The young woman stood at the cash register ringing me up. Her short-sleeved shirt revealed multiple tattoos all up and down her arm, hands. None of them looked like they had been done professionally.
I asked her about a couple of innocuous designs and she seemed to draw in on herself as she told me, voice halting and a bit unsure, the miniature tale of each design. She showed me all of them but the largest, most pronounced one on her forearm.
I didn’t want to pry.
But then I watched as her hand shook — tremors akin to an elderly person with Parkinson’s. I told her I was working on a project to bring awareness to the dangers of certain FDA-approved medications and her eyes snapped up to meet mine.
“One condition in particular,” I said, “is called akathisia. It’s a feeling like no other. Like…you want to rip off your own skin.”
But she’d already been nodding her head. She knew akathisia.
She handed me my card back and held out her arm and rolled it over to show me the large, rudimentary tattoo. I saw a flicker of anger in her eyes as she told me how she had done the flat line — not on her arm, in real life — and how they got her to the hospital in time. How they restarted her heart. How she’s off all the meds but how she shakes, still. How she can’t stop shaking.
But she can handle the shaking. It’s the pain, “here.” She pointed to her solar plexus. Given the chance, she wouldn’t get ink done by a professional. They’re too good at making it comfortable, she said. She wants it to hurt.
She pointed to the parts of her body she has taken a needle and ink to herself, or allowed others to do it, to drown out the pain of the akathisia that clings to her, despite being off meds for 3 years. Once, she tried a razor blade with the ink. It made a mess and it didn’t hurt as much as needles.
Her face and voice were more animated by then, and she spoke of the self-inflicted art on her body — the painful “redirect” she’d discovered — with no shame, but without any bravado, either. It was simply her life, now. She’s 22.
She let me take a photo of her arm and then. I showed her a rough cut of my first film, the first of 4 in a series, and she was in tears. I agreed to keep her apprised of our progress.
How to Describe the Indescribable
I remember the first time I read Infinite Jest by author David Foster Wallace.
It was about 20+ pages of his description, or rather, his character, Kate’s description of “suicidal depression.”
But I knew and know depression. This was something altogether different. I read it, highlighting it, tears streaming. My husband came home from work and he’d barely set-foot in the house when I said, “This — this.”
“‘This’ what?” he asked. I told him that I’d just read the indescribable pain I had been in for the entirety of our then-8 years together.
“This,” I said, breaking down into tears, not just from grief, but from hearing the pain expressed so perfectly, so perilously identical to my own, I didn’t feel alone anymore. David knew.
Whatever I had, David had also had. I knew it with every fiber inside me. And it was not simply "depression." Recalling, too, the depression I had in my late teens, I realized the difference. How David wrote about it--how I felt when I read his words--no. It was too bottomless, too dark for such a reductive, pale term.
I wish he were here to thank personally.
Here is my attempt to once again explain the indescribable, after 4 years of being off the medications that took my life and shook it like a rag doll.
The Devil We Know
I believe the daily battle with Akathisia — the unrelenting nature of it — is the only true and natural enemy of Hope. Akathisia removes all manifestations of it — the Hope of ever being okay, ever again.
For many, Hope is embodied in the idea or ideal of “Heaven,” or at least a form of peace after death. Death was not something I thought much about until I had Akathisia. Now, death looms like a constant specter over everyone I love, but for me, it’s become yet another torment. The antithesis of escape and Hope, yet all I can think about when I’m in its grasp is death or pain, any other pain besides the torment of Akathisia.
It doesn’t feel like a condition or illness. It doesn’t feel like a “disorder.” It feels like a familiar whisper that soon has the under-and-overtones of your own voice. It learns your vernacular, your language.
Akathisia seeks out your darkest places and expands them. It finds everything good and right in your life and mutes the colors, quashes any joy you might derive from them. It does its work as you try to breathe through the insanity of holding still when every inch of your body wants to flee in a thousand different directions.
Like a rabid, mad horse, Akathisia draws you behind it until you are skinned alive. Then, it ties every bone and muscle in your body, every inch of your skin, to invisible chariots to be quartered.
They run until you can barely contain the agony in, but they never run far enough with your body to kill you. Just when you think you might finally die from the anguish, the chariots stop, turn, and run straight at you, into you.
As you find yourself caught in a Hellish stampede, a whirlwind of black, despondent thoughts, emotions and images — the onslaught that has you begging for any relief, even death — it’s then that the full thrust of the word “torture” hits home inside of you.
The real, true meaning of day-in, day-out.
All this, and you look around you at the store, on the train, at the clinic or walking down a street.
It’s as if elevator music plays for the whole world but you. You see the oblivion on their faces — you watch their calm, bored, distracted eyes and expressions and you wonder how they can’t feel your agony coming off your skin like sulfuric acid, flames or shards of glass.
It’s the stuff of madness, nightmares. For me, it reconstitutes my once-dried belief in Hell.
We don’t take our own lives because Heaven awaits. We don’t take our own lives because we believe we will find peace.
If it were that simple, there would be none of us left.
We take our own lives because the absence of Akathisia becomes the only Heaven we’re even capable of conceiving. And even then, we don’t know. For all we know, we could be headed into where we are now, only worse — and forever.
In the most terror-inducing situations, from being held prisoner or hostage to being diagnosed with fatal illness or disease, human beings manage to adapt.
Accounts of seriously depressed people getting cancer and finding renewed vim and vigor for life speaks to an individual's ability to emotionally deal with threats to their survival. And we are all given a certain "filter" through which we see the world as we all march toward the "worst" possible outcome imaginable--one that is inevitable for every living thing.
But for those of us who suffer from akathisia (and who have it through medical/pharmaceutical harm), the “devil we know” is nowhere near better than the devil we don't. Too many of us choose the devil we don't know, going against every instinct we have.
Akathisia in the here and now is literally the worst of our reality because as it eats us alive, what gets pulled from every corner of our world is Hope, not just the hope for recovery or healing.
It’s a Hope that goes beyond the last breath we take.
I wish I could reach out to David’s widow. I wish I could tell her that he wasn’t himself, maybe. And while you might blame the illness for taking him from you because that's the socially acceptable thing to say and think, underneath it, there's still anger. I know. It was still him, and someone as brilliant, gifted, and clearly in love had options. He could have made another choice.
Maybe. Or maybe... if the above description is accurate, maybe he believed he didn’t. It literally could have been the emotional state I describe, above. It could have been what took him to that terrifying ledge, and in fact, I’d bet my life on it.
Because when you believe the last of your options are gone, you get extremely creative. David was not short on creativity. What he was out of, quite possibly, was hope--and when I mean "out," I mean the moments he spent alone, with you, with anyone, writing, not writing, inside his head wasn't a dull ache-thud of depression, but a scream so horror-inducing, the terror clutched at his throat as he clung to you at night.
When my husband and I were first married, we'd make love before going to sleep. He would sleep. I would lay next to him sobbing, silently, clinging to him, terrified, literally so terrified. Once he woke up alarmed with me sobbing.
"What is it!" he was panicked, finding his new wife sobbing, gulping for air, clinging to him.
I told him the truth. I was terrified he would die, every night. I told him I was terrified, and that he would die was where the terror "landed." It made as much sense as anything else.
"Don't leave me, please, don't leave me," and I think he knew, then. Knew something was very wrong.
Do you understand? We feel Death's freezing breath on the back of our throats and necks all the time and by the time we are ready to leave, we believe we're saving you. Not us.
When you are drowning, you flail. You grasp at anything. When the invisible flames are behind you and everyone around you is humming to elevator music…well.
I hope I give an accurate glimpse of how the “flames” feel so you know. Also, when you believe, without question, that being above water feels as soul-crushing as below , you “shut your eyes and all the world drops dead.”
And while I don’t know what the last words on his lips were or whether they contained your name or his mother’s, I can say from my own personal experience that on that horrible ledge, the words on my lips were always, “I’m sorry. I’m so sorry. I can’t do it anymore.”
Because the way it’s set up right now is this: we are told the flames at our backs is a fire we set. Disease “model” or not. Brain-scan colors or not. The changes in the brain can be instant, yes. They can also be a slow undoing. The colors are the same. And then self-blame and shame, both, eliminate the last of the fight we have in us.
Understand this: They blame the people they set on fire. They blame those of us who drown inside our own fear while telling us it can't be helped. It's a disease. One we're responsible for having. As if it's our personal failure we don't respond to "treatment." And we believe them.
And please know this. I am sorry — I am so sorry. Karen, if you ever read this, I want you to know--he saved me. David didn’t have someone to save him with their words or this intimate understanding of this particular side-effect, akathisia.
I don’t know if it will be a comfort or not — to have another explanation of why he’s gone, one that speaks to how utterly preventable it was. However, there is a time for comfort, and a time for truth and it’s not up to me to decide when those times come for you.
But if and when that time comes, I hope it comes gently, softly, and with so much hope and more peace than you’ve ever known--oh, I hope for you more than you could possibly know.
And now, to all of you, I wish you "way more than luck" — I wish you peace