Because I'm the Mom

How mothering pervades all relationships in life.

Organ Donation Agony: Who Deserves My Brother's Heart?

A view from the wrong side of organ donation

Before he got his new heart, The Wall Street Journal’s Health Blog posed the provocative question:

“When will Dick Cheney be too old for a heart transplant?”

This, of course, was in reference to the former Bush Administration Vice President (often referred to as the President's Brain) who discussed his ongoing heart ailments and the possibility of a heart transplant during an interview on the Today Sho, sparking lots of press about it, then got a brand spankin' new heart through a transplant - causing more discussion about whether or not he was too old.

I humbly suggest that was-- and still is -- the wrong question.

I’m saying this as a person who lost the dearest person on earth to me, my brother, who was an organ donor and a perfect match for everything. He was a great, great connector in life, a bridge between so many disparate people. In death, it turns out, he was as well.

This is not about politics or other poisons. It’s about watching someone you love die, or not exactly die, but lying in that awful, awful, purgatory required for you to respect their wishes to continue giving life even in death.

It’s about being the family member designated to sit in that conference room with the organ donation coordinator, answering questions about body parts and final wishes. Because that is how it goes. Somebody in the family has to leave the horror of the purgatorial hum in the ICU and take a seat in the conference room down the hall and answer questions about your living, and deeply beloved, family member's life -- in service of the impending horror of the chief surgeon declaring him, in my case, my brother, declaring him brain dead but body alive so his mortal frame can quite literally be of service to dozens (in my brother's case, 40) live people.

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They speak in a gentle, but firm whisper. They can't apologize for your loss, because your loss is not official yet. It is hovering (like his soul??? Like my own heart??)

They apologize for asking such intrusive and seemingly inappropriate questions but they must gather a quick assessment of how he lived the sum of his life in order to decide if his parts are acceptable. I am  neither awake nor asleep, alive nor something else as I answer. I myself am in purgatory of my own, no sleep, no food, barely enough breath to keep breathing. I keep passing out, which is a relief. It's the coming to that's the hard part. Oh right....this is real.

But, of course, nothing is real.

Did he use drugs.

No. He was a body-is-temple vegan.

Was he athletic?

Yes. Ran marathons.

Patient had a history of…

Patient had a history of enormous warmth, of the most expansive level of compassion and empathy most folks have ever encountered, of a lion’s roar of a laugh, of an unquenchable desire to build up broken souls and broken systems.

Patient had a history of experiencing and creating joy, of seeing so much possibility in people they had to become their best selves by the sheer force of his vision of who they could be. Patient had a radical moral compass and communal sense that he must live the social justice about which he wrote and taught.

Patient had a history of mentoring and nurturing and fatherly-loving hundreds of high school students from Chicago’s most challenged neighborhoods and schools and taking them on buses to colleges around the nation, showing them the lives and selves they could lead and be.

Patient’s history included serving as the spoken-word poetry coach for whom hundreds of poems were written. “He played the part my father never auditioned for,” one student wrote of Patient.

Patient had a history of being the most exuberantly present and grateful father for the 12 months he got to be a father to his own son.

Patient’s heart?

Patient’s heart was gigantic and miraculous and absorbed and transformed the pain of those around him by some alchemy of empathy and wisdom and humor and love.

Patient’s heart had the capacity to love you out of hating yourself.

So this is not really about organ donation, which I absolutely support, or about Dick Cheney’s politics, which I staunchly do not.

It’s about standing around the greatest person you’ve ever known, holding his hand, rubbing his feet, singing and weeping and aching and staring. You’re in a circle around him, holding him and each other, singing and sobbing and refusing to say goodbye while doing just that. And then they tell you it’s time, the teams are ready across the country, families of recipients in ICU waiting rooms somewhere else are weeping at their good fortune. Your loss is their new life.

They say ‘it’s time,’ just as your soft song ends, your hands fall apart, disconnect, the circle around him breaks, and they take him away. You cannot breathe. There’s no turning off the machines or flatline on the screen. He is taken away, and you are not. You are still there.

If you want to know, the transplant folks will tell you how your beloved scored. They are gentle about it, trying not to be overly psyched. Sometimes, like in the case of my brother, they were overly psyched. "He's what we call a 'Homerun Donor,'" they told me. "Every single piece worked. He saved or transformed or healed every single life his organs touched. Literally."

They wanted me to be as excited as they were; they wanted me to find healing in this genuinely remarkable information. "Do you know how rare this is?" they kept asking.

Do you know how rare he is, I kept asking. As has been a consistent theme in the narrative of m arc of grief, I could not, would not, let them off my hook. I would not perform artificial acts of healing/closure/silver linings etc... for anyone. If they asked me then -- or now -- if I would have preferred that the 40 people my brother saved would die so he could live, I would have said 'absolutely.'  

But that was not the choice. There were no choices.

A few months later you may get a letter with the purple Gift of Hope insignia. It’s from the man who got your brother’s heart and he’s eternally grateful and so, so sorry and wants to find a way to say something loving to help ease your pain with his gratitude. You want it to work.

You may choose to write back or not. You may choose to meet. Or you may sit in your pain and loss and not choose anything at all. Because really, you’ve had no choices all along and you know that.

So when I saw the question posed in The Wall Street Journal asking “When will Dick Cheney be too old for a heart transplant?” I had to write this down, words I cannot speak, that they are asking the wrong question.

Mr. Cheney, if you were to receive somebody’s brother’s big, beautiful, socially just, loving, moral, generous, life-affirming heart, how would you live with it? 

Pamela Cytrynbaum teaches at Northwestern University's Medill School of Journalism.

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