Will died of aspiration pneumonia, a complication brought on by x-ALD not long after 9:30 PM on a Monday. His favorite football team had won the AFC championship the day before and he wouldn’t get to see them win the Superbowl two weeks later. He loved to play pool and read Stephen King novels. He hated peas and loved chocolate chip ice cream. He was a fanatic about grilling and would drag the grill out of the shed on the coldest, snowiest day of the year to cook steak and veggies. He was a better friend than most of his friends deserved, gave the shirt of his back to most of them without asking for anything in return. He started his collection of states’ quarters for his daughter before she was even conceived – that’s how confident he was that he would be a father someday. He was a horrible handy-man but a great landscaper.

He never really knew his daughter, nor she him, but he loved her as much as he could before he forgot who she was. He spent the last two and a half years of his life cut off from everyone he loved and who loved him. He was just 32.

There is nothing else to say beyond – I loved him and he loved me.

Two characters in a movie Rob and I were watching the other night were discussing how to kill off the main character in a book that one of them was writing. They were sitting out in the rain because the author was apparently the method version of a writer. She was soaked to the skin and her assistant remarked that she could end up with pneumonia to which the author replied,

“Pneumonia is an interesting way to die.”

It’s not though. I’ve had pneumonia. Twice. Once when I was eight and was sick for two solid weeks between my birthday and Christmas. The second time was in 1994 after I had spent Thanksgiving in Brooklyn visiting my oldest friend, whom I’d known since the fifth grade. And of course there was that second to the last weekend in January of 2006 when I spent nearly 72 hours watching my husband die from it. 

He had a genetic metabolic disorder called Adrenoleukodystroply. For years it had slowed and then finally stopped his body from producing an enzyme that it needed to metabolize long chain fatty acids. As the acids built up his immune system kicked into action to rid his body of what it perceived as a threat. Slowly at first and then faster and faster, his immune system began stripping nerve endings of their protective coating and scrubbing away the dura matter that protects the brain, allowing it to send and receive messages. When he began to have trouble swallowing as a result of the faulty connections, he would sometimes inhale food or water particles. Eventually this leads to what they call “aspiration pneumonia”. It’s not an interesting way to die. 

Is there an interesting way to die?

This last week I have been reading the blog account of another widow about the last days of her husband’s life. It is the third anniversary of his death today. I am not sure why I have felt the need to do this as she and I are not friends. In some ways I feel a kinship though. Her younger son is nearly the same age as my daughter. She feels, as I do about Will, that somehow she missed important signs that might have saved her husband’s life. Her story, and it’s hers now really not his at all, has pulled up pieces and scraps of memories that I had l stopped dwelling on. But it is not just her. Watching Rob brace himself for his first anniversary has been difficult and brought back those feelings of inadequacy because I really can’t help or make it better. The fall like feel in the air that comes more and more often, reminding me that school will start soon and I am not teaching this year. 

It’s frustrating. Not being able to read or watch a movie or listen to a song that doesn’t give me pause or stir the pot of memories, not all bad, but all connected just the same. I am not the same, and ironically this has made my square shape sharper and the round holes of widowhood that much narrower. 

At the end of the movie, the author has a change of heart and allows her character to live. She feels that someone who would be willing, as her character – a real person it turns out –  is to sacrifice himself for another is someone the world can’t afford to lose. But the real world, the one I live in, has let go of so many real people who given the chance probably would have done anything for those who loved them or even stepped in front of a bus to save a stranger. 

In the movies there are interesting ways to save people from dying too, but not in real life. In real life people just die, and some people mourn them for the rest of their lives and at the expense of their lives. 

And others just miss them. Terribly. Deeply. Forever.