Death comes laced with injustice.
Sometimes I fear that I will be mourning forever, that there is nothing ahead but more grief. That no matter what actions I take, each day will begin with remembering all the people I have lost and all the love I am missing. I am afraid I will spend most of my hours ignoring the living, breathing love around me because I miss what I used to have.
The word “miss” is not right. It feels so much like death steals away the people we love. It feels like we are owed more time. It feels like the universe is cruel, and that we deserve better.
Grief made me realize how entitled we feel to life.
Death comes laced with injustice. This is especially true when we lose our loved ones to unnatural causes; we lose our families to poverty, to war, our children are killed by those meant to protect them — and it isn’t fair. Even when death is “natural” it still steals your loved one suddenly, which isn’t right, either. It still feels unjust to those left alive.
We all fight death differently, but it mirrors the way we fight other injustices. Sometimes we passively resist death, silently strong, holding ground as long as possible like those who sat in diners, not so long ago, refusing to move, boldly proclaiming their humanity.
Often, we fight together, marching against death but also for change, like so many of us who have witnessed the chanting of thousands making a difference in public policy. It is rare that we accept death on its face. It is rare that we let our loved ones go without a fight, without an effort toward what would be more just.
The morning my father died, I was the one to affirm that it was time to turn off the machines keeping the shell of my father warm, the one that was rhythmically pushing air into his lungs and blood through his veins. This was not the moment that hurt the most. It was the moment just before, when we were sure he was gone.
Death is not always immediate. It often creeps in the corner, in plain sight for the worst 24 hours/two months/three years of your life, waiting to snatch the person you love. For me, it was 24 hours of waiting for death to come. I was 28, my brother was 19, and the person who had, at one point, been a stay-at-home dad, who had argued with every authority he’d ever met, who attended 40 years of protests, always on the side of what was fair and just, who had carried me on his shoulders so proudly, who pushed our swings, who made our sides hurt with his hilarious sarcasm was suddenly gone.
Once his brain no longer functioned, we did exactly what he wanted, we turned off the shell in which it once lived. After the endless five-minute drive home from the hospital, the rest of my family fell asleep. When the hospital called, I was awake and answered after one ring.
“I’m calling for the family of Arnold Millard.”
“Arnie.” I corrected her. As if he was still alive to care. A tear rolled down my cheek.
“Yes. I know this is a hard time, but. . .”
Organs need to be donated right away. You don’t have much time to consider if you want to save a life, provide sight, donate much-needed skin to burn victims — or if it is more important to keep your family member’s body intact for burial. My father always made it clear that he felt only one of these decisions was just, and therefore what he wanted done with his body.
“Oh,” I said to the woman calling from the hospital, relieved to know the answer. I’d just spent 24 hours not knowing the answer to anything. “Yes, please, he was an organ donor, of course, please use anything you can!”
It turns out you can’t do it that way. You have to go over every possible piece of your loved one’s body and give permission.
“Do we have permission to donate his kidneys?”
I remembered my family and a friend’s family marching in Washington, D.C. for the 2004 March for Women’s Lives. My dad was so proud that we were all together.
“Do we have permission to use his skin for grafting?”
I thought of being a young thing, holding my father’s hand, his palm so much larger than my own, him lifting me into the sky and onto his shoulders so I could see the thousands around us, all marching against war.
I realized then that he would never see all I had left to accomplish, all the truths of my own I had to learn. He would never see me share my knowledge with others through my writing. He had been so proud to see my name in print on playbills, but he would never see me or my name again.
“Um,” I could barely breathe. “Um, he died of a heart attack. He has — he had a metal valve, it was supposed to, I mean it did. . . ”
As a child, for far too long I thought that boys and girls had different heart sounds. Because my father was born with a damaged heart valve, he lived with a pig’s valve until I was a toddler, and after that he had an upgrade to a metal valve and his heart ticked. As my mother and I both have quietly beating hearts, I figured it was because we were women, and men had ticking hearts, like clocks, like metronomes. My father was a musician, playing bass and guitar in several jazz and Klezmer bands. It made sense.
My brother was born when I was nine. Eager to be a big sister, I changed diapers, took great pride in showing him off. One day I hugged him close and realized something alarming.
“I think something’s wrong,” I told my mother.
“Yeah, his heart, it doesn’t tick,” and the moment it was out of my mouth I saw my mom’s smile. My cheeks turned pink with embarrassed realization.
“Yes, I understand,” said the woman on the phone. “Could it be donated to science if it is found to be viable?”
My father was, among many other things, a scientist. He had degrees in business and chemical engineering and took great pride in his ability to be logical. My dad knew that in the United States, an average of 79 people receive organ transplants each day. He knew that 22 other people die each day because of a lack of donated organs. He was aware that every ten minutes someone new is added to the list of people who need organs.
He knew that if he had a different heart defect, he would be on a list too.
My dad was the one who told me there were people who were able to circumvent being on an organ donation list due to financial privilege. “A list,” I remember him saying, “There is a list of people who right now, at this moment, could fill a stadium. A list of people who need lungs to breathe, eyes to see, a heart to live — and we regularly bury all of these useful items in disgustingly expensive wooden boxes.”
My father had always made it clear he didn’t want any money spent on disposing of his corpse — he considered it silly. While attempting to fulfill his wishes, it still cost thousands of dollars get his ashes in a nondescript box to sprinkle in the Pennsylvania water where he’d spent each spring feeding ducks. We were lucky we had the means to do this.
While my father taught me many important lessons with words, there is one he taught me by showing, not telling. An atheist, he rejected organized religion, but we still went to temple and celebrated Jewish holidays. Though he may not have realized it, he was teaching me the importance of tradition, of ritual to promote community, the value of preserving the good parts of culture. I still hold this lesson dear.
But he also taught me to weigh the importance of tradition with knowledge of science.
So, maybe your value system requires you to bury your dead as “whole.” But when someone who is not an organ donor is embalmed, their organs are thrown out. Literally, thrown in the trash. If they are not thrown out, organs are punctured and filled with embalming fluid. No matter what, your loved one is not being buried “whole.”
Even if you choose to bypass embalming, I must ask, does your belief system, which may have been invented before organs could be reused, which may have had its peak when we died at the average age of 40, does that system really value dead bodies over live ones? Do you?
To those who fear that a doctor who normally works hard to save lives would see your organ donation sticker and suddenly value another patient over you and let you die, there is no basis for this belief. This is a myth and a powerful one; it is keeping people from life-saving organs. Stop giving it power by repeating it.
The grieving will never end. However, my ability to live with it becomes easier and easier. As I learned to think of my father in past tense, it was helpful to know I did exactly what he wanted; it was easier because it was right. He would tell you it was just. I gave my father’s heart away and I hope my family chooses to honor me by making the same just choice.