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Marissa Moss
Marissa Moss
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Death & Dying

Breaking the Last Taboo

After my husband Harvey was diagnosed with ALS, the first thing we had to do was face the horror of the diagnosis ourselves. That was hard enough, but even more difficult was telling other people. There's a stigma, a shame that clings to catastrophic illness. As if those who get sick deserve it somehow. It must be something they ate (or didn't eat), exercise they did (or didn't) do. There's a judgement involved somehow. Perhaps this is human nature, a way of protecting ourselves from the horrors that happen to others, but when you're the one suffering, it adds isolation to a tough situation, just when you need your friends most.

As Harvey, my husband, got worse, I tried not to judge people. It's hard to see someone as graphically weakened as he was, hard to see someone who's clearly dying. Nobody likes to be reminded of their own mortality. Beyond that, friends and acquaintances often don't know what to say, how to be helpful. People are so afraid of saying the wrong thing, they say nothing at all, which is just as hurtful.

So here's what NOT to say. Don't soothe that everything will be okay. That denial of one's bleak reality is hurtful. It's a refusal to recognize what's happening, an optimistic cloaking that pretends the illness isn't real. When you hear those words, you feel erased, not supported.

Don't say that it's all for the best or God's will or part of some divine plan. That's like putting a bow on the ashes of a burnt-out building and pretending it's okay somehow. Nobody wants to be told that dying is a blessing.

What you can do is ask, “How are you today?” Meaning, this minute, right now. Just being with someone who's sick, acknowledging their fear, the difficulties they're facing, is validating and comforting. And for the partner of the dying, ask how they're doing, too. Being a care-giver isn't the enobling work it's portrayed as in Hollywood. It's hard, soul-wrenching labor. Care-givers need support and help, too. Not the social shunning we often receive. We all want to feel seen and heard, not invisible. Yet when you enter the land of the very sick, somehow you're shunted across a border, away from normal society.

I recently went to see a close friend who is dying from prostrate cancer. Peter appreciated simply being sat with, feeling like he wasn't alone, sharing stories. And so did his wife, who said friends would often bring meals, but when she'd urge them to stay and eat with them, they'd rush off, not wanting to face the awkwardness of what to say at such a dinner. Sharing memories is a good place to begin. Expressing appreciation for what these friends mean to you is another. Everyone wants to hear their lives matter. That's an easy gift to offer our loved ones before they die.

Harvey didn't want to tell his family, his colleagues, his friends about the ALS. Sadly, he was right that many of them stopped talking to him, as if his disease was catching. Our sons, 14, 10, and 6 at the time, also didn't want friends and teachers knowing. Nobody wants to be the kid with the dying parent. That stigma is so real, that when applying for college, our oldest filled in applications as if his father were still alive. Even his friends and roommates didn't know about his father's death.

The younger two boys did tell friends. And perhaps not surprisingly, they both had good friends in high school who also had to deal with a dying parent. Sadly, it's not as rare as we might think for teens to lose a parent. For Elias, our middle son, the friend, Luis, lived alone with his single mom, so he was losing his home as well as a parent. At the end of her battle with breast cancer, as she lay dying in the hospital, Luis called Elias to be with him for those last hours. Elias didn't hesitate, but stayed with his friend until his mother breathed her last. He told Luis that this was a good death. Luis could say good-bye to his mom and tell her how much he loved her, and she could do the same for him. That was a tremendous gift, one Elias wished he'd had with his own father.

Asa, our youngest, could help his friend Taylor, whose father died from a brain tumor. Taylor felt enormous guilt at the relief the actual death brought him, but Asa reassured him that was understandable. Nobody wants to see a parent suffer, and nobody wants to live in a house cloaked in the tension of dealing with dying. It is a relief when somene who has been fighting a horrible disease dies. Which doesn't mean the grief is any less deep, any less intense. You can mourn and still be relieved that the worst suffering is over. Asa could tell his friend this from the integrity of his own experience. It was exactly what Taylor needed to hear.

Death and dying aren't easy, but we could do much better as a society at dealing with both. We need to stop making death such an isolating experience. We need to talk about it more freely. And we need to stop shaming and blaming those suffering from catastrophic disease. “Death cafes,” where people get together to talk openly about dying, their fears, hopes, and plans, are one way to start the conversation. But even without organized gatherings, we will all know someone experiencing serious illness or dying. That's the time to reach out, to be there, and to listen. It's not as hard or as scary as it seems. It just takes patience and a willingness to witness someone else's pain. That's a small thing to do for those we love. A small thing that can make an enormous difference.

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About the Author
Marissa Moss

Marissa Moss, a graphic novelist and writer, has written numerous books in multiple genres.

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