As a society, we often talk about love in broad terms. We boast of its seriousness and devote time and money and art to studying every inch of its emotional breadth to try to reach an understanding.
However, few of us really talk about the mundane in the center of gravity of love. I met John Sandeen as a college intern in the late 1980s; we went on dates; The world became indelibly saturated, like an over-exposed photograph of a summer’s day. For me, falling in love with him was as natural a conclusion in my life as the decision to breathe. You breathe because you cannot live without it; I married him because I could not imagine life without him.
It was already decided that I would marry him. And when we got married in 1991, it was also certain that he would die.
John was diagnosed with HIV on Thanksgiving in 1989. He asked me to drop him then. I said no.
The decision came easily, because that’s what love does: It simplifies the most difficult decisions into one monosyllable. “No.” Of course I won’t leave her. Of course he would die anyway. Of course I loved her enough to stay.
In that sense, I guess I was lucky that my mom was a hospice nurse. Death and dying were as casual topics of conversation as birth and marriage, and it always lingered in the back of my mind, in the awareness of our final destination. After that — like most teenagers — I approached it with the casual detachment of someone who thought they’d never have to face it again.
It wasn’t until much later that I realized that the minute I met John, I was facing death. One of the great tragedies of this story is that HIV was ravaging her body even before her diagnosis. AIDS was then punishable by death, and it was common knowledge that everyone who received a diagnosis died within two years. Available treatments were far superior to refusing treatment altogether in terms of their toxicity and side effects as well as their efficacy.
Life is surprisingly mundane when caring for a dying person, but that’s only because I had to forcefully suppress the most powerful of emotions, like anger and grief and love, in order to make my family function. We were a young couple with one child, Hannah and John’s two sons from a previous marriage, and HIV was a part of the family.
Every day, I would wake up, make breakfast for Hannah, and take care of her baby. I would attend to John’s needs with his hospice caregiver, go to work, and then come home to feed Hannah. I was numb I was in love. I was a mother, a caregiver, a widow with a husband.
One day, a hospice worker brought her a bed, and I knew I would watch her die in it.
John would have good days – days when he was lucid – and on those days he could manage a sentence or two, maybe sit up on his bed if we were lucky. In those days, he would try to play his piano or guitar, or listen to music, his favorites Bach or Neil Young. I realized that when the music stopped in our house, it had lost its original existence. But he was still there physically—his breathing shallow, lines of pain etched across his face.
One day, when the haze of fever that hung over his broken sentences lifted long enough for him to speak clearly, he asked me to kill him.
You have to end this pain,” he whispered. “I can’t take it anymore.”
I was 27, and the words hung in the air like stagnant and eerie dampness. I knew what he wanted – to die clearly, to know that he had told me and Hannah and his sons everything he needed to say before he died. He wanted to die with the dignity he had when he was healthy; He wanted us to know that He loved us so much that we should not see Him die. And I legally couldn’t give it to him.
For John, the most basic tasks devolved into agonizing negotiations with his own body for energy. He couldn’t keep Hannah any longer. He could not play a melody on his piano. After some time, he could not take care of himself.
To have these, your most basic dignity taken away from you is humiliating. For John, who is by far one of the smartest people I know, it was devastating. He was already ill, but AIDS ravaged him to the skin and bone. His mind, the thing that had captured my fascination when we first met him, began to disintegrate and he could only speak in short sentences.
John deserved to die on his own terms. AIDS took him away from her, and so did laws preventing him from seeking medical help in dying. But he left me with one last gift.
Early in the fall with John, we worked together to plan my next steps—applying to social work graduate programs. He was restless and oddly pushy, which was his opposite, insisting on reading my essays and helping me with my application prep work. Eventually I realized that this was one of the last tasks he had to complete before leaving this world. He died in December 1993; My graduate school applications were due in January 1994.
Two and a half years later, I became a social worker, driven by the ghosts of his last will and my need to give to others what I could not give to him. That’s how I got involved with Death With Dignity, the national organization fighting for medical aid-in-dying laws with people like John, where I’m now CEO. I have dedicated my life to creating an environment for dying persons to determine the terms of their own death, so that they can maintain their dignity while remaining healthy.
Twenty years later, Iowa, the state where John died, still does not have a “death with dignity” law on their books, but we have been successful in passing the right to die with dignity in 10 states. And this year, states including New York, Massachusetts, Nevada and Arizona have had the opportunity for state legislatures to pass their own laws on death with respect.
Fighting for everyone’s right to die with dignity was an easier option. A decision to honor the life of the man I still love – the man I refused to give up on in 1991. In a world where AIDS is no longer a death sentence, there are still stories in which the terminal illness interrupts love’s course through life. In those cases, love demands a way to stay – and this is my way of paying it forward.
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