• Activity
  • Votes
  • Comments
  • New
  • All activity
  • Showing only topics in ~health with the tag "death". Back to normal view / Search all groups
    1. Deciding whether to continue with chemotherapy and immunotherapy

      I have stage four colo-rectal cancer. It's not curable. It's not particularly treatable. I'm getting palliative care, but I'm not yet end of life. They're not offering surgery or radiotherapy...

      I have stage four colo-rectal cancer. It's not curable. It's not particularly treatable. I'm getting palliative care, but I'm not yet end of life. They're not offering surgery or radiotherapy (yet, that may change). They are giving me chemotherapy (capecitabine and irinotecan) and immunotherapy (cetuximab).

      Prognosis is difficult, but if everything goes well I have about 18 months.

      I've had 6 cycles of treatment. I had a re-staging PET CT scan and the results were very good.

      But, here's the thing: chemo & immuno therapy suck. I don't just mean "I feel a bit bad sometimes", I mean "I feel awful most of the time."

      We've just about got nausea under control, but those meds cause constipation and that's causing problems with my stoma. And because the nausea meds are only used for the first week it means the second week I have problems with fast output, and that's causing other problems with my stoma. My stoma team and my oncology team are not particularly joined up. In theory I can build in laxido for the first week and loperamide for the second week but that's complicated because side effects are so variable. And that's just stoma output -- there's a bunch of other stuff around pain, fatigue, skin toxicity (I'm not allowed in the sun, even on bright but overcast days. I have to use three different creams, but not too much of any of them, and they're not compatible with each other), loss of appetite, etc.

      One example of how healthcare isn't joined up and I'm getting conflicting advice (there are lots of these): My stoma team want me to wear a hernia support belt to prevent my hernia getting worse, and to help my stoma work properly. But this is a tight broad elastic belt going round my lower abdomen, right where my diaphragm is, and so it makes it harder for me to breath. My physio doesn't want me to wear the belt because it's interfering with fatigue treatment (which is "do more stuff, but do it slowly, and build in breaks, and FOCUS ON YOUR BREATHING"). My oncology team have no opinion and are leaving it to the other teams.

      I know some people just want more life, and they don't care about side effects. "Do anything you can to give me more life". But that's not me. I'd much rather have 3 months of mostly feeling okay and then a month of active death over a year of mostly feeling fucking lousy and then a few months of active death.

      I don't know how to talk to my family about this. I have spoken to my care team and they're giving me all the options - (1) continue chemo and immuno therapy on 2 week cycles until I die or until it stops working, and try to buidl in better support meds. (2) continue chemo & immuno on 2 week cycles, but build in breaks (3) stop chemo & immuno and focus on pain relief.

      Some tricky decisions to be made.

      75 votes
    2. Neurodivergence and grief

      So, this won't be like the usual posts on Tildes. This will be on the long side and rambly, so I apologize for that in advance. Maybe this would fit better on a blog, but I don't have one so I'll...

      So, this won't be like the usual posts on Tildes. This will be on the long side and rambly, so I apologize for that in advance. Maybe this would fit better on a blog, but I don't have one so I'll post here instead. But while this post is definitely meant to be cathartic for me, I think maybe this will help some people too. Especially those who haven't experienced a super close or sudden loss yet.

      I want to talk about neurodivergence and grief.

      To start, I'm a 28-year-old woman. Higher end of the autism spectrum (diagnosed with Asperger's, though that term is out of favor now) and ADHD, and my parents managed to get me diagnosed by first grade. I've always known I perceived the world a bit differently from others, and this is further impacted by the fact I'm a writer. I often say one strange silver lining to being a writer is that everything is experience for writing. I've always been able to "detach" myself from reality pretty easily and view it from an almost outsider's point of view. Not full-blown disassociation, but I can step back more easily than most and start analyzing myself and others' actions. That definitely came into play here.

      Two weeks ago on Wednesday, August 23, my dad died at the age of 68. Heart attack while golfing, stemming from a lifelong heart defect (structural issue, discovered when he had a heart attack at the age of 17). He had no other health issues, he went to regular checkups every six months or so and his heart checked out as fine as it could at the last one. There was zero warning, he was in perfect health that morning and everything was totally fine and normal up until the attack. The autopsy confirmed there were no external factors like the heat at play, just his heart suddenly giving out.

      Just, one minute he was fine, and then less than 24 hours later my mom and I were sitting in a funeral home talking about packages and then to the cemetery to buy grave plots. It's the definition of a sudden death.

      They say that everyone grieves differently, but I've been aware for a while that my grief is different from others. Until now, my experience with loss has been limited to three grandparents and pets. No aunts or uncles died during my lifetime, no cousins, no friends barring a former classmate who I didn't know too well but who committed suicide. With my grandparents, I definitely noticed I reacted differently. For example, I ended up checking out caskets during my grandmother's wake and talking to the workers about things like cremation jewelry. I still feel a bit bad for my dad who patiently followed me in there during his mother's wake. With my maternal grandfather, I remember thinking about a book I gave my grandmother while at their house, and I'm pretty sure I mentioned it to my cousins. Keep in mind, this would be like two hours tops since he died.

      So, yeah. I've been aware for a while that my reactions to death and grief thus far aren't really "typical". I sometimes felt a bit guilty with how easily I felt okay after my grandparents died while seeing everyone around me nearly break. And more than that, I've been concerned about how I might react to other deaths. Particularly my parents.

      So what I'm saying is that my dad was my first brush with super close and sudden loss.

      So, now that you have the facts, I'll just start explaining my experiences with grief.

      The Initial Reaction

      My very first reaction: shock. Not even numbness, just shock.

      My mom came home, and said she had bad news. I immediately thought it must be my grandmother, who's currently 97 and whose health has been on a steady decline. Instead, she told me my dad had a heart attack at the golf course (oh my gosh, is he okay?) and was pronounced dead at the hospital. For the first time in my life, I found myself asking if it was a dream and genuinely wishing it was. I hugged my mom and whispered "please be a dream", just like I often read and wrote in emotional scenes, and I meant it.

      Almost right after she said that, the garage door opened and my first thought was that it was my dad, but instead it was my aunt.

      That's around when my "writer-brain" kicked in. I looked at her and said "(Aunt), Dad's..." I couldn't finish the sentence—or maybe it wasn't a matter of could not but did not, because my writer-brain pulled upon all the similar scenes I'd read and written. My aunt pulled me in for a hug, followed by my two uncles, and I cried into their shoulders. I repeated this when my dad's brothers and their wives showed up, and pretty much everyone else who visited in the coming days.

      Writer-brain led me to making a couple of docs on my phone: the first titled "Feelings of Grief", the second titled "Dad". "Feelings of Grief" was a bullet-point list of observations of my feelings and reactions. My arms felt heavy and kind of numb. Lifting my phone could be hard, every time I'd set it down or lower my arms in general my arms would just flop down to my side. I'd randomly start to cry and tear up. My chest hurt a bit. I felt empty. It was stronger when alone, maybe because I could distract myself with other people. Noted later in the evening that my arms were still kinda limp, and I didn't have many photos of dad on my phone, and please please PLEASE let mom's phone be synced to the cloud and the photos she had still there.

      One interesting note I left: it wasn't the same hollow feeling as the former classmate who committed suicide. Writer-brain had kicked in similarly back then. I remember noting to myself how my jaw just naturally fell open of its own accord, I even closed it and it automatically went slack. When our vice principal first mentioned he'd died, my first thought was "oh no, it must be a car accident". But when he revealed it was suicide, it was a gut punch and the feeling was just... hollow. I reaffirmed this the next day while talking to my mom that there's a difference between "hollow" and "empty", not one I can put into words, but a difference nonetheless.

      The second document on my phone, "Dad", started on Wednesday night as an obituary. When my grandfather died, my dad had told me how sad he always found those short obituaries, so I knew we'd have a long one. I'm a writer, so it felt natural that I start on it to take some of the burden off mom. The next day, I read it to mom and we ended up using it with minimal changes.

      What I didn't tell her was that the rest of the document was basically me journaling. I don't journal, but I know writing helps me process things and organize thoughts, so I just wrote. Starting with the words "Dad, I love you." I wrote out all my thoughts, a letter he'd never get to read. I wrote about checking the Ring camera and it automatically pulling up the video of him getting the paper with the dog that morning. I made my bed and cried, put away dishes and cried, couldn't finish folding the laundry because I realized some of it was his. At that point it clicked in my head that the format was poem-like, and I wrote lines with questions that could fit a poem structure. I'm not even a poet, I've always preferred prose, but that's where my brain went.

      And I also wrote about how I knew I'd be okay, because I already knew my grief was different. And how awful that made me feel. How I felt guilty that I wasn't there when mom was downstairs. She got the call while doing laundry, and I think I came downstairs right after she left. She went there alone, my uncle meeting her at the hospital, and had to wait until the doctor came out, while I was at home totally oblivious to the fact the most important man in my life was gone.

      So, I never saw my dad in the hospital. Never saw how awful he looked after the attempts to revive him, only saw him on Monday at his calling when he'd been cleaned up. Both docs had me wondering if maybe the fact I hadn't seen him let my brain detach more, let me distance myself from his absence and the situation, and if seeing him on Monday would be when it really felt real.

      Day 3 and Onwards: Weirdly Okay

      On Friday, Day 3 after my dad died, everything felt... weirdly normal.

      I think on Thursday, my brain was already starting to push me out of heavy-grief mode. Every time I hugged people on Wednesday I'd automatically cry, but I think towards the end of Thursday that reaction was dwindling. I think on Friday itself, it stopped entirely. I'd hug people but tears wouldn't automatically spring like the previous two days. I could even already tell, "Oh, I'm gonna get kinda tired of all these hugs, aren't I?" On Thursday I randomly cried a couple times, had to run upstairs to hug my mom as it crashed into me once again, but that didn't happen as much on Friday.

      I'd already joked about "literal Covid flashbacks", because I got Covid this year and my primary symptom was an eternally runny nose. I went through at least one tissue box on my own and by the end my nose was just sore from blowing and wiping it so much, so I joked my brain didn't want a repeat of that soreness.

      Inwardly though, I was reflecting on my previous experiences with grief. I knew I'd enter an "okay" state sooner than others, but I didn't expect it to happen so fast after my dad died. I still felt sad, but I wasn't randomly crying anymore. I live at home, never moved out and even attended a commuter college, we've always been an incredibly close family, so his death should be more... I guess devastating? Heart-breaking? It felt bizarre to me, to already feel like I was edging back towards okay.

      My theory: it's an evolutionary trait promoted in neurodivergence, to ensure that at least one member of the "pack" won't be vulnerable. Make sure someone can be functional enough to identify potential threats and such, maybe go out for supplies. I mentioned this theory to a few people in the coming days. My mom said it was almost like a superpower when I explained it.

      And as the child in the situation, it sucks. I don't have the experience or knowledge to do all these arrangements. All the financial stuff is on my mom since she has the accounts, she knows who to inform and could estimate how many people to expect, she had all the contacts who could help arrange and set up a reception at our house, etc. And even besides that, as the child in the situation, it wasn't exactly "my place" to do a bunch of that stuff. I couldn't directly help with anything but the obituary, provide tech support for getting the photos for the calling, and providing emotional support.

      So, yeah. That sucked for me because I knew I felt much better than mom did, but couldn't really do much to ease her burden. So it felt like I was largely leaving her on her own to navigate the funeral process. We had my aunts and some of her friends present to help, including some who'd experienced similar abrupt loss and could help guide and advise her, but there's still a lot of stuff she needed to do herself. She didn't have much time to really process it on her own because she was just so busy, I don't think she really got a chance to relax until Wednesday after everything was over. So for most of the process, I was much more cognizant of my mom's grief than my own.

      And I was honestly quite open with this. I didn't flaunt that I was weirdly okay, but people would ask how I was feeling and I'd be honest: "I think my neurodivergent brain is helping." By Sunday, I was still weirdly okay. The calling was the next day. I helped mom submit the pictures to the funeral home's website. We had a small horde of friends and aunts help move stuff to the backyard to prepare for the post-funeral reception at our house on Tuesday. We got through the day, and picked out dresses to wear.

      The Calling

      At the calling on Monday, I got to see my dad for the first and last time.

      My mom originally wanted a closed-casket calling, but agreed to open-casket because we knew some people needed it. Including my uncle, who'd been present at the hospital and who my mom described as even worse off than her.

      It turns out, my mom needed it too, more than she realized.

      My dad had an autopsy for a few reasons. I kind of expected one given his heart defect, but there was also the fact it was an incredibly hot day and he hit his head when he fell, so the coroner wanted to confirm what exactly the cause was. And as I said near the start, it was just his heart. As far as I'm aware, he most likely died instantly from the heart attack itself, but they tried to revive him for a while before calling his death, maybe half an hour. The doctor at the hospital said he'd tried everything he could to bring him back. Surgery, intubation, etc.

      To sum it up, he didn't look too good in the hospital. When I expressed regret I hadn't been with mom, she said she was glad I hadn't been there. I still wonder if that might have helped me get "okay" so quickly, since I didn't have the traumatic memory. He died away from home, so there's no traumatic memories associated with his body in our house. My first and only time seeing him post-mortem was at the funeral home, after he'd been cleaned up and dressed.

      My dad in the casket looked peaceful. I don't know if I'd say he looked like he was sleeping, but he looked so much better than I had feared. At one of the last funerals I attended, I felt like their body hadn't looked like them (and my mom also felt that way when I mentioned it to her later), so I'd worried that might happen here. It was a relief that dad still looked like dad. Later, one of the morticians commented about the nasty bruise on his head from the fall, and I know that bruises can be particularly stark on corpses, so. Big kudos to the mortician. I think seeing him like that, instead of her last memory being at the hospital, was a big help to my mom.

      Mom and I hugged in front of him and cried. We talked to dad a bit, and then people poured in. Relatives first, and then friends started coming, both friends of my dad and my mom. My mom is a social butterfly and has a MASSIVE social network in the local branch of her industry, to the point there's an actual joke about "Six degrees of separation from (Mom)", so there were a LOT of visitors just to support her. So my mom was in her element talking to people, while I floated around a bit talking to people I knew, hanging out with my cousins, helping introduce one of my dad's friends to other specific people he wanted to meet, etc.

      I myself had four friends visit during the calling. And this is what inspired me to make this post.

      Neurodivergence and Grief

      One of my friends also abruptly lost her dad a few years ago. It's been a while so I can't remember the exact cause, but I think he'd died of a heart attack too. And like me, she's also neurodivergent. So of everyone I know, she's the one person who could relate to me the most.

      So naturally, I told her about how I felt weirdly okay. I'd mentioned to others about how my neurodivergent brain seemed to be helping, mentioned my theory about it being an evolutionary advantage, but I went into more detail with her. I opened up a bit more than I did with everyone else, because I knew she'd gone through the same loss.

      And she'd had the same thing happen.

      I won't try to summarize everything we talked about. Some of it is personal and I reached some internal conclusions about her own experience she might not want me to share, but one thing that stuck out was that she told me not to let others act as if I was grieving wrong. She assured me that everyone grieves in their own way, and while everyone says that, hearing it from someone who went through the same experience as me just gave it so much more weight.

      I'd been aware my reactions to loss would be different since my grandparents died. I've had years to think on it, and by the calling I already accepted that it was a quirk of my brain. It didn't mean something was "wrong" with me, that I didn't love my dad any less. It's just my brain being kinda weird and helping me adapt faster. I'd once read a theory years ago that autistic people don't struggle with feeling emotions at all, they struggle with feeling too much, and their brains get overloaded and just shut down the emotion. I don't know how true that is, but at times like this, I think that might be true.

      But despite knowing and accepting this, hearing that I wasn't alone, that it wasn't just my brain and someone else had experienced this weird "okay-ness", helped more than I expected.

      And that's why I'm writing this.

      Neurodivergent brains don't process things the same as "normal" people. Anyone who's ND knows that, and every person's experiences with it is different. Even if you, the person reading this right now, also have ADHD and autism, you probably don't have a "writer-brain" analyzing events and your own emotions for writing reference the way I do. I got lucky to be born to two amazing, loving parents who never made me feel like I was wrong or broken for my differences, and to help me adapt to the world instead of trying to suppress those. They helped me accept it as part of myself.

      But while I've always known and accepted this, it doesn't change the fact that knowing others feel the same way can be a relief. Confirming that it's not just you, that there are others—it can mean so much.

      It's why I proudly identify myself as asexual to people I meet, to help educate others that it's a thing that exists and they're not broken. It's why I was so ecstatic to learn immersive and maladaptive daydreaming are things, to discover that my lifelong game of pretend isn't just some quirk of my autism and ADHD but something thousands of other people do, including full-grown adults. It's why people find pride and comfort in having labels at all, why even diagnoses can be a reason to celebrate: just being able to know you're not alone.

      I got lucky with my parents, who have loved and supported me throughout my whole life. I don't even like referring to ADHD and autism as disabilities, because to me, they're just different forms of cognition. Nothing to be ashamed of, they're just a part of who I am. I've spent years thinking and reflecting over myself, and managed to understand the core pieces of myself as a person fairly early on. And I'm happy to say I like who I am.

      Unfortunately, my story isn't nearly as common as I'd like though. Many neurodivergent people grow up thinking something is inherently wrong with them, either due to not knowing about their conditions, or because their own families tell them as much. Far too many people think they're awful people, stupid because of learning disabilities, or even just broken. Our "normal meters" are off by default compared to neurotypical people, and if you don't know why, it can really bother you.

      This strange okay-ness and quick recovery from grief seems like one of those things that would haunt people, lead to all sorts of guilt for not feeling grief strongly enough when you "should". The words "everyone grieves differently" feels like a kind of hollow platitude in the face of those feelings. It's one of those sayings that everyone spouts, like "time heals all wounds", but there's a huge difference between saying something and experiencing it. It's just one of those things that people say, regardless of experience with it. Especially when it's "normal" people saying it.

      So, take it from me now, someone who's neurodivergent and has just experienced close and sudden loss: You might feel okay sooner than you expect, and that's perfectly fine. It's just our brains being weird, and it says nothing about how we feel about the person we lost.

      Maybe the circumstances of the death will make it easier or harder for you to adjust. Maybe it will hit you harder when you're alone. Maybe you'll find comfort in surprising details. Or maybe it will hit you in bits and pieces, in the smaller things you notice as time passes.

      There are so many ways you can react. It really is true that everyone grieves differently. No matter how you react though, it doesn't automatically mean you're a bad person or don't miss them enough. It just means your brain processes things differently, and might be trying to shield you from the full brunt of the pain.

      And besides, even if you feel like you’re recovering too quickly, I think there’s a good chance you feel that loss more strongly than you actually realize.

      Nighttime Talks with Dad

      The last time I saw my dad was Tuesday, August 22, before he went to bed.

      I don’t remember our exact final conversation. We had a nightly ritual though where we’d either try to get our dog Zoey on the porch, or step out there ourselves. Zoey hates people hugging and kissing. For some reason at nighttime, just standing near each other can set her off. Every night when dad would come upstairs from the basement, the second one of us spoke, she’d start barking because she knew that was a precursor to physical contact. (Also, yes, this DID make the initial hug-fest after the news broke a bit frustrating since she barked constantly.) I like to say that she’s brought our family closer together than ever, and she hates it. Dad would go out of his way to give extra hugs and kisses just to set her off, laughing while she’d go crazy. Usually we’d try to get her on the porch so she couldn’t jump up on us while barking, but even after letting her back in he’d still sometimes give an extra hug and kiss just to mess with her.

      If she wouldn’t go on the porch, we’d just go out there ourselves. And in more recent months, we’d step outside on the deck to look at the night sky. Dad would usually go out there in the summer before going to bed, so I just started joining him. I think the only constellation either of us can identify is the Big Dipper, but it was still nice to look at the stars and moon.

      On Tuesday, August 22, we went outside as part of that ritual.

      The next night before going to bed, I stepped outside to talk to dad again.

      And I’ve done that most nights since then.

      I just step outside and talk to him. I don’t know if he can hear me. I’m not particularly religious and honestly terrified of the unknown eternity that is the afterlife, and I told him that. But I want to believe he can. I tried talking to him from the porch one night, but it felt wrong so I stepped outside to do it. So maybe it’s just psychological and in my head, or maybe it actually means something.

      And when I do, I usually end up crying a bit.

      That’s one thing I’ve noticed: while I stopped randomly crying throughout the day by like Friday or Saturday, I still cry at night when I talk to him. I think that little note I made on night one that I might feel the grief more strongly when I was alone was right. I’ve even said as much out loud, just asked, “Dang it, why do I only do this at night?” It’s the kind of time where I’d want to hug someone like mom, but by that point she’s in bed.

      I’ve probably weirded out Zoey with the near-nightly hugs after these talks. I doubt she understands dad is gone for good, and I don’t think she fully gets we’re sad. That dog lives in her own world and isn’t the brightest. At least she’s finally made the connection that water helps with thirst (no, I’m not joking. We genuinely questioned if she realizes water helps with thirst, and now that she’s drinking regularly we’re pretty sure the answer was “no”).

      Right now, I think during the day I can function fine. I think I am mostly fine already, wrong as that feels. I know that it will be the little things I’ll miss the most. Like him making my bed every day, or being able to suggest watching a show, or messing with the dog together, or coming home from visiting friends to see him and mom slow-dancing in the living room.

      But at night, when I step outside to talk to dad... Well, I think that’s when I allow myself to really process it. To process his absence on a subconscious level that I just can’t do consciously. Maybe it’s because it’s too much to process, like that theory about autism I mentioned earlier. I don’t know.

      One thing I do know: everything still feels surreal.

      My mom and I went to my cousins’ lake house over the weekend. We had already planned to go before, and last Wednesday my mom said “Screw it, let’s go up anyway.” We needed the change of scenery and time to decompress after the funeral. She later said it’s basically us avoiding the situation for just a little longer, and I think she was right about that. Being away from the house made it a little easier to act as if it was just a normal vacation, almost like a "girls' trip".

      I didn’t talk to dad while up there, maybe due to avoidance, or maybe due to my brain suddenly deciding it doesn’t like being surrounded by water in the dark. It was never an issue on previous visits. Last time we were up there, dad and I sat on the dock staring up at the stars and just being in awe. We’ve been reminiscing about it all summer long. I planned to talk to him, but the first night on the dock I turned off the flashlight on my phone and my brain basically went “nopenopenope, water everywhere verybad runrunrun get to land runrunrun”. So that's a thing now, good to know I guess?

      So, yeah. We got back on Tuesday, and were exhausted from a seven-hour car trip. And then I talked to him again last night. Cried a bit, because that’s just how those talks tend to go, and then I went inside to hug the dog before sitting on the couch to resume my usual quasi-nocturnal routine. (I got upstairs and into bed before 4 am though, so I'm getting better! Little victories.)

      Closing Thoughts

      There’s a lot more I could say, but I don’t know what. Usually I like to edit these sorts of rambles to heck and back, but this time I’m doing minimal editing. (Editing note: I apparently lied, just went back to reread and edited it as I went along, dang it.) For now, I want to focus on some more closing thoughts and miscellaneous details. Things I couldn’t fit above too well, but think need to be said and shared. Maybe it can help you, maybe it won’t.

      The benefits of how my neurodivergence is impacting my grief: I can help my mom more. I’ve already decided I’ll take on the task of figuring out all the account transfers (e.g. Netflix, Ring, etc.). I was also able to go through my dad’s laptop to find photos, just quickly page through them and look for any photos with him. I’m not sure my mom could have done that herself without getting sucked into each memory they held.

      I will say that, as a writer, I like to think I understand emotions better than most people. I like putting myself in people’s shoes to figure out why they feel a certain way, understand their mindsets and how it influences their thought processes and actions. I’m definitely incredibly empathetic compared to the average person. That said, just because I understand their feelings, it doesn’t mean I know how the heck to handle it. My brain tends to freeze up. Happened when my aunt burst out crying and hugged me when my grandfather died years ago, and it will probably happen again now.

      So I’m still out of my element if mom suddenly breaks down sobbing and crying. I think this will apply to many of us. So uh. Sorry guys, I don’t have much advice for comforting people other than “just hug them as needed and let them vent”. Hugs can REALLY help though, I think some people these past two needed the hugs more than I did.

      On that note, feel free to reject the parade of hugs. I know a lot of ND folks don’t like physical contact or hugs anyway, but neurotypical folks can get over-hugged during these times too. One of my mom’s friends who lost her husband told us that we might get sick of hugs. So don’t feel obligated to accept them just because of the occasion. You're the one grieving, so they can't judge you for refusing. If they judge you anyway, they're assholes and don't deserve to have their opinions considered.

      One of my main coping mechanisms is humor. I try to be mindful of it and keep some of them to myself, but I might've made some jokes that are "too soon". For example, our dog is the only thing now standing between my mom and I from becoming crazy cat ladies. Previously it was my dad's allergies, so yeah. If you also cope with humor, just be careful about telling the jokes. The pain can be more raw for some than others, and some jokes might be too much. Some people are really good at putting up a strong front, so you can't always be sure how they'll actually take it. So be careful.

      I mentioned earlier that when my mom told me the news, I first thought it was about my grandmother. At the time, part of me wished it had been my grandmother, which made me feel guilty. But I later found out pretty much everyone had this exact reaction, including my aunt (her daughter) and I think even my grandmother herself. We've all been sort of mentally bracing for her death, and she's 97 so she’s lived a long and good life. It would still be sad of course, but, well, we’re expecting it. No one was expecting my dad to die though. So if you find yourself with similar thoughts, don’t feel like that makes you an awful person.

      One of the biggest benefits of my neurodivergence though: I was able to give a eulogy for my dad.

      I honestly expected I’d give one from day one, but apparently no one else did until I talked to the minister right before the service. Originally we said I’d go second, between my dad’s best friend and his brother. After his best friend’s speech though, I realized I should definitely go last. I could tell they’d be telling more lighthearted stories, and mine would set a different tone that served better for the end.

      I wanted to talk about dad’s love, his most defining trait and the most important thing he passed on to me. He was the kind of man who’d sacrifice for the people he loved, who’d go out of his way to find a specific restaurant despite wanting to go home just because we mentioned wanting milkshakes from there. Heck, last Christmas we all agreed to buy just three gifts each, and guess who didn't stick to that rule? I swore I'd buy a blu-ray player sometime this year instead, our DVD player doesn't work with the new TV we got in the basement so just needed to run to a store together. (I still might, but it's a lower priority now.)

      Besides all that, I wanted to share a story he told me, that I’ll also tell you now.

      When my grandfather was a little boy, one day at school a classmate came in raging mad about a fight with his own father. They’d had some argument, and this kid was ranting about how he hated his father. Petty, empty words because he was still mad at his dad over whatever they'd fought before.

      Well, his father died at work that day. Car accident, I think. And the boy grew up knowing his last memory with his father was that awful fight.

      Yeah, that sounds like an awful story to tell a kid, huh? I must have been five or six when he told me, and it was probably because I was pretty angry at my mom for some stupid petty reason. Just a kid throwing a tantrum, you know how it goes. Maybe it was a true story, maybe he just made it up on the spot to show me that being mad at my mom over petty little things was wrong. Either way, it worked. And I think it worked better than my dad ever knew. Thanks to that story, I grew up aware in the back of my head that death can happen suddenly and without warning. Maybe that’s a bit of a bad thing, but I’m grateful I got to understand that so early on without experiencing that sort of sudden loss myself. And it stuck with me, just how awful it would feel to have your last memory be such a bitter one.

      So, I made a point to always say “I love you” to my parents and any others I care about. They go to bed, “Good night, I love you.” They're going on a trip, “Have fun, love you!” when they leave and at the end of every phone call. They’re just running to the grocery store five minutes away, I open the garage door to stick out my head to say “I love you” just to make absolutely sure it’s the last thing I said to them, just in case.

      I don’t remember my exact last words with my dad. But I know that it was almost certainly “Good night, I love you” just like countless other nights. And I am so damn grateful I can say that.

      So I passed on that story at his funeral. And afterwards, I got countless compliments about how strong I was for speaking at all, and how I didn’t stutter or need notes (someone asked if I had public speaking experience, and I don't, so I guess I might have a natural knack for speeches??), but... I think that was most definitely because of my neurodivergence. I think I’ve already made it quite clear over the course of this post, but by the time of his funeral, I was, weirdly, okay. Sad and empty, but not devastated. So I could deliver my message clearly, the same one I'll pass to you:

      My dad was a wonderful, loving man, and everyone should remember that you never know which goodbye will be the last one. So make sure you always punctuate your farewells with an “I love you”, and try not to ever part on a bad note. Not even when you’re just going to sleep.


      If you’ve read all of this, thanks. And I hope maybe this ramble of mine can help people a bit too, especially those who have yet to experience such a loss themselves.

      Remember, everyone experiences grief differently. Maybe it will devastate you and you won't be able to function for a while, or maybe you'll be able to largely go back to "normal" a bit faster than you expect like I did. Brains are weird, even without throwing neurodivergence into the mix, and there's so many factors in grief that makes every experience truly unique. I'm not sure I'd be nearly as composed if I'd seen my dad at the hospital, or if he'd died in pain or of heatstroke. The inevitability and quickness of his death, the fact we could have done nothing to prevent it, has been a surprising comfort to both me and my mom because there are no agonizing "what ifs" to haunt us. We're not sure how we'd feel if it was something preventable, that's a "what if" I don't want to consider.

      Just remember that no matter how you respond, somewhere out there, there's likely someone else who's had the same feelings and reactions as you. You're not broken, you're not an awful person. You're just you. Your reaction won't diminish whatever feelings you have for the person—and note that I said have and not had: just because they're gone doesn't mean those feelings are gone too. He's still my father, I'm still his daughter. Death doesn't change that, it just means I can't hug him and tell him that directly anymore. The same applies for every other loss we'll experience. There's a reason some people refuse to date widows and widowers.

      Today, my aunt left. She’s been staying here since he died, she flew in from out of state. Tonight will be the first night with just me and mom at our house. This is the first night of our new “normal”. I don’t think we’ll have anyone over tomorrow besides the cleaning lady (who last came the day after he died—felt kinda bad for her to visit that day knowing what happened), so tomorrow will be the first day it’s really just us. The first day we won't have any real distractions from his absence.

      I don’t know how we’ll feel in the coming days, how things will go from here. Maybe his death will finally really hit us now that we’re not in funeral-preparation or vacation mode, and can sit and breathe in our own house. Maybe I’ll have a delayed grief reaction. Maybe my mom will break down sobbing in her bed tonight or tomorrow. I don’t know. Everything feels almost dream-like, like we’re in a weird limbo but also not. The world’s still moving without us, and we’re slowly moving with it.

      All we can do is take it one hour at a time.

      51 votes
    3. 'We're on the right side of history': Victoria’s assisted dying laws come into effect for terminally ill

      News article: 'We're on the right side of history': Victoria’s assisted dying laws come into effect for terminally ill Legal outline: Voluntary assisted dying laws commence in Victoria - Voluntary...

      News article: 'We're on the right side of history': Victoria’s assisted dying laws come into effect for terminally ill

      Legal outline: Voluntary assisted dying laws commence in Victoria - Voluntary Assisted Dying Act 2017 (Vic)

      6 votes