When I first read about the murder of the United Healthcare (UHC) CEO, I’m embarrassed to admit that my darker angels emerged—I actually laughed out loud. I promise it only took a few seconds to remember myself, and when I did, I closed my eyes to send well wishes to his family. I don’t believe in violence. I don’t believe in revenge, or even really in punishment. I’m more of a restorative justice kind of person. My better self knows for sure that one individual, even the head of one of our largest healthcare organizations, isn’t at fault for our fundamentally broken healthcare system and he did not deserve to die.
What I do know is that the effects of that broken system on individuals like me, who need chronic care, are devastating. According to Katie Willard Varant, “Corporate denial of care creates anxiety, exhaustion, helplessness, shame, and anger for people living with chronic illness.” In other words, for chronically ill people, the experience of trying to access the care we need makes us sicker.
I don’t know exactly what the shooter was thinking, but the words on his bullet casings—“deny,” “defend,” and “depose”—give us a clue. He or someone in his life has been denied the care they need. Maybe lifesaving care for a terminal illness, or life-changing care like the type I am waiting to hear about even as I write this.
Back in September, I undertook a trial for a spinal cord stimulator, an implanted device that sends electrical signals along the spinal cord to calm and soothe unnecessary pain signals. The effect of the trial was frankly astonishing. During those glorious seven days, I glimpsed another life—one without the draining, constant ache and distraction of pain, pain, pain.
For the first time in as long as I can remember, I woke up without a panicked reach for my pain pills. I could think clearly, and work felt easy. At the end of the day, I felt like cooking dinner, no problem. I scheduled a busy weekend. I poked my way through the farmers market and bought heirloom tomatoes and homemade peanut butter. I went to a women’s retreat where we sat on the floor on cushions and even did some dancing. After that, I sat at the table to play board games with friends, and the next morning I accompanied another friend to church where I sat on a folding chair for a full hour and still had the energy to go grocery shopping. In my normal life, I can choose one or maybe two of those activities, and then I pay the price.
When the trial ended, my pain came back at full force and it felt worse than it had in a long time. The nurse said it was probably both because I had challenged my body so much and because of how my perception of the pain changed after it had been alleviated for even just a few days. What I felt was the extent to which what I think of as a “normal” amount of pain is in fact very, very difficult to live with. Chronic pain is a soul-sucking slog through forbearance and fake smiles that nobody should have to tolerate.
My doctor was so excited about my results that there were tears shining in her eyes. She immediately submitted the trial results to insurance for approval of the real thing and we started talking about weaning me off my pain regimen. I felt like there was a light at the end of this tunnel I’ve been living in for so long. The week went by, and then two.
My doctor said perhaps the delay was because I had honestly disclosed on some questionnaire that I can walk a mile. Turns out that might be exclusionary; according to their disability scale, I may not be disabled enough to get the thing covered. My pain doc drafted a supplementary note explaining that my disability affects my life mostly by making it difficult for me to sit and stand. Another week passed.
In the meantime, my family had to go on COBRA, meaning we were supposed to receive the same healthcare coverage, just outside of the employee group we’d been in before. We did everything right, but it turned out that my case for the stimulator was kicked out of the review queue for lack of coverage at the beginning of October.
Seventeen phone calls and a hundred emails later—“Let me check with my manager…”—and my case was back at square one. At least at that point, I had readjusted to the pain, but I was still so eager for the stimulator I was finding it difficult to concentrate on anything else.
In November, as I continued to call every day and be told that my case was pending, it wasn’t until I took my son in for his own doctor visit that we were told that our November premium had been paid but the COBRA administrator hadn’t contacted the COBRA office at UHC to alert them to that fact, so once again my case was withdrawn from review for lack of coverage. In November, it took five full workdays and countless hours on hold trying to get Peter to talk to Paul to take care of this Byzantine bureaucratic problem. Now it’s December and I still don’t know if I’ll be able to get this life-changing procedure. The deepest irony is that I am unable to work full-time, so I can’t afford the stimulator without insurance. But if I had the stimulator, I’m pretty sure I could work full-time and save up for it.
All this to say, when I read about the murder last week I, like so many other Americans, immediately understood the motivation for, if not the execution of, such a heinous crime.
So, what now? I breathe. I do my physical therapy. I rest and limit my activities and do all the things I do to take care of myself. I call all the people every day or every other day to ask, “Did it get approved?” and I try not to take it personally when they get frustrated with me. They know it’s not my fault I need this thing, and I know it’s not their fault they are cogs in a broken system.
I’m fighting for what I need at the same time as I struggle with my shame for having such a need and my anger at a system that is not designed to serve me. Of course, I’ll do it in a way that doesn’t involve violence. And my heart goes out to everyone who, like me, is so freaking sick of that on-hold music they could scream. The next operator will be with us in ___ minutes.