Panic Room

This is probably the most vulnerable, personal blog I’ve ever written but it needs to be written. So, here it is.

We need to talk about rage.

For those of us who have akathisia, we speak of the unspeakable pain, a feeling or feelings so unbearable, we feel like we want to peel off our skins. We speak of suicidality—the feeling of wanting to escape the torment, doing anything to stop the pain. The violence turned toward us.

What we’re not so keen on, what we don’t speak of often—until after we’re sure it’s gone—is violent thoughts, feelings, and actions we feel, or perpetrate, against others.

Read the Black Box Warning of this medication, often given for nerve pain, and it touches briefly on emotional states that the medication cause, states that can lead to violence. (Red dots added by me.)

This is (legal) pragmatism at its most despicable.

While the drug makers are careful to blame anything else in the language, the bottom line is this: if these didn’t happen when someone took the drugs, they wouldn’t bother mentioning it on their label. It has to be reported to the FDA to even be on the Boxed Warnings. Even worse, as shown by the red V's (for "violent") on the trial exhibit, below, from the Dolin v. GlaskoSmithKline lawsuit, violent suicides, and murder/suicides happened in the clinical trials, the trials that were conducted to get the drug approved.

Being in pain, any kind of pain can put people on edge. They might turn their anger onto themselves by overeating or on the world by getting on social media and raging. The boxed warnings don’t talk about stress-eating or being unable to control your inner asshole on social media but they do warn against self-harm (suicidality) and violence ('other' harm.)

Anger, pain, and despair can fuel violence. So can feeling--and being--dismissed, especially by society or our communities. The problem is that our culture, (while protesteth-ing that "emotions are valid") disallows, not just the expression of anger, but the emotion itself. Women, especially, have no appropriate outlet for rage, so many of us have, and do, turn it in on ourselves.

For people who suffer from akathisia, anger always dances on the surface of the torment.

Like a blackout drunk awakening the next morning, the day or evening before returns in waves. The hungover and remorseful husband tentatively walks through the house praying to God he hears his wife and kids eating breakfast, looks to make sure her purse is still where it always is, praying he sees her face without an ugly bruise, knowing some bruises are uglier when they’re invisible.

I’d like to speak, now, specifically to those who suffer from akathisia, whether chronically or occasionally, first.

While I’m a poet, there are not many ways to pretty up this truth: I have taken my anger and rage out on my partner and, at times, I still do. And my rage has even gone into the realm of 'abusive.'

There’s no redeeming or justifying the blind rages or the slow broiling over during the day that my husband feels, then unwittingly fuels by tiptoeing softer, being as absent as possible, and doing everything he can to mitigate or keep anything that might “wake the beast.” In fact, that dynamic has become rage-provoking unto itself.

This is the dynamic, and cycle, of abuse in its early stages. Family and loved ones, walking on eggshells, the abuser feeling righteous and justified because they are suffering. Then windows of remorse and self-awareness, followed by fragile promises that are soon broken because nothing in the dynamic changes.

There is no way to atone for abusive words hurled in anger toward someone you love (although I did redeem a ‘mug-throwing’ incident using symbolism, spin, and a bit of creative license.)

And it’s that last word, license, I want to address.

Another word for license is permission and I’m not going to give you permission to act out your anger, whether emotional or in the form of physical violence, against your partner or family. These are the only people sticking around to help you. My husband and I have to approach this like a team because when I'm out of my mind with pain and rage, I will aim my rage at the safest person--him. Akathisia is the enemy, not him.

When I see that I've started to give myself permission, I revoke it and work like hell to make sure I’m on top of my anger, or aware enough to ask for help before it’s too late. When I'm not in a rage, that's the time we make the plan. We drag it out into the light so shame and secrecy don't trap us in a hostage situation.

I am never going to ever say it’s okay to be abusive to others when you have akathisia. I am going to say that I, personally, have acted out abusively, even violently toward my husband during acute bouts of akathisia. If the rage wasn't aimed at him, I would have aimed it at myself. He’ll say he’d rather it be the former.

What he doesn’t realize is, like the blackout drunk, my remorse the next day fuels something even more dangerous, unconscious, and silent, something I call "my" or "the Case," which I’ll go into in a second.

Back to those of you who are suffering with akathisia—I’m also going to tell you that *I* know you don't have a whole lot of control over this rage, but I will tell you that you have more choice over how you respond to, ride, or wait it out than you might think.

I’m not going to tell you that you shouldn’t feel rage or enraged. You not only have real-world reasons to feel it, you have a chemically-induced neurological condition that propels this rage, and that is where the focus needs to remain if you want to stay sane and stay married or otherwise remain un-alone.

I would even suggest to you this is the way you stay alive.

Family, caregivers, and intimate partners, this is for you.

If you share a roof, a flat, blood, children, or a life commitment with someone who has developed akathisia, this isn’t only on them. Their anger makes a case for you to walk away. If they are in denial about akathisia, then you might need to walk away.

But if they are fighting for their lives, and if you walk away, whether physically or emotionally, that gives them the final piece of evidence to make their Case airtight because it's one they’ve been building for themselves since they knew they were not the same person you married, knew, or loved.

The Case, in my world, is the gestalt of the reasons I no longer feel like I can withstand the daily battle with akathisia and the concurrent health struggles that I also deal with. What makes the Case so dangerous is that when I feel that much pain, I start to isolate myself so I can tell myself The Great Lie: Everyone would be better off without me here, in torment, tormenting them.

So caregivers/partners/families: Every time we have angry outbursts and you react with anger, fear, withdrawal, or resentment, “...it’s YOUR problem, not mine,” you’re making our Cases stronger.

Please don't misunderstand me—if you or anyone is in danger or they are a danger to themselves, do what you need to do to be safe. But remember: while punishing them for their rage feels good in the moment, don’t trade what you want in the heat of the moment (and what feels righteous and good in that moment) for what you want the most: your loved one safe, alive, and on the road to healing what can be healed, including your family.

This is a family affair, guys and gals. You cannot expect the person with akathisia to go this alone, and in return, the person with akathisia can’t just let the rage take them, and you, over the edge of an irretrievable cliff.

How much control do *I* have? Sometimes, way more than others. There are times when it’s clear the rage is being generated out of real events, but disproportionate to the circumstances. I read notes to myself, watch videos of myself talking to me, talking myself through the rage, checking the logical boxes that tell me, in the end, “Ah, yeah, this is rage from akathisia, not because of anything my husband did."

But that was and is my work. Not a caregiver's work. You can’t minimize someone’s pain, hurt, and emotional state for them.

You need a plan in place. A plan of safety, a plan that, no matter what, you adhere to. You need boundaries and you need to prepare them as a couple or family during the calmer periods so that even in the rage, the person knows that whatever is happening is happening because they agreed to it and ultimately, because they are loved.

If you have akathisia, or any form of drug-induced mood or emotional effects, you have zero, ZERO excuses to not be in therapy--you and your partner and/or family.

The therapist must be on board. They must learn about akathisia. Right there, you could be saving a stranger’s life by educating a mental health professional. And you don’t need to convince them of anything other than you are suffering immensely due to a type of brain injury.

Chemical brain injuries are recognized by the mental health community readily enough. Let go of your agenda to force their adherence to your vocabulary. You’re there to save your life and the lives of those you love, period.

What works and what does not work? When you’re not angry, you and your S.O. or caregiver need to sit down and discuss how their reactions help or make things worse. I promise you this: you will need to do this more than once.

Akathisia is a dynamic, moving target, and your brain is brilliant at finding legitimate "landing places," as my amazingly supportive husband calls them. The landing places have run the gamut from the healthcare system to individuals, to events, to him, and almost always, to myself. (And yes, while I'm lucky to have him, understand: I don't know how "lucky" I would be if I wasn't 100% committed to being the best partner I can be to him, because he is here, every day. I remember that and say it out loud when I find myself slipping.)

If you have akathisia, get off social media. It doesn't calm you down. I’ve literally met NO ONE who is calmer, happier, or less angry after a day on Twitter or in a Facebook echo chamber.

Look, if you need an echo chamber with others who have been hurt, and if you need validation and resources, then do it. But if that’s all you’re doing, and if you’re getting sucked into the grief-outrage-blame-morbidity of it for hours, days, weeks on end, you are feeding akathisia, not starving it, and guess what, there are only those two things. Spending time on social media or reading stories of others who have been harmed stokes outrage and eventually, you are going to slide into despair and feel even more isolated from the flesh-and-blood people around you who, believe it or not, need you, too. You will feel more suicidal. And likely, more rage.

Akathisia strips our emotional "skin" away. That can mean we walk around skinless or with huge chips on our shoulders, which means we have to work harder and be better than anyone at self-awareness. Are you angry at psychiatry? Me too. But I'm sure as hell not going to make a case for them by behaving like a lunatic. Like an atheist in a religious family, we have to be better. It's unfair, but there it is.

No, you didn’t do this to yourself and since we’re adults, we learned that lesson a long time ago or should have, and yes, akathisia doesn’t just feel like an “unfairness,” does it? It feels like a violation of our spirits.

It was and it is.

But hear this with all the love, solidarity, and compassion I hold and have for each of you and your suffering—if you continue to blame the world, it will bleed over and into you. It will devour you from the inside out. It will strip you of YOU if you let it, and then, it will be you, alone, in a panic room.

But instead of protecting you from your worst fears, they're in there with you, alone, lying to you, whispering The Great Lie.

But you are not alone and that is so hard to remember, I know. I need every one of you. This fight needs all hands on deck. Every, single voice to speak their truth of how and why and when they were violated, and how the violation continues. But we have to find effective ways to fight. Hurting ourselves and our loved ones because we were hurt not only doesn't make sense, it robs you of your greatest resources and strengths when you need them most.

I need you. And when I'm walking into the dark or clawing my way free, whether it's true or not, I tell myself, over and over, that you need me, too.

In peace, in pieces -

J.A.