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Arijit "Poop Strong" Guha has died of colon cancer

Xeni Jardin — Sun, 24 Mar 2013 17:36:03 +0000

Arijit "Poop Strong" Guha (Twitter), a really sweet guy who took on a dirty rotten insurance company and stood up to TSA "Flying While Brown" bullying (while wearing a t-shirt designed by Boing Boing's own Cory Doctorow) has died.

He was 31, and had metastatic colon cancer.

I did not know Arijit in person, but we exchanged a number of internet messages since we met online as cancer-compadres. His wife posted this today to their Facebook page.

It is with the deepest sadness I have ever known that I share the following: Arijit Guha—the bravest, kindest, most compassionate man to grace this planet—died earlier today. He went peacefully, at home, surrounded by love and free from pain. He lived his life, even up to the very end, with warmth, humor, and positivity, and his boundless capacity for hope and love gives me strength. He will be greatly missed, but I know that his beauty, goodness, and desire to make the world a better place will continue on through all of the people and lives he has touched.
My heart is aching, but the pain is eased a bit knowing that he has the support of such an amazing community of people, so many of whom have never met him. I thank you all, from the bottom of my heart, for all you have done for him. He is truly an inspiration (though he hated being told so), and I will be eternally grateful to have had him in my life, and to have been able to share him with all of you.
Love,
Heather

Here's a Facebook memorial page for him: "Celebrating Arijit, Life, and Hope."

Arijit Guha—rabble rouser, do-gooder, mustache enthusiast—died on March 22, 2013, after a spirited, graceful, and inspirational bout with cancer. His life was one of love, optimism, joy, humor, and compassion, and this page is to celebrate that life.

My heart goes out to you, Heather, and to all who knew and loved this kind young man.

Fuck cancer. And fuck injustice. Long live love.

(via Arizona Daily Star and @KinkyCancer)

Cancer and music "that makes me want to live"—Brian Mansfield

Xeni Jardin — Tue, 31 Jul 2012 15:24:29 +0000

USA Today's Nashville music critic Brian Mansfield was diagnosed with colon cancer at age 48. In a beautiful piece at USA Today, he describes a kind of "cancer honeymoon" just after his diagnosis in which he felt hopeful and eager to make changes in his life. That ended abruptly when further information about his disease showed that things would be harder. Read the whole piece, I don't want to spoil the story for you here, but this part really resonated with me:

Cancer has changed the way I hear music, more than any other life event except my marriage. Songs I once appreciated only on a surface level now strike deep at the core of my soul. Some inspire me; some terrify me. Others that I might have liked before, I've got no use for now. I've also got more time to listen, whether it's during my morning exercise time or while lying in a hospital bed.
These songs form part of the soundtrack to my cancer story...

Man. Same here, Brian. Before my mastectomy, someone on Twitter told me that some study showed that patients who were able to bring a CD of music to the operating room, to be played during their surgery, had better recovery outcomes. I made just such a CD and brought it to the hospital. Didn't end up playing it, and I recovered well, but I share this anecdote because there have also been certain songs that I play to and from important medical appointments, certain songs I've cried to or just listened over and over to, to jolt me out of the awful darkness that comes with cancer. And I'm going to play that "surgery" CD when I drive to radiation treatment this morning.

Anyway, Brian's Spotify playlist is here.

And read the rest of this story: My Semicolon Life: Cancer honeymoon's over. (USATODAY.com)

The track at the top of his list is embedded above: "Dance in the Graveyard," by Delta Rae. Download it here, and the lyrics are here, and pasted below:

When I die
I don’t want to rest in peace
I want to dance in joy
I want to dance in the graveyards, the graveyards
And while I’m alive
I don’t want to be alone
Mourning the ones who came before
I want to dance with them some more
Let’s dance in the graveyards

Gloria, like some other name we kept on calling ya and waiting for change
But I belong to all of your mysteries

And all of us, we’re meant for the fire, but we keep rising up and walking the wires
So when we go below don’t lose us in mourning

’Cause when I die
I don’t want to rest in peace
I want to dance in joy
I want to dance in the graveyards, the graveyards
And while I’m alive
I don’t want to be alone
Mourning the ones who came before
I want to dance with them some more
Let’s dance in the graveyards

Oh my love, don’t cry when I’m gone
I will lift you up, the air in your lungs
And when you reach for me, we’ll dance in the darkness

And we will walk beyond
Our daughters and sons, they will carry on
Like when we were young, and we will stand beside and breathe in their new life

Poop Strong: Cancer patient whose costs exceeded insurance cap wins victory, via Twitter

Xeni Jardin — Sat, 28 Jul 2012 22:22:41 +0000

Arijit, 31, is graduate student in Arizona who was diagnosed about a year and a half ago with stage IV colon cancer. He endured multiple surgeries, and grueling rounds of chemotherapy. Then, in February, 2012, the cost of his treatment exceeded the lifetime limit on his graduate student health plan, which is managed by Aetna.

His coverage was terminated. His cancer was not.

He launched what we cancer patients sometimes refer to as an internet lemonade stand: a site called Poop Strong (a light-hearted parody of "Livestrong"). At poopstrong.org, he invited well-wishers to make a donation or buy schwag, with all proceeds going to his healthcare.

But, big news today, as his pal Kirk Caron tells Boing Boing,

In the six months between when he was dropped and when he'll be picked up by another student health plan, he's been looking at well over $100K in medical bills for his treatments. In addition to updates about his own condition and the state of Poop Strong, Arijit's been tweeting (naturally) about the state of health insurance, and recently, Aetna got involved. The conversation (as Twitter convos tend to do) sort of spirals out from the main thread between Arijit and Aetna.

That's an understatement! Arijit ended up debating directly with the CEO of Aetna, Mark T. Bertolini. The tl;dr: Aetna, and Mr. Bertolini, agreed in the end to cover the full extent of bills that accrued since Arijit was dropped from insurance (about $118,000).

"The system is broken," said Bertolini. "I really am trying to fix it."

Arijit is redirecting all of the donations he received the University of Arizona Cancer Center Patient Assistance Fund and The Wellness Community (Arizona), to directly assist other people with cancer who cannot pay for the life-saving medical treatments they need.

I spoke with Arijit today, and will be publishing a transcript/audio of our conversation soon. He's a really cool guy, and he has some insights from this experience that I think everyone should hear. It looks like Arijit is covered, for now, but the system is still broken. The debate over health care costs has become a political football—but for people like me and Arijit and everyone else in America who isn't in the 1%, health care costs are literally a matter of life and death. No one should suffer or die because they can't afford medical treatment. It really is that simple.

Arijit's friend Jen Wang created a Storify of the twitter exchange between Arijit, Aetna's PR reps, and Aetna's CEO. You can read this below.

(Images courtesy Poop Strong / Arijit)