It’s been a while since I wrote about my grief. I haven’t touched the subject since just before my mum’s anniversary. There’s been many times I’ve wanted to, but few times I’ve been in a place to do it. Writing about my feelings comes easy to me, but the thought of having to sandwich them around stale updates just didn’t feel right. Leaving them out didn’t feel right either. And so here I am, 17 months in. Time has changed my grief and my guilt, and I don’t want to hold it all in anymore. Grab a seat and sit down because there’s a lot to unpack. 

Blame & Responsibility

In the lead up to my mum’s anniversary (November 6th), we were chasing the wheelchair service she’d emailed expressing suicidal thoughts and spoken to before she took her own life. From our initial contact in July, we had spent a lot of time chasing them. It was so clear to me that somewhere the safeguarding procedures that they had weren’t followed, and that only became clear from what had been said in their initial response back in July. I think once they realised we’d cottoned onto that, they panicked. It wasn’t just that their safeguarding policy wasn’t followed, it wasn’t adequate either. They could have followed it to the letter and it still wouldn’t have been enough, but the fact they didn’t just added insult to injury. And that’s before you get to the fact we were seemingly ignored and fobbed off for months. Frustrating doesn’t even cut it. 

The day before my mum’s anniversary we finally got the response we were waiting for – acknowledgment that their safeguarding policy wasn’t followed to the letter and that even if it had been it would have still been inadequate. My last effort to chase them had pointed out that disabled people, which make up their entire client base, were at a higher risk of suicide, yet there was no mention of suicide-related safeguarding in their policy. They told us what changes were going to be made to improve safeguarding generally and with respect to suicide. It wasn’t perfect and it didn’t fix everything, but nothing would. Despite that it felt like some closure to have this before my mum’s anniversary after all the months of chasing them for it – though I think it would have been better received if we hadn’t had to. Some people around me suggested my family take legal action, but I knew that wouldn’t bring my mum back. Trying to work with them to avoid the same thing happening to anyone else felt much more important. Legal action felt like a threat to that and I would rather they spent their time improving the safeguarding policy and standards than trying to defend them. The damage was already done. 

For a long time I felt angry at the service manager who had phoned my mum in response to her email (expressing suicidal ideation) and then decided from that phone call not to raise a safeguarding alert – a decision that should have been logged and made with more competent guidance than it was. To some extent, I understand why he didn’t raise an alert, but I think the fact that my mum killed herself only a few hours afterwards at most shows it was the wrong decision. My mum can be very persuasive. She knows all the right things to say – after all she was a doctor. I cannot entirely blame the service manager for believing her, but I do blame the service for letting her safeguarding hinge on something so subjective and easy to fake – that kind of attitude towards safeguarding feels reckless. I don’t know if my mum really was calm or just masking during that call. But I do know that that service manager knows they made the wrong call, and I know that if they are even the slightest bit human that will follow them for the rest of their life. 

“Sometimes the idea of forgiving someone feels impossible, but then you realise that the villain in your story is just a person who made a big mistake” – Jimmy, Shrinking

It is natural I think to want to find someone to blame, but I think it is also defensive. Every time you point a finger, three point back at you. That’s not to say that the person or organisation you’re pointing at has no responsibility, and it’s not to say that the pointer has 3x as much. But I do think even the best of us have some share in the collective responsibility when someone close to us takes their own life. That’s not to say everyone does, as I did, things that may have contributed directly to their loved one’s decision or that everyone misses signs or failed to offer support when it was needed most, but I think in many cases we as a society and as a participator in society play some part – and I don’t think it is always a part we can play much differently or that if we did it would make much difference to the outcome. Sometimes (okay maybe a lot of the time) I think wanting to find someone to blame is used to absolve some of our own guilt. I think there’s also a sense of if you find what went wrong and whose mistakes got us to this point then everything will be okay, but the reality is they are already dead and no amount of even the most evidence-backed blame finding is going to bring them back.  

“Why don’t you figure out what it is that you’re so mad about” – Paul, Shrinking

I think it is important to hold people/organisations responsible as a means of justice or to prevent future harm and protect the loved ones of others, but there is a big difference between that and pointing fingers to avoid self-reflection or blaming someone for the sadistic satisfaction of seeing them suffer too. There is a big part of me that would love to ruin that service manager’s career, but there is a better part of me that knows he isn’t the person I’m really angry at. I sometimes wonder if I’d think differently if I’d acted differently. Would I blame him if I didn’t blame myself? He missed an opportunity to save my mum, but I know that, despite how it may seem on the surface, he wasn’t the only one. So did I. So did her GP. And besides that, he isn’t the reason my mum made her decision. Maybe on some level he was the face of it, especially with the context of the hassle she was having trying to get a wheelchair that would enable her independence and the fact he was the last person to speak to her, but I think it would be an insulting oversimplification to blame him. 

He could have done more and he should have done more, but anything he did at that point would have been the equivalent of offering a bullet proof vest or maybe getting temporary control of the gun. And sure, that may have worked at that time. It may have saved her then, kept her here for now, but it probably would have made her more secretive and withdrawn when she found herself in that headspace again. The circumstances that drove her decision would not have changed. Real prevention lies in stopping someone from wanting – or rather feeling their only option is – to pull the trigger. 

Looking At The Bigger Picture – A Need for Holistic Approaches

Given the state of the NHS and the likely lack of support she would have received had she been interrupted, paired with past attempts and past experiences that tell me mum would not have engaged in anything that wasn’t enforced – which would have been hard if they couldn’t accommodate her physical health and medicinal needs on a mental health ward – she probably would have ended up there again. The circumstances that drove her decision would not have changed. At best she might have learnt some coping skills, but my mum did not lack coping skills – how else do you think she managed to get through the life she lived with 10+ years suffering from chronic neuropathic pain. I think suicide often feels and gets talked about like a mental health issue, but so often it stems from a societal one. Sometimes it is a combination of those things. Sometimes it stems from a far wider range of factors. You could even say the same for some mental health issues. These are multifactorial issues that need multifactorial solutions. A depressed person might need medication and therapy and social prescribing and societal change. Another might just need somewhere to live or some money to be able to fucking eat. I think the societal side of suicide plays a much bigger part than it’s given credit for. Not everyone who kills themself is mentally ill, but everyone is looking for an escape. Some are escaping pain, some are escaping debt, some escape bullying or abuse, and sure some are escaping their minds. 

I feel a lot of guilt over my role in my mum’s reaching of her final decision. I blame myself a lot, but I am trying to remind myself that to do that minimises the impact of much bigger forces. To put my own guilt before her last words feels like an insult. Like I’m talking over her one last time. It doesn’t mean that there is no place for my guilt, but to place it – myself – so centrally is an obscuring injustice to the bigger picture. 

Though my copy of Durkheim’s On Suicide remains largely untouched, it feels relevant to quote:

“As for the incidents of private life that appear to be the immediate motive for the suicide and which are presumed to be its determining conditions, they are in reality only incidental causes. If the individual gives way to the slightest adversity it is because the state of society has made him easy prey for suicide.”

It feels very important to me to sit with my guilt and hold myself responsible for my relationship with my mum, but I think it is just as and potentially even more important to understand – as best I can – from a wider perspective.

Disability & Despair

My mum was in pain, but my mum had lived in pain for many years. One thing that I think made the idea of existing any longer so much worse was thoughts of the future and having to live independently (after my parents separated). This country and the society within it do not enable disabled people to survive at a decent standard most of the time, let alone thrive. My mum was having trouble just obtaining the means to be independently mobile, let alone actually utilising those means on our wheelchair unfriendly streets. I think abled people have this idea that we are an accessible country because we have lifts and ramps and a few drop curbs, but it is the bare minimum. You only have to watch one video of a wheelchair user stuck on a train because no one has met them with a ramp to see how shallow accessibility really is. 

Then there’s financial inaccessibility. My mum sustained her original injury while working for the NHS, became a wheelchair user after the NHS botched a surgery making her unable to work, but was not be entitled to any universal credit due to my dad working and them living together. My mum was lucky in that she had her pension, but not everyone has this, nor was it adequate (I’m sure by now you must have heard that being disabled costs more). I remember going with her to an assessment (before PIP was introduced) and them, despite the medical evidence showing my mum was fresh out of spinal surgery that went wrong and the strong medications she was on, they were still asking her about walking and trying to get her to do mental maths. When she first applied for PIP, she had to appeal the decision. When she needed a new wheelchair to enable her independence because her original one was old and broken, she was having to fight for it. She could have got the chair she needed without her wheelchair budget, but the point was she shouldn’t have to. She wanted to fight it on principal for people who didn’t have that choice, and I admire her for that – though I will admit there are times I wondered if it was worth the extra stress it was causing her, in hindsight I can see just how important it is.

Do I have the right to independent mobility or will some paper pusher decide my fate because of some stupid rule? – My mum

There is the inaccessibility caused by dynamic disabilities forced into rigid accommodations. The idea that because my mum could do X once a week and be really wiped out after then she wouldn’t need Y to make doing X easier. I’ve seen this with self-propelling and power-assisted wheelchairs, where even when someone’s ability to self-propel is limited they are classed as being able to do it and denied an suitable mobility aid (i.e. power-assisted wheelchair).

There is the societal attitude and ignorance around disability. People avoiding looking at her, infantilising her, pushing her wheelchair without consent, taking advantage of her, not prioritising accessibility, not understanding disability let alone dynamic disabilities.

And then there’s all the extra paperwork and admin it takes to exist independently as a disabled person like she wouldn’t have anything better to do with her periods of mental clarity afforded by abstaining from medication. And this is just scraping the surface (and not even touching on the general dread of having to start life again after a separation).

Becoming disabled in itself was scary as shit, but the idea of having to go out into the world we live in alone must have been terrifying. My mum didn’t have the strongest support network outside of the family because she had not kept up a lot of her social relationships (e.g., with colleagues) because it was depressing. I’m not sure she would have even allowed herself to get outside help from a carer. While I think my mum still had some internalised ableism and something like rebellious refusal about her disability, she didn’t shy away from advocating for herself with services or finding ways to make things accessible to her. But I think the ableism and non-acceptance outside of her, out there in the world, played a big part in her choices.

Anyone can become disabled at any time, yet there is an utter lack of accessibility, compassion, protection and value afforded to disabled lives. Not everyone is ignorant or uncaring, but there is little allyship from the general public (or the government). Everyone screams inclusivity, but disabled people so often seem last on the list. Accessibility is nothing but an afterthought in many spaces.

I have longed to be able to talk to my mum about the recent cuts to disability benefits, yearned to bitch about the government with her, but I have also been strangely grateful that she is not here to see any of it. When my mum became unable to work, I think she became somewhat unable to see her worth, and I am glad she didn’t have to have that rhetoric reinforced by an ignorant government in their mission to vilify and condemn disabled people.

You ever get the feeling the rug is pulled out from under your barely functional legs? – My mum

At the same time, I am still grateful for her experience and my experience of her experience, the simultaneous understanding and rage it gave me and the foundations it laid for understanding my own disabilities. I feel validated by the way she never made my disability feel any lesser because it wasn’t physical (unlike our government). And I feel empowered by the stubborn advocacy she drilled into me (and the anger I know she’d share with me). Without any of these I don’t think I’d have the knowledge to see her suicide like I do or the strength to keep fighting. And more notably to fight even when I am fortunate enough not to have to because not everyone has that choice and there is power in community (and because it’s the right thing to do and the best use of my privilege, which I could lose at any moment).

Don’t get me wrong though, there is a fucked up kind of guilt that comes with being grateful your dead mum isn’t here, even when it comes from sparing her suffering. I had the same feeling being glad she wasn’t in pain anymore and that she wouldn’t have to experience the added ailments of old age like worse arthritis, cancer, dementia or even just more instability.  Though truthfully I can’t imagine my mum as she was letting that happen without a protest. I cannot imagine her going on any terms but hers. 

Recently I had the thought that if I could speak to her I wouldn’t even want to convince her to come back. It sucks that she’s gone, but I know she is free from all the bullshit of this world and in that sense she’s in a better place. It would feel wrong to try and convince someone who took such a drastic action to escape their circumstances to return when the circumstances haven’t changed. I wouldn’t want to put her back there just to appease my grief and guilt. My pain is immense, yet still it is nothing compared to hers. My future feels tainted, but I recon hers felt doomed. That’s not to say I wouldn’t save her in the moment if I could have, I am just saying if I could bring her back I couldn’t do it unless I knew that was what she truly wanted. 

Torturous Guilt

The only way to escape the torture cycle of hell is to believe you no longer deserve it.

One of the weirder things that has helped me subdue the more intense feelings of guilt was actually some lines I wrote down while rewatching Lucifer where Lucifer explains how going to hell works.

“I take no part in who goes to hell … You send yourselves, driven down by your own guilt, forcing yourselves to relive your sins over and over. And the best part? The doors aren’t locked. You could leave any time. It says something that no one ever does, doesn’t it?”

“This (hell) is a torture of your own making fuelled by guilt … You can’t (get out). Not until you no longer believe you deserve it”

It seemed so applicable to my own torturous guilt. It’s not that now I don’t think I deserve it, but I can see that I have created my own hell, my own torture cycle, and only I can free myself from it. I can see how, when put in the context of the bigger picture, I don’t deserve it as much as I once thought. I don’t feel absolved, but I knowing torturing myself and keeping myself trapped doesn’t help anyone. Using my guilt to be a better person and to try and change that bigger picture though? That might.

Distant & Dissociated

Since the anniversary of my mum’s death she has felt more distant and I have felt (and been) more dissociated. There are moments where I feel so connected to her, but there are others where I couldn’t feel further away from her life or mine. The cuts left me feeling like a burden but also burdened by grief, and strangely I felt closer to her then than I have in a long time. I didn’t ask for the feeling of distance, yet I still feel guilty about it. Apparently it’s common as time goes on, but it still feels wrong. It feels so wrong that it’s not unusual to wish you were back in the thick of it. That soul destroying pain in the early days is almost comforting when compared to the acquired numbness of time. It’s not that I don’t feel, I think it’s more that as time passes and you are required to get on with life you have to stop yourself feeling a little. And then it’s not always easy to turn back on again – even when you want to. Other times life just gets too busy for you to have feelings. As more time passes you get further from those feelings and have less and less time where you can feel them when you need to, and that makes the distance feel even further.

“I can feel her slipping away.” – Alice, Shrinking

I ended 2024 and started 2025 in Asia, in Singapore – a land where she once lived – after having spent 10 days in Thailand – a land (and cuisine) she loved. The juxtaposition of holiday highs and grief lows was hard to handle. I felt guilty about going away from Christmas, something my mum always wanted us to do. I could hear her in my head all like “Oh now you want to go away for Christmas” but the appeal of escaping Christmas wouldn’t exist if she still did. Thailand was slow, relaxing, but it left me in my head. Our short stop in Singapore was a little more fast-paced and the activities we did, ones she’d done, provided more structured grief prompts. I think it is there where memories started being more positive – probably largely due to the presence of my older brother that she’d lived with. It felt healing to do things she’d done and eat food she ate, possibly more so because I was learning new things about her and seeing the contexts of photos of her I’d seen. I did a lot of reflecting on that holiday and not just about my grief. I watched Shrinking on the flight home and boy was that needed (and an excellent show).

In the new year when we got back, I started to make some changes. I tried to live a little and take care of myself– something grief and autistic burnout have made really hard. I started putting out YouTube videos again, I turned 30, I started learning to drive, I started exercising more and eating better (and taking my multivitamins). I did too much a once and got a bit too close to another burnout, but for a while I was excited about life again. One of my videos took off a little and I got the fire in my belly to do more. For a couple of weeks I was so busy I barely had time to be sad. Being busy made it hard to focus on the distance. It wasn’t intentional avoidance, but I think it was just as destructive. I felt guilty for having a life and being excited about things, but I think that guilt was amplified by not making time to grieve. It felt like leaving her behind.

“Grief’s a craft little fucker. It sneaks up on you!” – Paul, Shrinking

One night in February it all just came out and I broke down. I ached for my mum. It felt like she was so far from the present moment, and like there were fences between us. I wanted to write then, but I needed to be up early so I stopped myself thinking I’d get too sucked in and I’ve been regretting it ever since. I have slowed down a lot in the last few weeks both out of necessity and a need for more time with myself. I don’t do well with a packed schedule and I was so busy making things with my brain I feel like I stopped making things with my heart. My brain chaos was so loud that at first I just thought I was overwhelmed by the things I was doing, it was only when I slowed down that I realised I was overwhelmed by the things I wasn’t doing too. 

One of those things was just giving myself time to feel. I was getting annoyed at myself for not being able to just go back and write what I wanted to write in February without realising I hadn’t even let myself access those feelings. I don’t think my grief and guilt have to be everything, but I don’t think I should just move forward in life without making room for them. I am better off planning to have them eternally alongside me and making time to attend to them before they start screaming. 

“Nobody gets through this life unscathed. You’re faced with a choice. Are you going to let your grief drown you, or are you going to face it come out the other side?” – Paul, Shrinking

I think the worst part was I’d let so much build up and I am a sucker for chronology but then you’re working on a backlog. I did the same thing right after she died by not journaling for ages and then the thought of it was too much. The solution is to do things as I go as I can, to give myself permission for those moments that might turn to hours with the knowledge that if I don’t, the machine (brain) gets clogged and it takes much longer to get it working again. By not doing this, I only added to my guilt. Putting it off just made her feel more distant. And it felt rude, like she was a chore or something. My mum is not dishes for me to be avoiding her like this.

I’ve since realised while writing this post that not everything has to be totally chronological (lying voice). I tried to start this post chronologically, but I think that’s where I got stuck. Not everything linked in a perfect order – it would make no sense to talk about the email and blame/responsibility and then fire straight into my visit to Asia and then dip back for disability talk at the end since they’re more recent thoughts – but I started and ended at the start and the end. The key thing that let me get it all out eventually was just starting. Starting is the hardest part. Healing isn’t about doing the dishes when the sink is full, it’s about dealing with shit as it comes because the real trouble starts when you let it pile up. But I let it pile up until it was too much to carry. And then I had the audacity to complain that I was dropping plates.

For the last few weeks it’s felt like I’ve been dragging this dead weight around. Mother’s Day came rolling round and I came up with the idea to interview my Dad about my mum and gift it to my brothers. We may not have been able to give my mum anything, but my Dad could give us her (in a way). I learnt so much about my mum that I don’t think anyone, even my dad, would have necessarily thought to tell us if they weren’t asked. It was heavy, but it was made heavier by everything else going on, by being exhausted, by having all my thoughts kennelled in my head. I thought this would be the day I’d finally set them free and relieve myself, but I was emotionally constipated. I knew they were all inside me, more so now than ever, but the only thing I could express was discomfort. I couldn’t just force everything out on command. There was too much. I focused on spending the day with my family and sharing the interview. I felt guilty for not journaling at all that day, not giving her a documented moment, but by the time I gave myself permission to try everything that had been jumping to get out had died down and I was too far away from myself.

But this week at suicide squad (not actually called that) everything seemed to align with the thoughts I’d been having. The multifactorialness of everything. The need for more holistic approaches. The social aspects. The reflection on my grief journey. I couldn’t get all the words out then, but I think I have now.

It is the act of revelation that’s healing – Paul, Shrinking