Not There Yet – 2 – Brutal Recap

If this project has done anything so far it has shown me that I am nowhere ready to process my grief. I set out on this journey with the intention to do so and instead I neglected and ran from it even more than I had before. Which… is to be expected, I guess. There is quite a lot to work through in the wake of the hurricane that became my life.

During the last few days it has become clear to me that the phrase “they went mad with grief” or “their grief drove them crazy” isn’t just a euphemism. It is a very real thing.

Now, I haven’t looked into the actual science of it, but from my own experience it is a real occurrence. I have felt it. I feel it every other day. My brain goes off into these bizarre tangents where I “feel” like I’ve lived an experience before. Or that I have had some prophetic vision of this exact moment in the past; aka “de ja vu.” Some would just get that fleeting feeling and move on, but I have developed this weird obsession where I think it is tied to my impending death. As if I am next on the list, and I have somehow sent messages from the future to my past/present self to prepare for this inevitable end.

Crazy, right?

I try to keep myself grounded, but it is so hard not to get pulled into the orbit of this insanity. Which is why I have come to the conclusion that this is just my grief and my inaction in resolving it. At least, I hope.

To give a little more context, for those that haven’t followed along, all of this chaos began in 2019. Prior to the world literally falling apart because of COVID, my personal world started it’s free fall. It began in the waiting room of my mother’s neurologist. My mother mentioned in passing that my father had been falling. He had fallen 3 times the previous weekend. I very nearly joked about getting him a life alert, and in hindsight I should have. Shortly after this almost random exchange, my mother received the results of her second brain scan. The nurse practitioner turned to me and whispered that my mother had had a significant loss in brain mass within a years time, and was likely due to Alzheimer’s.

In the parking lot outside of the doctor’s office, I asked my parents if they understood what the doctor had told us. Neither of them did. Most likely because the medical “professional” didn’t tell them, just me. (It would later become a point of contention between me and my mother when her disease got worse. Those were always fun conversations.)

This all occurred on a Monday, and then on the following Thursday, I awoke to find a missed phone call from my father. The only problem was, the voice on the message was a stranger’s informing me that my father had been taken to the hospital.

For whatever fucking reason, I took my sweet fucking time responding. I got dressed, went to my inspection, informed my boss about the phone call, and then casually drove to my parents house. I pulled up to find my parent’s front door wide open, as my mother was waiting for me to get there. We got in the car, drove to the hospital, blissfully unaware of the cataclysmic shift that awaited us beyond the double doors of the ICU.

My father was brain dead.

What I have gathered from my mother’s many immensely morbid and graphic retelling and from the details from that stranger (who I would come to know quite well as Jessica) it all started when my father woke up to pee in the early morning hours. While in the bathroom he lost his balance and hit his head on the counter. He called for my mother, and as his head was aggressively filling with blood, he gurgled out “get help.” To which my mother’s response was to run outside, somewhere around 6 in the morning, and proceed to shout “help.” Somewhere in that time my mother went in and moved my dad from the bathroom into the bedroom, where she tried to get him into the bed.

It was never explicitly stated, but I have a hunch that in my mother’s dementia ridden brain and her moving of my father is where all of this met it’s ultimate conclusion.

I’m still uncertain, but from what I understand, my mother returned to the exterior to once again call for help, ignoring the fucking phone in her house that could have easily called 911. Outside she encountered someone who told her to do just that, however she had no idea how to do that or simply forgot. Who knows and quite frankly, doesn’t matter.

In that time frame she encountered the stranger Jessica. This woman, who my parents had never spoken with before, was their next door neighbor. She just so happened to be putting her son on the bus to school when she was confronted with my panicked mother. Here is where some sanity came into the situation and she did all of the normal things one does in a fucking crisis.

After piecing together context clues from my father’s cell phone, she called to tell me what had happened.

It is still so strange to me, even now, that prior to all of this she had never spoken with my parents or I. Yet after this day, she would become a huge presence in my family’s life. It was destiny, I guess.

By the time we finally got back to see my father, he had already had a chunk of his skull removed and the loss of whatever was left of his brain activity. He was literally being kept alive by machines. I remember the doctor telling me all of this with irritation, like he was annoyed that we weren’t there when he arrived at the hospital. (Was this my fucking fault?)

I remember going in to see him, unmoved by the limp form of my father in the hospital bed, and seeing my mother reach up and try to touch his fucking head of all things. I had to rip her arm back, as the piece of paper, directly above him, said to not touch it as literally just behind the thin, fleshy wall was his fucking brain.

It was in this moment where I was thrust into a world of care and authority I did not want, nor was I remotely prepared for. I was left to make all of the decisions about my father’s care and end of life options. Something no one in my fucking family had ever had the guts to discuss. Which makes sense. Talking about one’s death isn’t really a thrilling topic of discussion. However, since this entire debacle I have lost all discomfort about death and have discussed it at length with the ones who will be responsible for those decisions upon my demise.

This all happened in the end of June, just a week from the 4th of July. The leftover excitement of the summer season, remaining from my school days, no longer applied. This would forever be known as “the time of death.” As it would be accompanied by my mother’s and my husband’s subsequent passing.

With my father gone and being the only child of he and my mother’s marriage, I was left to care for my mother. Something that only became increasingly difficult as the grief of my father’s passing aggressively gnawed away at the weaker parts of her softening brain. She could barely speak. Whatever was imparted to me was in broken phrases or terms. It was like a second language. One my husband seemed to speak better than I did. Or she just pretended. That was something I wasn’t ever prepared for, the lying. My mother seemed to revert to a child and for someone who once couldn’t bear lying to me about Santa Clause at five years old, had zero issue speaking false truths now.

Another thing I wasn’t prepared for was when my mother refused to see me one time because she was adamant that I was there to kill her. That was a fun one. Her crazed red eyes glaring at me with distrust. I tried to guard myself from the possibility of her forgetting who I was, but not for this. I would have preferred her forgetting me. That never happened though.

Within 3 years of her diagnosis, she was merely a ghost of her former self. She passed in 2022, almost to the day of my father. Her body forgot how to swallow.

What’s weird to me now, is I am second guessing that year. Grief rampaged through my memory like a pack of elephants through the jungle. Now most things are half memories, if even that. Sometimes I have to ask my loved ones if that actually happened or if I am misremembering. (By the way, I was wrong. The date above is correct now, but it wasn’t originally. I was getting it mixed up with my husband.)

All of this became even more exhausting as a little over a year later of the traumatic “dad” event, my husband would be diagnosed with a terminal illness that would strip him of every ounce of muscle in his body. He would become wheelchair bound and I would once again be thrust into a role I never ever dreamed I would play.

I have joked so many times before, but it genuinely feels like I was cursed by a witch. The speed and the veracity of all that occurred leaves me paralyzed. And I’m left to ask, when is it my turn? If all of this could happen to the people I loved so suddenly, why not me?

And I understand that I am mortal and my time will come. With all of this, though, it feels like it is more immediate. As if it is this weekend. Or the next. Or the following month. Maybe even after I post this blog.

The one thing I cannot grasp is where to even begin or HOW to process all of this. (Is this even what is causing this overwhelming psychosis? Maybe I am just legitimately crazy.)

Everyday I just want to fucking scream. I am so angry at life. Sure there are moments of beauty but it feels broken, unreal. Like I’m living a strangers life and not my own. And it is that thought that send me spiraling, once again, into the land of crazy. So with that I shall bid adieu to you, dear reader. It is time for bed.

Does This Clown Taste a Little Funny To You?

Last night was a weird one for me. I spent most of my evening laying in bed “doom scrolling” details in the Epstein files. It got to a point that I started to physically feel fearful and repulsed, as if I had just watched some grotesque gore flick with a terrifying villain. Did that discourage me from continuing further? Oh no. I am a glutton for punishment and chaos.

At some point in my information consumption I had my interest piqued enough on the topic of Kuru that I started researching it.

Kuru is a disease that is caused by damaged proteins that have accumulated in the brain. It causes neurological issues such as: tremors, speech issues, dementia, muscle loss, and balance issues. All of these things I have witnessed in my mother, father, and husband until their untimely demise. Could this be the answer to why in the last 5 years I lost them all with very similar issues?

My mind spiraled out of control. In the abstract I can understand that this is just my brain trying to rationalize the abrupt disrupt and loss of my family. I get that. But… what if it’s my answer?

Well, the only problem with them having kuru is that it requires the consumption of human flesh, primarily the brain, that is tainted with… kuru. According to one of my MANY google searches, the last reported case was in 2004. This is a very rare and uncommon disease. In the history of the illness, it was primarily witnessed in a tribe that had a ritual of consuming their dead family members after their passing.

To my knowledge… My parents and husband were not cannibals. However, people do have their secrets. I didn’t know my husband was cheating on me, as I was actively cheating on him, until I caught him.

What this thought does do is lend credence to this fear that I have had over these last 5 years: that somehow/someway we were exposed to something that caused all of this.

When I would voice this to my husband, before he passed, he would immediately fire back, “Then why aren’t you showing signs?”

This is where I confess to the world that I am a chicken nugget and french fries man. I am the pickiest eater and won’t really venture out of my culinary comfort zone unless I am peer pressured into doing so. (Side note: I had a friend who had a serious peanut allergy tell me to try stuff at a buffet with a remark “it’s not going to kill you.” Shortly afterward we had to rush to the store to get Benadryl because the bitch didn’t bring her eppy pen.)

What if my family was given, without their knowledge or consent, human flesh to eat?

I have this really random memory of our trip to Lake Tahoe, where the wait staff watched us eat our meal, in an entirely empty restaurant. The reason it stuck out in my memory is because of how bizarre it was that they watched us… and how we were the only ones in the restaurant at dinner time.

All of these fears and assumptions are made worse by the very fact that we have only received half of the millions of files the DOJ possesses. And these are the files they were willing to submit. What’s in the other fucking half?

Now, do I really think that is the answer? No.

Is it just me trying to find meaning in their sudden deaths? Yes.

However… We cannot rule out this as a cause.

The only real certifiable answer I do have, that this is not the case, is that when my husband and I went to the Mayo Clinic for a second opinion to his ALS diagnosis, they tested him for everything while we were there. I imagine… that might have also included tests that would reveal signs of kuru. Like I said, it’s caused by deformed proteins. It’s not bacterial or viral.

(As I am writing this, I just had a random memory of a doctor asking him if he ate human flesh at one of his appointments where we all just laughed it off.)

In the big scheme of things, why does this even matter? They’ve already been taken from me. There is nothing that can be changed and having an “answer” does nothing but further fuel my confusion. Where would this have happened?! Why?

I need to just accept that life sometimes shops at Costco and we were just working through our bulk box of death.

Missing Peace

My husband was entirely too considerate. He would see/sense the frustration on my face while I was helping him and would always apologize. Nothing specific, just for being a “burden.” Hearing it would break my heart, because it wasn’t the helping him with (literally) everything, it was the impending loss of him that frustrated me. I equated watching/caring for him like dragging a sharp blade slowly across my skin. The image doesn’t encapsulate everything I wanted. It just brings to mind the torture of it all, and the unknown survival.

What I knew then, that I am very, very well aware of now, is that I dreaded his absence. Just thinking of him not being around caused me so much panic that I would begin to hyperventilate.

The last two days I have missed him terribly. We are entering a very scary time. My rock and the one who knew what to say to make me feel better, is gone. I’m left to handle my emotions alone, however chaotic and confusing they will inevitably be. There are those around me who will and do help. They are just not to the level my husband achieved. Maybe it is because he had 21 years to perfect his process.

In the beginning, he didn’t know how to handle me. I am a live wire. It takes a certain level of finesse to comprehend why I do the things I do or why I feel a particular way. In those early days he sure as shit knew how to push my buttons. Ones he would deliberately press to listen to the cacophony of noises that would erupt from me. He watched my explosion with glee until it would inevitably take a dark turn and he’d have to deal with the repercussions of having done it. Only through his “practice” did he learn.

More than anything I want him here with me. I miss him terribly. I finally comprehend why people leave this mortal coil after losing the ones they love. They’re chasing the belief that they will see them again. That it will be instantaneous. That the person you crave more than air will be waiting on the other side, hand open to welcome you there. Unfortunately, it’s all fantasy. A human mind trying to rationalize a very spiritual event.

Saga Of A Completed Manuscript

I’m sure most, if not all, have gotten tired of reading the phrase/sentiment “I miss my husband” in almost every one of my posts since his passing. At least, I would be if I were on the other end. But I’m also a heartless dick. If you are not exhausted with it, continue on.

On Friday I finished editing my novel. THE novel I have been editing and honing into a polished gem ever since I completed my first draft on my husband’s birthday in 2009. For those of you who can’t do some quick math, that is nearly 15 years working on this bitch. I have started and stopped countless times, either because life got in the way or I got in my way. The only credit I can lend to these individual endeavors is that whenever I would pick it back up, with all the enthusiasm of a teen girl at her fave artists concert, I would start in a new place. The logic being that maybe working on another piece wouldn’t wear me out or overwhelm me as it had before. Ultimately I would give up all over again from the aforementioned reasons.

At one point around 2012-2014 I decided that I was going to give up on being a writer. After each failure it wore away at my self-esteem to the point that this remained the only logical step. In addition it was just destroying my self-worth. Because I wasn’t hitting this high bar I set for myself, I thought that I was less than trash. To stop it, I gave up on that dream. I couldn’t get my shit together. Every time I tried, I failed.

Yet time does wonderful things for my ADHD brain. I tend to forget. Granted, I didn’t forget that I had given up on my desire to be a published author, I just decided that if I were to write it would be for me. To have fun! Which I did. I would enter the NYC Midnight contests for short stories or their flash fiction challenges. These little exercises tested my abilities and showed me that I may not be “THE BEST” I was still good. Published good? Maybe not. But I still had the talent.

For whatever reason I returned to my work in progress (WIP) a few years ago, right around when Charlie was diagnosed. I don’t remember the reason. All I know is that while on a road trip with my polycule I forced them to listen to my WIP. As my bf and I took turns reading it, I was astounded how much of it was already complete. Had I really done that much, I kept asking myself. Clearly I had. It was all there in black and white. Just a few short minutes before we got home I finished reading it to them. I felt this sense of pride. It was good. There were still inconsistencies and a couple chapters that needed a lot of work, but overall it was nearly there. I could see the finish line, however fuzzy it may have been.

When we finally got home, my husband said the one thing that, out of all of our wonderful memories of us together, this one shined the brightest. My husband looked up at me and said “Your story is really good, dear.” It came from nowhere, unprompted, and nearly knocked me off my feet. I said “Thank you” not sure if he was being nice for nice sake (he was DYING afterall…) and he reaffirmed “I mean that. You need to finish it.”

On July 12th, 2024 (12/7 the reverse of when I finished my first draft on 7/12) I finally finished editing my manuscript. I was stunned. I couldn’t believe it. I was elated and in disbelief simultaneously. I have dedicated so much of my identity into this ONE story that it was weird that it no longer existed in it’s original form. Immediately I wanted to call and tell my husband. Then… it all set in. Instead I told my BF and then my brother-husband. They were proud of me, but it didn’t fill the void I craved. So, I shared it on all my socials to lackluster response. My own high expectations ruining it of course.

To “celebrate” my achievement, I decided to leave work early and pick up my pre-orders from the Star Wars Unlimited TCG. On my way… I hit my husbands speed-dial on my car and called him. His familiar voice answered and I immediately cried. The line beeped and I barely got out “Hey punkin, I finished editing my book.” I was a mess the entire way to the store. Thank Taylor that it’s so hot, at least that gave some excuse to why my face was wet and red.

Now, I am left with the next step: writing a query letter. It’s terrifying and exhilarating all at once.

At family dinner on Sunday, I told my in-laws and they asked what was next. I told them the auto response (as shown above) and then told them my dream scenario. I said, that if I did magically get it published I would want, more than anything, a blurb on it with my husbands quote. “It’s really good, dear.”