnosed is 20% lower than white women. #fightingforALLofUs #everyColorofStageIVDeservesMore
  • A coordinated alliance with our sisters with early stage breast cancer. As 30% of them will become us (after my own initial diagnosis of stage 2 disease, I know how very true this is), we need your voices, your push, to carry ours on. Especially as we continue to die from this disease, please carry my voice. #MBCally #notMeButCouldBe
How you can help?
  • Stay tuned in the coming months for more advocacy, more info, more legislative push to make these changes real.
  • Share this post, and others every #MetsMonday. Help us to make the noise that we need to make change.
  • Support those in your life living with this disease. Sometimes we need you to fight for us, as this disease can sometimes knock the fight right out of ya.
scott2I’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 every day.  I AM asking us to “MET UP“.

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