The politics of fear: An almost Halloween post

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Deep into that darkness peering, long I stood there, wondering, fearing, doubting, dreaming dreams no mortal ever dared to dream before.    -Edgar Allen Poe, “The Raven”

I’ve been giving the subject of fear a lot of thought lately, in part because I finally have a house to decorate for the holidays and I plan on wowing the witch hats off our young trick-or-treaters. As we dangled an enormous, furry spider from the top of our porch I found myself wondering if it was maybe a little too scary. I mean, I want them to be scared in that delicious goosebumps-rising-on-your-arms sort of way, but that only really works when we know that everything’s going to be alright. If we’re actually, genuinely afraid in that sick-in-the-pit-of-your-stomach sort of way, then it’s not fun anymore. At least not for me.

And the things that scare me don’t have anything to do with apparitions clad in white haunting my front porch or sharp-beaked ravens or owls that cry loudly as you walk by. I’m not afraid of witches or spiders or zombies. Maybe that’s why I like Halloween so much. For a couple of days, I get to live in a world where we all pretend that’s what we really fear.

But it’s not. I’m afraid of the tragically mundane–foreclosures and sickness and bills that I can’t pay. And all of these fears have been very much at the surface of my consciousness of late because I bought a house and because I have been a little sick and because my insurance company was uncooperative when I was sick and I realized how very little agency I have when it comes to the subject of my health. That’s true fear, the kind they don’t have a holiday for.

In early July my doctor told me that she thought there was a good chance I might have a brain tumor, not the kind that kill you, just the kind that can make you feel sick and cost a lot of money to remove. I’m a little embarrassed to say it, but initially I was more bothered by the money aspect than by the fact that there might be a growth in my brain that did not belong there.

Just getting to that point was an exercise in terror and self-control–mostly because I have a needle phobia that makes getting blood drawn something of a nightmare. My doctor prescribes me medication to knock me out beforehand, but inevitably my adrenaline overrides it and I find myself quaking and weeping in the most ridiculous fashion in front of a nurse who looks worried that I’m going to do something silly like run or pass out. I do neither. But I do make my boyfriend come with me to pinch my other arm while I listen to the loudest, angriest metal music he can find. And I throw up afterward.

It’s both painful and humiliating, with a strong emphasis on humiliating. And I probably wouldn’t have agreed to it in the first place except that I knew what my doctor was looking for, and even I know I can’t live forever wondering if there’s something in my brain that does not belong.

So when I got the call from her the next day, the one in which she told me that I needed to schedule an MRI the next week, I was a little surprised by how strongly it hit me. I began making a mental list of all the things I was worried about (besides how much this all would cost):

I was worried that brain surgery would impact my sense of smell. I have a really powerful nose for whatever reason–I suspect it’s too compensate for my terrible vision–and I didn’t want to lose that.

I was scared I would lose my facility for language and writing, and even more scared that I would lose my interest in it.

I was scared I would suddenly decide I no longer wanted to be a vegetarian, or no longer cared for animals.

Basically, I recognize that everything that I am is bound up in an incredibly complicated wiring system in my head and I was terrified of what would happen if it was disrupted. That’s not to imply I’m perfect, or any kind of genius, just that all I really have in life is myself and I didn’t want to lose any part of myself.

The Center for Diagnostic Imaging called the day before my appointment to cancel it. My insurance, Aetna, hadn’t approved it. We rescheduled for later in the week. The day before the second appointment I got another call. Aetna had denied my doctor’s request for an MRI. The week of waiting had not been easy for me, and learning that I would have to continue waiting, that Aetna felt the possibility of a brain tumor was not worth exploring, was frustrating to say the least.

After several weeks of frustration and uncertainty, my company’s HR team got involved. Weeks passed. Then months. At first all I could think about was this big, stupid uncertainty, this possibility. And it was really hard to focus on all the things I would normally have been focusing on at this time–work, getting to know Seattle, buying my first house.

In early September, two months after my doctor first told me to schedule the MRI, I received a letter from Atena that after countless phone calls and emails, the involvement of my HR team and third party intervention, they had changed their minds about my MRI. They were going to let a diagnostic center scan my brain for a tumor.

By complete chance, it was scheduled the same day Colin and I signed the paperwork on our house. We drove to the diagnostic center and they told me that the procedure would involve an IV. And if I thought that having blood drawn was traumatic, I honestly didn’t think it was going to be possible to endure any amount of time with a tube in my arm. The only reason I didn’t leave was the fact that my HR team had fought so hard for me to get this test and it didn’t seem right to allow my fear to negate their hard work.

They wouldn’t let Colin come with me, which was hard. I removed my clothes and put on a pair of blue scrubs and the nurse reminded me to remove my nose ring, which I did. The needle was a needle. To be honest, my phobia has nothing whatsoever to do with pain. I get migraines that are far more painful than any needle at least once a week. And yet, if I had a recording of what was going on in my head, it would likely be one of the most pitiful, caterwauling things ever produced.

Once the tube was in my arm, all I could think was that I wanted it out now, and that I had to do everything the tech told me to do, that I could not panic and push the button he had given me, because if I did that tube would remain in my arm.

The contrast they pump through the tube is cold, and as for the bigger tube, the space that I occupied, it made me understand why people fear confined spaces. I don’t. That just doesn’t happen to be my phobia of choice. But the combination of the whiteness, the vice around my head, the scrubs that didn’t actually feel like clothing, the tube in my arm, and the question of what they would find in my brain had me screaming in my head. I eventually asserted control over this screaming, singing songs in my head, songs that shook with fear and vulnerability despite the fact that they weren’t actually passing through my lips.

The clanging, the noise that machine produced, I found hilarious. And the occasional rides up and down the tube as I was repositioned would probably have delighted me if I didn’t have a tube in my arm and a possible tumor in my brain. I debated whether it felt more like a Disneyland ride or a rave; I’ve never been to a rave but the random thumping, pounding noises that made no sense whatsoever seemed like something that would come out of a rave.

The tech was a very nice man who tolerated my irrational fear with grace and patience. And afterward, when I was dressed and managed to fasten my nose ring back in its place, my boyfriend took me for ice cream at Cupcake Royale. He, also, is patient.

But there were too many things I could not control: Aetna, my brain, the amount of money this was going to cost. I couldn’t even remember the day I signed the papers on my house without remembering my terror of that IV and how maddening it was that I have this stupid, vulnerable body that means that I don’t even get to decide that I don’t want a stupid needle shoved into it. I’m not sure if this is rage at my mortality, or rage at everything in my life that I can’t control. But it isn’t easy to cope with.

I don’t have a brain tumor. I found out a couple of days after the MRI; I couldn’t wait any longer and called the doctor’s office for the news. And yes, I was relieved. I’m not cut out for brain surgery. I don’t actually think anyone is mentally equipped for the news that they have a brain tumor and the inevitable repercussions. Of course, at some point down the road there will be something I’m not ready for.

I don’t know how long I spent in that tube. I know exactly how many days I spent wondering between the news that I might have a brain tumor and the news that I did not, and the answer is far too many. I won’t go on a rant about the inhumanity of withholding a very necessary medical test from a 31-year-old who might or might not be living with a brain tumor; I don’t have words for how small and insignificant and helpless Aetna made me feel at a time when I was vulnerable and desperately in need of concrete answers. And I know they’ve done the same to millions of other people (if not Aetna specifically, then another insurance company certainly has).

I guess all I can do is embrace the ghosts and leering pumpkins and flash-eyed ravens and owls. I can celebrate when there is opportunity and be grateful for the things that make me who I am that I haven’t lost–like my over-eager nose and compassion for animals and passion for reading.

with a brain tumor; I don’t have words for how small and insignificant and helpless Aetna made me feel at a time when I was vulnerable and desperately in need of concrete answers. And I know they’ve done the same to millions of other people (if not Aetna specifically, then another insurance company certainly has).

I guess all I can do is embrace the ghosts and leering pumpkins and flash-eyed ravens and owls. I can celebrate when there is opportunity and be grateful for the things that make me who I am that I haven’t lost–like my over-eager nose and compassion for animals and passion for reading.

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