Twelve years ago today, as I was driving into work, I got the phone call that would change my life.
I can still hear his voice. “Mom, the cancer’s back. There’s no cure. The most I can hope for is a year.”
There wouldn’t be a year. In fact, six weeks later, to the day, he would breathe his last.
I can’t describe my feelings that morning — the same feeling I have today as I re-live the trauma of learning there would be no hope for my son to realize his dream of going to law school to become a legal aid attorney because “poor people deserve a good lawyer, and I plan to be the best.”
I couldn’t cry because I had to get into work, and I knew once I started allowing myself to feel what was happening, I would lose control. My husband would be in the office a half hour after I got there, so I would say nothing to anyone until I could talk to him. If I spoke to anyone about it, I knew I would fall apart.
I sat down at my desk and shuffled papers, looked at my schedule, checked my phone for messages, checked my e-mail. None of it registered; I had to just go through the motions until my husband got there.
But when he did, and I walked over to his desk to tell him, I fell apart. It was all I could do to stay on my feet. I couldn’t breathe except to take in air with each wracking sob.
I don’t remember much about the next few minutes except that my colleagues stepped in to hold me up while my husband went to tell the managing editor that we were leaving to go to Cary and be with Mike. The editor never came out of his office to speak to me.
This day begins the most terrible six weeks of my life, re-lived now for the 12th time. Each year, the pain of losing him comes back, as fresh and new as it was 12 years ago.
The most painful part of it all is that it never should have happened. If he’d had access to an annual colonoscopy, he would still be here, probably a legal aid attorney working with people in Durham. I imagine him in the fight to end cash bail, working to get people who are awaiting trial released from jail so they wouldn’t lost their jobs, housing or children.
If we had a health care system like those in the rest of the industrialized world, he would still be here, still be a jackass who loved nothing better than a good practical joke, still cooking gourmet dinners for all of us, still complaining about bad drivers and traffic jams … still Mike.
But we have the most backward system anywhere in the so-called developed world, a system that killed 45,000 or more Americans each year in 2008 — a half million since it robbed me of my son.
The Affordable Care Act stemmed the tide a little for a few years, but we made the mistake of leaving insurance companies in charge, and they have perverted the system to their advantage with $6,000 deductibles. According to ehealthinsurance.com, in 2018, the average deductible was $4,328 for an individual and $8,352 for families.
Nearly three-quarters of employer-sponsored plans have deductibles of $1,500 or more, and the average family spends about $20,000 per year on health care costs. With more than 40 percent of Americans saying they can’t pay a $400 surprise bill without borrowing money, it’s hard to imagine how any but the wealthiest Americans can say they love their insurance plan.
That’s the “progress” we’ve made toward a more just and equitable health care system in the 12 years since I promised my son I would fight for access to health care for every human being. In fact, a new study from Yale University places the annual death toll at 65,000-plus, which means an American dies once every eight minutes.
I remember pieces of that day so clearly. I remember the shock of seeing how much weight he had lost in the few weeks since I had seen him last. I had trouble catching my breath.
I remember my daughter-in-law coming over to Mike’s place (they had been forced to split so he could get Medicaid here in North Carolina) and I remember his best friend and roommate, James, telling me of his fear of coming home from work and finding Mike dead.
After we had spent a couple hours with Mike, we checked into our hotel. My husband took a nap, and unable to even think about sleeping, I walked over to the electronics store across the street from the hotel. I was looking at photo printers, wondering how to connect them to my computer. As always, I thought Mike would be able to answer any questions I had about it, and then I realized he would be gone soon, and I almost fell to the floor. I don’t remember the walk back to the room, although I do remember how cold it was, and that I didn’t have a warm jacket with me.
I went to Target to get an inexpensive jacket — a red Converse zip-front hoodie — and I saw an exasperated mother with a fussy toddler. I wanted to stop and tell her how precious that child was, even though he didn’t seem so at the moment. I wanted to tell her to hold him close and love him because he could be taken from her by a system that preys on people rather than cures them.
I kept walking instead because I didn’t want to look like a crazy woman.
I’ve been working on this a dozen years and we are no closer to health care justice than we were when my son’s heart stopped.
I am the family member of just one of more than a half million corpses from this carnage, and every one of us has to live with this indescribable pain. I wouldn’t wish it on anyone — not even on the policymakers who allow it to continue, unabated, or to the corrupt insurance company executives who bribe policymakers to leave them in charge of such an immoral system.
I want desperately to see change. I want to see an end to these unnecessary deaths that rip families apart day after day after day — one every eight minutes.
So, stop telling me we need to get there gradually — it’s been too gradual already, and for every eight minutes we delay, another body is added to the count.
You want to call yourself “pro-life” or even moral? Stop supporting politicians who say we can’t afford to care for everybody. We can afford it, and we must.
It is 12 years past time for my precious son, and my pain is as terrible today as it was on this day 12 years ago.
I will never get over it.
I will never move on, not until every human being has full access to quality care.