BCAM: October 13th

Advocacy, BCAM 3 Minutes

Today is the ONE day during Breast Cancer Awareness Month allocated to those of us who are Stage IV. When I was diagnosed, I was astonished to learn that we get one day. We are dying 365 days of the year, 24/7, and we get ONE day in all of October?!

Frankly, it feels like just one more slight, one more way that the powers that be can sideline those of us who are the elephant in the room. By being present, we remind everyone of their mortality. By being present at the table when breast cancer is discussed, we remind those who want to categorize breast cancer as the easy cancer, that there is a dark side. By being vocal, we make lots of people uncomfortable. By asking that someone pay attention, we force others to be reminded of their own mortality.

I get it.

No one wants to think about mortality; how everyone alive will inevitably die. It is a rare person who is comfortable with the subject of death, with the subject of mortality, with the subject of even preparing for death.

I get it. I wasn’t all that comfortable before breast cancer either.

I get it. It’s not fun to stare death in the face and yet keep on living.

I get it. It’s uncomfortable because what’s after death is an unknown to many.

I get it. Hard things are not easy to face or talk about.

I get it. Our culture does not give us the language to use.

I get it. Our culture takes death and the process of dying and hides it away.

It’s not that I don’t get why it’s hard. It’s just that I don’t have the luxury of a healthy person to look away from my own life. It is my existence all the time and I have no break.

For just a moment, I would ask you to close your eyes and think about how it feels to be in my shoes. Death is my dark companion (as Dexter used to say); it is the sword of Damocles hanging over my head 24/7/365; it is the dark cloud threatening to smother any laughter and joy in my life; it is always in my mind; it is always lurking just around the corner; I am reminded every single day as my friends die, that I may be the next announcement. There is no escaping the idea that death is coming sooner for me than I’d expected. It is the bus that already ran me over, I’m just on life support until the certain end.

I don’t need a day.

I don’t need a month.

I don’t need recognition.

These things aren’t for me, not for my life, but for the understanding that this is my life, that MBC is real and it is entirely different from the other stages. That it WILL kill me. I won’t die of old age, I will die because of breast cancer.

There are two things happening tonight that I would ask you to consider attending/watching.

First, I will be featured through the Winter Park Health Foundation and the Center for Health and Wellbeing in a live presentation about my story and my efforts to support others living with MBC. You can access the registration page here.

Secondly, Metavivor has partnered with the #LightupMBC campaign established by Moore Fight Moore Strong to work with landmarks all over the US to light up in pink, teal, and pink to raise awareness about those of us living with MBC. I’ll be going live on various platforms to highlight the landmarks here in Miami who are participating along with friends and family. I’ve also created an event, which you can access here. To check out the #LightupforMBC team’s livestream, click here.

And now you know more about living with MBC and the dire need for awareness of the only stage that is terminal.

Here’s my #4forStageIV

Published by Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

Published

23 thoughts on “BCAM: October 13th”

  4. I never miss your posts…it hits so close to home. Can’t even begin to describe. Gave me goosebumps when I read about the thought of death always lurking in your mind…trust me, nobody gets it except the one facing it. It’s commendable how you are trying to help others with MBC and spread awareness. Lots of hugs to you💟💟

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  6. Pingback: BCAM: October 13th – Marsha Ingrao – Always Write

  7. I needn’t close my eyes I only need look into the mirror to find an mbc endurer (thank you Rudy Fischman for the perfect word for metastatic people) and see the pain, the exhaustion, the melancholy, the creases in my thinning skin on my neck, the hat covering my hair that refuses to grow in again, my 1/4 inch shorter body, my 1/2 right breast, the scars from 9 periosenteses, the smile that says I AM ALIVE AFTER 5 years and 7 months with this shit disease. I’m not a failure, my shirt isn’t pink, I can’t poop properly, nor can I sleep well, my ever changing prescriptions in my failing eyesight allows me to know I’m not dead yet although there are some days I’m so alone I wonder if I’ve not died and this is what my soul still sees… all weird to someone who’s not got metastatic cancer but very familiar to someone who does. I love you Abigail and I hold space for you and your beautiful heart every day as I say to myself I’m lucky to have you and our other sisters and brothers to support me – not just one day of a month when we are a check on the boxes of which people should be celebrated during BCAM. We celebrate every day we awaken to the people who love us and who we love and hope for another day, week, month, year or longer when we can rise to do our very best to support the future of our lives and to hope for a better way to extend our lives with crap shoot medications we can not afford but somehow we speak loudly enough to receive like a prayer.

    Thank you for the work you continue to do and I rest easier knowing that our voices manage to intensify one another’s to loudly say:
    #fuckcancer
    We are still alive to advocate for those who don’t have the voice to do so and to speak as long as we are blessed with the breath to do so.

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  8. I get it! We should make a rule that women are the only ones who are allowed to stand for government – and in the case of America – for President. As an English teacher, what is the feminine form of the word President? And don’t say it is the same.

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  11. Pingback: BCAM: October 13th – Connect IV Legal Services, Inc.

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