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I haven't posted here in years and years, but my other social media outlets don't lend themselves to long-form ramblings, and I'm in desperate need of an outlet.
Raq passed away, on the evening of December 28th, 2025. They were tired, and I'd been sitting in the other room because my sciatic nerve had been causing issues, and the chair in there was the best place to sit. They lay down for a nap, and after a while, I got on the computer and started playing FFXIV.
I hadn't played with friends earlier, so I did my regular weekly things, then decided I'd have a go at the first two Arcadion fights. I made themed glams for them, cause I'm a dork. I took a bunch of screenshots cause I planned to show Raq after.
While I queued and played, I occasionally heard sounds from the bedroom. Raq snored a bit, and I could tell they weren't sleeping solidly, because I'd hear them take a drink now and then - I'd recently bought them a new water bottle, one that was metal and insulated, but with the same silicon bite valve they liked, and it rattled when they drank because I'd put lots of ice in.
I managed my retainers (they fetch you stuff) after the second fight, then decided I needed to get up and go to the loo. I peeked in as I past and figured Raq was asleep.
I go back and forth on that moment. I don't know if it would have made a difference if I'd gone in then or not. And since I can't know, I try not to think about it.
I went to the loo, and I was in there a little while. Then I went to talk to Raq, because it was getting late enough that I figured I should wake them and sort out dinner. And that's when my entire life began to fall apart.
They didn't wake, and their lips were blue, and I screamed for mum to come and help. I could tell from the tone of her reaction that she thought I had to be wrong when I told her I thought Raq was dead.
She ran down, saw for herself, and immediately called an ambulance. We did our best with CPR till they were close, when I ran upstairs to let them in and direct them downstairs.
They asked if we could move one of the cars - mine - so I ran out in my nightie with no shoes on and had to dodge around the ambulance to get out onto the street and park. I wonder now if they were trying to get me out of the room.
I ran back in, and then I just had to sit in the kitchen and wait, and hope, and fear.
They asked some questions - I don't remember most of them, except they asked about my ritalin, and I had to explain it was mine, and they asked a bit about Raq's health in general. And I sat there and felt myself go blank.
There was very little urgency in the sounds we could hear, and I heard someone reference "code 4". I looked that up, and I knew.
The main guy came up a few times to talk to us and ask questions. I don't remember all of it, but I remember him telling us they were trying to keep Raq's system functioning, but their body wasn't "kicking back" and taking over. And in the end, he came back and told me he was very sorry.
Because Raq hadn't been under the direct care of a doctor, and there was no reason to expect their death, the paramedics had to call the police. The lead guy said, if I wanted to say goodbye, they'd neatened things up, so I could go down and sit with Raq until the police arrived, at which point they'd make me leave again.
I did. I came down and I sat on the edge of the bed and I kissed their forehead and stroked their hair and didn't cry because I still had a damn cold, and if I'd started sobbing I would have been coughing and choking in moments.
Two cops on swing shift came and looked over the room, and asked us more questions. They had to call in detectives (a formality) and one of them had to go and get some forms they didn't have on hand. Mum talked to them about their jobs, and the strange way their shifts are rotated, and how long they work. I think this was when I really started dissociating.
The detectives came and left fairly quickly, muttering "sorry for your loss" as they shuffled out. The forensic people had to come and record the scene, even though everyone already agreed it wasn't suspicious.
The senior of the two original cops started talking about the coroner coming, and what they'd need to do to get Raq out. At one point they were talking about removing a window, and I could feel mum getting anxious about that. But in the end the police rescue team came, and they decided they could manage the stairs.
The cops, and the paramedics before them, told me I should be somewhere else when they moved the body. They said no one should have to see that. We could hear things, though. And they left damages here and there. I suspect they laid a ladder on the stairs and used it as a ramp. Someone at some point stepped on the folding bed table I had leaning against the foot of the bed, and shattered it.
Someone else, probably the paramedics, knocked things off the bed, and broke up the faux-lego advent calendar Raq had been working on. I got it for them for their birthday, and it made them tear up because it was just what they wanted.
I haven't gone through the room to find all the pieces yet. I don't know when I'll be ready for that.
I sat in mum's room while they worked, and they took a long time. It was hard, sitting there staring at nothing and hearing sounds.
Mum came and sat with me for some of it.
She's had a lot more exposure to death than I have, directly and indirectly. Her mother died when she was about 6, then her father when she was 10. She and her sisters were raised by their grandmother, who died when mum was in her 20s.
She married my dad, who died about 7.5 years into their marriage, leaving her with two kids under 5.
So she sat with me, and she watched as her daughter followed part of the same pattern.
The only person we told that night was my brother. I can't remember if he called or if mum called him. I didn't want to post about it online till we'd told Raq's mother what had happened, and we couldn't get through to her that night. I ended up messaging her the next day and finding out that we'd been calling the landline, which no one ever answers. So mum ended up calling her on her mobile and letting her know.
I couldn't have called. I couldn't even be in the room when she did it. She came back and told me Raq's mum had been worried something had happened to me, and that she sent her thanks to me for giving Raq so much of what they'd wanted for so many years.
People didn't all leave the house till very late that night. And then it took a bit of time for me to be able to sleep. I don't remember now what time it was, but it was hours and hours between us calling the ambulance and the house being quiet again.
The first day after, I was still fiercely shut down. After we'd told Raq's mum, I shared the news on bluesky, facebook, and discord. I think people's reactions made me tear up, but I was still coughing, so I couldn't really cry. I tried to distract myself with the audiobook I'd been listening to, and I couldn't that day. So I stared at nothing, or played solitaire on my phone, and tried to block it all out.
It mostly worked, till bedtime. That's the worst time, because in the gap between lying down and falling asleep, you're unprotected. There's no distractions. And my normal technique for putting myself to sleep if it doesn't happen quickly on its own is to daydream about the future - and I can't do that now.
I couldn't eat much that first day. I ended up having two slices of cinnamon toast. The next day I had two slices of vegemite toast. Mum started getting me quick and easy breakfasts and - at my request - powerade, because I was worried I wasn't getting enough hydration. My IBS kicked in, and it's been overactive now for a whole month. But it meant I was losing too much water.
My mouth has felt dry pretty much the whole time since, too. I looked that up recently and discovered it's a trauma response - part of me is still in fight/flight/freeze, so my body isn't prioritising non-essential systems.
After a day or so, I was able to start using the audiobooks as distraction again. Between those, and solitaire, and bloody merge dragons, I could keep the worst of everything mostly at bay while I was still sick.
It got me at night a few times, though. And when I sobbed, I coughed, and eventually had to forcibly stop myself from crying so I wouldn't make myself sick. One night, mum came down because she heard me crying, and hugged me while I cried on her.
I still had a week of leave left after it happened, so I could disassociate in peace for a bit. But by the end of the week, I knew it wasn't enough, so I had to message my boss (who was also on leave, so I had to get her personal number from someone who was working) and tell her what had happened and that I'd be off another week. They let me take two days bereavement leave and two days compassionate leave, so the extra week only took up one more annual leave day.
The coroner called a few days in to let me know what was going to happen. Then again a few days later to let me know they'd declared it a natural death, due to Raq's weight and her FND.
It's bothered me, since then. They didn't do a full exam, they used medical history and a basic exam, and they blamed Raq's weight. Based, presumably, on a lot of other cases where weight was blamed for people's deaths, even though they hadn't looked deeper. I wish now that I'd been in a better state at the time, and had been able to ask them to do a proper exam. Partly because I wish I knew exactly what had happened, and partly because now Raq's death will be part of the statistics that say being overweight makes you more likely to die young *sighs*
Once that had been determined, they told me I could arrange a funeral, but that there was no rush. They'd take care of Raq until arrangements were made.
It took me a while to be ready for that. It wasn't till Raq's mother had reached out to ask if they could have some of Raq's ashes that I started doing more than briefly looking around. That gave me a goal - I wanted someone who could help me get part of Raq home to her mother.
The first place who called me admitted that they couldn't help with that. I appreciated that they went to the effort to call several times to make sure I knew. The place that's nearest to us didn't call or reach out for days.
I settled on a company that offered the cheapest cremation-only, without a ceremony. They're not a cheap place in general - their funerals are more expensive than a lot of the other companies - but they don't pad the cremation-only costs. And they've gone out of their way through this to save me from paying any unnecessary costs. They're even helping with how to send the ashes to America without actually including that in the bill - they charge by telling you their cost for each item, then adding 40% to the lot. By helping me with this stuff, but having me make any actual payments myself, they're sparing me from the 40%.
A representative came out and talked me through things. We filled out forms, and she said she'd make the arrangements, and afterwards, she'd bring the ashes here. That's apparently taken longer than expected, because she didn't end up collecting them till today. She'll be coming here one day next week (we haven't picked when yet) to bring me the ashes and the memorial jewellery I picked out. I wanted to be able to keep a bit of Raq with me all the time.
After my extra week off, I had to go back to work. My boss is letting me work from home while I adjust. She's been very sympathetic and supportive - again. She's always been helpful when things have been rough.
I was only back at work for a week, and I spent most of that week working on a couple of tasks that are mostly data entry or bulk data review, which was good. But then I had another week off.
I'd booked this week off last year, because it was the week mum was going on holidays with our extended family. It was going to be a relaxing week for Raq and I to have the house to ourselves, run the air conditioning as much as we wanted, and not have to worry about being noisy at night.
Instead, it was the first time I really, properly sobbed. Nearly three weeks after it happened. I sobbed and I wailed and I talked to myself and the universe, and then I'd have to stop and get it under control, because even without a cold, my sinuses hate me and made crying a problem.
I think I sobbed at least once or twice a day each day mum was gone. Her being here had apparently held me back even more than the cold had. Being alone meant I didn't have to worry about the impact my sorrow had on her.
She messaged me every day while she was gone. She didn't think I was going to hurt myself, but she's been worried about me in general ever since it happened. I've caught her standing in the hall, listening to make sure I was still breathing, more than once. I used to do that to her if she fell asleep on the lounge and was quiet. Raq did it a few times to me if I wasn't snoring much.
Raq had just said, a few days before they passed, that I wasn't allowed to die in my sleep. I'm not sure now if I'm glad or not that I didn't tell her "neither are you".
In that respect, there is a mercy here. We'd talked about it before, and Raq was always scared that something might happen to me. They wanted to go first - not this early - but before me, so they didn't have to deal with everything that came after. I'm incredibly thankful that, if one of us had to pass that day, it wasn't me. I'm struggling with everything, but Raq would be a thousand times worse, and couldn't really lean on my mother for support. AND probably would have had to figure out how to get themselves back to America and their family.
The other mercy is that we think they didn't wake. As I said, I'd heard them snore, and cough, and have drinks now and then. I didn't hear anything else. I didn't hear any sounds of distress or movement or difficulty breathing. I was playing FFXIV, but I didn't have the volume up, and I didn't have headphones on. I was keeping an ear open for Raq waking and possibly needing something.
They'd had a few incidents of what we thought was sleep paralysis in the past few weeks, so I was listening for the possibility of them needing to be woken properly. Knowing that was a risk made me feel slightly guilty for queuing for the second fight. I was worried they'd call out mid-fight and I'd have to abandon the people I was playing with. But it meant I was listening out.
Which makes me think it must have been quiet. Their eyes were closed and their face was relaxed when I found them.
I've come to believe that it wasn't sleep paralysis, that it might have been FND seizures.
Raq was diagnosed with FND several years ago now. They'd had a bad case of uvulitis - an infection of the uvula - that made it hard to keep food down. They'd done a course of antibiotics that didn't resolve it, and some steroids to try to reduce the inflammation, and then I'd gotten an urgent message one day at work, saying their legs weren't working properly. They couldn't properly support their weight.
I rushed home, and we ended up calling the health advice line, and speaking to a doctor who told us to call the ambulance, because he couldn't rule out something serious, and if we couldn't get ourselves to a doctor or the hospital, the ambulance would be necessary. So we called, and we waited, and waited, and waited. In those hours, we had to use the wheelchair we'd borrowed from Em to get Raq to the toilet and back, because they couldn't manage unaided.
It was a pretty awful night. The paramedics who came couldn't get Raq upstairs themselves - no room for a stretcher or anything like that - so they basically bullied them to the stairs, then up one at a time on their butt. Then basically the same process to get down the stairs out the front.
I'm always going to regret not getting Raq out of a house with so many stairs...
Once we got Raq outside that night, they told us they couldn't even get the stretcher up the drive, so maybe I could drive them to somewhere flat, and transfer them - at which point we realised I could just drive them myself.
We got to the hospital around midnight and I was there till about 11 the next night. We spent a lot of time waiting and a bit of time having tests done, and eventually they ended up in a bed in the emergency department, with the plan to take them up to neurology once a bed opened up there.
They were in the hospital for about three, four months. They spent their 40th birthday there, and Xmas, and NY. The first few weeks were hellish, but once they'd had x-rays and an MRI and a spinal tap, and all the really urgent stuff had been ruled out, they were diagnosed with FND. Functional Neurological Disorder.
In Raq's case it manifested as weakness and loss of sensation from a bit above the knees down, and from mid forearm down to their hands. It can also involve non-epileptic seizures, but during that time, Raq didn't have any.
They were moved to the rehabilitation ward and put into physical therapy, along with being given supplements to manage the vitamin deficiencies (caused by the difficulty in keeping food down) and a new SSRI. One they hadn't tried in the US, and which actually worked remarkably well.
They did pretty well with physio as well, while they were in the hospital. Having people come and get them and take them to the physio gym instead of having to make themselves do things helped a lot. We never did anything like that well once they moved to out-patient physio. But they were there long enough to get walking again, and to learn how to safely manage stairs, and then they got to come home.
Despite doing a lot better, they never fully recovered. Walking was still challenging, and they could only manage short trips, with their cane. We had a wheelchair for when we went out, and a walker that we planned to transition to eventually.
They'd been having issues that were stressing them out in the weeks before all this - it was affecting their sleep, which is what we thought caused what we assumed was sleep paralysis. But I've looked up more information since, and the way Raq was after each incident makes me think it could have been seizures.
Which then makes me think that might have been what happened. After the hospital, we saw an out-patient ear, nose and throat specialist to follow up about the uvulitis. They put a camera up Raq's nose and told them that they had very narrow sinuses and that was why it was so hard for them to breath through their nose. Raq felt very validated about that. They'd also started to show signs of catching the cold I had. If they then had a seizure that made breathing through their mouth impossible, it might have all been too much.
But we'll never know for sure. No one else was there when it happened, and the coroner didn't look into it.
Everything now is just, blank, or crying. For a while there, I could hold it all down as long as I put enough effort into distraction, but it's started creeping through anything and everything. It can crop up while I'm working, or driving, or even when I'm putting all my focus on distractions. I just feel it welling up and I'll start quietly weeping. I think part of that is because there's so much time I have to spend pushing it aside for practical reasons. It tries to get me when I try to sleep, and I have to keep refusing to think about it because I need sleep. But then when I wake up on a work day, I have to shower and dress and work and I can't think about it then, either. So I think it's building up and leaking out whenever it can.
I've looked into grief counselling, but organising something like that takes a lot of executive function, and I don’t have so much of that right now. I also looked into the EAP service work offers, but we apparently didn’t pay for the self-service online booking, so I’d have to either call (nope) or email to organise a booking, and I don’t know what or when or how…I’d wanted to log in and look at the online booking thing so I could see what they offered and what sort of times and people were available, but I’ll have to work up the nerve to email them and ask for that info instead.
I go back and forth on how useful I think it’s likely to be, but I think it would be good to talk to someone who can give me a yardstick for where I am now. Am I doing anything I really shouldn’t be, for one. And while I know everyone’s grief is unique, and it takes time, I’d like to have a sense of whether I’m within the range of normal, even if I’m at one end or the other of that range.
Most of the time, when I start crying, that’s all it is. I just cry, and cry, and all I’m doing is letting out the urge to cry, expressing the pain. I’ve railed against the unfairness of it all, I’ve struggled with disbelief, and the part of me that doesn’t/can’t accept that this could happen, I’ve found myself sobbing over all the things Raq will miss out on. But most of the time now, there’s no words, just crying and pain.
There’s a big empty space in me where my awareness of Raq’s presence used to be. And a hollow echo where their voice should be.
The future, which was nebulous but somewhat shaped by intention before, has turned into a black hole of uncertainty. Everything I planned was centred around Us. Raq and Cat. Cat and Raq. We were going to get our own place and a bigger bed and a comfy sofa and a balcony where Raq could see the sky. We were going to live a very ordinary life, uplifted by love and each other. And now all of that has gone. All the things that were going to be made better, or at least tolerable, by being together so much more (so many of the chores here involved being at opposite ends of the house), are now just more repeat work, the sort of endless task that depressed Raq intensely, and which doesn’t do me much good either.
I can’t even think about the future at the moment, because I can’t conceive of getting out of my current state. I don’t know how to reach a future, let alone create one I want to have.
I’ve had to reassure mum, I’m not going to hurt myself. I have times when I wish I could also fall asleep and not wake up, and I have times when I think, “an untreatable terminal condition with just enough time that I could quit my job and live on my savings while I go through all my possessions sounds really relaxing”, but I’ve never in my life gone beyond wishing for a reprieve from the pain. I’ve never considered taking action, for several reasons.
The main one is a twist on the kind of magical thinking that makes gamblers refuse to leave the casino - what if I left, and I just missed out on a big win?? What if tomorrow, everything was about to get better? What if something wonderful was coming and I missed out because I gave up? I don’t know what’s going to happen next, and it would be just my luck to miss out on something amazing because I let pain steal opportunity from me.
The rest is mostly that there are still things I’m capable of looking forward to - even if most of them are now freighted with sorrow because Raq will miss out on them - and a bit of fear of causing myself more pain. I’ve always found it hard to cause myself pain, even if I know that not going through it will lead to more pain overall. Hurting myself is one of those areas where I know there’s a higher than usual chance that if I avoid that pain, there’ll be more positive than negative afterwards.
I can look back over my life and see it’s been true. I stayed, I endured, and so many wonderful things have happened to me. We didn’t have long enough together, but I did have Raq, for nearly 15 years. I got to be with them, and I got to show them that they could really love someone, and be loved, and that it wouldn’t run out, and I got to show them that I would never, ever leave them.
But for now, I can’t look forward very far. I can only persist in the moment, and manage things a few days in advance at a time.
The most unfair thing (to me, at least - the most unfair thing in the entire situation is that Raq doesn’t get to experience anything else in the world, and that burns me every day), is that this is currently part of a pretty long series of struggles and challenges, and even now that the worst of all possible things has happened, the world still can’t give me a break. I was already deep in burnout, and desperately in need of some time off. We’d already been dealing with Raq’s health, and the heat, and mum pushing to get things organised so we could all move (which I wanted to do, but wasn’t coping with the pressure over), and I finally got some time off over Xmas, and before I was even on leave, I caught a cold. Then a few days into the break I rotated the mattress, and managed to injure my sciatic nerve. And then this happened, and everything fell apart.
And then the next time I got into my car, I discovered that the air conditioner had failed. And I took the car to the service centre today, and they said it could cost $3-4k! (They’re going to try to get Subaru to cover the cost - I think because one part failed and triggered the failure of the other part? Unsure - so it might be all covered, or they might just cover the parts, and if that happens it might only be $100-150, which is much more reasonable, but I won’t know how that goes till Monday at the earliest).
I couldn’t even get a couple of weeks after the worst loss I could ever conceive of before life had to throw more bullshit at me.
You could try to make a case for it being life trying to keep me active and present, and stop me from stagnating in my grief, but fuck that. There are good things that could provoke me into action and engagement, it doesn’t have to be bullshit.
That’s the most unfair thing, but it’s not the worst thing. The worst thing is that this isn’t something that has an end. This is something that I have to manage, to some degree or other, for the rest of my life. There’s no, “if I just get through this bit...”, there’s no “and now I’m done”, there’s just an absence, forever.
Mum told me tonight that, not long after dad died, someone she was talking to asked her if she’d marry again. It was soon enough after he died that she was a bit shocked by the suggestion, she was still in the midst of her grief. But she said, she has more sympathy now for that person, because she can understand it better now - that you just want the grieving person to be able to move on and find happiness again.
I can’t even see normal emotions from where I am. I don’t know what it would take to get to happiness. And I don’t know that it’s possible for me to find that kind of happiness again. There’s many reasons why Raq and I called each other our miracles.
*sighs* I could ramble all night, but it’s nearly midnight. I should wipe my eyes, blow my nose, and go brush my teeth. I doubt I’ll fall asleep quickly tonight, but at least I can be in bed and resting.
Raq passed away, on the evening of December 28th, 2025. They were tired, and I'd been sitting in the other room because my sciatic nerve had been causing issues, and the chair in there was the best place to sit. They lay down for a nap, and after a while, I got on the computer and started playing FFXIV.
I hadn't played with friends earlier, so I did my regular weekly things, then decided I'd have a go at the first two Arcadion fights. I made themed glams for them, cause I'm a dork. I took a bunch of screenshots cause I planned to show Raq after.
While I queued and played, I occasionally heard sounds from the bedroom. Raq snored a bit, and I could tell they weren't sleeping solidly, because I'd hear them take a drink now and then - I'd recently bought them a new water bottle, one that was metal and insulated, but with the same silicon bite valve they liked, and it rattled when they drank because I'd put lots of ice in.
I managed my retainers (they fetch you stuff) after the second fight, then decided I needed to get up and go to the loo. I peeked in as I past and figured Raq was asleep.
I go back and forth on that moment. I don't know if it would have made a difference if I'd gone in then or not. And since I can't know, I try not to think about it.
I went to the loo, and I was in there a little while. Then I went to talk to Raq, because it was getting late enough that I figured I should wake them and sort out dinner. And that's when my entire life began to fall apart.
They didn't wake, and their lips were blue, and I screamed for mum to come and help. I could tell from the tone of her reaction that she thought I had to be wrong when I told her I thought Raq was dead.
She ran down, saw for herself, and immediately called an ambulance. We did our best with CPR till they were close, when I ran upstairs to let them in and direct them downstairs.
They asked if we could move one of the cars - mine - so I ran out in my nightie with no shoes on and had to dodge around the ambulance to get out onto the street and park. I wonder now if they were trying to get me out of the room.
I ran back in, and then I just had to sit in the kitchen and wait, and hope, and fear.
They asked some questions - I don't remember most of them, except they asked about my ritalin, and I had to explain it was mine, and they asked a bit about Raq's health in general. And I sat there and felt myself go blank.
There was very little urgency in the sounds we could hear, and I heard someone reference "code 4". I looked that up, and I knew.
The main guy came up a few times to talk to us and ask questions. I don't remember all of it, but I remember him telling us they were trying to keep Raq's system functioning, but their body wasn't "kicking back" and taking over. And in the end, he came back and told me he was very sorry.
Because Raq hadn't been under the direct care of a doctor, and there was no reason to expect their death, the paramedics had to call the police. The lead guy said, if I wanted to say goodbye, they'd neatened things up, so I could go down and sit with Raq until the police arrived, at which point they'd make me leave again.
I did. I came down and I sat on the edge of the bed and I kissed their forehead and stroked their hair and didn't cry because I still had a damn cold, and if I'd started sobbing I would have been coughing and choking in moments.
Two cops on swing shift came and looked over the room, and asked us more questions. They had to call in detectives (a formality) and one of them had to go and get some forms they didn't have on hand. Mum talked to them about their jobs, and the strange way their shifts are rotated, and how long they work. I think this was when I really started dissociating.
The detectives came and left fairly quickly, muttering "sorry for your loss" as they shuffled out. The forensic people had to come and record the scene, even though everyone already agreed it wasn't suspicious.
The senior of the two original cops started talking about the coroner coming, and what they'd need to do to get Raq out. At one point they were talking about removing a window, and I could feel mum getting anxious about that. But in the end the police rescue team came, and they decided they could manage the stairs.
The cops, and the paramedics before them, told me I should be somewhere else when they moved the body. They said no one should have to see that. We could hear things, though. And they left damages here and there. I suspect they laid a ladder on the stairs and used it as a ramp. Someone at some point stepped on the folding bed table I had leaning against the foot of the bed, and shattered it.
Someone else, probably the paramedics, knocked things off the bed, and broke up the faux-lego advent calendar Raq had been working on. I got it for them for their birthday, and it made them tear up because it was just what they wanted.
I haven't gone through the room to find all the pieces yet. I don't know when I'll be ready for that.
I sat in mum's room while they worked, and they took a long time. It was hard, sitting there staring at nothing and hearing sounds.
Mum came and sat with me for some of it.
She's had a lot more exposure to death than I have, directly and indirectly. Her mother died when she was about 6, then her father when she was 10. She and her sisters were raised by their grandmother, who died when mum was in her 20s.
She married my dad, who died about 7.5 years into their marriage, leaving her with two kids under 5.
So she sat with me, and she watched as her daughter followed part of the same pattern.
The only person we told that night was my brother. I can't remember if he called or if mum called him. I didn't want to post about it online till we'd told Raq's mother what had happened, and we couldn't get through to her that night. I ended up messaging her the next day and finding out that we'd been calling the landline, which no one ever answers. So mum ended up calling her on her mobile and letting her know.
I couldn't have called. I couldn't even be in the room when she did it. She came back and told me Raq's mum had been worried something had happened to me, and that she sent her thanks to me for giving Raq so much of what they'd wanted for so many years.
People didn't all leave the house till very late that night. And then it took a bit of time for me to be able to sleep. I don't remember now what time it was, but it was hours and hours between us calling the ambulance and the house being quiet again.
The first day after, I was still fiercely shut down. After we'd told Raq's mum, I shared the news on bluesky, facebook, and discord. I think people's reactions made me tear up, but I was still coughing, so I couldn't really cry. I tried to distract myself with the audiobook I'd been listening to, and I couldn't that day. So I stared at nothing, or played solitaire on my phone, and tried to block it all out.
It mostly worked, till bedtime. That's the worst time, because in the gap between lying down and falling asleep, you're unprotected. There's no distractions. And my normal technique for putting myself to sleep if it doesn't happen quickly on its own is to daydream about the future - and I can't do that now.
I couldn't eat much that first day. I ended up having two slices of cinnamon toast. The next day I had two slices of vegemite toast. Mum started getting me quick and easy breakfasts and - at my request - powerade, because I was worried I wasn't getting enough hydration. My IBS kicked in, and it's been overactive now for a whole month. But it meant I was losing too much water.
My mouth has felt dry pretty much the whole time since, too. I looked that up recently and discovered it's a trauma response - part of me is still in fight/flight/freeze, so my body isn't prioritising non-essential systems.
After a day or so, I was able to start using the audiobooks as distraction again. Between those, and solitaire, and bloody merge dragons, I could keep the worst of everything mostly at bay while I was still sick.
It got me at night a few times, though. And when I sobbed, I coughed, and eventually had to forcibly stop myself from crying so I wouldn't make myself sick. One night, mum came down because she heard me crying, and hugged me while I cried on her.
I still had a week of leave left after it happened, so I could disassociate in peace for a bit. But by the end of the week, I knew it wasn't enough, so I had to message my boss (who was also on leave, so I had to get her personal number from someone who was working) and tell her what had happened and that I'd be off another week. They let me take two days bereavement leave and two days compassionate leave, so the extra week only took up one more annual leave day.
The coroner called a few days in to let me know what was going to happen. Then again a few days later to let me know they'd declared it a natural death, due to Raq's weight and her FND.
It's bothered me, since then. They didn't do a full exam, they used medical history and a basic exam, and they blamed Raq's weight. Based, presumably, on a lot of other cases where weight was blamed for people's deaths, even though they hadn't looked deeper. I wish now that I'd been in a better state at the time, and had been able to ask them to do a proper exam. Partly because I wish I knew exactly what had happened, and partly because now Raq's death will be part of the statistics that say being overweight makes you more likely to die young *sighs*
Once that had been determined, they told me I could arrange a funeral, but that there was no rush. They'd take care of Raq until arrangements were made.
It took me a while to be ready for that. It wasn't till Raq's mother had reached out to ask if they could have some of Raq's ashes that I started doing more than briefly looking around. That gave me a goal - I wanted someone who could help me get part of Raq home to her mother.
The first place who called me admitted that they couldn't help with that. I appreciated that they went to the effort to call several times to make sure I knew. The place that's nearest to us didn't call or reach out for days.
I settled on a company that offered the cheapest cremation-only, without a ceremony. They're not a cheap place in general - their funerals are more expensive than a lot of the other companies - but they don't pad the cremation-only costs. And they've gone out of their way through this to save me from paying any unnecessary costs. They're even helping with how to send the ashes to America without actually including that in the bill - they charge by telling you their cost for each item, then adding 40% to the lot. By helping me with this stuff, but having me make any actual payments myself, they're sparing me from the 40%.
A representative came out and talked me through things. We filled out forms, and she said she'd make the arrangements, and afterwards, she'd bring the ashes here. That's apparently taken longer than expected, because she didn't end up collecting them till today. She'll be coming here one day next week (we haven't picked when yet) to bring me the ashes and the memorial jewellery I picked out. I wanted to be able to keep a bit of Raq with me all the time.
After my extra week off, I had to go back to work. My boss is letting me work from home while I adjust. She's been very sympathetic and supportive - again. She's always been helpful when things have been rough.
I was only back at work for a week, and I spent most of that week working on a couple of tasks that are mostly data entry or bulk data review, which was good. But then I had another week off.
I'd booked this week off last year, because it was the week mum was going on holidays with our extended family. It was going to be a relaxing week for Raq and I to have the house to ourselves, run the air conditioning as much as we wanted, and not have to worry about being noisy at night.
Instead, it was the first time I really, properly sobbed. Nearly three weeks after it happened. I sobbed and I wailed and I talked to myself and the universe, and then I'd have to stop and get it under control, because even without a cold, my sinuses hate me and made crying a problem.
I think I sobbed at least once or twice a day each day mum was gone. Her being here had apparently held me back even more than the cold had. Being alone meant I didn't have to worry about the impact my sorrow had on her.
She messaged me every day while she was gone. She didn't think I was going to hurt myself, but she's been worried about me in general ever since it happened. I've caught her standing in the hall, listening to make sure I was still breathing, more than once. I used to do that to her if she fell asleep on the lounge and was quiet. Raq did it a few times to me if I wasn't snoring much.
Raq had just said, a few days before they passed, that I wasn't allowed to die in my sleep. I'm not sure now if I'm glad or not that I didn't tell her "neither are you".
In that respect, there is a mercy here. We'd talked about it before, and Raq was always scared that something might happen to me. They wanted to go first - not this early - but before me, so they didn't have to deal with everything that came after. I'm incredibly thankful that, if one of us had to pass that day, it wasn't me. I'm struggling with everything, but Raq would be a thousand times worse, and couldn't really lean on my mother for support. AND probably would have had to figure out how to get themselves back to America and their family.
The other mercy is that we think they didn't wake. As I said, I'd heard them snore, and cough, and have drinks now and then. I didn't hear anything else. I didn't hear any sounds of distress or movement or difficulty breathing. I was playing FFXIV, but I didn't have the volume up, and I didn't have headphones on. I was keeping an ear open for Raq waking and possibly needing something.
They'd had a few incidents of what we thought was sleep paralysis in the past few weeks, so I was listening for the possibility of them needing to be woken properly. Knowing that was a risk made me feel slightly guilty for queuing for the second fight. I was worried they'd call out mid-fight and I'd have to abandon the people I was playing with. But it meant I was listening out.
Which makes me think it must have been quiet. Their eyes were closed and their face was relaxed when I found them.
I've come to believe that it wasn't sleep paralysis, that it might have been FND seizures.
Raq was diagnosed with FND several years ago now. They'd had a bad case of uvulitis - an infection of the uvula - that made it hard to keep food down. They'd done a course of antibiotics that didn't resolve it, and some steroids to try to reduce the inflammation, and then I'd gotten an urgent message one day at work, saying their legs weren't working properly. They couldn't properly support their weight.
I rushed home, and we ended up calling the health advice line, and speaking to a doctor who told us to call the ambulance, because he couldn't rule out something serious, and if we couldn't get ourselves to a doctor or the hospital, the ambulance would be necessary. So we called, and we waited, and waited, and waited. In those hours, we had to use the wheelchair we'd borrowed from Em to get Raq to the toilet and back, because they couldn't manage unaided.
It was a pretty awful night. The paramedics who came couldn't get Raq upstairs themselves - no room for a stretcher or anything like that - so they basically bullied them to the stairs, then up one at a time on their butt. Then basically the same process to get down the stairs out the front.
I'm always going to regret not getting Raq out of a house with so many stairs...
Once we got Raq outside that night, they told us they couldn't even get the stretcher up the drive, so maybe I could drive them to somewhere flat, and transfer them - at which point we realised I could just drive them myself.
We got to the hospital around midnight and I was there till about 11 the next night. We spent a lot of time waiting and a bit of time having tests done, and eventually they ended up in a bed in the emergency department, with the plan to take them up to neurology once a bed opened up there.
They were in the hospital for about three, four months. They spent their 40th birthday there, and Xmas, and NY. The first few weeks were hellish, but once they'd had x-rays and an MRI and a spinal tap, and all the really urgent stuff had been ruled out, they were diagnosed with FND. Functional Neurological Disorder.
In Raq's case it manifested as weakness and loss of sensation from a bit above the knees down, and from mid forearm down to their hands. It can also involve non-epileptic seizures, but during that time, Raq didn't have any.
They were moved to the rehabilitation ward and put into physical therapy, along with being given supplements to manage the vitamin deficiencies (caused by the difficulty in keeping food down) and a new SSRI. One they hadn't tried in the US, and which actually worked remarkably well.
They did pretty well with physio as well, while they were in the hospital. Having people come and get them and take them to the physio gym instead of having to make themselves do things helped a lot. We never did anything like that well once they moved to out-patient physio. But they were there long enough to get walking again, and to learn how to safely manage stairs, and then they got to come home.
Despite doing a lot better, they never fully recovered. Walking was still challenging, and they could only manage short trips, with their cane. We had a wheelchair for when we went out, and a walker that we planned to transition to eventually.
They'd been having issues that were stressing them out in the weeks before all this - it was affecting their sleep, which is what we thought caused what we assumed was sleep paralysis. But I've looked up more information since, and the way Raq was after each incident makes me think it could have been seizures.
Which then makes me think that might have been what happened. After the hospital, we saw an out-patient ear, nose and throat specialist to follow up about the uvulitis. They put a camera up Raq's nose and told them that they had very narrow sinuses and that was why it was so hard for them to breath through their nose. Raq felt very validated about that. They'd also started to show signs of catching the cold I had. If they then had a seizure that made breathing through their mouth impossible, it might have all been too much.
But we'll never know for sure. No one else was there when it happened, and the coroner didn't look into it.
Everything now is just, blank, or crying. For a while there, I could hold it all down as long as I put enough effort into distraction, but it's started creeping through anything and everything. It can crop up while I'm working, or driving, or even when I'm putting all my focus on distractions. I just feel it welling up and I'll start quietly weeping. I think part of that is because there's so much time I have to spend pushing it aside for practical reasons. It tries to get me when I try to sleep, and I have to keep refusing to think about it because I need sleep. But then when I wake up on a work day, I have to shower and dress and work and I can't think about it then, either. So I think it's building up and leaking out whenever it can.
I've looked into grief counselling, but organising something like that takes a lot of executive function, and I don’t have so much of that right now. I also looked into the EAP service work offers, but we apparently didn’t pay for the self-service online booking, so I’d have to either call (nope) or email to organise a booking, and I don’t know what or when or how…I’d wanted to log in and look at the online booking thing so I could see what they offered and what sort of times and people were available, but I’ll have to work up the nerve to email them and ask for that info instead.
I go back and forth on how useful I think it’s likely to be, but I think it would be good to talk to someone who can give me a yardstick for where I am now. Am I doing anything I really shouldn’t be, for one. And while I know everyone’s grief is unique, and it takes time, I’d like to have a sense of whether I’m within the range of normal, even if I’m at one end or the other of that range.
Most of the time, when I start crying, that’s all it is. I just cry, and cry, and all I’m doing is letting out the urge to cry, expressing the pain. I’ve railed against the unfairness of it all, I’ve struggled with disbelief, and the part of me that doesn’t/can’t accept that this could happen, I’ve found myself sobbing over all the things Raq will miss out on. But most of the time now, there’s no words, just crying and pain.
There’s a big empty space in me where my awareness of Raq’s presence used to be. And a hollow echo where their voice should be.
The future, which was nebulous but somewhat shaped by intention before, has turned into a black hole of uncertainty. Everything I planned was centred around Us. Raq and Cat. Cat and Raq. We were going to get our own place and a bigger bed and a comfy sofa and a balcony where Raq could see the sky. We were going to live a very ordinary life, uplifted by love and each other. And now all of that has gone. All the things that were going to be made better, or at least tolerable, by being together so much more (so many of the chores here involved being at opposite ends of the house), are now just more repeat work, the sort of endless task that depressed Raq intensely, and which doesn’t do me much good either.
I can’t even think about the future at the moment, because I can’t conceive of getting out of my current state. I don’t know how to reach a future, let alone create one I want to have.
I’ve had to reassure mum, I’m not going to hurt myself. I have times when I wish I could also fall asleep and not wake up, and I have times when I think, “an untreatable terminal condition with just enough time that I could quit my job and live on my savings while I go through all my possessions sounds really relaxing”, but I’ve never in my life gone beyond wishing for a reprieve from the pain. I’ve never considered taking action, for several reasons.
The main one is a twist on the kind of magical thinking that makes gamblers refuse to leave the casino - what if I left, and I just missed out on a big win?? What if tomorrow, everything was about to get better? What if something wonderful was coming and I missed out because I gave up? I don’t know what’s going to happen next, and it would be just my luck to miss out on something amazing because I let pain steal opportunity from me.
The rest is mostly that there are still things I’m capable of looking forward to - even if most of them are now freighted with sorrow because Raq will miss out on them - and a bit of fear of causing myself more pain. I’ve always found it hard to cause myself pain, even if I know that not going through it will lead to more pain overall. Hurting myself is one of those areas where I know there’s a higher than usual chance that if I avoid that pain, there’ll be more positive than negative afterwards.
I can look back over my life and see it’s been true. I stayed, I endured, and so many wonderful things have happened to me. We didn’t have long enough together, but I did have Raq, for nearly 15 years. I got to be with them, and I got to show them that they could really love someone, and be loved, and that it wouldn’t run out, and I got to show them that I would never, ever leave them.
But for now, I can’t look forward very far. I can only persist in the moment, and manage things a few days in advance at a time.
The most unfair thing (to me, at least - the most unfair thing in the entire situation is that Raq doesn’t get to experience anything else in the world, and that burns me every day), is that this is currently part of a pretty long series of struggles and challenges, and even now that the worst of all possible things has happened, the world still can’t give me a break. I was already deep in burnout, and desperately in need of some time off. We’d already been dealing with Raq’s health, and the heat, and mum pushing to get things organised so we could all move (which I wanted to do, but wasn’t coping with the pressure over), and I finally got some time off over Xmas, and before I was even on leave, I caught a cold. Then a few days into the break I rotated the mattress, and managed to injure my sciatic nerve. And then this happened, and everything fell apart.
And then the next time I got into my car, I discovered that the air conditioner had failed. And I took the car to the service centre today, and they said it could cost $3-4k! (They’re going to try to get Subaru to cover the cost - I think because one part failed and triggered the failure of the other part? Unsure - so it might be all covered, or they might just cover the parts, and if that happens it might only be $100-150, which is much more reasonable, but I won’t know how that goes till Monday at the earliest).
I couldn’t even get a couple of weeks after the worst loss I could ever conceive of before life had to throw more bullshit at me.
You could try to make a case for it being life trying to keep me active and present, and stop me from stagnating in my grief, but fuck that. There are good things that could provoke me into action and engagement, it doesn’t have to be bullshit.
That’s the most unfair thing, but it’s not the worst thing. The worst thing is that this isn’t something that has an end. This is something that I have to manage, to some degree or other, for the rest of my life. There’s no, “if I just get through this bit...”, there’s no “and now I’m done”, there’s just an absence, forever.
Mum told me tonight that, not long after dad died, someone she was talking to asked her if she’d marry again. It was soon enough after he died that she was a bit shocked by the suggestion, she was still in the midst of her grief. But she said, she has more sympathy now for that person, because she can understand it better now - that you just want the grieving person to be able to move on and find happiness again.
I can’t even see normal emotions from where I am. I don’t know what it would take to get to happiness. And I don’t know that it’s possible for me to find that kind of happiness again. There’s many reasons why Raq and I called each other our miracles.
*sighs* I could ramble all night, but it’s nearly midnight. I should wipe my eyes, blow my nose, and go brush my teeth. I doubt I’ll fall asleep quickly tonight, but at least I can be in bed and resting.
