#autism be damned my fish can hold a phone

[ganjubai]

[lightspren]

Year End 2017 Wrap Up

I’m gonna be straight up honest with y’all, I almost didn’t do one of these for this year because this year has sucked horrifically and I just didn’t see a fucking point. But I’ve done one every year for like, at least four years now, and it’s tradition, and I for some reason feel it’s important, so by damn I’m gonna look back on my text posts from the year and my memories of what I was doing and see what happened this past year.

Jan 2017 - Was beginning my last ever semester of undergrad this month. At this point I still thought I’d be going to grad school hahahah so much can fucking change in a few months. Started my AC sideblog so that’s cool. and even this far back (: we still see me struggling with debilitating pain (: which has been a trend ever since I’ve been doing these year summaries I think, is seeing how bad my pain was throughout the year. jfc. looks like I was struggling with some depression symptoms here too, go fucking figure. I had an interview for grad school too and we know how badly that went…

Feb - Here’s where I decided I thought i might be on the autism spectrum. I now think I was wrong on that self dx, but you know, journeys of self discovery are important and all that. but here’s lots more pain and tired and “brain not working” which was lots of depression symptoms I believe, sigh I let that get bad for a while there. Oh and then I learned I didn’t get into that grad school I got the interview for.  so yeah that was Feb in a nutshell l o l

Mar - Breath of the Wild came out this month and dominated my life for a month or two, I still love this game very much and it’ll always hold a special place in my heart, ti’s just so good and sweet and lovely. I still haven’t even really beat it LOL and I need to but. still. that’s never been the most important part of Zelda games to me. OOO THO I had beginnings of existential crises this month!! cause I was getting so bogged down in my thesis research and didn’t know if research was what I wanted to do forever and ever anymore!! isn’t that fun!! (it was not fun). but the rest of this month seems like. a whole lot of bitching about pain. paaaain pain pain. like holy jesus bitching about pain. maybe if I printed off all these posts and gave them to my doctors they’d believe I have a problem LOL.

Apr - So I had shitty dr appointments that further hurt my chronic illness identity, and then other Ongoing Identity Crisis because of not getting into grad school and wanting a job in which I could help people. this is the month I in earnest started applying for jobs; research tech jobs mostly, but some adjacent jobs too (don’t remember what exactly). I didn’t branch out very far at this point though cause I was still McFuckin Terrified. and then I realized that I didn’t want to leave hundreds of miles away for work, cause as much as a lot of the culture of southern Appalachia can suck sometimes, it’s still home, /my/ home, and I don’t want to abandon it. I know I freaked out a lot about getting my thesis done and presented this month too bc I was soooOooOOoO unmotivated to do that shit LOL like. whew. did not want to, did not care any longer, but still had to do it.

May - GOT MY FIRST EVER TICKET LOL THAT FUCKING SUCKED SO BAD. sigh. otherwise I was mostly vague as SHIT with stuff this month. I know I graduated, didn’t walk though cause I could not give less of a fuck at that point. I applied for every job I could find that I remotely qualified for that was close enough I was willing to move to. I even had a Skype interview for one, either this month or in April. it fell through, of course.

Jun - One of my very first June posts is “who the fuck am I/how do I become who I want to be” LOL so that identity crisis was still rip roaring obvs. then that time when I tried to explain disability stigma to one of my previous (cishet white male) bosses. Had another phone interview this month for another job I didn’t get lmfao. Pretty sure this is the month where I started applying for mental health case management jobs, like a bunch of them, at different locations all in the company I’m currently in.

July - So I think it must have been around the beginning of this month that I had my first in person interview? I bombed that one hardcore. didn’t stop another location from interviewing me though, and I got a second interview with them, which I then proceeded to fail because I had no prior experience. It was brutal LOL. and the new person started at my old job, and I had to start training her, and that whole situation was just awkward and weird and Undesirable. to the maaax. it was this whole ordeal too where they’d scheduled my last day to be the 28th of July, so that’s what I was planning on and like, focused on… but then it turned out my coworker got national guard orders and had to be gone two months, so instead of having newbie there by herself, they were like (to me) “hey… just wanna… chill for two months longer or until you find a job…” which was admittedly hella cool of them.

Aug - Lots of blogging about pain, lots of general vagueblogging. I did announce publicly on tumblr that I’m intending to convert to Judaism so that’s still cool, and still a thing, even if life has been repeatedly crotch-punching me so I haven’t been able to make much actual progress on it. but then, I had the interview for my current job. that i somehow passed with flying colors. And my asthma started getting worse, and I started getting soooooo so done with my old IT job, but I /got my new job/. ALSO THIS MONTH WE GOT RADS MY SWEET NEW BABY so now our family is made of me, my husband, and two kitties.

Sept - September. Oh, September. started out so innocently, with starting orientation for my new job. I was all starry eyed and hopeful for the new job because I thought that it was a perfect home for me. then I got there. started doing things. realized that I was terrified of trying to meet my new coworkers and learn their dynamics. realized I was terrified of trying to meet my new supervisors/superiors and learn their expectations. realized that in general I just didn’t know the culture of the place at all and that fucking /terrified/ me. and then the job itself, the job itself was something I’d never done before, had no experience in /whatsoever/, had no FUCKING clue what I was doing. I was a fish out of water with no bloody idea where I was going, and hoooboy. I almost quit by the end of September, I truly did.

Oct - tw: miscarriage at end of month I started therapy for my anxiety!!! yay!!!! I had a lot of adapting to work in this time too that I didn’t really talk much about on tumblr too I think. I mean I was learning a lot, I was meeting more of my clients, some even time. I was still terrified, especially of my other coworkers because I didn’t know them or understand them, but even at that, I was learning. [Stop reading if you need to avoid tw miscarriage and skip to Nov.] The other horrifically sucky thing to happen in Oct happened not to me, but to my sister. She’d found out a few months perviously that she was pregnant, at 37 years old. they’d just recently gotten all the genetic testings back and found out they were going to have a girl. unfortunately though, the baby stopped developing at 15w. my sister discovered this at what would’ve been 17w. she had to have surgery to remove the baby. she’s still recovering from this trauma, she’s heartbroken and just. very upset. I’m still upset for her too.

Nov - Last month I was doing ok I think. I was doing pretty well at work, kinda just coasting along but mostly getting the hang of things. Therapy had been helping I think; it’d been teaching me somethings, mostly only small differences but I think having someone to talk to had been helping frankly. Work was going well, and we’d decided to start looking for a house to /buy/ (realtor.com) but hadn’t hired a realtor yet. probably for the best. as it turns out now…

Dec - Fuck you, December. the good news is, my new job’s health insurance kicked in Dec. 1st. which is great, considering I got admitted to the hospital  Dec. 7th, a Thursday. the Monday prior I’d tried to pop a zit, no big deal. WRONG. it got infected. not just any old infection, though, oh no. FUCKING MRSA. so I got cellulitis in my face, my whole right side of my face swelled up three times the normal, I got MRSA/pneumonia in my lungs, I had MRSA in my bloodstream. when I came in the ER I had very low blood pressure and heartrate of 130, so I was septic. like. shit was going down. I stayed in the hospital 6 days, and they released me with a PICC line and having to do vancomycin (really strong IV antibiotic) twice a day via the line. I went back to work too early for two days, but saw my PCP on the third day and he put me off that again. /Then the chest pain started/. I assumed it was a side effect of the vancomycin, since back and chest spasms/pain are a listed side effect, but NO, apparently NOT, at least not to this DEGREE. The home health pharmacy, who I called to ask about it, called the on-call at my PCP, who advised to go to the ER to get checked for a “pulmonary embolism.” Doesn’t sound scary at aaaaaaaaaall. Get in ER, go through the whole terrifying ordeal, CT scan, x-ray, shit and shebang - what do you fucking know. I have a septic embolism. very rare. much wow. fuck me. so here I am, once again, in a fucking hospital room, tied up to IV antibiotics, at the end of Christmas day. At least they’re keeping the pain meds going now. Oh at one point my kidney function tried to drop, then it turned out I had a pleural effusion so they drained 550cc (half a liter) of fluid off my lungs (painful as fuck let me tell you). Ended up spedning 5 days total in the hospital, home now, but still in like. the same amount of pain as when I went in. Having to fight with so many things to get medicines sorted and shit. while feeling like shit too. everything is awesome.

So that’s it. 2017. That doesn’t even get into the way 2017 has sucked on a global, non-personal scale, that’s just how it’s sucked on a mostly-immediately-personal scale, and I’ve even left out some of the immediately personal ones I think. and that’s just the shit I remember LOL jesus christ. I really need to do an effigy burning of this year.

[alt-ctrl-delete-f1]

*~*~OBLIGATORY TRIGGER WARNING~*~*

Listen, things are about to get messy so strap in. I’m going to cuss, I’m going to talk about frustrating, horrible, terrible, sad sad sad things. (Tags below) If you are struggling or feeling particularly fragile right now, please don’t read on, if you can’t. But this is true. And I’m writing it for two purposes:

1.    I need to. The story I’m about to tell is 100% true. And it 100% happened in MY life. This is cathartic for me because I’m at a point where if I don’t get it all out, I might actually explode in a glittery display of thoughts, feelings and fragments of sanity.

2.    If one single person reads this and realizes the permanence of choices, my work here is done. So I’m talking to you. The you who is nearly “there.” The you who is so exhausted and weary and tired and ready to just be done. The you who is desperately searching for one damn thing to hang on to. You may find it here.

As always, if you want to reach out, please message me privately. Please ask questions. Please comment, if you feel moved to do so.

And if you read no further, please know this: you are loved, you are worthy, you are special, you are beautiful, you are strong, you are amazing. I want you here. I want you to be your best you.

Ok, now seriously, I’m about to start.

Last chance.

[Soundtrack:]

Creep by Radiohead

Key lyric: “I wish I was special… but I’m a creep. I’m a weirdo. What the hell am I doing here? I don’t belong here…”

Pieces by Sum 41

Key lyric: “This place is so empty; my thoughts are so tempting I don’t know how it got so bad…”

Sail by Awolnation

Key lyric: “Maybe I should cry for help, maybe I should kill myself, I blame it on my ADD, baby…”

Believe in Dreams by Flyleaf

Key lyric: “We laugh about the past, but secretly wish we could go back and save the child…”

Unsteady by X Ambassadors

Key Lyric: “If you love me, don’t let go…”

Prologue:

Unlucky

________________________________________________________

On Friday, April 13, 2018 at 1735, my twenty-year-old brother sent three text messages within the span of one minute. All three messages read, “I love you.”

One was to his girlfriend. She was sleeping (read: not actually sleeping) with a guy who was not my brother. She never responded.

One was to his estranged father. He, as usual, couldn’t be bothered. He never responded.

One was to our mother. She had just been released from the hospital in Toledo and was driving Lyft in the area in an effort to recoup lost wages from her hospital stay. She could not view her messages for nearly an hour. At approximately 1820, she responded and said “I love you too. Are you ok?”

My brother never responded.

He took out his composition notebook. The notebook where he’d listed appointments with his probation officer, things to do, errands to run. The same notebook where he’d written notes to himself asking,

“Why do you push everyone away? You have no family left, no friends left. You are a failure.”

“Why are you like this?”

“Why can’t you just stop it already?”

He scribbled a heartfelt note to his girlfriend and a single, half-hearted sentence to a broader audience and left the notebook open on the dresser then searched his messy one bedroom apartment and found his yellow karate belt.

He set his phone on one of the shelves in his closet and climbed up on the next one. He wrapped the belt around a hook that was about seven feet high and by 1800, his heart stopped beating forever.

Forever.

In the days and weeks that followed his suicide, myself, my sister and my mother would learn many things. Some things we can’t get out of our heads. And others, we can’t seem to place. As though our collective brains are protecting us from a heartfelt acknowledgement of this ugly truth.

Personally, I learned that on average, it takes roughly 3-6 minutes to die by hanging. And that when a six-foot-two-inch man-child hangs himself against a wall in his closet, it looks like he’s hiding from his girlfriend to jump out and scare her. The dim morning light casts just enough shadow that you can’t see that his feet are actually six inches off the ground.

Did you know that for me, knowing that there was a shelf less than six inches from his right foot only solidifies to me that he was 100% comfortable in his decision to die – and thatfact makes me feel all the feels and absolutely numb at the same time?

Or that going through your dead brothers Facebook messages and seeing how many people he tried to contact, with absolutely no success was physically painful? And knowing that he didn’t reach out to you fills you with the most dreadful sense of relief ever – EVER– felt? Because you know that you were busy teaching your two-year-old to sing the ABC’s and your phone was off so you could focus on your toddler and that not having a missed message from your suicidal brother actually makes it easier, in a way?

And that you can hate yourself for feeling any kind of relief in this situation ever?

There was something inside of my brother that was broken.

He was born with a congenital heart defect – a truly broken heart. By the age of four, he’d had more open heart surgeries than he’d had birthdays. He was on the ventilator on and off for pretty much the first two years of his life (read: oxygen deprivation).

When he was three, my mother and my brother’s father had another baby boy. He was born prematurely and survived for 99 days, never leaving the hospital. This effected Caleb deeply. Deeply. To me, it was two-fold. Caleb operated on a different plane than other people. He truly feltthe loss of Baby Cole. This is interesting because he was so young. Then there was the life that followed. You know, the one that is on the right-hand side of the chart you make when you see a therapist and map out your life.

The “After.”

“After” the event that rocked everything we knew. When Caleb’s dad left and mom became addicted and suicidal. When I started cutting myself and my sister retreated into a fantasy world and our house was decrepit and CPS got called. When everybody’s grades dropped and mom didn’t get out of bed and the curtains never got opened because sunlight physically hurt my mom.

By the age of five, Caleb was committed to the pediatric psychiatric ward for the first time. I didn’t even know they admitted children that young.

The first time he tried to commit suicide, he wrapped his belt around his neck and pulled until he blacked out. The only reason he lived past that moment is when he blacked out, his hand relaxed and he couldn’t put tension on the belt anymore.

By age 10, he was in a pretty serious car accident and suffered frontal lobe damage, effecting his impulse control and mood control.

He spent countless time in live-in facilities for youth, psych wards, JDC, cop cars, grown-up jail, hospitals, psychologist offices, psychiatrist offices, youth pastor offices, senior pastor offices. He was in early intervention, had an individual education plan. He was on and off meds including Abilify (an a-typical antipsychotic, and actually he had some of the most success with it), seizure meds, antidepressants, mood stabilizers. Some worked, some didn’t. Sometimes they didn’t work because he didn’t take them and sometimes they didn’t work because they weren’t right.

There were diagnoses of ADD, ADHD, Mood Disorder (NOS). The list went on and on.

In his early teens, he was tentatively diagnosed with Asperger’s, effectively the last of many that never quite fit. It still wasn’t a perfect answer, as he didn’t even truly fit the mold for that, but the treatments that worked for him fell in line with similar treatments for people on the spectrum.

He attended high school at the Center for Autism and Dyslexia, a year round school owned and operated by an amazing woman who seriously spent her life understanding the mind of the Autistic/Asperger’s/Dyslexic child – and formed education plans the help them succeed. Indeed, that school was a light in a dark time for my brother. He’d just come from public school where he was nearly expelled. What for, you ask. Not necessarily for being unruly. But my brother was a protector at heart. So if he or someone he loved was being bullied, he charged like an angry bull seeing red. He graduated, likely by the skin of his teeth.

But these are just his stats.

They don’t tell you truly who he was. They don’t tell you about how Caleb flew into rages. How, seven years my junior, he beat me to the floor with a vacuum cleaner cord once because mom wasn’t home and we didn’t have a lot of food and one box of Kraft Macaroni and cheese doesn’t adequately feed three growing kids and he was hungry. Or how he used to crawl into bed with me in the middle of the night because he felt bugs on him all the time and it scared him.

They don’t tell you about how once we woke up and found him in his bed covered in what looked like a really unhealthy amount of poop but upon further investigation turned out to really be Swiss cake rolls. How he made us laugh with ridiculous jokes. These stats don’t tell you how he fought his nature in the most heroic way I’ve ever seen, trying to seek and maintain a relationship with Christ. They don’t tell you about how he asked Jesus into his heart, or how two weeks later he walked into the living room and told my mom he didn’t know if he believed in God because he prayed every night for God to make him stop being such a disappointment and every day, he disappointed everyone all over again.

Caleb’s finger nails looked like he’d taken them to eighty grit sandpaper. He was particular about clothes because finding something that didn’t make his skin crawl was a challenge. He was a cat person. He loved real-cam anything and to hunt and fish and shoot. He once made a toy pistol out of PVC pipe and before he would even hold it by the “handle,” he made me buy the brightest neon orange spray paint, so nobody would think he had a real gun.He didn’t want to scare anyone.

He wanted to be a special education teacher, because for all his faults, he felt deeplyfor people. He would sob upon seeing a homeless person. He once stopped - without a coat - in a frigid Ohio snow storm to help two women with a flat tire. He saved countless animals. He built incredible things with Legos.

He was impulsive and loud and incredible and hilarious and sometimes, he was even mean. He was a God damn hurricane, complete with flying furniture, flooding tears and an aftermath that rivaled Noah’s rainbow.

And you know what? I would rather have him running up my cable bill, buying porn and stealing my change to buy me a damn gift than be left with pictures of a bare bulb in a closet and memories that will neverbe enough.

Because for all the things that I saw in him, Caleb, well, didn’t.

He wasn’t good enough.

Not good enough for his father to stay, for his girlfriend to love, for our brother to live, for his brain to work right. He wasn’t good enough for his youth pastor to help or for therapy or meds or jail to work. He didn’t just slip through the cracks, he was sometimes shoved into them by the very people who now stand at a pulpit or podium and tell people to bring their troubles to them.

And frankly, I don’t know that Caleb could ever feel our love. And because of that, you couldn’t experience Caleb (because he truly was an experience) and think that his behavior ever indicated how he actually felt about you. He treated his family like crap sometimes and he treated his enemies with respect and showed them love. But can you imagine what it’s like to not truly understand love? He was – for lack of a more appropriate term – frustrated, his entire twenty years.

And he was pissed off. And scared. And tired.

And on April 13th, my brother left this world the same way he entered it – heartbroken.

_______________________________________________________

If I could ask a favor: just take a second and say my brother’s name out loud. His name is Caleb. Please whisper it, yell it, say it in pig-latin. I don’t care. Just for a second, remember him for me.

Now do the same for yourself. That is your name. It is a single word that ineffectively, yet poignantly sums up your life experiences and who you are. Someone may have your name, but nobody has your life. Comment your name, and I’ll say it too. Nobody should be forgotten, dead or alive.

This is the part where I would tell you that if you or someone you know is struggling with suicidal thoughts and tendencies, please contact the Suicide Hotline at 1-800-273-8255 and also link you to their website, and tell you that you can also text them at 741741if that’s your preferred method of communication. And obviously, I just did all that.

But I’ll also tell you this, I get it. Talking to a stranger is comforting to some and seems like an easy pass-off for others. On the one hand, knowing a stranger will never see your face and that you can spill your deep, dark secrets and obtain some semblance of unity with them can be comforting. Personally, it makes me mad because I don’t want to talk to a stranger. I want to talk to someone who knows me. But everybody has a preference.

But you can message me, and I WILL message you back. I know I’m not much different than someone on the end of the phone, except maybe far less qualified, but maybe we won’t be strangers when it’s all said and done.

I, however, am in no way a mental health professional. Talking helps, but there is also a time when you have to seek professional help. The links above take you to the direct websites where you can seek out help and resources in your area.

Tune in soon for Chapter 1, if you’re so inclined.