Monday, Oct 18, 2021

Grieving while Autistic

Jess Hudginssawfishladyblog.wordpress.comContent note: This essay discusses death, disordered eating, and suicidality.The Beginning On January 11th..

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Jess Hudgins
sawfishladyblog.wordpress.com

Content note: This essay discusses death, disordered eating, and suicidality.

The Beginning 


On January 11th 2021, at 10:20pm, my father died. My heightened sensitivity to sensory input decided to record all of it, so very many things I don’t want to remember. The smell of sanitized plastic, the warmth of his skin against my cheek fading away, the way I held on to him until hospital security dragged me out screaming. 

I would like to draw you a picture of that day. I would like to explain in the vivid details that for better or worse I can’t forget. I would like to tell you exactly what it feels like to have someone call a time of death for your father who can’t possibly be dead, except he is. Instead I’ll describe the bright white light of the moon that was streaming into my bed room the whole night. And the white skeletons of the bare winter trees blowing around in the wind. The yellow hoodie which I never wore again. The familiar smell of my room in my childhood home. All these things I remember vividly. And perhaps this is where I begin. At this experience everyone labels as grief.


Illustration showing a bright white moon through bare white winter trees A person wearing a yellow hoodie with the hood up is sitting on a bed, crying.
Drawing by Jess Hudgins
[Image: Illustration showing a bright white moon through bare white winter trees
A person wearing a yellow hoodie with the hood up is sitting on a bed, crying.]

Getting Though the Next Two Weeks


I would like to say the night he died was the worst day of my life, but it wasn’t. It was all the days that followed, each somehow worse than the one before it. Everyday took me further away from him. The first week passed with near constant panic attacks and then in a Clonazepam-filled haze prescribed by my doctor. 

I could only feel was what was missing. I couldn’t hear his voice. I couldn’t smell him near me. There were no more cuddles and no more hugs. That the sensory input of love and family that I had known every day since I born was no longer in my life. And it was acutely painful, my skin hurt. My chest hurt. I would wake up in the night screaming for him. Everyone said that it would get better after the first few weeks. It never did. 

I spent long days in bed. Every second that passed was split between feeling like I was getting further away from my father, and wanting enough time to pass that it didn’t hurt so much. I couldn’t do anything for myself. I didn’t even know where to begin, I didn’t know what order things should happen in. 

There is really so much that needs to be done when someone dies. My friend was the one who called in for leave at my work. She did everything for me to the point that I still don’t know everything that she did. I truly would not have made it through those first few weeks without her. I lay there letting the world pass me by. 

Every morning I woke and the first thing I remembered was that was dad was dead and this black water would rush over me. Some days I never slept at all so I didn’t have to wake up. I didn’t shower, or wash my face. I couldn’t even open my mouth to speak. I had never been non-speaking before. 

My cat got fed because she was loud enough to scream at me. But I don’t know when I noticed that my snake was out of water. I don’t know how many days I had left him there like that. And I felt a new wave of loss a sorrow, that life would keep going without Dad. Whether I wanted it too or not. I guess that was the first checkpoint along my trail of grief. It couldn’t possibly, but life was moving on. 

After that the cat got fed, my fish got fed, and my snakes always had water.

The First month


I wasn’t actually aware that I stopped eating. More like I forgot that I actually needed to eat. I would put something in my mouth and swallow like I had done everyday day before. But the action of swallowing was so very unpleasant, it was difficult and I hated the feeling of food in stomach even more. It was a sensation I had never been so aware of. The slow, heavy feeling of eating. I know many of my autistic peers have texture and taste aversions, but I got an immense dislike for the feeling of anything in my stomach. I got an immense dislike for the process of eating in general. 

People kept sending me food, I know they were trying to be helpful, but I ate very little and when I did it would immediately make me throw up. I slowly just gave up eating entirely. 

One night I was having another panic attack—or I thought I was having panic attack, I had panic attacks all the time. I sat up in bed to look for those deep breathing Gifs on my phone. I sat up and a realized I couldn’t sit up. 

I slid down on to the floor. I tried to stand up but I couldn’t stand either, so I crawled into the living room. I was having a panic attack but my heart wouldn’t stop racing no much how much deep breathing I did. I tried again to stand up but I just fell back down. I lay there on the floor wondering if I was going to die. I didn’t much care if I did. But Dad would care. And in that moment, that was enough. I decided to call for an ambulance. 

I remember the bizarre sensation of making words come out of my mouth for the first time in weeks. 

“I don’t know if I’m having panic attack or a heart attack” I told them. It didn’t even feel like my voice. 

I remember telling them to take me to the hospital that had been good to my friends suffering through mental health crises. I remember the nurses sticking in an IV and drawing lots of blood samples. I know they asked me lots of questions but I stopped answering somewhere in the middle. I sat there in bed silently crying and they let me, and felt glad I remembered the nice hospital’s name. 

They brought me lots of warm blanket and those hospital socks like my father always used to wear so he didn’t slip on floor.

My potassium had gotten dangerously low, and my heart was having trouble beating. They asked if I wanted to stay there and I shook my head. They reminded me to eat more, and they called a taxi to take me home. 

I made a deal with myself to self to eat 1,000 calories a day after that. 

And the Next Month 


My mind and body physically hurt. There’s no other way to describe it. The world which was once full of so much love, so many hugs, and endless physical affection was now gone. Now there was only me. I would hug myself so hard to try shut out the loneliness, but dad hugs are a very special thing. It’s no replacement for the physical sensation and warmth created by those you love. And being constantly and acutely aware that it is gone forever can send you down some dark holes. 

I did try reaching out for mental health help. The first group lied to me multiple times and misrepresented their intentions. They scared the crap out me and threatened me with hospitalization when I said I was scared of them. I didn’t call the mental health hotline again. 

The second group I sought therapy with called for a police wellness check because I couldn’t stop crying. 

I know autistics get killed by police all the time during wellness checks. And I was completely overloaded. I covered my ears and squeezed my eyes shut but the police wouldn’t go away. If the therapist hadn’t still been on Zoom when they arrived I actually think I maybe would’ve been arrested or shot. 

And the third clinic was nice but they waitlisted me for many weeks. People who weren't autistic kept telling me to try a different hotline, and I think that was the first time I fully grasped that they don’t have to worry about getting shot just because they react differently. 

And then I started thinking there was no help for me at all. I had been traumatized to the point that I couldn’t try reaching out again. 

It ended up being a circle in my head. Dad would want you to live. Dad is dead. If I die I’ll be where ever he is. I’m not really afraid of dying any more. But dad would want you to live. 

One night I walked out into the snow, down to the small stand of trees near my apartment. There was stream there, half frozen, and the moon was full. The trees were bone white and it reminded me of the night my dad died. I sat behind some tree roots tucked into the dark where no one on the trail would see me. 

I had looked it up and it said in these circumstances it would take an adult 45 minutes to get hypothermic. I don’t know exactly why I had chosen hypothermia, but it seemed better than dying in my apartment and sitting there for days while my cat and my fish went hungry. 

It took a surprising amount of time. 

My friends knew I was depressed, but maybe I felt like they didn’t understand how hard getting help is, or how abusive the mental health system can be to non-neurotypical people.

I’m not neurotypical and couldn’t compartmentalize like they did. I couldn’t just ‘get it together’ and I could stop feeling it all at once. And so I sat there in snow listening to sounds of winter darkness around me. 

And I waited. And I waited. And I think I was getting a little bored so I took out my phone. There was another autistic woman I had been messaging from a community group and she offered to come over and just sit with me and talk for a while. 

And I realized hypothermia was probably a bit more complicated than they describe online so we left the forest and went back to my apartment. 


Illustration of a hand-drawn line graph titled "Actual Pain Over Time" with an X axis labeled "Time" and a Y axis labeled "Pain" At first the line is 3/4 up the Pain axis, is quavering but stable, and is labeled "Like static confusion" next the line goes up and down within a 10% range and is labeled "Daddy where are you" Next a small downspike is labeled "Ate food didn't throw up" Then the line goes off the Pain axis threshold and is labeled "DADDY!" Then the line comes down to the top of the pain scale and is labeled "Random good day suspicion" Then the line goes off the chart again and is labeled "Whereareyou?!" Finally the link comes back down into visibility before going off again, and is labeled "He's not going to answer is he?"
Illustration by Jess Hudgins
[image: Illustration of a hand-drawn line graph titled "Actual Pain Over Time"
with an X axis labeled "Time" and a Y axis labeled "Pain"
At first the line is 3/4 up the Pain axis, is quavering but stable, and is labeled "Like static confusion"
next the line goes up and down within a 10% range and is labeled "Daddy where are you"
Next a small downspike is labeled "Ate food didn't throw up"
Then the line goes off the Pain axis threshold and is labeled "DADDY!"
Then the line comes down to the top of the pain scale and is labeled "Random good day suspicion"
Then the line goes off the chart again and is labeled "Whereareyou?!"
Finally the link comes back down into visibility before going off again, and is labeled "He's not going to answer is he?"]


And After 


In my head my dad feels like a decompiling computer. A life is linear, there is long ago, and there is now. But for my father, things are happening all at once. Christmas ten years ago and Christmas this year are all memories I have at the same time. It’s unsettling. I hate it so much. It hurts to process things this way. 

I don’t know how I got to where I am now. But maybe it was just watching the slow crawl of time outside my window. From winter to spring and then spring to summer and now summer to the first reaches of autumn. 

I picked up all the replacement joints my father had in his knees and hips from the crematorium. I wrapped them in my favourite pillowcase covered with tropical fish. I sleep with them every night and hug them when I’m lonely. I have some of his clothing on the shelf and it’s comforting to have around, too see the familiar patterns.

I covered my house in orchids, like my father had done so many years ago. 

Some of my animals became sick in the spring. My snake Sara had issues with eating and my fish Max had a tumor in his tail that began to get infected. I swear, Max held on for as long as he could, until he knew I was strong enough to say good bye. And so I held on for him, because I knew he was relying on me. I will love him forever for that. I honestly think he saved my life. 


Photo of a small orange, black, and white pet fish.
Photo © Jess Hudgins
[Image: Photo of a small orange, black, and white pet fish.]

I lost my job in early spring. I struggled with money for a while. I eventually got into a therapy but I’m not sure how much it helped. It would have helped more earlier on, like right after my dad died. I feel sad that I had to go through so much of this alone. 

My blankie has suffered some serious wear and tear these past few months. 

I eat regularly again. I’ve gone back to my dance classes. I’ve started talking to people about doing a PhD. Which means I’ve been thinking I at least have a future. It’s a thing that exists even if I can’t quite imagine it. 

I still don’t get many hugs. I still feel emptiness in the space my father used to be in. I still miss my him every day. I still wrap arms around myself and wish that it was him hugging me. I still cry daily.

My father left me a life-changing amount of money. It’s vulgar seeing his life reduced to numbers. And I think, if give this back, can I have my father again?

I have accepted this as a new normal for my life. I know it would be sadder to not be feeling this loss so acutely. I am scared for the days when the memories start to fade and I can’t remember my dad as well as I do now. I saved his voicemails on my phone but I don’t listen to them as much as I used to. I still can’t think of him as past tense. 

There’s a new fish named Emile who lives in Max’s tank. I like Emile a lot. Time, it seems, will keep trudging on. 

There is one thing I am absolutely sure of: I will always be so very grateful that he is my father. 

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By: [email protected]
Title: Grieving While Autistic
Sourced From: www.thinkingautismguide.com/feeds/4016108224981109046/comments/default
Published Date: Wed, 01 Sep 2021 23:22:00 +0000

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