Aja McCullough

The defenestration of blog

Fuck.

Fuck. It’s about the only word that makes any sense right now, at a time when nothing else seems ok. 19 days ago, we learned that my mom’s chemo didn’t work. Well, it did a little. In some places, the cancer had lessened. In others, it had grown. There weren’t many options for treatment – at least none that had a great chance of success. 16 days ago, the oncologist at Mayo Clinic confirmed what the other had said. One option was to submit blood and tissue samples to test for possible mutations, which might or might not open up the wide world of experimental drugs. The testing would take 30 days. They drew the blood; we signed the paperwork for the testing.

Two days ago, my mom started hospice care.

It’s not that any of this is completely unexpected. We knew it would come at one point. But the rapidity is just… flooring. One week, we were going for a walk by the lake. The next, we’re choosing to take a month off from treatment to complete the genetic testing and let my mom build strength. Now, I’m awake on her sofa at 2 am, watching and waiting with twenty medicine bottles in hand, waiting for something to happen, for her to sleep or throw up or tell me she’s in pain — the things that have consumed her life for the past two weeks. It’s happening too fast. You can never really prepare for it.

—

Every loss in my life has made me both more empathetic and less sympathetic. Empathy is easy, because everything I see in others evokes my own feelings and memories. Sympathy is harder. It isn’t so much about the feelings themselves, but the sense that the person has somehow been wronged by the world. If someone loses grandparents who are in their 80’s, it’s hard for me to feign sympathy. My thought process looks something like this: Terribly sorry that your loved one lived a long and fulfilling life. K bai. Realistically, I do understand that sort of loss, because I’ve been there. But I can tell you from a much wider experience that it’s nothing like a long illness or sudden, untimely loss. Those cut much deeper.

There’s also the overwhelming sense of injustice. If you’ve never experienced the loss of a close loved one (and I mean close), I find it very hard to give a goddamn about whatever upsets you. Boyfriend break up with you? Boo effing hoo. Stressed about work? Tough nuts. If you haven’t experienced a significant trauma, it reinforces the fact that the world is an unjust place. It also means that I will find it incredibly difficult to talk to you, or understand your world or your motivations. What do you even do with your nights? Why are you enjoying yourself when you should be weeping into a glass bottle of wine? Also, why aren’t you in the fetal position right now?

Then, of course, there’s ‘Why me?’, and just as important, the ‘Why not him/her/them?’ Why did the mean girl’s mother recover from ovarian cancer and not mine?  Why my mom, and not someone who is famously an asshole (like, for instance, the douchenozzle who’s in charge of our country)? Why should our family, which has been through so much already, have yet another terrible blow? We’re good people. Or, at the very least, there are much worse people out there.  And hey, why not pick on someone who has two parents? I just have the one.

Sure makes it hard to believe in … much of anything.

—-

Last year, I saw a counselor who thought that my symptoms were more consistent with PTSD than clinical anxiety. Either way, I do have to say that it’s much harder to control anxiety when the things you’re anxious about keep actually happening.

Some time in a hospital bed

If you know me well, you know I hate hospitals. I’ve spent a lot of time in them, but never for myself, and that’s the main cause of my hospital-related anxiety. They trigger all those thoughts – something bad is about to happen. Our family isn’t going to be able to afford this. We’re going to have to go to another funeral.

This time, though, it was me in the hospital bed. After coming home from a late Friday night session, I went to bed. But I felt strange. My hands, feet, and mouth were getting numb. And as I sat up to try and explain it to Eric, I found that I couldn’t form words. I was slurring. My brain could think of what I wanted to say, but my mouth physically couldn’t form the words. He called an ambulance. I went to the emergency room, had 3 MRIs, and was admitted. A neurologist diagnosed me with a complex migraine, showed me the white matter lesions that ornamented my brain scans, and sent me home Sunday afternoon with pain medication and a recommendation of rest.

So I rested. I slept. I stayed home from work. I missed lessons. I was super careful at rehearsals.

And then, slowly, I started doing all these things again. All the while, my symptoms were exactly what people describe with a mild concussion. Forgetfulness. Lack of concentration. Headaches. I booked an appointment with a second neurologist, who suggested that my symptoms were stress-related.

There isn’t much of a point to this post, really, because I’m still not entirely sure what happened or why. It’s harder not knowing sometimes. I’ve just recently felt like myself again – able to hold on to thoughts for more than a moment at a time; able to get through a few weeks without a headache; able to get through a day without napping. And that’s about it.

Scary Things are Scary Part 2: Privilege

A while back I mentioned that one of the scary things I’ve done recently is leaving the safety of full-time employment to spend more time with my mom while she’s dealing with ovarian cancer and commit to writing more seriously. It certainly wasn’t the wisest thing to do; I was making good money, had a director title, and was making a lot of headway on paying down our debts.  I talked to a lot of people in the course of making this decision, and invariably, they would say, “Follow your dreams!”

While I obviously agree with this advice in principle (and ended up following it), there’s a certain privilege inherent in dream following. I’m incredibly fortunate to have a husband whose income could sustain us while I was searching for a part-time job (and still sustains our ability to pay the mortgage and do things like eat). Because of my employment background, I was able to find work that pays well above the going rate for your average nonprofit part-time job. We’ve been responsible, took out a reasonably-priced mortgage and car loan, and have paid off most of our student loan debt. So in some ways, one can look at me and say I’ve worked hard and pulled myself up by my bootstraps and earned what I have. Cool.

The truth is, though, a lot of it has nothing to do with hard work or responsibility. First of all, I’m white. Let’s just get that out of the way. I came from a low-income family, but it was one that valued education, and that could reasonably pass for middle-class. My mom read to me when I was little and pushed me towards college. I got need-based grants and scholarships that allowed me to go to a highly-ranked school and not drown in debt. So far, I’ve never had to deal with unmanageable hospital bills or a sudden loss of income. I’ve never been arrested or evicted so I’ve had a pretty easy time finding housing, getting credit, and passing background checks.

It’s not that I haven’t screwed up. I’ve made plenty of mistakes stemming from anxiety or depression or laziness or apathy. But I’ve had second chances and good luck.  I have a job that I love because I asked the right people the right questions at the right time.  Whenever I see another inspirational Pinterest quote, all I can think of are the people who can’t risk making uncertain choices. This (along with not being a giant dickhead) is one of the major reasons to advocate for an expanded social safety net. A low-income single mother would be scorned for working part-time to spend more time with her children, while my decision was celebrated. And that is grade A bullshit.

A Burning Sun Part 3

We could not comprehend it when the Sunfire came. It was a normal day. Mundane. I had taken our sheep out to pasture in the fields north of the town when flames burst red in the sky above the foothills that hugged our town to the south. With the flames there came a great roaring wind, a blast that toppled trees and lifted my body off the ground, tossing me aside like a rag doll. Then, just as quickly, it was gone, and I stood and ran back to the village as swiftly as my feet could carry me. As I neared the edge of town I could not hear, but began to see the others running through the streets, mouths open in silent screams, bodies naked. Their clothes had been burned off, their skin melted away from muscle and bone like wax on a candle. They ran without purpose and without destination. There was nowhere to go. They could run or they could lay down and die.

I looked down at myself, at my hands and body and feet. I felt at my face and hair with my fingers. My skin was still there, but there was blood on my arms. My clothing hung in tatters, and my breast was exposed. I thought it very strange that my breast was exposed, that so many others were naked, and it didn’t seem to matter. This should be wrong, I thought. My ears began to ring, and then I could hear again. I silently wished that I couldn’t.

I had never known that such sounds could come from human mouths. Agony hung ripe and heavy in the air. It was a round and unbearable thing, and it filled my ears as I stumbled disoriented toward my home. The streets were littered with the ruins of toppled walls, and as I moved southward, the destruction grew worse. Entire buildings were reduced to rubble. Then I saw the spot where our little house had stood, a steady structure of brick and wood now toppled with father and mother and the baby inside. I shook so hard I could not even weep. Instead I stood there, staring wide-eyed at the pile of masonry where just that morning I had dwelled. But I did not think of that. All I could think was that I had forgotten the sheep, that I had run for town and left them behind without even trying to look for them.

I don’t know how long I stood there.

Very many people had died instantly that day. Now, I know that they were lucky. For so many others, it was to be a much longer process.

Aja McCullough