Death, the Digital World, and the book Death Glitch
CONTEXT:
- I have begun listening to the audio book Death Glitch: How Techno-Solutionism Fails Us in This Life and Beyond by Tamara Kneese.
- Earlier this year my mom's mom passed away. I didn't get to go to her funeral because my mom's brothers' feud.
- Earlier this month my mom was diagnosed with Stage IV Breast Cancer - a cancer that has returned after 20 years.
- Through this I've realized that that I have spent a lot of time thinking about and preparing for my own death, compared to anyone else's.
This blog isn't really in any particular order besides the order in which I think of things, so don't expect like a research paper with a well-planned-out format.
If you'd like to see the memorial page I made for my mom, you can see it here: Rhonda Lynne Morris
1. ARCHIVING MY DIGITAL WORKS
If you're someone who has gone through my repositories and webpages, you might have noticed that I host a lot of my websites on GitLab now, as static pages, easily clonable in a repository. I've done this consciously, considering that it would be easier for somebody to backup and archive files in a repository than with a live dynamic webpage. Part of the reasoning here is from my experiences with constructed langauges and PHP.
I've had so many projects over the years. I learned web development during my first professional job in 2010, using PHP, then using ASP.NET MVC for the next job. I set up a website for people to submit Creative Commons licensed art for use in video games (ArtSader), I built an Esperanto anime blog/website with Wordpress, and there have been various forms of Moosader.com and random little tools using PHP. However, I build once and then don't usually maintain these things. PHP versions grow stale, my web host charges extra for "legacy support", my apps fade off Google Play as I neglect to update my works. It's too much of a time commitment for something I do for funsies on the side.
I also studied Laadan for a time, after the author Suzette Haden Elgin had passed. There was more of an online community around this constructed language perhaps in the late 90s and early 00s via Livejournal, and at the time I was learning about it in the late 2010s, many websites were gone. I found what I could on the Wayback Machine and created a mirror on my own web server to preserve the pages.
Between having my own websites unavailable and others' resources unavailable over the years, I decided it would be better if I archived my own workrrrr in a more easily backupable format... Plaintext, static HTML pages, and so on. GitLab hosts HTML pages, so I can move my websites here. Even this Gopher server, I created a repository for it, both so that others could see the structure of my gopher page if they wanted to make their own, but also because this is all plaintext data and can be preserved in a repository. If GitLab ever goes away, then me (or someone after me) can import the repositories elseware.
Beyond digital backups of my games, websites, and other works, I also keep journals. I've been keeping journals since I was a kid, and considering I've been lugging them around each time I move, I figure it would be a waste to throw them out *now*. Teenage me was probably obsessing over boys, young adult me was also dating and stressing about my early career. These days I try to journal more about what the world and culture is currently like, what life is like right now, in addition to personal feelings. For some reason, I've just always felt the need to archive my life. Maybe these things could be donated to a museum and in 100 years people might look back on what it was like to live in 2020, or the 2008 recession, or whatever else.
2. PRESERVING LOVED ONES... AS CHAT BOTS?
The book [Death Glitch] in the first chapter talks about companies wanting to make chatbots out of deaceased loved ones' social media history, and my knee-jerk reaction was... "ew, no." Though I had at one time downloaded an open source ML tool with the intention to train it on my own Twitter history to see what kind of new posts it would come up with. Not as a way to archive myself, but more for the lulz and for the experimentation. This was before ChatGPT was taking over the world like it is now. (I hate all this AI shit omg, maybe a different blog post later.)
I had also read an article in a magazine (I think?) about a guy who recorded stories from his dad and created a chatbot with that, but that bot was more akin to the Woebot therapist I used... it would give chat bubbles as options and you click an option - not a ChatGPT-style AI that tries to generate responses to whatever you type. The author used it as a way to have his children be able to listen to stories from his father and other such things. I am more fine with this than an "AI" trained on social media posts - this type of chatbot can basically just a webpage, its interface is just via chat bubbles. However, I think the issue here is with presenting it as a chat application, and with the non-technical layperson then personifying it or thinking that it is more sophisticated than it actually is.
A digital "clone" is not the actual person. Preserving a pattern of behaviors does not make *you* immortal - your brain still dies. It does not make your loved ones immortal - it can't grow and learn and experience new things. It doesn't think. It's math operations.
3. UPDATES
[2024-10-09]:
Visiting mom at her house today, brought her a sandwich and cookies from Panera. She's been tired but doing better since coming come from the hospital. Some days she has more energy and some days she's more tired, and the extra tiredness has her worried. She sees the oncologist on Friday to find out more information - treatment, timeline, etc. We know from the ER visit last month that the scans show metastatic cancer, but I'm not a medical professional and I don't know how that affects her life expectancy, just that once cancer has spread we don't have a cure.
Mom mentioned that she had wanted to go to the orchestra again but hadn't made time to do so, and regrets it now. She's been talking about finding someone to take her dog for a new forever home. She mentioned that last year she had bought a couple of dresses in anticipation of going to her own mother's funeral but didn't get to wear them - in her mothers' last days, her brothers had a feud and one was saying that they'd murder the other.
We'll see on Friday what the doctors say. For now, I'm hanging out, laying on the sofa while she waits for Jeopardy to start at 3:00. Dad's in the other room, asleep to whatever TV show he was watching. The ice maker keeps spinning up and buzzing as it makes more ice. Why do they have an external ice maker that sits on a shelf and not in the fridge? I don't know.
[2024-10-23]:
This past Sunday my little sister and I went to go visit mom. She told us that she stopped taking her chemo pills as they were making her tired;
she keeps talking about accepting death - the cancer is uncurable - and she doesn't want to be in pain and become less and less able to get up and move around. Currently, she gets tired even before the chemo due to just less breathing capacity. She has the tracheostomy, but I don't know how that compares to normal uninhibited breathing without any cancers in the body pressing against things here and there.
It's weird and unreal to think about how one day, probably soon, she'll just be gone.
We don't really have any family videos except maybe some old VHS tapes - with cellphones becoming common, we just didn't do much recording like we did when we had a camcorder and my sister and I were kids.
It's weird how we just keep living, until we stop. We have to face the death of others, but we have to keep working and eating and breathing and walking and running errands.
We are all born and we all die, but as I face both fertility treatments and my mom's declining health, I notice how there's not much discussion of the complexities of the pregnancy process or the dying process. The process of grieving potential life not successful, and the process of grieving potential death creeping closer.
I wonder if my mom is truly ready to die. All my life my parents have talked about not wanting to be a "burden" when they get to that point. As I've become an adult, I can see now that it's ableism that is internalized. My mom talks about other ailing family and how they "burden" their caregiving spouses. I wonder if the internalized ableism is driving her more towards wanting to not exist over possibly ever being assertive with her needs and wants, thinking that now that she isn't very mobile that her life has no value. I tried to remind her that disability isn't a burden and we are here to care for her, but I don't know what her mental state is, if she's maybe at the point of not wanting to think new thoughts or learn new things.
I think a lot about contingency plans for myself... early death, additional disability, and how I could cope. What happens if my eyesight deteriorates beyond corrective lenses? My eyes are already *too bad* for LASIK to fully fix them. What if I'm left in perpetual pain from pregnancy? But, I don't think I would give up, and it wouldn't make me have less value, just as there are all sorts of human bodies and brains and we are all human and valuable as ourselves.
I don't really have any more thoughts at the moment, I am taking a break from grading programming assignments. I have a fertility clinic appointment here in a bit, doing a baseline test before the next step of IVF - implanting the single embryo that was deemed viable. We'll see how that goes.
[2024-10-29]:
I got to work early today like I do on Tuesdays - 6:30 am, ready to knock out some grading before I pick up a former student of mine to take her back to campus so she can catch the bus to her university. Got a coffee and a bagel sandwich and booted up my work computer, turned on "lofi hip hot radio beats to relax/study to".
Dad texts at 6:53 am, "Doctor appointment yesterday prescribed hospice, said weeks or months, not years."
Well.
It's maddening how fast cancer can do its thing. How mom had goals and dreams at the start of this year. She had a cancer checkup in December, one of many she's had over the years since getting breast cancer twenty years ago. They missed whatever was there, and by the springtime her voice was being affected by a tumor pushing against a vocal cord. Who knows when the cancer began.
I had always dreamt of mom being a little old lady, living to a really old age, possibly being a widow and just spending all her time going to different activities and events with her other little old lady friends. This image had stuck in my head since I was probably a teenager or young adult - we had come to JCCC's theater for some kind of performance and mom commented on the retired old ladies who had also come as well. Right now I'm just a building away from there, I work at JCCC now. I don't go to that auditorium very much, just for work stuff.
[2024-11-05]: Crying
It's another Tuesday spent crying for a majority of the workday... After my afternoon class my little sister sent me a screenshot of a message from dad:
"The oxygen is helping her not work so hard to breathe. She has decided to just stay in bed and stay sedated until. The nurse told me this morning it won't be long, maybe a week. He also said that everyone is different but she is transitioning quickly. Please understand that she is sedated and in no pain and the plan is to keep it that way. She loves you and wants you to get on with your life and know she is good with it all."
I shared the news with my coworker Kiran and a few minutes later I heard urgent footsteps heading down the hallway - she caught me before I left to go buy some more tissues for my office. She took me to a campus coffee shop and we talked for a bit. Right now it's 5:08 pm and I have class at 6:00 pm and I don't know what to do with myself.
All the posts on Mastodon are about the election today and I just feel so angry, like right now that doesn't matter to me, and my feed is a flood of posts about our musty ass political system. This country has murdered my mom, my aunt, and an online friend of mine via prohibitively expensive healthcare... We all bet our lives vs. our wallets, often not going to a doctor until it's too late, because we're afraid of going to the doctor for something that turns out to be nothing and a bill for thousands of dollars for our troubles.
I saw mom yesterday - I went to Independence, MO to vote early, had lunch with Colleen, my mom's friend that also volunteers as a tour guide at the Truman Museum (mom did until she lost her voice earlier this year), then stopped by my parents' house. Laid in bed with mom for a little bit. She hasn't been eating, her arms are so thin, she looked so fragile and small. I didn't realize that yesterday was the last time I would get to talk to her.
I'm going over there tomorrow... I cancelled my office hours. I guess I will mostly be there for emotional support for my stepdad, though listening to him complain about the system is just an additional stress for me.
I told Rai that I'd spend time with him tonight, watching TV or whatever. No real reason to sit around watching the election results. I barely get to see Rai since his days off are Mondays and Tuesdays, and Tuesdays I'm on campus from about 8 am to 9 pm... Mondays I have work from 6 pm to 9 pm. Rai doesn't even wake up until after 12:00 pm. Then he goes to work from 4 pm to midnight, so I have been spending a lot of time in the house alone (with the cats).
We have the IVF embryo transfer on November 22nd. Pregnancy test on December 2nd. I'm feeling pessimistic... nothing else has worked out fertility-wise so far, so I'm betting this time doesn't stick.
I feel angry that the start of this year felt so *normal*. That I always have hopes for a better new year. Last year, a drunk driver hit my husband in his car at a light and he lost his job afterwards, so we had financial struggles. In 2021 Rai fell off a ladder and broke his arm. I was counting on "odd-numbered" years having the bad events, I was hoping 2024 would be good. I spent the early part of the year prepping all my classes for this fall, in hopes of being pregnant, minimizing the work I needed to get done during the semester proper. Instead, we've been spending this Fall caring for my mom - visiting her at home, in the hospital, back at home. She'll probably be gone in a few days.
I had hopes for my mom's life, her aspirations I wantedd to see her fulfill, as though one hopes for the best for their children. And bit by bit she's given up on any recovery, any extension of life, of any hope. I think that if the cancer hadn't affected her breathing she would have been more tenacious... not being able to breathe is hard to ignore. It's easy to ignore some back pain or ankle pain compared to the sensation of not being able to breathe, and the tediousness of having to eat slowly to make sure your food doesn't go down the wrong pipe.
Now I have these ticking time-bombs on my own chest that I feel antsy to get rid of... I have to have a child first, utilize these tools for what they're meant for, and cut them off as soon as I can. Avoid the same risk altogether. I don't know why my mom didn't get a double masectomy after she had stage 1 breast cancer 20 years ago... I guess others' femininity is more important to them. She has had regular check-ups these two decades, but her cancer check-up in December missed. I guess it's a matter of checking and checking and checking until one day it's finally missed and it wins, takes over you.
I don't like having to learn this lesson a second time. Ten years ago aunt Norma (My stepdad's uncle's wife) passed away in her 50s or so from colon cancer... She had symptoms, but her doctor didn't do anything, and by the time she got a second opinion, it was way too late. I thought we learned to be cautious. This time, mom's voice was affected, and that was the first visible sign... Or maybe it was the slight tightness in her chest when she wore a bra. I don't know if she talked to a doctor about it... She did talk to her doctor about her voice degrading, and went to a specialist who investigated her vocal cords. We thought there was a treatment and that it wasn't cancer. But it became harder to breathe, so the cancer wasn't discovered until she finally went to the ER a few days before her birthday.
So what is the lesson? Go to the ER at any change? I mean, I've done that before, as much as my immediate family culture is to "never go to the ER"... When I was like 19 I went to the ER because I was throwing up blood (it was just anxiety). Sometime in like 2017 I went to the ER for chest pain (it was heart burn). I got bit by a chipmunk this summer and went to the ER for the rabies vaccine. "Well, if I'm going to have a kid, I'd better pre-emptively take care of myself." I remember thinking this summer, as I weighed the risk of spending hundreds or thousands of dollars on an unnecessary set of vaccines, OR the possibility of dying if the vaccines really were needed but I didn't get them.
Still ten minutes until I need to go to class. I'll talk about the C++ string library and file I/O. At least it's something to talk about, I can do that without crying. Will probably use PuTTY to SSH into my droplet to play Aardwolf while students work on their labs, or just leave early if all my students leave.
As far as getting anger out... Well, I have a downstairs bathroom with a damp, moldy sheetrock wall, and dad gave me tools to demolish that and tear out the tile-board and linoleum in the bathroom. So I guess I can do that. Not tonight, though. I don't know what I'll do when I get home.
It's a shame I don't drink alcohol or smoke pot / do drugs. Probably would be an ideal time to do that. But, alas, I enjoy sobriety and tonight wouldn't be a good night to *get drunk or high for the first time*, so.
Maybe I'll send my husband out to get me ice cream before stores are closed, and I can overdose on chocolate, maybe some garlic bread sticks, then go into a carb-fueled coma for the night.
[2024-11-11]: Feels unreal
Mom passed away on the 7th in the morning. I had stayed at their house the day before and that night so that I could help give her morphene and lorazepam every 4 hours. 4 am was the last time, and I thought I'd have to go into work so I went home for a few hours to get extra sleep. Dad texted around 7 am that mom had passed, so I drove back immediately. Saw my mom, was there when the nurse and social worker and the funeral home people came, watched her body get gurneyed out to a car, next to another body, and off to the funeral home. Cancelled class for the day, spent the day with dad and my sister, spent the night... dad changed the bedsheets on mom's bed and I slept there, spent time writing in my journal at her desk.
The day after mom passed dad wanted to get rid of everything that reminded him of mom. He heard me crying and told me to, "practice mindfulness, there's a hole, so fill it." - wtf. He's never been very emotionally mature, I see this as avoidance. But also, as mom's child, it hurts. There will never be more of mom's things, and dad - my stepdad or adoptive dad - wants to get rid of those things. Running from memories won't solve things.
I've brought a lot of stuff home, all my mom's random notes, several pairs of her glasses, scarves, a couple of coats, some shoes, little gifts that I had given her throughout her life. It feels wrong to get these gifts back... Like "No, these are for YOU. You can't return them."
Since Thursday (the 7th), everything has felt unreal. Like I can't believe that my mom is gone. And it's such a weird sensation. Maybe this is why humans invented religion - I know that mom has passed, but my senses feel like that's fake. Maybe people took this sort of liminal confusion as a sign that they could sense that there was something more.
People keep telling me that she's in a "better place" now and that she's "watching over me". I'm not at all religious. I don't understand how people can honestly believe that their dead loved ones are watching them. I can't even conceive of it. I'm tired of being told that she's somewhere better. I know she wasn't happy living with dad, I wonder if perhaps she was ready to go because it was her only conceivable way out of this marriage without him sabbotaging their finances or whatever. I wonder if she were in a relationship where she felt loved and cared for if she would have listened to a partner telling her to go to the ER sooner. She went to doctors, but only the ER did a scan, which caught the cancer, too far spread to be cured.
I wish mom would have told me how she actually felt, instead of trying to not be a burden, trying to not worry us. I wanted to be there to comfort her, but it still felt like she was trying to curate her experience for my sister and me. I wish mom would have kept journals, so I could learn more about her and what she thought about, beyond just what we would discuss verbally... Which, lately, has been mostly complaining about dad.
I had work today, I taught data structures, talked about binary search trees. I think I have a good rapport with my students. We can be sarcastic about code, talk about Linux and stuff, heh. On the drive home I cried, though. There were no stars in the sky and it felt like a closed door, like stepping through a threshold and that I cannot go back. Throughout my life there has been changes, but nothing has been quite so permanent or undoable. I am now a person without a mom, and I cannot go back to where I was before.
I feel more deeply tired. I feel more uneasy - like now I'm waiting for another bad thing to happen. On edge. Waiting to figure out whether to fight or fly. Maybe this is another baked-in instinctual response... the cancer got mom, stay alert, guard against it coming after me, too. Fear. Fear that I could be diligent and still miss it. One mistake could cost me my life, like it did hers. Realization that everyone I know will die, and depending on how long I live, I might have to experience more of this. Not knowing how I would possibly cope with the death of my sister or my cousin/best friend. But either I will experience my sister's death or she will experience mine (or, a third option, which I hope doesn't happen).
And suddenly there's so much death in media, even in song lyrics, the entire drive home. I was already tired of seeing death in games, killing tons of people because fighting is an easy "fun" game mechanic. Ugh.
I have to be up early tomorrow for my long day of work. I have to leave my home again and go see people and sit around while people ask me coding questions. I'm so exhausted. It's hard to concentrate. I feel apprehensive and jittery and frustrated and numb.
[2024-11-30]:
Dear mom,
I am sad about all the plans and goals you wanted to achieve, the talk of the future, your looking forward to a grandchild. I never got to take you on vacation... it always seemed so expensive, even more so in the past two years. I had wanted to take you travelling to any place you wanted to go, but couldn't with dad. There was so much happiness I wanted you to have. You deserved so much more than what this world permitted of a woman born in the 1950s. I'm sad that I couldn't provide a better life for you. It was all my daydreams of the future, a "maybe one day", but I can't dream of that anymore because it's too late.
How unfair, for you to be taken away and Jon left behind. I have a feeling that he's just going to get worse. You've done so much to help others and be part of a community, and he sits at home, rotting in his anger and delusions. I'm angry that if you had survived, you still would have been a prisoner of the patriarchy and to him.
I know that you like to be independent but I wish that you would have been okay living with us, though again, dad has a way of sabbotaging plans to get what he wants. I'm so sorry that he didn't die before you.
[2024-12-03]:
Hey mom, just thinking about you. I miss you. I'm just trying to get to the end of the semester so I can rest.
This IVF transfer didn't take, so we'll have to go through the process again. I know we aren't spiritual but I hope that a piece of you will be in my eventual child. I mean I guess it wouldn't be resurrection, I guess it's our DNA, your genes are in me and maybe I'll be able to have a child that will share our genes. I've never cared much about passing on genes but now I wish I could have a chance to take are of you and give you all the love and support that you deserved but didn't get from this world.
Earlier today I was thinking about places you took us when we were young. Weird local events, museums, music, etc. or just time together at the Raytown library.
Now that you're gone I feel like I didn't truly know your inner world. How you thought, what you thought about. I spend so much time with my own thoughts, but I feel like I only knew you at a surface level. I wish that we could have spent more time together, just coexisting and living life, not just getting Panera and "catching up".
I'm really tired, mom. I need to rest but I feel like I should be mobilizing even more with the impending doom of U.S. politics. I feel guilty for just wanting to spend December asleep.
[2024-12-09]:
Dear mom, just thinking about you. I'm feeling pretty lethargic, and December feels like nothing now without you.
No pregnancy. Embryo didn't attach. All the meds meant to strengthen the uterine lining just gave me a painful, long, and very bloody period. Maybe next time.
Wish you had been around for the U-- H-- CEO m-rder news. I think that you would have found that amusing.
I can't believe that you're gone. That you'll be gone next year, too. For forever after that. I just don't get to see you again.
I love you,
--Rachel
[2024-12-14]:
Dear mom,
We miss you. How can you really be gone?
A lot of times when I'm driving alone I'll start crying because you're gone. I miss seeing oyu, I miss hearing your stories and gossip about volunteering. I have your purse in the spot by the door so it always looks like you're visiting. I miss your hair and sunglasses and scarves, your laugh, your voice, the way your eyes look when you smile. I miss being your little kid, I miss our days at home together.
Death is tragic. I can't fathom how we can be full, complex people, a whole universe within us, and we can just die, that it's natural for all that to go away in an instant. I don't believe anything supernatural, but nature seems to cruel sometimes.
Why did single-cell organisms get together and evolve? Why did mammals emerge, carrying their young so close? Why did we become pack animals, an exchange of many broken hearts as a payment for safety in numbers.
I can see how humans gravitate toward beliefs that we're being punished, or that we've been denied immortality, or that death isn't real and that we'll see each other in another life.
The imperfection of a life full of love inevitably falling to grief over and over - if you're "lucky" to outlive your loved ones. The imperfection of a world crazy for arbitrary numbers that we exchange for goods, that some horde in imaginary systems, denying food, health, and shelter to others in the name of the fake number. Humans are weird. We survive hardship so we're strong, but the trauma breaks us emotionally so we're fragile. We build things larger than ourselves, but we die to glitches in microscopic cells.
Anyway, I wish you were here to talk about these things with.
Love you,
-Rachel
[2024-12-28]:
Dear mom,
I wish that I could have read your two journals before you died, it would have been interesting to ask you about our life right after leaving Randy. I wish I could have been there for you - besides being a baby.
I miss you.
Love, Rachel.
[2025-01-03]:
Dear mom,
Rose and I often find things we want to show you or talk to you about, then we remember that you're gone. My videogame-coded brain feels like I'll see you again when I start a "new game". A new safe-file, starting over from the beginning.
It feels so unfair, for life to give us loved ones but take them away. Why couldn't we have lived to be old ladies together?
And yet life keeps moving forward for me, but it also feels wrong for the world to just continue as normal.
Love you,
-Rachel
[2025-01-06]:
It's hard to think of anything to look forward to this year. Work is going to be a lot. The political world and U.S. life is going to suck. And there I am in 2025 - this year doesn't even have you.
How do I move forward when you're in the past? How is our life together completely behind us?
Rai is at least here - whenever he hears me crying he comes to hug me and wipe my tears. He just brushed my hair to calm me down.
I love you mom. I'm sorry that we don't have more time together.
--Rachel
Comments
Leave a comment