In Lois Lowry’s novel The Giver, young Jonas knows nothing—absolutely nothing—about pain and suffering until after his twelfth birthday. Jonas’s community (which exists in a post-apocalyptic future) is safe and efficient. Not only do the community’s residents not experience pain and suffering due to warfare, illness or disability, unemployment, family discord, or any other cause, they also don’t experience the things that give our days joy and meaning, including music, color, art, and both familial and romantic love. Families are built through a careful process of matching spouses and assigning them babies, borne by Birthmothers whose sole job is to serve as infant incubators. (The community’s family/reproductive structures and values are relevant to any conversation around reproductive technology, so I will likely write more about this aspect of The Giver in future posts.) Furthermore, community members have no knowledge nor memory of a world in which pain and sorrow co-existed with beauty and love.
One person, the Receiver, retains the community’s collective memory on their behalf. When he turns 12, Jonas learns that instead of being assigned to a regular job as his peers are, he will be trained to take over for the Receiver. He starts meeting every afternoon with the Receiver, who lays his hands on Jonah to impart memories. The Receiver starts with pleasant memories, of snow and family gatherings, but must eventually impart memories of pain.
The very first painful memory that the Receiver gives to Jonas is of a broken bone:
Sideways, spinning, the sled hit a bump in the hill and Jonas was jarred loose and thrown violently into the air. He fell with his leg twisted under him, and could hear the crack of bone. His face scraped along jagged edges of ice and when he came, at last, to a stop, he lay shocked and still, feeling nothing at first but fear.
Then, the first wave of pain. He gasped. It was as if a hatchet lay lodged in his leg, slicing through each nerve with a hot blade. In his agony he perceived the word “fire” and felt flames licking at the torn bone and flesh. He tried to move, and could not. The pain grew.
He screamed. There was no answer.
I had to set the book aside for a couple of minutes after reading that passage. A particular affliction of my middle age is a visceral, immediate, and temporarily disabling physical response to any exposure to another person’s broken bone. I get lightheaded and break into a cold sweat. My vision narrows and my stomach clenches. This happens with fictional people, like Jonas and a character in the lovely novel The Snow Child who breaks his back. And it happens to an even greater, more disabling extent when my daughter, who inherited my brittle bone disorder, suffers a fracture. When I was a child and was the one breaking, I never had such visceral reactions. My mom would ask me, “Does your head feel okay? How about your stomach?” And I didn’t get it. I didn’t understand why she was asking me about my head and my stomach when obviously, my broken leg was the problem. But now that my own fractures are a thing of the past, I am utterly unable to handle anyone else’s. I have had many emergency room conversations with my daughter’s doctors while I am sitting down, head between my knees, staring at the tiled floor and willing myself not to pass out.
A broken bone as a straightforward example of human suffering makes complete sense to me. The suffering caused by my repeated childhood fractures provides the simplest explanation for my decision to use preimplantation genetic diagnosis (PGD) to try to ensure that our second child wouldn’t inherit my genetic bone disorder (osteogenesis imperfecta, or OI) as our oldest child did. I suffered as a result of the three dozen fractures I had as a child (and the many physical, social, and emotional wounds connected to them). I have suffered too, in a different way and to a different extent, in loving my oldest daughter through her dozen fractures and the many physical, social, and emotional wounds connected to them. And she, of course, has suffered in her own way. Quite simply, we used PGD because we wanted to spare another child, and yes, ourselves too, the suffering caused by a disorder that makes it far to easy for a child to break her leg walking across her living room floor.*
But here’s the thing about suffering: It is an entirely subjective experience. There are many people with OI who say the disorder has not caused them to suffer, even though it has caused numerous fractures. I recently read an essay on prenatal testing by Stella Young, who has OI as I do. She questions a common reason given for performing prenatal/pre-embryonic screening for genetic disorders—preventing the suffering of children who are born with such disorders. Young writes,
Contrary to many assumptions made about lives like mine, I do not suffer. Even all the fractures and surgeries I had in childhood, and those that occasionally still occur in adulthood, I don’t consider to be “suffering”. I just consider them a part of my life. And those hypothetical questions that people are so fond of: “If you could have your life over…?” “If you could take a magic pill…?” No. Emphatically, no. While having OI is undeniably not all beer and skittles, I believe that my life has been greatly enriched by it.
Young’s attitude toward her OI is very different than mine. Not only do I acknowledge that I have suffered, but I also would wave that mythical magic wand—the one that would allow me to start life over without OI—if I were given the chance. I also, like Young, can see many ways in which my life has been enriched by my experience of living with physical pain and disability. I hate OI, but I don’t hate my life—a statement that is full of truth and paradox and that raises more questions than it answers.
Stella Young and I have the same genetic condition—a condition that, in some cases, can be identified at the pre-embryonic or prenatal stages. Yet we have very different experiences of suffering and OI. Different people experience suffering differently. And the same person will likely perceive suffering differently at different stages of life. A robust twentysomething might look at a grandparent struggling with painful arthritis and some memory loss and think, “I never want to live like that, to suffer like that.” Sixty years later, that twentysomething might wake up every day feeling grateful that the only age-related suffering he must bear is some arthritis and a bit of memory loss.
Questions around suffering are often central when we discuss fraught bioethical questions around the beginning and end of life. Whether we’re talking about pre-embryonic screening for genetic disorders or assisted suicide, we end up talking about both actual and potential suffering, and whether great suffering limits and damages human life to such an extent that it is better for those who suffer greatly not to live at all. I think these are important questions (although I’m not sure they should be central). And yet suffering is such a slippery quality by which to judge whether a life is worth living; our experience of suffering is so dependent on our circumstances and personality and so much else.
In a Washington Post article, Mars Cramer describes his wife’s decision to ask a doctor to end her life after living for a number of years with a rare form of bone marrow cancer. In the Netherlands, where the Cramers lived, voluntary euthanasia is legal. One of the conditions allowing for legal, voluntary euthanasia is that the patient must be subject to unbearable suffering. Cramer asks,
What is unbearable suffering? It is an impossible question. The monitoring committees have given up trying to define it and adopted the view that the patient’s own judgment is decisive, provided the acting doctor is convinced of its earnestness and sincerity.
An “impossible question” indeed. For all their impossibility and complexity, I do believe that questions around suffering belong in conversations about both the beginning and end of life. But I also believe it’s important that we recognize two important facts about suffering. First, no two people will experience suffering in the same way and for the same reasons, and an individual’s notions around what constitutes “unbearable suffering” may change significantly throughout his or her life. Second, our culture tends to make the alleviation of suffering one of our highest values, if not the highest value, when we talk about moral decisions. The alleviation of suffering is an inadequate measure for moral decision-making for many reasons, including the highly subjective nature of suffering itself.
*Our attempt at PGD failed; I did not get pregnant. We went on to have two more children naturally, neither of whom inherited OI. You can read the entire story of these decisions in my book, No Easy Choice.