Pending…
Author's Note: This is a personal narrative reflecting my lived experience, memories, and perceptions. It is shared to express the impact these experiences had on me and is not intended to be a verbatim transcript or comprehensive account of every event.
Episodes.
That is what I call them. That's the word that fits best. I know one is coming when I start to see double. I literally see double of a person that I am staring at. Ive never had that happen to me before but now, it serves as a simple warning of a ride I won't be able to get off of. The sweating, intense trembling, loss of memory, dizziness, nausea, blurred vision… those are the less embarrassing ones.
Those symptoms used to scare me, but now they have turned into information. I honestly am having a difficult time truly capturing what happens during this span of time. I've had about 4 of them at this point... I would say in the span of a couple of months.
And, separate and apart from these ‘episodes’ there are the flat-out panic attacks, which honestly going back in my life and naming other incidents when I thought I was having a panic attack has nothing on what they have become. Almost laughable.
In any event, I’m scared to type this up for many reasons. The worst of them being that someone will actually read it which, yes I know, it's counterintuitive, but it's what I’m working with right now and honestly? I’m good with that.
Everything has become scary and feels as if my own body is betraying me. I have spent so many years being suicidal. I’ve run the gambit of thinking about it, writing about it, accepting it in abstract form, realizing that it was a real thing and formulating that into my real life experiences... just writing notes to people I love, in my head fantasizing about it, wishing it would just happen to me. I had a plan at one point, rather recently.
pause
For the record, no, I am not interested in harming myself or others which is part of the reason why I am sharing this at all. But, not too long ago, I had it planned out. (trigger warning. stop here)
I wasn’t going to do it at home. I didn't want someone I loved finding me. I’ve seen death, have sat next to it and stared with honor as the person I loved most was finally able to let go. That had morphed into jealousy which brings me back to my plans. I planned to get a hotel, and draft the final notes of many that I have written over the years. To family, my sister, a couple of people in my life etc.
Here’s a joke for ya...
I recently had the thought that I would end each one of my notes with "any questions?"
No, really though. HOW FUCKING HILARIOUS would that be?
ok. back to it. Right. Hotel. Notes.
I would get what “I needed” just enough to sleep. That's it. get comfy, turn on bobs burgers and just sleep. Nothing dramatic or worthy of explanation. It captures what I have gone through for many years in the best possible way. I would text one person who was just distant enough with a phone number of another fairly distant person with basic information "call this number and tell them that xyz" I hadn't fully thought that through, but I had other things planned out. Squared away. Taken care of etc.
And then, the universe said 'oh really bitch? you wanna die?!
Hold.
My.
Beer.
then lovingly, kicking my ass as I humbly watched all of my faculties being torn from all that I once knew to be true.
Walking straight > getting up >falling down> bruises
Holding things that shook with the beat of my own hand> Dropping things > Not remembering what things were at all let alone their function
Seeing straight> seeing everything as a blur > seeing nothing at all
Forgetting things> Forgetting routines > Forgetting what things were > forgetting words in general (numbers, letters, my phone number and so on) > forgetting how to swallow
Speech taking pause > Slowing down> Forgetting what words meant >Stopping speaking all together. It’s just not an option for me, sometimes
The concept of time, days, processes
Confusion
Intense shaking
Compulsions and deep obsessions
Paranoia
You get it…
Moment by moment with each progressing day that had passed. I hide them rather well for as long as I can.
Among my 4 episodes, 2 of them in particular, left me so sick that I forgot how to drive, shaking and blurry vision etc. This last one... the one that put me over the edge, (#4) I was certain that I was going to die. Unmistakably it was my time. On my way to work that day, had missed the exit by about 10 minutes which is fine. Barely making it through the day. I had dental surgery prior and had to fight tooth and nail (no pun intended) to beg for one more day of recovery. Fine. I showed up to work, had a meeting with my boss and got through the day the best that I could until I hit a wall. Slammed into it and my power button turned off. In that emergent situation, I texted and emailed both of my healthcare 'providers' and told them this was an emergency (didn't call 911 because I had already done that in the past. Not sure if I wrote about that experience or not but trust me, that wasn't the answer) I requested immediate appointments via telehealth. I was no longer functioning, could barely speak. Couldn't remember words, or see, my body was trembling... still refused to leave early.
Allow me to note that prior to many of these events, there was an incident at work, which proceeded to make my days at work unbearable.
Everything had changed. The way people treated me, being flat out ignored for weeks, excluded, laughed at. My everyday interactions, treatment being vastly different than they were prior to ‘the incident’ (trust me, I know how annoying it is for someone to reference something without elaborating, but for many reasons, I need to keep this one close to the chest.) I kept logs. I'm hyper vigilant so each day that went by, regardless if I was able to see or not (I can type with my eyes closed), I did my best to recount each day, interaction, disruption etc. Directly after each conversation, took a moment to log it.
And then, with a straight face was told I needed to meet with HR once every other week just to touch base because they (my bosses in other states) realized I didn’t 'have support' to help me through things. Ensuring me that it had nothing to do with what had happened, but rather to assist me if I needed it. Every other Tuesday. Laughable.
Specific example: "you know, just in case you need to know where the printer is or something." I had been working there for 11 months at that point. I knew where all the printers were and how to use them. In fact, I showed another employee how to use one and connect it to her computer. Cool. Ok.
I went along with it. Being sure to note and explain all of the issues I had been experiencing and noting them with the HR rep. begging for her not to tell anyone because of my fear of retaliation, which I have seen occur with one employee in particular. HR agreed with me that this employee who remains a central role to all of this. She (the HR rep) stated that she was problematic from what she had heard and set in her ways and she agreed with me that bringing her in for a discussion wasn't worth it. The last time I had spoken to HR, the last meeting, I distinctly recall telling the HR rep to 'call her in' because at that point, things had gotten so unmanageable by this ringleader that my work environment was hostile. “Set a meeting to call her in because I am now working in a hostile environment” No such meeting was planned so I continued being ignored, laughed at, doors shut just enough so I couldn’t hear the conversations but I sure as hell could hear the whisper of my name. Laughter shortly after that.
People had no longer visited my desk regularly. Passing in hallways without looking up. Ordering lunch and touching base about it over my head (there were 5 people in the office. Me being one of them. 4 ordering in lunch)
I was terrified and flat out sad. Quite abruptly, post incident, my day-to-day tasks had changed. The micromanagement. Not kidding, I was suddenly being asked to log the hours each day when I left. Not because I was late, but rather because I was working too hard, too long. Couldn’t make this shit up if I tried. They care so much about my wellbeing but didn’t seem to be so concerned when I had dental surgery and begged for an extra day. Ok deep breath... All of these issues compounded on top of my deteriorating health and personal issues somehow hit a button that forced me to shut it all down. My psychiatrist and my therapist both agreed that I was no longer functional and that I needed to go on disability which honestly, was never a thought for me, at any point, with any job. I worked until the job got done. Cared about and took pride in what I did. More than anything, my job was all that I had considering the fresh hell that I clawed myself out of. So yeah, I earned that seat so you better believe, I’m going to fucking sit in it. Until I couldn't anymore. Not because I didn’t want to, but because I was treated so horribly that it was no longer my seat, that 'seat' represented a space that belonged to that of a victim...and that environment was no longer safe for me.
I bring us back to episode 4. On the way home which ultimately turned out to be my last day before my journey with disability, I missed my exit by 40 minutes and had to turn my gps on to get home. I vomited all over myself in the car, trying to hold my sleeve up to "catch it" which could only handle so much before I gave up and just let it happen. My seatbelt and body completely covered. I was terrified in general let alone having the faculties to be able to turn the wheel to park. I was so confused. Getting out of the car and going up the steps to my apartment was painful ...desperately painful. The sun alone…my god. I forgot what keys were and when I eventually got them out, my hands shook them so hard that they fell down. I at that time, I had become disoriented, being unable to hold things or walk straight. I now had to bend down and get through, breathe through, survive the moments of picking up my keys, remembering what they were and what I needed to do. I got it, turned the lock and vomited on the floor with no care other than to get myself safely to the couch. I couldn't physically stand much more and at that point had acquired the pattern of falling down so getting to the couch was a gamble.
One of them was notably in the kitchen, a week or so prior, smacking my head on the tile and being lights out for approximately 10 seconds... but in this moment the one I am referring to, I knew it. I knew I was going to die. I sat on the couch just praying in my head in a weird, twisted way to let this moment stop, regardless of what would come of it. I sat there as my eyes squeezed together with no reprieve or relief. Eventually was able to lie down which was a massive gift to me. I forgot I was in a home, that it was mine. I couldn't open my eyes because I knew that whatever was there wasn't real. I couldn't speak. I lied there awake but also very much not. I honestly and truly do not remember what happened next. Suddenly days started to blend together, hours were and still are very confusing to me. And when I type, the harshness of the black against the white and the words moving faster than I can track them is the best way I can put it into words. I'm scared of words. They used to be my favorite thing. I loved words desperately and now, I don’t hate them but in stead, feel betrayed by them. My therapist would ask me questions, and I would stare into nothing while I tried to come up with an answer, get three words out before shamefully asking her to repeat the question. This was now my reality. The pain I experienced holding hands with the obligations each day with my physical health declining at a rate so embarrassing that I could barely look myself in the mirror. I did a couple days ago and got mind-fucked so hard. Who’s that? Oh, sweet girl, what have you done? Engaging in compulsive behaviors. Dangerous ones. At the same time though, something notable was occurring parallel to the desperate chaos. I no longer wanted to die. Not sure what happened. It wasn't some magical rainbow or vision but if I had to guess, there was just apathy. There are a lot of moving parts... a lot to consider and plan and figure out. A lot of emotions, guilt and desperation that come with that choice and within each passing moment, I found myself becoming apathetic towards the thought. I also know that if I ever start to come back; whatever version of me that is, will also not want to die. It's a gut thing. Bringing us to my next symptom, I now lacked the ability to think about events at all. Plans, dates, people, memories, responsibilities etc. The newest symptom arising about 2 nights ago, being that I forgot how to swallow. Fleeting moments of that but they were there nonetheless. So from this apathy grew responsibilities that come with successfully advocating for oneself to get help in the lowest of times. Which makes me want to open an NGO. I’ll explain…
Listen: A woman in her 60's with no family. Let’s call her Robin. She is filled with shame and not knowing exactly how to navigate multiple tabs, phone calls, records of any kind. No ability to log everything appropriately with the need to linguistically be able to express her needs. Dealing with people who she now had no choice but to advocate for you. Being perfect strangers. Taking a chance that she might actually pass as being sick enough to need help. Needing records upon records, interviews, years of medical notes, medical providers who now are being tasked with filling out endless paperwork. Getting approved for disability/FMLA which doesn't pay but rather promises you will have a job upon returning. All of the letters, notices, emails, all from different people all about the same things, all contradicting one another (by the way as I’m typing this the screen just jumped. Great, another symptom), ok, so FMLA (disability), handling any supplemental insurance that will pay any portion of her salary while gone, food stamps, phone conversations, physically having to drive when she can barely see. Having to answer people's questions without remembering what those questions were, words becoming more impossible by the day. Physical and cognitive symptoms creeping under her skin and soaking into bones. Every single one of those ‘portals’, uploaded documents, finding them at all, praying to get them back, not figuring out how to open them (dead ass, I forgot how to get a document to an email 2 days ago. Took me HOURS (because I had to do it twice and couldn’t remember how I did it the first time). Again, this bears repeating, being absolutely terrified of everyone and everything.
Nope, no rest for you, no rest for Robin
In fact, prepare yourselves as you witness those that 'loved you most' slowly fading into the background as you are drowning, desperately trying to swim. Alone.
Pending. Pending. Pending.
“Ma'am, all I can tell you is that your case is under review.”
I could write a script that would make millions if it were sold to every one of these agencies. Absolutely no kindness, empathy, care for the person unable to hold on any more slowly wondering “Am I speaking to a robot right now?” Then there’s navigating phone calls. Being transferred to another department to being put on hold as you are transferred... you get it.
Savings dwindling each day.
What I realized within this process, is that I am so damaged, that my cptsd (I know those letters aren't the right ones in the right order but fuck it) that kindness a stranger to me that any time someone shows me the tiniest bit of humanity, I immediately cry. I can't help it. Hours and hours each day with my new full-time job of agony, tank empty not being able to trust my own shadow (I can no longer look in the mirror) refreshing pages, begging for each pending 'case' or 'number' that I am assigned to will be accepted because quite frankly, if any one of them doesn't go through, I will have no choice but to go back to work. The job that slowly assisted me to this space while whispering “you deserve all of this”
I come back to that woman, Robin, who doesn't understand what she is supposed to do or have the logs, the vigilance of records etc. being forced to do this on her own and realizing that, says 'no fucking wonder so many people kill themselves, turn to addiction, isolation, a puddle of nothing.'
So I ask you, the reader, how fucking fantastic it would be to have a space for people to call. People like Robin. Explain their situation (with the end goal of being able to trust that they will be believed. That’s the hardest part by the way), the person on the other line now becoming their advocate. One person for each fucking human that needs help and can barely function. Be able to call in and only speak to 'Sarah' every day. Sarah asks the very simple questions, helps Robin to fill out paperwork slowly patiently simply. Sarah makes the phone calls, submits the paperwork as an advocate, then Sarah and Sarah alone checks the status each day. Because she was trained well, and she has the knowledge of resources, she knows the system and all she wants to do is to hear Robin cry with gratitude, with relief on the other line while saying 'thank you, I couldn't have done this myself' in return having Sarah reply with 'I'm so happy to do it, now go and rest' As I sit here and type those words, I sob knowing that for the most part, people are alone in this process.
Did you hear me? Alone.
The longer that I sit here, the more I realize that I have nothing. I have to rely on people who I’ve never met to accept my situation more and more by the day. I pray that someone cares, reads my actual first name and says it out loud. Because I am a human being, not 1529307902 (that’s honestly one of 4 numbers that I need to track, daily)
My situation would be vastly different if I didn’t have to speak, and jump as the phone started to ring. no. I have one person to help me with all of it who says "I believe you. I care about you. and I’m not going anywhere until we get this figured out” and even after that, she will “be here" for Robin. If I knew that existed for people like Robin, that would keep me going. Just one fucking person who didn't charge by the hour. In fact, she would set up a service to have food dropped off each day/week, whatever until food stamps kicked in, at that point Sarah would show Robin how to use them. My god. It's so counterintuitive for people in my position.
One that has broken me to a point of terror and apathy.
An aged regression version of myself.
Little Rachel is here, all she wants is to be believed, heard and loved. Instead, she has to face demons each day, praying for the next shoe to drop because no matter how loud that noise will be, it means there is a step. Whether it be backwards or forwards, it’s information. (sounds quite familiar. Not knowing what will come next. Being fucking terrified either way)
Doing all of this, passwords, numbers, status’ driving, food, pretending you’re ok.
Forgetting things. Where are my keys? Why do I need them? ok. I am going X. OK. I have my keys, now I need my cell phone... flipping apartment upside down to not find my phone. Once I do, where are my fucking keys? I know there are jokes about that but they are only funny when they pertain to those that will eventually result in a resolution. No. As I sit here today, I lost my debit card and am now stuck. It's gone. Shit is everywhere because I used less than the energy I had to find it 15 minutes before a doctor’s appointment. It’s still gone. My card was on record with them. I simply don’t have it in me to care about it. I don't have anything to give.
So, I sit here, hitting refresh all day. Having to keep up with texts, food, vomiting, shaking so hard that I can't type... the more time passes each day, the worse my symptoms get. For some reason, 2pm is when they start like a marching band, tearing through my amygdala one trumpet at a time. Turning off each light and no longer providing me with the gift of successful existence. I sit here and wonder, forcing me to believe myself that I am not well enough to work. ‘Oh yes you are, Rachel... stop being a little bitch. Everyone goes through this shit and is fine. Get your ass up and go to work like all of us do every day.’ ok so I sit up to take a shower not remembering the last time I did and am pushed back onto the bed by a force that doesn't exist, forgetting I can't stand up. "come on, stop this. You're fine. Drama queen as always." my reply "no I’m not. I’m not ok. wait.. maybe I am, though? maybe I am ok" until someone tells me that this isn't normal. That what I’m going through is different from the daily stressors of life. That I deserve rest. Rest is what I am most scared of though. I don't know what that will look like. I do know that this might not make sense to most. I feel deep shame, sadness, embarrassment, desperation, so much fear (all encompassing), helpless for so many reasons. I'm angry... furious (my left eye is twitching now as I type this) the inhumane treatment that I was forced to face by simply doing the best I could with the little I had left. Still pushing through my failing body. Due to one incident when I was in fact, a human being... god forbid.
It all changed. in one snap. one moment. I am now under the heal of every single person that has any pull at all. Like a teenager with no hygiene. Once again, being that girl. Just not good enough. Smart enough. Can't take it.
NO! I am a human being! a capable and smart human being! (And as I type all of this, deep down, I know that I am none of those things. They just sound affirming.)
So here I sit, on the couch with the only thing that has kept me alive through any of this and honestly loving him a little more than resenting him because of my desperate love and adoration. Our wildly unmistaken bond. I have to stay. At least for 15 more years. FUCK. unless, I... never mind. There are many sentences that I force myself not to finish because they aren’t safe. I think it's Saturday today (I later found out it was Sunday) Holy shit it's almost 1pm? I thought it was closer to 10/11am. Time is a mindfuck. As for today, nothing can be done. Other than keeping my tabs open and taking comfort in the one thing I know to be consistent.
That everything. And I mean everything,
is Pending.