Side Effects

There’s a quip about the cure being worse than the disease. No need to tell me that at 2 a.m., when my child is keening with stomach pain. We’re in the wilderness now – trying a relatively new drug not tested on children, for rare tumors with no proven treatment path. My kid is filling up the bingo card of side effects. And each day, I am supposed to hand her the drug that does this.

My husband and I sit up with her for the next two hours, hoping that the cramping recedes quickly. Eventually, the pain passes and she is finally able to fall into a deep, restful sleep. I am wide awake. I’ve sent a message to her doctor. This is untenable for the long term. Any ideas?

canstockphoto10766394Now that she is comfortable again, I am introspective. What am I becoming? I don’t sleep well anymore, even when a night is uninterrupted. I have copious notes, dates and times of this medicine, that reaction, what works, what didn’t. I’m on constant alert, vibrating with anxiety and now, caffeine. My stress hormones have cozied up to my menopause hormones, so every five minutes, I flash into a drippy sweat.

I’ve read every article and study I could find about the drug, the tumor, the side effects. After reading about one side effect treatment regimen, I asked the doctor if we couldn’t try a particular drug. Reading the same article, the doctor said sounds like it might be an option and wrote the prescription. Criminy, they realize that I only have a liberal arts degree, right?

But this is the speed of science. As quickly as one protocol gets established, four more options pop up. That’s a good thing, but it means everyone has to be read in, constantly.

canstockphoto17182715.jpgWhile I consider myself a relatively intelligent person, I’m no genius and the fact that our role as parents in her care is so outsized, really freaks me out. It has served me well to stay in the moment, except in the moments after a crisis has passed. Groundless again. My brain doesn’t know whether to stay on high alert or to relax. I am afraid to relax, as if my tension were a shield against calamity.

I think about the beginner’s mind from Zen Buddhism. If I looked around me, with fresh eyes, at this very moment, what do I see? My daughter is sleeping well. As is Pete, our old tomcat, with his little snores on the floor, near my feet. Snow is falling outside, muffling the city sounds. I’m tired, but healthy. The house is warm and smells of coffee and last night’s stew. My husband is able to work from home after the long night. I explore this moment, writing here, grateful that I still can. Open your eyes. Breathe.

I was thinking about advice on recharging phone batteries. With lithium-ion batteries, the lifespan of the battery doubles if you partially charge and discharge the battery. Then there’s parasitic loading – when you are using an item while it’s charging. It can induce mini-cycles, causing part of the battery to deteriorate at a faster rate. The writer in me wants to wring a metaphor from it.

canstockphoto2478779.jpgBeing a caregiver or a parent can be like this. You have to keep going, no matter how low your battery is. The only protection against deterioration is finding the time when you are only charging. The moments between crises have to be more than just time when bad things aren’t happening. This is tricky – the space between shaking your fist at the sky and noticing how beautiful it is. Enjoying the buoyant, cool water just before you feel like you’re drowning.

So this morning, I practice. I fold laundry at the kitchen table and watch the snow fall. I listen to Dar Williams sing “After All”. You catch your breath and winter starts again…

and the long night falls away.

 

 

Anxiety Raccoons

I’ve been eating a lot of anxiety lately. Family members are in hospice. A friend is having some troubles. My child is getting ready for a big audition. The news says that the people in charge would like me to sit down and shut up and do what I’m told, and that compassion and empathy are character flaws in weak, elitist snowflakes like me.

canstockphoto2260275Anxiety, like guilt, is one of those garbage emotions if not quickly followed by action. Sometimes that action is a mental one, like carrying your fears to the peak of possibility, playing the “what if” game. What if my daughter, despite all her efforts, doesn’t get into the orchestra? What if my friend’s family is ripped apart by a careless system? What if my country continues to drift further and further away from the things I value? What if religion is the law of the land, guns are diplomacy, and women are forced to be baby factories?

Sure, it sounds irrational, but that’s the point of playing what if. All that is required is an imagination and to be surrounded by blaring media outlets that suggest we are on the brink of civil war with our neighbors, literally and geopolitically. Anxiety is exhausting and demoralizing and sometimes we don’t even know how much of it we have until events resolve themselves.

I went to bed anxious about that raccoon climbing a building in St. Paul. The news, this morning, that she’d made it to the roof made me start crying. I’ve realized that I’ve been clenching my jaw all week, that I’ve been carrying this tension in my neck and shoulders.

canstockphoto417532I wrote a post about suicide over the weekend and it weighed on me to have it out there. I write freely these days, mostly unashamed and not embarrassed about my vulnerabilities and failings. But I wrote about my parents and that worried me. It’s hard to tell my story without revealing theirs. My mother eschews all technology and will likely never read most of what I write. She’s always been forthcoming about her own flaws – maybe that is where I learned it from.

It also made me think about how mercenary I am about my life these days. Have I reached the point where nothing is sacred, nothing is private? Have I relied on my weird little life to make me this kind of memoir-ish writer that will never be anything else?

At some point, when the cacophony of anxieties reaches an overwhelming level, I yell at myself enough already! I sit down and make a list of everything that worries me, from the monumental to the petty. There are pointless, irrational things like what if I die before I get published (um, I’ll be dead, it won’t matter) to big things like what will retirement look like? (the same, just me, a lot older).

canstockphoto36537604Writing is all about giving the world some organization. I’m great at organization. Labels on boxes (though not on people) make me happy. When I write things down, I am emperor, strategic commander, philosopher, and tactician. Ephemeral ideas become these manageable, concrete things in ink. Anxieties become what they are – silly or issues on which I need to take action.

I am persistent about facing things now. I haven’t always been. Like a lot of people, I can use compulsive activities as bandage on the rawness of anxiety. At my age, though, and in my circumstances, they feel like tired reactions, done with an eye roll and a laugh of regret. Those few moments of relief after stuffing my face or making a compulsive purchase disappeared a few years back. Now it’s just reaction, habit, another problem to be fixed.

When I thought of being older, I imagined that I’d be this calm, wise, centered person who let things roll off her back – that my persistence and tortoise-like thought processes would serve me well. And yet here I am, preparing to make another list of things that keep me awake at night. I am still dealing with some of the same anxieties that I felt when I was 15 years old. 4,037 lists later.

canstockphoto52534727.jpgThere’s no great lesson in this, I suppose, except to say that there is value in persistence and that you use the skills at your disposal to make life manageable. The trick is to know what those skills are, when to rest, and when the only way forward is up.

This was a lazy stroll into “raccoon as metaphor” land. You’re welcome.