In the Bulrushes

Dad is in pain. That is a constant for me; it always has been. It’s like my anxiety—it’s always been there, longer than not. Dad says, “I dislocated my knee when I was sixteen, and I’ve been in pain since.” Sometimes, there are new types of pain, like the world’s worst Christmas present: the night we found out he had ADHD and had been undiagnosed his entire life, for example. Growing up with a mentally ill family member is thought to be worse than growing up with a physically ill family member. Well, what happens when my dad has both?

One new addition, a particularly nasty present, wrapped in sandpaper and filled with acid, was cluster headaches. Cluster headaches are described by Mayo Clinic as “one of the most painful types of headache.” They are called “cluster headaches” because they occur in cycles (clusters). These cycles of headaches usually have hours between them.

On a rare night when he talked about it, my father described them as if someone had taken an ice pick and driven it into your skull. He would watch the clock, waiting, counting the seconds until the next attack came, like a horror movie in your body that you could never turn off. Any words to describe it feel too light. Even the word “headache” implies something mildly annoying. If you have a headache, you cringe at your desk and take an Aspirin. You don’t sit, huddling, sobbing on the bathroom floor from the pain. You don’t feel like a tiger is boring his claw straight through your eye, digging his teeth into the top of your skull.

Cluster periods, times when the tiger will not give you a second alone, can last weeks or even months. This living hell is usually (not always) followed by remission periods lasting months or years. During remission, the headaches wait like a tiger in the bulrushes. During remission, there is no knowing. During remission, you don’t know if the headaches have gone away completely or if the tiger has lured you into a false sense of security right before he pounces.

Dad is in remission right now. He hasn’t had a cluster headache (our family calls them “cluster attacks” or “clusters”) since his heart attack. My entire family quietly hopes that he will never have one again. There’s never any certainty, though. Doctors are pretty clueless when it comes to clusters. That’s another problem, isn’t it? They don’t know the cause. They don’t even know if it’s genetic.

I don’t know how I’m supposed to fit into all this. One study says, in its distant and clinical language, “Paternal chronic pain was not found to be associated with child outcomes.” Your father’s pain does not affect you, they tut.

It’s funny how when you or someone you love is in pain you feel like everyone is attacking you. Take Dr. Mark Green, for instance. He’s a professor of neurology at the Mt. Sinai School of Medicine and director of the school’s Center for Headache and Pain Medicine. I have to fight the urge to punch him in the face.

Green was consulted constantly by The Atlantic in an article called “Cluster Headaches: The Worst Possible Pain?” (Most cluster headache literature follows this naming convention. One book on the subject is titled Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man by Ashley S. Hattle. You can scarcely see cluster headaches without seeing “painful” nestled neatly beside it, like termites infiltrating the wall of a house.)

In this article, they mention the colloquial name of cluster headaches: suicide headaches. This also often shows up in the literature. Green says this is common. “Most headache doctors have had patients with cluster headaches who have committed suicide from the pain . . . That’s more likely in the chronic form, [when] they know that they’re going to get one or two or three of these headaches, every day, forever.” My mother informed me that, in one of the support groups my father is a part of, there was a woman who led the whole thing. Her attacks were chronic. She killed herself.

I can’t say I blame her.

Green, the doctor who confirmed patients committed suicide because of clusters, describes their pain as “pretty awful.” That’s it. He, not satisfied with this already, gross undermining, continues: “Of the notion that [cluster headaches are] the worst pain known to medical science . . . I think they’re terrible [but] I think sometimes people can get a little carried away.”

Dr. Mark Green does not suffer from clusters. Dr. Mark Green does not know what the pain is like. Dr. Mark Green has never looked at the clock and teared up because he knows an attack is just on the horizon—the tiger is ready to pounce and rip you to shreds. The tiger does not care if you scream. The tiger does not care if there are tears streaming down your face. The tiger does not care if you would rather be dead.

Does Dr. Mark Green really think that he knows what the pain is like?

. . . Do I really think I know what the pain is like?

Here I go again. I’m on some holy crusade for a man who didn’t even ask to be saved. I have to do something though, don’t I? There’s no cure. Scientists are still passing around my dad like some alien anomaly, saying half-hearted apologies and quietly expressing marvel. My dad isn’t your sixth-grade science project. He’s a human being who is in pain. Why can’t you help him?

I know doctors are human beings (yes, even Dr. Mark Green), but someone has to take the anger, don’t they? Where do I put it if not on them? Why do they have to be clusters? Why couldn’t they stay migraines? Doctors will try to treat clusters like migraines, which ends up backfiring because, as we’ve discussed, they are not the same.

Migraines have you confined to your bed, lights dimmed. Cluster headaches have you pacing and screaming and crying. Some symptoms include a runny nose, flushing of the face, and a red or teary eye. Your eyes well up because you are experiencing some of the worst pain known to humans. You are not allowed to lie down. You must rock back and forth and suffer. I never saw my father in this state of suffering. My dad never let us see any of his attacks. When that clock hand ticked close enough, he would go into the bathroom and shut the door.

When I consult the internet, there are articles about parenting with chronic pain. It takes scouring academic journals for me to see myself—even then, it’s a clinical, distant “offspring (newborns through adulthood) of parents with chronic pain.” These “offspring”—a dehumanizing descriptor in my opinion—suffer more internalizing and externalizing issues. I don’t have much to say on externalizing, but my mental health tanking could certainly be partially explained by these internalizing issues. However, I also like to attribute my compassion and warmth for others to this. I know pain is a constant reality and therefore everyone must be treated gently.

I’ve never been with people like me—people who have a parent with chronic pain. I feel a little lost in the shuffle. Maybe I have been with people like me, but I don’t know it. I never sought out support groups because I didn’t think it was something I needed to be supported in. My dad didn’t have cancer, so it wasn’t that big of a deal, right?

Then I hear songs like “Soon You’ll Get Better” by Taylor Swift—a song she wrote specifically about her mother dealing with cancer, and so many lines jump out at me. They sit there like a mirror, reflecting my own experiences back at me as I shift uncomfortably. She sings: “And I hate to make this all about me / But who am I supposed to talk to? / What am I supposed to do / If there's no you? / This won't go back to normal, if it ever was / It's been years of hoping, and I keep saying it because / 'Cause I have to . . . you'll get better.”

It was never “normal.” Like my dad said, he has been in pain since he was 16 years old. As long as he has been my father, he has been in pain. You can’t go back to a normal you never had—it would then cease to be normal. Dad in pain is my normal, and I scarcely consider what it would be like if he was not in pain. I forget that most people don’t think about their parent’s pain.

Sometimes, when we’re together, the pain’s potency fades. I can forget how much we both hurt when we’re together. I can momentarily forget my anxiety, and he doesn’t mention his pain. We play board games and watch Gilmore Girls and laugh so hard we almost cry.

I hope he can forget his pain in these moments too, even if it’s just for a second.