By the time it became illegal to deny my brother health insurance because he was really sick, most of the damage had been done. Years of inconsistent coverage and subsequent self-medicating had taken a big toll on his organs. He had really good insurance for the last few years of his life, but it was too little too late for his worn out heart.
Not too long before Paul died, we learned I was following him down the trail of inflammatory arthritis. Over the past eighteen months or so, I’ve been learning what it means to live with an immune system that attacks my joints. I’m lucky; when my hands swelled up and I couldn’t walk up the stairs without resting at the top, I had a pretty good idea what was going on. I didn’t have to suffer for years searching for a diagnosis as so many other people have. I got myself to a rheumatologist and we got busy trying to find medications that would get me back to something like my normal life.
We’ve done that. I have good days and less good days when it comes to managing pain and fatigue, but I don’t spend any time at all worrying about having rheumatoid arthritis. Lately, though, I spend a good bit of time worrying about having a pre-existing condition.
It seems more likely every day that one of the financial or regulatory “burdens” likely to be lifted in the rush to repeal the ACA is the requirement to provide insurance to people who are actually sick. I take two drugs to control my arthritis. One of them is Humira, which would run upwards of $2500/month if I didn’t have insurance and a “discount card” which brings my price down to a minimal copay. What insurance company in their right mind would choose to insure me if they weren’t required to by law?
One of the things I can do because I have good healthcare is play the mandolin. Last weekend the Guadalupe Mandolin Orchestra opened at a house concert by Lindsay Straw. My little group played three songs, ending with a Mozart tabletop duet, where Steve and Ken play the music from the top to the bottom of the page, and I turn the paper upside-down, basically playing from the bottom to the top at the same time. Somehow it all works out, and we reach the end at the same time. My medicated fingers flexed across the frets and we spent a cold, rainy night making music together.
Then Lindsay took over. She plays folk songs from the British Isles, and that night, all her songs featured women using their wit and their wiles to outsmart men and come out on top.
After the concert, she and I made plans to attend the women’s march Saturday morning. I haven’t marched in a long time, and honestly, I’d been a little ambivalent about going. I’ve been in the “peaceful transfer of power is a good thing” crowd, and the “let’s wait and see what happens next” frame of mind.
But I teach teenagers. If I know anything at all about teaching, it’s that what you don’t do teaches as loudly or louder than what you do. So while I hadn’t made firm plans to go to the march, I hadn’t been able to decide not to go, either. Friday night, listening to songs about women being smart, and strong, and powerful, I knew I knew I had to go. I had to go because New Mexico’s rape kit backlog is the worst in the nation. I had to go because I know teenage girls who don’t feel protected by their school. I had to go because there are young boys wearing “Not in my locker room” t-shirts who make me feel hopeful about the world.
So I went. I walked. I ran into old friends and old students. I found myself surrounded by thousands of people united by the simple idea that human decency matters, that using our voices matters. For a few hours on a cold, grey January day in Civic Plaza, ten thousand strangers created peace.
Then it was Saturday night and I went to a ceilli, an old-fashioned-let’s-get-together-and-make-music night. We sang songs like “Let it Be” and “Teach Your Children” and “I’d like to teach the world to sing.” For a few hours on a cold, grey January evening in a warm living room on Guadalupe Trail, a dozen old and new friends put our voices together and created peace.
So that’s how I spent Inauguration Weekend. I didn’t listen to politicians give speeches or watch wealthy people attend balls. I walked with strangers and made music with friends.
There’s one more thing about my pre-existing condition. I give myself a shot every other week with a “Humira pen.” It’s a simple process: you pinch the skin on your thigh or abdomen, position the pen against it, and press the button at the end of the pen to activate the spring-loaded needle. Then, all you have to do is hold the pen in place for ten seconds while the medicine rushes through a needle you never even see into your body. Simple.
The thing is, though, it hurts like hell. After the first few months, I started having a hard time getting myself to do it. I would get everything ready, position the pen, and then just sit there, unable to push the button. It was frustrating–I like to think of myself as strong and capable, and it seemed like such a stupid thing to be unable to do.
On the night I finally got frustrated enough to ask for help, Fred came in and stood near me. “Say ‘position, click, hold,'” I told him, a little mantra I had made up to talk myself through the process. “Click” was the signal to press the button, and the point I couldn’t get past on my own. With Fred standing beside me, I “clicked” on the second try. Now we do it this way every time. During the ten seconds of “hold,” I usually yell. Sometimes it’s a simple “Ow” or “man-o-man-o-man,” but sometimes, when the burn is worse, my language gets a lot more colorful. Fred stays calm while I yell, sometimes laughing with me, telling me that it’s only ten seconds, that it’s almost over. And then it is over, and we’ve done it. This one simple hard thing becomes doable when I’m not alone.
When I see Donald Trump speaking as the President of the United States, it doesn’t feel real. It feels like the voiceover at the beginning of the adventure movie where the demagogic dictator has gained power and plans to destroy the country with his evil plan. Grizzly bears are threatening the children at school, and at any moment, Harrison Ford or Liam Neeson or no, let’s make that Katniss Everdeen, is going to swoop in, vanquish the Grizzly King, and save the children.
I don’t know when or if coverage for pre-existing conditions is going to go away, but it seems both likely and imminent. I don’t know if we’re going to end up in an accidental war with China, or do away with the First Amendment, or commit untold atrocities in the spirit of nationalistic fervor.
I do know that whether or not I can get my Humira is not the most important problem in the world. I do know that if my fingers stiffen and swell and I have to stop making music, my friends will play on. I do know that, for as long as I can give myself shots, Fred will stand next to me and help me push the button.
And that’s the thing, isn’t it? Standing here next to each other, joining our voices–if we’re going to make it after all, I think that’s how it has to happen.