This day, 14 years ago, started out with my son looking up at me and saying, “I’m ready for this to be over.”
“Say the word, I said. “If you don’t want to do chemo anymore, just say the word.”
I was not ready for this to be over because I knew when this was over, he would be gone and I could never be ready for that. But we had been fighting for three years — actually for much longer than that because we couldn’t get anyone to care for him for years before that because no one would sell him insurance, so he had no access to the care he needed.
“No, I want to keep trying,” he said.
So, I got him in the car and we headed for Duke. As always, we headed east on I-40 and north on 146, and as we got to Durham, we passed the Mangum Street exit. He didn’t disappoint.
“Man gum,” he said. “I don’t know what that is and I don’t think I want to.”
Ask anyone who ever took him to a chemo appointment. He said it every time he passed that exit, and then laughed at his joke.
We thought he might have another few months. Chemo every two weeks might keep the cancer at bay for a short time. Every day — every moment — was precious.
But when we got to the clinic and he stepped on the scale, he had lost another two pounds. He was hovering around 102 pounds. The look on his face said it all. He really wasn’t ready to give up, but the chemo wasn’t helping and there were no more options. I would be bringing him home to die.
He thought maybe he could wait a few days, but the doctor told him it was time. He choked back tears as he said. “You don’t deserve this, Mike. You’re a good person and you don’t deserve this.”
On the way back to the car, Mike looked at me and said, “So, what do you think I have left, maybe two weeks?”
“I hope it’s more than that,” I said.
But it would not be.
His roommate and best friend, James, had cared for him, changing his dressings, making sure he was comfortable, trying to get food into him. But James feared coming home and finding he had died, and he didn’t think he could cope with that. We decided to bring Mike home and call hospice, and James would come to Asheville to be with us. Janet came too because even though they’d been forced to split so he could get Medicaid, they still loved each other.
We got him settled in and had a Hospice intake nurse scheduled for the next morning. James and Janet were just a couple hours behind us with the rest of Mike’s few belongings.
I remember every detail of this day in 2008 because I was very deliberate about remembering it. Time was so short and I wanted to savor every moment I had left with him.
On this day 14 years ago, we would have 14 days left with him. I couldn’t imagine life without him, and in some ways, I still can’t. Everything reminds me of him. I had hoped these anniversaries might get easier, but they haven’t. In fact, it gets harder every year as the echo of his laugh fades and his scent is erased from the leather jacket he wore everywhere.
And then I think about the million or so American families who have endured this same injustice from lack of access to health care and I’m furious that we won’t fix this. It’s not that we can’t, it’s that we won’t. It’s a choice to deny millions of people access to health care. It’s a policy choice to turn the other way and pretend we’re a decent, moral society. We are not.
On this day 14 years ago, I had to face the fact that my precious son was dying and there wasn’t a damn thing I could do to stop it, and now I have to live with the result of our backward, cruel and immoral policy decisions.
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