When just over a month ago I sensed that my mind was changing, I was overcome with a frenzied need to record everything I thought and felt. Even before I understood that I was depressed, I realized I was going somewhere that outsiders could never truly visit. I became consumed by the need to write a message from the inside that could maybe serve as a map or even just a sign that says “Keep Out! Here Be Dragons!”
Not so long ago, sharing my diary with strangers online never entered my mind, not even in my worst nightmares or wildest dreams. It was that impossible. However, that was before ALS. The same rules – even my own most personal code – no longer apply. I am braver because I am a soldier now. I take risks because that’s how you fight. This way, even if I die before the cure comes (and it will come), I’ll go knowing I made the path less lonely for my fellow soldiers and just a little easier for those who come after me.
I didn’t sign up for this war, but my enemy means to kill me, so I must give everything I have and am in this fight. Privacy is a luxury long gone. I will share my most secret thoughts and vulnerable moments in service of my fellow soldiers and the people who make my life worth fighting for. Right now, that means showing you what it’s like inside the beast that senses we are battle worn and easy prey. My hope is that if you read my diary and recognize yourself or a loved one in these words, you will realize it’s time to call for reinforcements, whether in the form of a psychiatrist who prescribes antidepressants, a therapist who talks you through the climb out of the pit, or a priest or pastor who provides solace and guidance.
To learn more about preventing and identifying depression, read my ALS News Today column12212627122128. I will share a follow-up post in the next few weeks on different types of intervention and how to choose which is right for you.
Now brace yourself. We’re going in.
I am choking on the strength of this episode. It wraps ever tighter around my throat, just like his hands. As I write this, I am sitting in bed, watching a funny show while checking my email, text messages, and Facebook notifications. It is the middle of the night, a time of terror for me, so I need the safety of the blue electronic light of my devices. I bask in the glow, then I drown my thoughts in sitcom banter and a whirlwind of multitasking.
Burying my dark thoughts is a high stakes game; if I don’t use the right maneuvers, the shadows win. No matter how scared I am now, it is nothing compared to how I will feel if the memories creep in. The memories open the floodgates of flashbacks, which will sweep me far away and back in time to that room where I was raped and nearly murdered.
I escaped with my life, but certain parts of me died there, namely the part that believed no one would ever hurt me. Well, actually I had never really considered that I could be a story on the news as easily as any other human. I held myself apart in the way we all must to some degree if we want to function in the world. Dwelling on our abject vulnerability would reduce us to terrified shells of ourselves.
I can’t close my eyes in the dark. I can no longer write, I can’t focus on reading. All I can do is mindlessly watch TV. I am afraid to sleep because I want to remain vigilant, and I know nightmares are waiting for me. I am resuming therapy, or at least that’s what I tell myself, but I am desperate for a quick fix. I know that no miracle pill exists to give me relief, but I have been living with PTSD for eleven years, never knowing when it will become active and derail my life. I’m exhausted.
Thinking about “the event” again. I guess writing “rape and attempted murder” became too clunky since I keep doing it again and again. I wish there was a word for that crime.
Here’s something weird: I had actually been in that room before. It had a great view of the Gulf of Finland, so I took a picture. I put in black and white because I thought it made the photo look artsy. During “the event,” I turned my head so I was looking out the window at that same view. I remember making that choice because I wanted to escape my body. Maybe I succeeded because when I look back, I can only remember the black and white photo. The memory lacks color and sound. In fact, that whole night remains in perfect silence, as if I stepped into the photo because inhabiting my skin was that unbearable.
I also sensed if I looked up, I would not survive. I couldn’t articulate it then, but in hindsight, I realized that it I were to look, I would have to confront what he was doing, and I didn’t want that image in my head. If I looked at him, the image would take over my brain like a fungus I saw on a nature show. The fungus commandeers the ant so that it becomes disoriented, out of touch with reality and its purpose. Ultimately, its new biological imperative is no longer survival. It follows the final orders of the sadist in charge by climbing as high as it can. Then, when the ant is paralyzed by vertigo and weakness, it gives in. The fungus cracks the ant and blossoms, sending its spores far and wide, aided by its victim’s lofty position.
Summary: if I looked up him, the images would have devoured my mind until I forgot who and why I was, creating so much pain that suicide started to look attractive.
That kinda happened anyway, though…
My doctor came to see me. I can’t believe that I didn’t realize what’s going on until she talked to me. It is classic crying, lack of interest in anything, wanting to stay in bed depression. It is not the most severe I’ve had. On a scale of one being fine and ten being suicidal in the mental hospital (true story), it’s a five.
The PTSD fuels the depression by isolating me. I’m so mad at myself. I want to be stronger and fight this off with logic, but everything is scary. It makes me think of Alias Grace by Margaret Atwood. There’s a great quote when Grace says something like, “Quilts are so bright like war flags, I think we put them on beds so you take notice. You see the warning that the bed is a most dangerous place.”
That’s how I feel when I get in bed. I still feel the danger of a crime long since committed against me, so I stay awake on guard all night. When dawn comes, I finally surrender to sleep. The end result of all this fear and hyper-vigilance is loneliness. I am only awake when my friends, family, and beloved husband are asleep. I want to have friends over, go write in the beautiful library, and spend awe-filled hours in the art museum. I perpetuate my isolation by refusing to reach out to them.
I also play this game where I don’t contact them and then wait to see how long it takes for them to contact me. The longer it takes for them to contact me, the less they obviously care about me. It’s a shitty game, but I can’t stop playing.
I feel like a raw nerve in pain after any interaction. I wish I could read substantial books. My intellectual hunger still rages (a good sign), but my concentration is too poor to make it through even the first page of any appealing titles.
Also, lately the library doesn’t have e-book versions of what I want, and I took this REALLY personally. I reacted as though this was a commentary on how little society values me as a disabled person. I am hung up on that anyway because of all the times President Trump has negated the value of the people with disabilities. From mockery to attempts to gut Medicaid and defund ALS research… I don’t want to let him me this way. It’s just that everything hurts me more now that I am depressed.
I am starting to think this is happening because I am repressing sadness, which is a pattern for me, which I discussed in the post “Leaves in My River, Stars in My Sky123127128123129.” I mean, the major thing that I have been crushing for years is sadness for Evan. If I really think about his situation of watching me slowly crumble, if I empathize and imagine myself in his shoes, I feel like I’m dying in a way ALS has never achieved. Knowing he cries in the car makes me sick. I sob hysterically until I can’t breathe. Imagining I’m the one crying in the car because I am losing him is unbearable, and I am grateful that I am the one who has ALS.
Evan says to go easy on myself. Getting frustrated with myself does great harm and zero good. I can’t berate myself into ending the episode. I guess it’s time to learn to show myself the compassion I apparently think everyone but me deserves. After all, if I am not on my own team when I’m at my weakest, how will I fight my way through this? I know that logically. Now I have to figure out how to live that truth.
Wish me luck. I need it.