Cancer and Covid.

Coronavirus aka Covid-19 has made me despair even further of humanity and my countrymen. I get really angry when people refer to having to wear a mask, or having to not go to the pub, or on holiday as oppression, as impossible to tolerate. I have HUGE sympathy for the people running the pubs, restaurants, leisure facilities and small businesses that don’t know how to survive with more and more restrictions, but these people are not the ones losing their minds over loss of perceived freedom, fear of losing ones livelihoods and not being able to feed one’s children is very different from not being able to access more leisure.

I have little sympathy for those people who are extremely happy to put everyone else at risk in order to maintain their own level of freedom. Because only their freedom matters. No one else matters in the slightest. And the thing that scares me, is that, that, is precisely what most people *want* out of their life.

Every time, I see on SM parents of school friends of my children announcing how they are going to break the rules, or how they are going to engage in the maximum social group meet-ups they can, I have to reconsider whether school is safe enough for my children. Don’t get me wrong, socialising is HUGELY important for mental health. Human contact is vitally important. I have never, and most likely will never report anyone for breaking lockdown rules. I worry about the wellbeing of people who think covering their mouth but not their nose is adequate use of a face mask, but, I don’t need to be stabbed or spat on, so…

But, my children (and, I am sure, many, many more like them) know, that *every* time they go to school, they risk bringing home illness that is likely to kill their father. They know this. But, they also need to speak to people who are not me, and they need to learn, and they need to be able to plan for a future that is more than this. Living with the risk, however, is something they have consciously done since BEFORE Covid 19 existed, just that then, there was a WAY bigger chance that they wouldn’t kill him. The additional stress they have to face every day is something it matters to not forget.

There are knock ons from this. The effort we have to go to to get basic supplies without going into shops. The complete airlock disinfection of everything that leaves the house. The multiple isolations. Everything has a mental health implication. And the long term impact is incalculable.

Which brings me to a further point. I am sick and tired of being considered “over anxious” just because I can see all the implications of all the outcomes. I myself, have only been out to school and to medical appointments since March. I have spoken to literally no one socially. I have to absorb all of all of it, every day. Keep going, make sure there are treats, and fun things and favourite foods, and that all festivals and usual events are celebrated as close to normally as possible.

I get to drop everything I am doing to be there if someone needs a day off school. And I have *so* much respect for all the teachers, but, I am not hesitating to keep my children at home right now, for anything from a sniffle to the need for a duvet day, because, right now, whatever they need to feel safer and better is what is best for them. They can catch up learning at any time (although I do make them do any homework, if they ARE in school, they have to fully participate in being there.

I have to be there in the middle of the night for nightmares. I have to cover for, cater for and generally make OK all the isolations, be there if someone else’s work intervenes. be there for everything all the time every day.

And I have been *trying* to study. It is now very unlikely that this course will lead to a 3 year degree course involving me spending the week days in Cardiff. That’s never going to be safe for us. But, in and of itself it might give me a chance to go back to work.

So, somewhere in all of that, with a child who can’t sleep alone, and a need to be available 24/7 and *never* speak of any of it, I have to try and get that done too.

I have to exist purely as a thing that other people need. I have to not express any feelings as they cannot possibly be mine, and must be anxiety speaking, or a deliberate ploy to make someone else feel bad. There is no thought for what works for me, or for US, because I am not ill, and I don’t do anything of any financial value (except the financial value of an entire job, or the ability to be in hospital, or to make decisions on where to be or what to do because SOMEONE ELSE will do kids and home, and understanding illness and explaining illness, and caring for everything, making sure food meets all the guidelines and is healthy, which is entirely worthless, apparently)

I did 10 hours of specialist nurse RCN level training last year, so I could answer questions form the children, and so I could understand and not have to bother someone already going through the whole process. Last year, I could ask real humans if I wasn’t sure, and it was allowed, and it was real and not anxiety driven. NOW it’s MORE real, but, I matter less in it. I am the problem in it, but if I went away, the rest of it would fall to pieces.

Basically, everything that happens to me, from hospital visits for potential surgery, to hair falling out, to exhaustion and lack of social interaction, while these are serious enough for other people to write articles and need help for me they are nothing, because I don’t have cancer, and I don’t bring in any money. And I worry, because what if that ends up being how the kids feel, those things loom so large for them, that they can’t see their own intrinsic value. That’s why we have treat days, and they get to go to school, even though I have to work out how to do these things. Even though I then have to face the battle of “why do they need more treats?” “What is the point of more fun?”

And the background exhaustion from last year is not dealt with, or lessened with emergency hospitalisations, and crisis travelling and all the implications. I was holding on til June to get a rest, to do things I chose at my pace, that were not cook, clean, worry, take care of others. But, now, there will NEVER be a rest, because nothing will ever be safe enough again. And there is a level of deterioration which makes leaving them as a group not possible.

But, I’m well, and I am not old, so, I don’t count.

Social Media vs Life

So the 13 year old needs a Fb account to set up his birthday Occulus. So, Since I am nosey as all hell, and need to now what he gets up to, I had to reactivate my own account. And, you know, I missed the people, I am liking seeing their lives a bit.

But for me, it is always at a distance. I am lucky, because I FULLY understand the curation of social media. It is as far removed from reality as being in a play or a film is. It’s acting. Even if the content is honest, real, the presentation is an act. And I assume it is for everyone. Because no one knows what the reality is for anyone.

So, at least I know to make a line. To have FB life (including some stupid things, some human things, but, with a line) and a just for me life.

This doesn’t make me sad anymore, because it’s just how social media works, AND it actually stops people asking anything I don’t want to offer.

I confess to jealousy, I would like friends, people to talk to, to have fun memories and in jokes and such like.

But, I also understand why I don’t. I used to. I used to when I curated my real life in the same way I know to do for social media. To be fair to me, I absolutely do that now too. But, I am more damaged so, I don’t try. I mean, I am kind and I have a stock list of anecdotes, but, I won’t connect with anyone. It’s not something my life can support. I also don’t want anymore anger and anymore hurt. I don’t want the hypocrisy. I also don’t need the guilt.

The kind of friends who choose the day I spend at an actual funeral to inform me that I am always too sad for them to be able to cope with me are probably not people with whom to share my reality. Sad is a very broad term anyway.

In fact, it’s such a broad term, that I don’t share anything that could be seen as negative, except in the most oblique, this is tough, but it will all be fine soon way.

So, all I have is silence, and aloneness.

I mean, I also have to understand that I am allowed to worry about everyone, I am allowed to cook, listen to people choke and throw up what I cook, try to amend future menus and be yelled at for this being unreasonable. I am NOT allowed to criticise even dangerous behaviour. I am NOT allowed to insist that medical care for someone else is necessary. I hear this is all normal when you are the thing that absorbs someone else’s health based anxiety.

I am also allowed to worry silently and without any care from any quarter for my own health, while I go to hospital, and worry how I can possibly get surgery. I need to arrange someone for the kids to contact if anything goes wrong while I am away. Imagine if he can’t eat, or is too tired, or bleeds seriously? Imagine if I don’t wake up from anaesthetic? I need to rewrite my will, but also kindly provide phone numbers and advice to kids on who to contact in case of serious problem. I will get yelled at for thinking of this and for voicing it, because he refuses to acknowledge that he is ill, and that this actually has an impact on life.

I have to be terrified, in private, that if I need what should be a routine surgery, not only, may I not wake up from the anaesthetic, not only may I have to keep doing whatever they need instantly I get home, because no matter what has ever happened to me, I ALWAYS have had to, when I have been ill he has got to work, when I have had medically traumatic experience, he has literally laughed at the nurses that I will be fine, when I had minor surgery, or ambulance trips, or anything, it has been alone, and there has been absolutely zero suggestion that I might need help doing ANYTHING, ever. When he was isolating and I hurt my back, I had to get on with everything. So, I need to a) be prepared that if I survive there is zero recuperation time and b) If I don’t, I need to know the kids can contact someone who can help if he is too ill, or doesn’t know what to do.

This has made me see how entirely alone I am and have always been. I get yelled at for concern I have even though the concern is never addressed in any meaningful way. And anything about myself is simply never mentioned, even though it has ramifications for everyone.

Every dangerous thing that gets done, every thing that gets forgotten, every problem not solved, every thing I get yelled at for pointing out, is a thing I can’t rely on if I die or need to be in hospital in an extended way.

But I am not allowed to point this out or explain it, or even point out the problem, because I just get yelled at more, because, HIS anxiety is allowed, and nothing I feel has any value.

It’s like the ring. I love the ring, but, without meaning behind it, it does not stand for what it should. I put it back in the box, because, nothing was asked, and today has proved to me that I am still completely on my own, no matter what happens. Why wear a very obvious symbol of something that is not?

Every thing I do is framed as insensitive to HIM, but nothing is ever sensitive to me. WE can choose things as long as they are on HIS list. HE must eat what and how he likes. HE must be patiently explained to if he can’t hear. HE must rest. HE must work. HE must be allowed to do and be what he needs.

And there is no BOTH people can have that, there is only sulking that if I complain then he should not have it.

So, all that is left is for me to try my best to be alone and still successfully protect the children from all the worry and the problems and everything whilst knowing I might BE one of the biggest problems if I don’t wake up from my anaesthetic. Or if I just let the dangerous things go on if I have to be away from even a few days.

And everything overlaid with Covid anxiety. What if I catch that in hosptal? I can’t come home and infect anyone here, it would be too dangerous. I can’t ask anyone to come in and help, because they might bring it in.

And this stuff all comes under the banner of things that would make other people sad if I said them out loud. So I don’t. Just alone trying to solve all these things without even giving him any clue that something needs solving.

The Liking Gap

I read a thing today that says there is a “liking gap” which s the space between how much people really like you and how much you think they like you. Almost invariably, you think people like you a lot less than they do.

Which is kind of interesting, it says, apparently, that everyone is afraid of rejection, so people don’t tend to initiate contact. And that people are, generally, more generous with their liking than one might expect.

Which is, as I say, interesting. What it is not, however, is entirely useful.

I don’t like myself very much. Of course, many people say this is a mental health issue. That I am too critical, and that I should be kinder. BUT. I do not want pity that I dislike myself. I *know* myself and I am genuinely not very likeable. I mean, I try as hard as the next person to be kind and to do useful and thoughtful things, but, those things are small, and weighed against the selfish, unkind things, I have every reason to understand why people do not like me.

I don’t have friends. I have kind people, but, there are not people to chat with or have fun memories. Apparently it is very important at the moment to have these kinds of relationships. I do not. This almost inevitably worsens my mental health. But, everyone’s mental health is suffering right now. So, since I have a life time of mostly fairly crappy mental health, I already know how to cope, so, why clog up already wildly under resourced services?

I don’t know how to talk to people. I can have all kinds of excuses, like the people here all mostly grew up with each other, and it’s hard to beak into that world. Or, there are things about me that don’t fit in this community, which is also true. But, mostly, I don’t know what people talk about anymore. I know people I can ask questions about the kids, and that matters. I don’t have any thing else. Which is mostly fine, since, as well as not very nice, I am also a generally boring person too.

Sometimes, I feel lonely and the kind of relationships I hoped for are things I wish I had, but, I also know that I don’t posses the skills or bring anything to the table. I think it is positive to be realistic. But it is also possible to miss something you know is not possible.

So, the liking gap is a thing that I don’t know if I believe in. But then, I also wonder if the kind of realism I engage in is less shared among the rest of the population than I imagine.

Autumn

There has been a lot of nothing. A lot of statistics, and a lot of work and learning and pretending everything is normal, and hoping to make even this bizarreness into normal, so that small people are not going to wake up 10 years from now and be stuck hating what they have to live with.

Me, I was a pretty crappy person before there was a pandemic, so, I am pretty sure I should not be surprised that I am not suddenly super human. I mean, I barely qualify as human at this point. But, this is not new.

There is new. The new is the constant sense of being about to fall of a cliff. The constant sense of trying to stave off the falling. Ensuring food, and treats, and seeing a way to at least keep us all alive for the next chunk of time. I have given up even trying to understand what the next block of time actually is. As long as I get the kids to school and keep them warm, clean and fed, I barely know what day it is, much less whether there will ever be something that looks different, something that marks the end point, the ability to step away from the cliff edge.

TO be so constantly aware of the risk of falling off a cliff is exhausting, but, only in the sense of understanding that I would feel tired if feeling tired was a thing it is possible to feel.

I understand that everyone is in this. So, there is no one to speak to, because, who wants to listen to me whine on when the world is suffocating them too? I understand that. I was a tediously uninteresting and horrifically bad friend before this, I certainly don’t expect to be treated as less so now.

There are people who term this negativity, but, I don’t. I just understand what is, I don’t want to elicit a feeling because of it. I am not looking for tips on how to be a better human, or reassurance that I already am one. I am just aware.

I watched a documentary about a sports person with an eating disorder. I am not a sports person. But, I did feel seen. It is something to have that feeling. I also need to learn that life exists irrespective of the witness. I must not expect to share, on a real understanding level, anything.

I researched this, and I almost believe that the hope to do so is normal. But, I live in a world where it is not possible to even feel unheard, because that would belittle the struggle of the person who cannot hear. Where pronouncements do not require responses. And where even food and flavour hold no connection to the past, and memory.

This is not a usual way to function. But, I am assured that it is my mind that is a fault, which, frankly, is a likely outcome. Plus, I already accept that my mind is wobbly, so, it is always OK to pile the dysfunctionality on that. I know I am not normal. I *might* have got some leeway with unusual behaviour when I was 15 – 25. But then, it never occurred to me that my way of behaving was the ONLY acceptable thing, and that everyone else must abide by that and only that. Now, I don’t get one grain of MH care, and no one gives a a toss. I have not been designated as human enough to need the things that people on the news need.

I read a lot about mental health, and asking for help and for sure, if you need some and you can ask, go for it. Unfortunately, I am the kind of person who will never deserve further care or assistance. It is what it is. Again, not worth having a feeling about.

I don’t know how to engage with people. Why would I? I know how to steer kids through the world of parental cancer. I know how to organise food without leaving home so I don’t infect more important people. I know how to be creative so things can get done with the things we have. I know how to never speak publicly about MH. I know how to apologise for my child finding this whole thing bloody difficult too. Magically, I also know how to make sourdough so alcoholic as to be dangerous. And I know how to spend longer changing and decontaminating than I actually spend outside, twice a day 5 days a week, with the additional bonus fun of having to strip next to a glass front door, and having to be claustrophobic just because I am outside, which seems wrong to me. I mean, these are a lot of things to know. So not knowing how to be a human, or how to interact, or how to speak out loud in a useful way, it’s no big deal.

I *have* to finish this year of study. But, how to focus? I already know the long goal is already smashed to bits. But, that’s what dreams are actually for, no one is really strong until they understand how to deal with something immovable.

Except that absorbing is not dealing with, and something is going to break. 99% that will be me. I am on the verge of celebrating a milestone which is really just about me having to accept that I don’t exist, whether that is in order to know truth, or to be allowed the idea of responding to a statement, or having any kind of valid opinion that leads to action. I am not sure I understand what the intended outcome there should be. Or what the celebration is.

None of it matters anyway, since there is no way off the stupid roundabout.

Self Care, Learning and Prejudice.

I am really struggling with all of everything at the moment. I am not good enough at anything to make any of the things going on better. I have the least of everyone to cope with, so, I am also angry with myself for not being better. For not shoving it all down and being better. I do not have cancer. I am not a 6 year old struggling without normality, with only the stress of lockdown, and the stress of cancer family status. I am not a teenager dealing with teenager-y ness in the middle of all the other stress. I am fine, I am well, and I *must* be able to make everything better for all the other people.

So, I started this on line course, with this professor from Yale university. About psychology and happiness.

And it made me more angry.

Why is it that Americans have this thing about being kind to oneself? Be compassionate to yourself?

OK, stop right there. 1) I am pretty sure all people who have training in psychology and Self care know that self compassion is part of the recovery process from any kind of MH trauma or issue. it’s nothing to do with being American. 2) I personally associate this kind of psychological care with Americans because that is where I have experienced it. In my experience, British psychological care is far more along the lines of shut up, behave appropriately and either accept the status quo or get lost and go it alone.

So, I have to acknowledge that a) my prejudice around nationality is flawed here, and is in my head. and b) of course not all Americans in any sense of anything buy into this. It’s absolutely bizarre to have such a connection. Even if I know it’s wrong.

More than this, actually, I know, I *know* self compassion is important, and *is* a part of any recovery from trauma. But, I *cannot* apply this to me. I *also* know I do not deserve any compassion. I know without doubt that I CAN do better, and I MUST do better, and that the only way to do that is to ignore the weakness that wants rest and care and treats and love and for it all to stop. There is no room for that, and weak people need that. Strong people can suck it up and do more and do better. Plus, you know, if I plan a break or a treat, or anything that is for me, it doesn’t work out, and I will always only see how selfish I was to even hope for a rest or fun, or anything for just me.

And today, I kind of realised that this might be a fault wth my thinking. I mean, after all, it cannot be every textbook, every course, every professor who believes in Self compassion and care knows less than I do. Then I learnt that this is exactly and example of the fallacy that states that knowing something is enough, or nearly enough. It is not. I can know all I like about it mattering to self care. I can check whether other people are rested enough, or happy enough, or need more treats or more hugs or some sort of additional care, but I truly, and genuinely cannot know that I need, deserve or will ever get any care I cannot justify as not detrimental to anything I do for anyone else.

I realised I want someone else to take over that for me. To love me enough to understand when I need something and what it is that I need. Like a film. But I *also* know that that is not real. But I want it to be real. but I have no one who even could try and do a LITTLE bit of that. I dream of that. I get angry when my reality is *so* far removed from that.

Of course I make it worse by having my little friends in the telly, who ALWAYS have a friend or a relationship to KNOW them, and what they need, and how things feel for them.

I want to feel loved and known and supported and understood. But I can’t do that for myself. So, basically, it’s ridiculous.

But all I am really is angry that I am not completely self sufficient. So, I feel like not only am I insufficient, but also I am failing to learn and failing to be better.

AND I am angry reading the articles about people finding lockdown without all of this other stuff impossibly difficult. And I get angry realising that MH care for me is going to be even less accessible. And it already was not accessible so… You would think, as a person with a known Severe and Enduring condition that care would be useful considering there are people relying on me. Which is scary.

No wonder I am both exhausted and unable to sleep.

I mean, I am getting enough sleep to not be ill, and I can cope. I can *always* cope.

It would be nice to have a future, and a space, and a rest, and fun, and the love and care and understanding I dream of, but, none of those things are *necessary*.

Except, if self compassion *is* a necessary part of surviving maybe it is necessary.

But then, I don’t have it anyway. So, I guess it’s a moot point.

People Lie. And that’s Just the Good Ones.

Things are complicated. Things are always complicated. People are always going through something. Unless you are paying a therapist, it is valuable to be aware that any other human is going through something. So, no where is it ever safe to answer the question “How are you REALLY?”

How are you REALLY is a hashtag now. I am too old for hashtags really. Except I am alive so, some things infiltrate my bewildered and self absorbed brain.

But being a human involves a degree of self absorption. I don’t know whether I am more or less than normal. I suspect more, but, I also know sometimes less. But right now, I am not really real inside my own being. So maybe that is more, and maybe that is outside of the equation. I have no idea.

Most people are nice, and so most people are inclined to say nice things and not to deliberately hurt someone else. But that means that people lie. They don’t mean to, and they mostly don’t think they are lying, because they say what they need to say to make everything more comfortable and less painful. Everyone naturally wants to make things hurt less. And that’s OK. That’s normal.

But it changes how the long term feels. People who promise they will always be there. People who say they understand. All of these things are things that, at times, we need to hear. They are, however, never true.

The complicated thing is learning how to apply the knowledge that people lie, and the knowledge that, however scarred by trauma, and whatever I have lived through, everyone else is doing the best they can too. And, right now, even while everyone is living, collectively through something unprecedented, we are all doing it differently.

For myself, I am used to analysing my feelings and my thoughts and what I do, it’s why I can’t make reliable decisions about my self absorption. But, then, I *have* to be absorbed in that to a significant degree. It’s how people with my diagnosis and my history are able to function in normal, low stress times. Stands to reason it would be a significant part of being able to at least fake wellness in the current climate.

It’s like, I am not sure I should put these entries in this family blog. But, it doesn’t actually matter whether they go here, or in my own private blog, or whatever, because, I have to make my mind function if I am going to make my family function.

The thing is though, everyone has to either find the person who does not lie, or, who lies the least, and understands at least some, and is there (in a real sense) for some of the time, OR they have to learn to be alone.

I am watching a tv show that incidentally deals with Trauma. And I recognise it. I don’t have enough words for this. Like a living growing poison through every cell of my being.

Which makes my anxiety about acquiring another one somewhat bewildering. But then, I suppose no one knew how this would make them feel, and no one chooses how to feel. Not without working through the feelings that come and how to organise them.

I also seem to be trapped in some bizarre alone but optimistic roundabout. Some seconds of imagining not alone, sandwiched by the actual reality of how I live and what I do. Including being told off for imagining that the not alone must not include *any* of the things that make *me* feel not alone. Which is how I know I am doing life all wrong at the best of times, so, how do I manage to do this scary stuff right?

That feels like a thing I can’t know, but, the kids have a right not to have me gineau pig them.

My trauma is not going to be relevant in the aftermath of this, with so many people doing so much more.

But it already stops me being a whole person. And it’s certainly not going to get any better. Being pulled apart by thoughts every day is exhausting. But being exhausted does not actually lead to being able to sleep, because sleeping means you have to start again the next day from zero. Also sleeping means even LESS time to stretch and iron out my brain. All the other hours and minutes are used piling more pain INTO my mind. Trying to make sire all of this is OK for the kids. TRYING to be patient with an adult who cannot make this less alone. Who deserves care and love, but for whatever reason cannot engage. of course that reason could be that I am not possible to engage with, in which case the concern for my children is greater.

I only lose things. So, it is probably easier for me to see the world in which I never leave here, this actual building, again. I am glad that the kids still see leaving and life in their future. But I have no idea how to actually give them that. I can’t imagine taking them anywhere.

I mean, I couldn’t imagine being here forever a few months ago, so, you never can tell, but, I hope they extend school closures so that I don’t have to decide. I don’t want them to miss out on life, but I don’t want them to go out and be unsafe.

 

Compulsion

Sometimes the need to write is a compulsion. I don’t know what I can say, but, I am compelled to write.

Nothing I say is going to make a difference. There is home, and there is food, and there is the daily struggle to educate and entertain. I *know* it is bad for my children’s social skills. I cannot give them more social skills than what is available here, and that is pretty slim pickings.

Looking forward seems impossible. I can’t see a thing we can’t do now that it will be fun to do any time I can envision in the future.

I KNOW people get past things like this and make a new way. Humanity has done it before. But, on a more personal level I don’t have the generational span to see that this time. I am deeply aware that life has just hit stop.

For MY life that’s just stop. I have memories. I had hopes and dreams, but I can function without them. I don’t know what it will do to children to not be able to do and achieve and experience though.

I try to explain this, how the worry for them is that without school they cannot compete but then maybe there will be nothing to compete for, but then how will the world function without qualified people?

But I can’t send them to school. It is not possible for me.

I don’t know how to make life look like life. I don’t know how to make the things that might be useful outside matter, except I know they do, but what words helps that for them?

This is what I mean when I say I cannot give them what they need from homeschool. Because I don’t see a goal. I can’t give them GCSEs and A levels. I mean, maybe they have the on line, and maybe Jamie can get there. But with only me, Merryn will not. And that will be my fault. And there is nothing I can do about it.

Truth is, there is nothing I can do about anything, except clean clothes, cook dinner, and give hugs. Mow the grass so there is a place to play. But I don’t know.

This is basically it.

And there is nothing to do to change it. There is no depression or catastrophising, there is just no more.

We literally only see the world on tv or in books. It is very bizarre to think of the small things we miss or don’t know. I don’t know.

So, there is nothing to say. But I am compelled to say something. I wonder if it is because I am working extra hard on controlling my compulsion to eat, and the compulsion comes out somewhere. I don’t know.

I just think the children deserve better. But what is that given the actual world?

Hopes and Dreams.

You know something? I think it is not having to stay at home for the rest of my life that will be the end of me. I don’t actually mind being here.

But there are a lot of other things, and I think most of them are magnified by this. Having my whole world be ONLY this, and these things. It makes all of them more concentrated.

I *want* to do the best I can. I *want* to be the person everyone can rely on, in this, when they need someone to show them that it is OK. That’s important, and my children deserve that.

How does a person overcome their person-ness? because that’s what I need to do. In order to be that ALL the time, without stopping, ever, I need to give up being a human being.

There is a point where it is useful to rail and rage about what one has lost. What one never had, but there is a time when it is necessary to just accept that you are a thing that cannot and will never have those things.

There is no help. I just need to be able to do it.

It took me a lot of years to be able to put down other things I have lost or been forced to relinquish. And I have only ever been able to when I could see a path forwards. When I could see a better thing instead. And now, there is not that. Now, by magic, I have to just put down every single thing I value except being FOR my children, just stop even pretending I might ONE day exist. And know that nothing more will exist in my life.

I mean, there are properly old people who are allowed to not be able to feel peace with that even as they fight for the right to one more breath to fit one more achievement in.

But I have to be OK with it now, and Ok enough with it to never be impatient or upset or anything.

And I don’t think I can do that.

Maybe that’s because I am selfish. But I want answers. Why?

I know things don’t work out. I KNOW it doesn’t matter if you work hard, or if you plan, or of you ask questions, and trust and if you give of yourself. None of those things matter.  But, what I want to know is what is it about me?

It is funny, given how people think I am so pessimistic, how I believe, every single time. It’s the ultimate optimism. Every day I wake up and believe today will be the day.

Today something will show me that my optimism is not misplaced. Today, the universe will be there, and agree I paid enough.

One day I will wake up and have spent 20 years of my life with a person who DOES the things they promised. Who KNOWs what things mean to me, and what things cost me. Who KNOWs what I hope and what I dream and what I need. Who actually HEARS the conversations I had, apparently on my own, when I was trying to decide how to use my life. When I was deciding whether something as precious as my one and only life was safe and my hopes and dreams were heard and valued.

Every day I believe they will wake up and be the person who knew their child, and what they liked, and not be so frightening and angry JUST because I give them the respect of believing they can do that for their children.

So, all I have is the fear and absorbing the anger. NONE of what I thought I was sharing and entrusting them with ever broke the surface.

But why am I not worth a relationship which is SHARING. I could put in any amount of work all day every day if there was a space of together. if there was unspoken understanding of how much the day cost and what it felt like and how it works to be and do everything, if that was a shared emotional experience.

Why do I not deserve shared emotional experience?

Why is it that I have to be happy to have every bit of my being crushed under the weight of 3 lots of ASD and the very specific things other people need? Why are there NO spaces for anything I need?

I KNOW I have to give up working, at least at anything I choose or am qualified in. I KNOW I have to give up learning. I KNOW I have to give up travelling. I KNOW I have to give up choosing how my environment looks. I KNOW I have to give up on emotionally sharing my life and working WITH someone equally informed and engaged and invested.

I know it is my job to be informed, and invested and emotionally available and thoughtful and respectful of everyone’s needs and hopes and feelings and neurodiversity and blood and grief and pickiness and fear and education and ….. forever.

But, why is it that other people get to hold out for the dream? The dream of someone giving a damn who I am and what makes my life worthwhile?

I keep thinking that one day I will wake up and experience him releasing that ACTUAL cost of his choices ten years ago. Wanting to show how much of what I SAID when I was making the choice, when I was explaining what I was giving up and what I needed and what it meant actually went in, wanting to do things so I can FEEL that understanding.

I don’t want another wedding. A wedding made me feel weird anyway. I don’t think I will ever want to leave the country again (which is another intrinsic part of myself stolen).

People spend lifetimes searching for where they fit in the universe. I am lucky, I know I don’t. But, I have been alive long enough, and seen enough movies to know what I am missing now.

Luckily, I am a thing who exists to make sure other people get through things. Nothing matters enough for me to need genuine understanding and time and shared life. So, I can just keep being there for anyone who needs it.

No one looks in my eyes and knows anything.

No one is ever going to find the piece of jewellery that makes me feel like if I touch it it connects me with someone, with safety and not alone. No one is ever going to be interested in sharing MY life. now, that is mostly because my life is empty. I thought I had shared it, but all I did was give it away.

My whole life is about other people’s medical issues be they visible or invisible, and yes, in MY version of being in a family, there is no chore in adapting of such things. But ALSO in my version of family, mine would matter too.

Why give up HUGE swathes of my life to a medical condition that *everyone* said was hard to live with? That people took chances from me because of? That meant I had to give up most things I loved? Why bother? I would be better of right now if I never knew? if I never put myself through hospital and meds and fighting and fighting and trying.  There is NO benefit. I can’t have the meds that would make the emotional pain bearable. I don’t get to access any kind of emotional sharing. I don’t get any kind of space. There is nothing there. And I do my best. I try to find even small things to build even a grain of actual distinct humanity of my own. Every single one is crushed.

Now it is not even acceptable to want to eat food that is what I like without planning three weeks in advance and making it suitable for everyone else. Apparently, it is way more important that we have an ASD friendly uber menu than it is that I learn to make new things, and decide what I want to eat. Because what matters the very most is that every possible grain of choice that I may imagine I have is crushed.

It might be conceivable that I may consider this to be a depressive mood. However, it is not. A severe depression has to be a) out of proportion to objective events c) the cause of the avoidance of activities designed to elevate mood. But mostly, I don’t feel depressed. These things are all objectively observable.

I have dreams of things that would feel shared and valuable that work in shielding forever, but, shielding is not about what I need. Nothing is ever about what I need. maybe that is what psychiatrists need to tell people. NOT you need to take care and be sure to do x or y. More, you are irrelevant. Irrelevant people cannot get ill. I mean, if they could, I’d be very sick. But I am not. I know I am not. I know it is important to check, and I know it is dangerous that I only have myself to check my thinking with, so I am being extra careful.

I thought about telling other people. But, you never know what their opinions on such things are. And, seriously, no one with any kind of actual contractual investment in my health outcomes has ever bothered about this, so, why bother someone with none?

Humans are meant to be social. I don’t actually get humanity.

Some Illness Matters.

Today, I understand MUCH more fully the nature of discrimination and dismissal.

I am pretty sure that more and more medical progress will be made. it is likely that it will be measurable in months, couple of years tops, to vaccine and treatments for covid 19. Because it kills people society deems to matter. They make advances all the time in cancer care and treatment.

There will be article after article about how cancer patients are suffering during this pandemic. People will be shocked and those people will matter. That illness matters. It is not a blame worthy, weak person illness.

If you have any non blame worthy illness, or to be honest, MOST blame worthy ones, you are allowed to need things and feel things and STOP.

Oh, there might be some cursory token articles about how many more people will have mental health issues after this. But, there will be no money to help them. So there will be no more therapy slots. There will be no additional research for good treatments. There will be waiting lists of years and years. And no one will REALLY care. There must be millions of people with severe and enduring mental illness who cannot access medical care right now. And who cares?

So, it is no surprise, when I ASK why it is only ever me that has to get up at night, only ever me that drops things for someone else, that I get told that it is because they have a condition and they take caring for that seriously.

YES take it seriously, but, 1/5 people reportedly die from the condition I have. I HAD open access to see the doctor because BEFORE this, what I do is stressful enough to be a concern for relapse trigger. NOW what I do is exponentially more stressful. There is even less time off. There is no access to medical care. There is no adequate sleep. There is no self care. People with *my* condition are supposed to get all of those things. But, NO ONE has to take my condition seriously. 20% mortality rate sounds quite significant right? But, it doesn’t come with a label that people consider deserving, or serious.  In fact the mortality rates are similar. His is 17%. But his has the advantage of being not a mental health diagnosis.

His is scary, and worth helping, and people understand that he might be scared, and need rest, and need to do things that have value to HIM, and self care, and meds. Mine is scary, but mine is worth turning me away from unconditional university place offers, mine is worth losing career choices, job pathways. Mine is funny, and made up and not serious.

What I also don’t understand is why it doesn’t come naturally to someone meant to be equally invested in these small people to get up, to be with, to help. HOW is it possible to put oneself before that? EVERY time? I don’t ever do it because someone tells me to, or because I need reminding to take a turn.  I do it because they have more value than I do. I do it because my life is about making their lives work. Because I love them. However tired or whatever else. How is that not what someone else equally invested would feel?

I don’t know why I am still learning this. I KNOW mental health doesn’t matter. I just thought that the ONLY person I am allowed to have who knows I even have a diagnosis might have a bit more tact that “*I* am taking my condition seriously.” But then, I should not be surprised. For a person who professes non-competitiveness, no one is more convinced that there can NEVER be a mutually positive outcome. His more is only worth something if someone else gets less.

But, make no mistake, there WILL be a mental health crisis, not even just nationally, after this, but, it is going to be already well underway, and it is STILL going to be mostly ignored.

My own mental health is of absolutely no consequence. But then, most other people’s is too.