Autism Training. But not as we know it.

Today, I managed myself out of my house, onto the bus, and all the way to the big town and round the underpass maze. I managed to get to the right building at something that actually did pass for on time, in order to spend a day trying to learn some new strategies for being a parent to an autistic teen.

I was very anxious about this. I didn’t want training to tell me to train the autistic traits out of my child. I did not want to turn him into something “other”.

In fact, it was actually beyond even what I had dared to hope. I have new ideas for ways to communicate, new ideas for ways to challenge, new ideas for ways to plan and teach and share and be.

Which is very positive. It starts from a basic premise of acceptance. Showing your child that they are accepted for who they are. Then adding in better ways of supporting them given their additional needs and difference. Difference from my own being, and operating etc.

I, of course, irritated myself massively by talking too much, asking too much, saying too much. I can, of course, justify it. I don’t get to talk about these things otherwise. I need to be able to speak about the things that happen, and the worries, and I need to check that x is a good way of dealing with y. That kind of thing. But I am embarrassed, and upset that I talk too much and don’t say things that help.

I learnt a lot. And that is the main thing.

But, for me, it was the first time ever I have been in a group with people doing the same thing, bringing up a child with the same issues. Afterwards, after I had bought mince pies, and crisps, I had a hugely familiar and overwhelming feeling. That post-therapy feeling. The wobbly, tearful, nowhere to rehouse all the things you have just let out of your mind, feeling. The loss and fearfulness of having to step back into your life without the help and additional input.

I also think that the course leader might be usefully employed for one day anyway, in helping the autistic people in the house understand me better. So, running the course in reverse. Give them the same insight. Maybe that is a piece that is missing form the journey. Maybe that is a thing that could help a lot of people able to take the information in? Not to be taught to behave as if they were neurotypical, but to have the same kind of journey around strengths and weaknesses, but, of a neurotypical way of thinking, and of being. Because, even if it is the majority position, perhaps if they could understand it in the non threatening, non judgemental, fact and logic based way, it might mean it was easier to not get into the same disagreements, or misunderstandings.

It is not a problem for me to change the way I ask certain things, to provide the information for things in a different way, to try to understand sensory issues, to try to provide safe and useful sensory seeking experiences, as well as trying to know when not to speak, or ask things. I am very willing to do this.

But I think it would help us if they could understand why or how I don’t default in the same way that they do. Not to change or to negate my need to do things differently, but to perhaps just see that my starting point is not theirs, and if my outcome is therefore harder to understand, maybe that makes sense?

if we all understood each other’s starting point for experiencing the world, then maybe the friction would be less?

I don’t know, because the other thing the course highlighted to me in a way I have never seen before, is the enormity of the task I am engaged in. It’s like trying to teach a person even though you do not understand their language, or any of their points of reference, without having had any lessons to improve that for yourself.

Maybe the key is in educating both halves of the equation?

I still feel alone though. Maybe that is just mine to own.

 

 

When the World is Overwhelming.

I have 8 unfinished blog drafts, because, sometimes it is impossible to know what to write about. Not because there is nothing, but because there is everything.

Do you remember the olden days when I could just turn up to events and talk to people about having a successful life as well as bipolar disorder, and how it was more challenging than not having bipolar disorder, but possible? I remember those days. I remember talking to newly diagnosed teens about striving to be themselves and work towards what they wanted. I remember taking my baby son to day centres to talk about being a family, and having a family life, and a job and being bipolar, and patients feeling like this was beyond their reach, but finding me hopeful.

I look back at those days and laugh at myself. What the hell was hard about that? I mean apart form the medication side effects, and the learning to cope without medication, and the stigma, and the attitude of psychiatrists and CPNs towards a working person having other things to fit into their life than mental health appointments.

Today, I am choosing between writing about mental health, and helping people to see that not all even horrifically low mood and incapability are clinical. One is not automatically depressed due to bereavement, it would be a perfectly normal reaction to exhibit some or most of the symptoms, but it is not automatically illness. External events can trigger illness, but not every time. If you are feeling x because y, maybe it is y that needs to change and not you. Yes psychiatrists are useless at bothering to care about life events and their role in your current feeling, and it would be better if they were better at this, but, at least in the UK, psychiatrists do not conduct therapy. The trouble is that, in the UK, the mental health care is so underfunded and poorly joined together, that the psychiatrist is often no longer working with a team of other people. There is no CPN feeding in because they can’t see the service user often enough to build up a relationship, and people are not stupid, and don’t spill their life to a stranger who is really only there to check on compliance.  There is no CAMHS team of nurses and OTs to feed back. So, the psychiatrist that you see only every 3 – 6 months has nothing to go on but the ten minutes you get now. And if you are very ill, you can’t even possibly begin to express anything.

I WAS going to write about that, and how current events are affecting my own mental health, but then, I already have a diagnosis, and I can’t get anywhere near a mental health care professional, so what’s the point of that?

When the crushing realisation that my own country (which I have already grown up and realised is not better and has always been questionable at *very* best compared to any other country) is choosing to destroy itself and the people in it, rather than have the ability to say, ‘ no, we were wrong, this is going to be horrible, lets not do this.” I mean, people are already dying due directly to the actions of this government and previous governments. People are already starving, and freezing, and actually dying. SO, we are going to make this WORSE. We are going to make food and medicine harder to get. We are going to make jobs harder to find. We are going to punish children and families by making their lives unstable, their families unsure if they will even be allowed to live in their homes. No outside agency has made us do this, there is no war. But it feels like there is.

Internationally things are not much better, so looking at that does not help, international politics and of course climate change and environmental concerns.

And how can the not feed into mental health care needs? And yet, there is no more and no better mental health care. I mean, all health care is going to be compromised. it’s terrifying, and we could say stop but we don’t.

So, I thought I would go smaller, and write about the ongoing struggle of learning how to help and support my autistic child, while he struggles with bullying, and responsibilities and budgets and general growing up issues. Of course, there is no health care help for this, because autism is not a medical need. So, I sign up for the Parenting an Autistic Teen course. But now I am worrying about that. Because it is run by NT people trying to teach me to train my autistic child to be NT. This is not what I want. But maybe I can find some parents who understand the dilemmas. I am not here (or there)  to say that raising an autistic child is horrible, or grief laden, it’s not. But I would like guidance as the mechanisms for communication seem different, and I am not sure I understand how to help.

But writing about that is unfair, as his journey is not my journey. But, I have to be part of it, and I have a responsibility to help him be him, but over time.

So, I thought I would write about how it feels to support the children’s father with the impending death of his mother. Sharing photos of children who don’t know her, trying to forget the things they have all said about me, and to me. But it is unkind and childish to be angry and have any feeling other than to be supportive, so it is not sensible to write about that.

So I thought about writing about helping the children to learn how to help their Dad, who lives with cancer, stay well, by being vaccinated (one of the children no longer qualifies for flu vaccines EXCEPT due to their father) by learning about germs, and immunity and keeping things clean. But then there is more than one other child even in the classes my children are in at school, living with much more imminent danger from cancer. So, that seems difficult to write about too.

So, I keep all of it half written and wonder why I don’t feel better. Which is like a huge circle. Not feeling good is not always clinically significant. Maybe I feel like my own illness is getting on top of me again. But, more likely is the fact that people are squishy and imperfect and maybe my version of squishy and imperfect is just entirely justified in feeling totally overwhelmed. Even as my anxiety causes me to hoard food and medicine, because I have responsibility to the people depending on me.

Maybe it is all just overwhelming. I as absolutely desperate to be able to DO SOMETHING. But, maybe this is objectively overwhelming. I feel overwhelmed.

Peanut Butter and Pate.

Yesterday, I made lentil and red pepper pate. It’s lovely. On Friday, I made gnocchi, again. Today, I made weird peanut butter cookies. Weird because, I don’t measure anything, unless for cake.

And I have been thinking of cooking and food and how I am feeling. And it’s not good.

I haven’t even bought peanut butter for years. Only I like it. No one else here. But I used to buy it as a student, good protein, comparatively inexpensive. I remember it from childhood, sesame street, and sandwiches. I like it. I do not like it enough to have it in the house often, but when I feel lost and insecure, I get some. I eat it on toast, I make cookies and cakes with it. I even invented a recipe for filling chocolates with a kind of peanut butter truffle, which I have not tried out, but, you now, it’s early yet.

I feel horribly lost and alone and anxious right now. That’s OK, because it’s this time of year, and that’a hard for me and soon it will not be this time of year and it will all be calmer. But for now it IS this time of year. Probably I will gain weight. Probably I will be sad about everything. Probably I will search and search for things to hold on to that remind me I am alive, that I have a history, and that I am worth something.

I know a lot of people do get S.A.D at this time of year, and seasonal affective disorder is a real thing. I don’t get that. I am out in the sun often, and I am lucky. My problem with this time of year is different. As we go through the year we have 9/11, then my anniversary, then my birthday, then halloween, and Christmas, and New Years.

9/11 taught me that the before part of life, the bit where I felt real and alive is gone forever.

My anniversary reminds me that I chose one person over everything else in my life, and they were just lies.

My birthday reminds me that while I am somehow still alive, I am not successful, I cannot connect with people, so there is never anyone to celebrate my ongoing aliveness, I have failed at social, and at being.

Halloween is weird, because it always falls in a school holiday. I grew up not doing community things, because we did  not believe in them, but we did party at home. People here do that. But we do not fit in, so we do not get to go to things. We do stuff here, just for us, in our isolated bubble.

Christmas is the worst. My dream life includes a small holiday in the summer and a big holiday at Christmas. So, Christmas is how we find it where we go. So our traditions to go away and enjoy Christmas by enjoying ourselves genuinely and without regard for expectations and traditions. I want my children to feel connected to their childhoods when they grow up, and CHOOSE to do things because they have warm memory of them. I do not feel able to give them that from Christmas. I don’t have any things to give them in that regard, and I feel it is healthier to have *real* enjoyment than to adhere to tradition and feel anxious and scared about it being right, so no one gets to do things they like, no one likes the food and everyone feels anxious about it. I don’t want to give them that. So holiday would be the best option, otherwise their life is seen through the prism of local cultural expectation. If we opt out and stay here, then we are removing something from them. If we opt out and go on holiday, then we are all having a fun time doing something we love, and no one is missing out on anything.

I include a small holiday in the summer, because, the summer holiday is long, and a holiday then is restorative, even like a week in a caravan in Cornwall, or a long weekend city break. Not that I want two massive holidays a year, it’s not about greed, it’s about doing what works for us instead of blowing loads of money on something that actually feels horrible.

I wrote to a real person recently about things I have recently begun to *feel* about my history and things that I am now able to acknowledge are the truth of my life. To me it was the most important step I have ever made in being able to move forward emotionally, from a place I have been stuck for maybe 25years or more. Nothing came of the sharing, not even validation of the feeling. Just nothing. And that hurt. BUT, I do now see that I cannot aim to try and recreate something I recognise from the past for my children, we have to do something new that is for US.

That’s OK, that still builds traditions, just that our traditions cannot look like traditional Christmas cards. Because that is not who I am, and it is not who I can be. If they all want to add that into their lives later, then they are very welcome to, I will not say bad things about such elements, but I hope the can choose what is right for them, in the same way I want to choose what is emotionally better for all of us right now.

It is possible that not doing any of the Christmas things will save us enough to make the holiday idea *slightly* more viable. I mean, if I had managed to put my three university degrees to good use, and have a job (I would LOVE to be able to write from home, but, I fear that my writing basically sucks) then it would be even more viable. So, if we ARE stuck in the anxious, vortex of cultural and historical hell, then, it is, in large part, my own fault. I just don’t want Christmas to be something for my children to have to get through every year.

New years is my favourite holiday, because I am an irrationally optimistic person. I really believe every year that how you star the new year matters, and may set you off on a better path this time. I like the Christmas Holiday to get back here for Jan 2 earliest, so we can always say we started the New Year happy and together.

This year the world is piling extra anxiety and pain on all of us too.

And, this year, as the children also have fallen into problems this time of year, every day seems to be a fight to get through. Everything is fire fighting and hoping, and worrying and crying, and it’s not healthy. But then, neither are peanut butter cookies.

 

Autism Conflict.

I have been thinking about this for a long time. I have been very anxious to explain how I feel about it, but I think it is important to try to bridge the gap between the roles and beliefs.

I have benefitted a great deal from the #ActuallyAutistic community, and I fully understand the animosity towards “Autism Parents” and I understand the drive to be accepted and to be who you are and of course that is what I want from life for my son, who is autistic.

I am, therefore, an Autism Parent. But I am not here to tell anyone that having an autistic child is more difficult or something to regret, or something bad. I am not the person whose child did not get diagnosed, and who thought “thank God” was an appropriate response in  front of me and my child. I am not the person who has tried to cure their son, or force him to be other than himself.

I am here to learn how to communicate better with my son. I am here to learn the things I do wrong, and to try to move forwards. I am here to help him make sense of the world as it is, and to help him make the world be more comfortable for him, as well as making sure he is able to take *actual* breaks, and be authentic, at least some of the time.

But, I am also not autistic. I understand that the world is set up so that it is easier to be me than it is to be him, and that I need to be on his side, rather than forcing him into the mould of quasi-NT. I am there to explain to teachers, I am there to change my furniture, to change our food, to change our outings and events. But, I still exist.

I don’t feel like being there for him is too much or is harder over all than being there for my other child (but then I acknowledge that taking her to the hospital for repeated testing and hearing her be ill often is perhaps not a NT/ Non-NT comparable thing). I DO feel that it is different. And I do think it is OK to say that.

I have to learn a whole new language to support him. I have to learn autism. I have to suspend my innate sense of response, of expression, of like and not like and sensory and everything. Of course I understand that this is what he is doing, except he has to do it for every person and every situation he encounters, which is obviously hard work, and I am here to support him in that hard work, and to be here when it doesn’t work out. But I am not always going to understand how to make everything better. I am always going to be  step behind what he needs, because I am always learning from him. I am always going to be slightly not good enough, which has emotional impact.

I don’t have a NT partner to share my concerns and feelings with. I don’t have a bunch of NT friends. I don’t experience the NT privilege in the same way the hashtag assumes. And it *is* lonely. I feel deeply hurt every time I read for autistic adults that NT people can only get in the way of advocating for autistic people, because, I cannot NOT be NT. I can learn, but if I am going to do a good job raising my son, I also need to teach him that, while he is a whole, valid, wonderful, capable, human person, so am I. As much as he needs the explanations and the sensory peace, and the not expression driven, not subtext dependent things, I will feel them, because the way I am wired is also not wrong. So, there has to also be space for me.

Yes the world is geared for it to be easier for MOST NT people to get that. But I am not most any kind of people. In my world, I am more often criticised for not being neurodivergent, than the chances I get to have a conversation with another NT person.

I am grateful to the #ActuallyAutistic community, but I would also reach out to them to understand that while they are living in a world where everything they do is in a foreign language, I feel like that too, but in the opposite direction. I am sorry if that means I am in the way of them, any of them, expressing themselves.

Firefighting.

Sometimes, life kind of sneaks up on you all at once. Sometimes you need some time to think and feel and let it all sit with you until you are ready.

This is the lesson I am trying to bring to the attention of my son. Starting secondary school is a big deal, and it has not been as smooth as we would have liked. After a range of punishments, and learning about safety and my role in his life, I found myself sitting up with him last night after 10pm, listening to something that sounded much more realistic about his journey. Sounding realistic is all I can do for now. We work, always on better.

In between managing the various needs and losses in that department, I am juggling Miss M to the hospital repeatedly. Helping her through her own journey, being there for blood tests and being there when she can’t sleep, and listening to her shout, and rail against the unfair world that she can’t always quite manage to come to grips with. Helping her learn that I will always be there, even if always means dropping everything to rescue her vomit covered, tear stained forlorn little self from the forest, where the rest of her class were having fun in the woods, and she hadn’t even managed to cope with the bus there.

I am at the point now where I hope one of the tests actually comes back positive, just so I can actually help her feel properly, long term better.

But then, the older one is no easier to help even though I know more about his specific needs.

It is, of course, troubling to hear him tell me how overwhelming the *process* of school is. Not the lessons, not the learning, but the simple act of being there and navigating the day. How to help with that? I can suggest that he uses the nurture room, or the additional spaces, but, I think the activities he has recently engaged in teach us all that I can not ever really know what he will actually do.

The down fall of so many people is the thought that their child would not do x or y. I thought this. I was wrong. But, now there is space to make things better. I hope. A lesson for both of us on how trust feels, and what missing it is like.

To be one person trying balance all of that, and given them all they need is literally 24/7. That means there is time to clean people and sofas and to talk and to listen, and to cuddle and to be held, or kicked, or climbed, or yelled at. I don’t mind all of those things, because small people need someone to do that, and that’s what I want them to know, that they have someone, even if it is the middle of the night. I *want* to be the one they look for. I want them to know that’s OK.

The same as I *want to be there for them to cope with their Dad bing ill. I want to be there for him too. This matters to me, to bring them all together to feel supported and that it is all something we can all do together.

On the other hand, I ALSO want to teach them to self care. I need to demonstrate that too. Have things that I do, rest that I need. Time and talking that I need. Because I have to teach them to look after themselves. How teach that while modelling such poor self care?

How teach them that a small time out to care for themselves can actually help them be more resilient, not less. Pushing all the time is not helpful. Of course, you need to push yourself, but, you don’t need to break yourself. That won’t make your dreams come true.

I love that his new school has taught J that there are more things he might want to be. I hope that he will, one day be able to be cope with independence. I see that I have pushed too far too fast on that. But, I also have to see that I am learning all the time too.

But, for right now I feel like ALL of us are living in the constant drive of fire fighting. Constantly solving a problem, or dealing with something. Constantly. There is no room for fun. We ned to make a bit of space for fun.

I want to wait until I feel physically better but, maybe putting off the fun is part of the problem. I don’t know. I am giving in a constant state of not knowing anything at the moment, and I don’t know how to embrace that.

I do feel that the state of the news and the state of the country is feeding into this feeling of constant crisis. There is nothing right now to hold on to. It’s hard. I would have liked to take us to march. Maybe that DOING something proactive would help us. But with everything else, there is nothing we can do to get there.

Food

So, here I am imagining the things I could be eating right now. This is a fairly usual pastime for me. I am an active person. I have many excuses for why I am the size I am (16-18) and I *like* eating.

But, I have been recommended some online based CPD. Which I have been doing, which is from these people . CPD is a little bit of a sore point for me. I know I need some, I want to go back to work. But, I am currently unemployable in the field in which I used to work, so, CPD might not help very much. Still, I get easily bored, and there is only so much Toni Collette in Wanderlust I  can watch, so…

I did not expect to like this course. I did not expect to agree with it, or to feel anything about it. But, it’s a few hours of my life to complete the course, and I have those to spare if I am staying at home. I mean, last week, I used up my time running (OK mostly walking, my knee is still in recovery) a half marathon, this week, addiction recovery training.

Yesterday really opened my eyes to my feelings about food. I managed to eat a normal person sort of amount for the first time in a while, because I had the course to do, and because I was consciously choosing food to eat, and not just eating. Also, because I was doing one of my very favourite things to do, planning a holiday itinerary.

Sadly, there are not enough holidays to make this a permanent solution, but, it really does, both now, and I note historically, help me hugely with managing my food.

Today, I am still motivated by the learning, and the understanding I have gained about how food is in my life. I have eaten two slices of wholemeal toast, half a small can of baked beans, and half a nectarine. I feel like I cannot be sure that this is a healthy amount of food to cover breakfast and lunch. This is my problem. I don’t understand portions or meals in an emotional sense. I mean, I know enough to run food and mood training, and to understand what the children need, but for MYSELF, emotionally. I eat what is normal, and then, I am thinking about what ELSE can I eat, what next. I have a new sense of this being something like knowing that one drink is not possible. But with food, it *has* to become possible. And I feel reinvigorated in my quest to make this possible.

NOT to lose weight, or to look different, or to diet, but in a path to learning how to enjoy food without having to feel ashamed, or realise that I didn’t even like the things I ate so much of. Just to FEEL like my mind has space for more things in it. That’s what spoke to me. Getting the thought and time and emotional space back. THAT is when I realised I don’t need a weight loss diet, but a way of managing the whole concept of food. I don’t know if this is that way. But I DO feel more positive, and more ready. Like a kick start. Like a sign post. Like checking off the days of eating like a normal person, not wanting to be sick at the end of the day, not wanting to have done something different food wise.

I don’t know. I don’t want to claim any kind of new label, or be a victim of anything. I just feel more positive, and more ready to speak about how food has, often, too big a space in my head, and in my life. Maybe *That* is a good place to start making changes.

The other thing I am trying to learn is to only eat things I really want to eat. it’s not fully ready yet, as I also don’t believe in food waste, and I also have to feed a whole family, and there are budgets and time issues, but, if a meal is worth looking forward to, then it is worth waiting for, and that helps too I think. I realised I very rarely look forward to a meal, It just is, it’s the act of eating that occupies my thought, but if it were the actual food involved, if that became a thing to feel good about, then, not only would I look forward to it, but then, every mouthful would be a thing to savour, and think about and that is a big improvement. Usually, I realise, I don’t always even taste what I am eating. How stupid is that?!

All of which is great.

I had a normal person dinner. I shared wine and chocolate. Because I am not dieting, and sharing chocolate, in a limited way, where you especially taste and enjoy each flavour.

This is the key I think. It is not possible to never eat, so, learning to do it in such a way as to just enjoy the tastes, and carefully identifying tastes, flavours etc.

Which is why I am very excited to go out for dinner next month. Where the chef will be special, and the experience. Where we don’t even know what the food will be, but trust that it will be good. A tasting menu, so, an experience in flavours and savouring. This os good because I am still learning about what I actually most *like* to eat.

It’s really shocking, when you think about it, how something as essential and every day as eating can be so difficult and emotionally challenging.

Still. I am not punishing myself, or starving. Maybe I will eventually be smaller as a result of new practices and thoughts, but, it is not the actual goal. Just being able to deal with food in a healthy and reasonable way.

 

Mental Health In-Patient Don’t Care

I have written some of this in my book, which will likely not happen, because I don’t know how to do the editing the way the publisher wants it. And some things are better my children are saved from.

I was a mental health in patient, more than once, over many months. I maintain that this is a different relationship with mental health services than anyone who only encounters primary care professionals.

In my first EVER admission, which lasted approximately 6 months, I experienced many facets of in patient life. 6 months is a long time to continuously see and experience staff and patients.

I am Bipolar. There *is* a level of risky behaviour inherent in being Bipolar. At no point to I claim to have been a good, or polite or compliant patient. I DO claim to have been ill (surely the NHS would not spend money keeping me in hospital otherwise) and, this illness is on which does have significant impacts and implications for behaviour.

So, I admit to being non compliant with medication (which turned out to be useful, since antidepressants cause me to switch in to serious mania), I admit to ONE, consensual, sexual relationship with one other patient.

When I was admitted, I was in a full time job, with sick pay. Some months full pay, some more months half pay. I lived alone and was relatively new to the area in which I lived. I was already taking, and being monitored on Lithium.  I was also told by the admitting staff that I would be in hospital for the weekend. I didn’t have the experience to know that was a lie.

The mental health unit I was admitted to was a mixed unit.

When I first got there, I was extremely quiet and scared. There were very few things to do, hardly any therapeutic groups, occasional art based occupational therapy. (I was lucky, I even got to work with the student art therapist) Mostly, the opportunities were limited to smoking, talking and hiding.

If you don’t know, and, you know, why would you? When you arrive in hospital, alone, they make a list of everything you have with you, down to what underwear you have on. Then they keep you in hospital until you get well enough to embark on a range of time out, from an hour to the local shop and back, a morning / afternoon, a day, and eventually over night stays away from hospital.

Many people get visitors, and there is time set aside every day and most of the weekends for this. I did not get a huge amount of visitors. My family were hundreds of miles away, and most of my friends were too frightened.

6 months is a long stay. Not, by any means the longest stay, but, enough to see a lot of people come and go, and enough to build relationships with people who are there.

So, I have stories. Things that happened, things I saw, things that were said to me. I also want to be clear that I understand that patients in an inpatient setting are ill. They need care. So, my complaints are not at the patients, who were struggling, and ill, and trying to  cope with lives that have not worked out quite as they would hope.

One of the things that happened, about half way through my stay was that a patient picked me up and dropped me on a concrete external floor. My wrist was broken. I sat and waited for meds to handed to everyone, and shift change handover to happen, before I could be taken to the hospital for X-rays and plaster casting. I ended up in plaster for 12 weeks. I am not sure if part of that was because I was an in-patient. It DID mean, and my consultant told me, that I stayed in hospital longer, because they wouldn’t send me home to be alone with a broken arm, which I am pretty sure is not how A&E would have worked. Why remove liberty for YOUR lack of care? Why choose THEN to play the stupid game in which no one helps you unless you ASK? I never learnt so quickly to eat one handed, to tuck shoe laces in, and to wear bras longer than usual, because there are all things it is not what I want to ask some nurse I don’t know to help with. How is allowing this to happen what amounts to care?

I met a lot of people while I was there. I was there long enough to get to know them, to meet their families. I was without visitors, so, patients were kind, their visitors shared food, they recognised how it might be. I got close to some of them. I had a very brief relationship with one of them. It was sexual in nature. I personally don’t feel like this is too indicative of illness, sharing space all the time with people for months, does lead healthy people to form relationships. It didn’t work out, but, relationships don’t always and that’s normal too. I mean, it might be that I am more likely to form sexual relationships given some illness, but, it is not, by any stretch way far from normal.

After that, a male patient was admitted, who was unwell, part of his unwellness, as far as I could tell, (giving the benefit of the doubt, since I was told he couldn’t help it) was to inappropriately engage with women on the unit, whether that be verbally, or by actually touching inappropriately. I was part of a group that went to the office to complain that we didn’t feel safe, and didn’t like being touched and spoken to like that. It is after all the responsibility of the staff that people are safe. Everyone there is vulnerable, not just him.

I was held back after that meeting. Kept in the office on my own. Informed by the manager that I, *especally*, could NOT complain about his behaviour towards me, It wasn’t possible for someone to behave inappropriately to me. I had had sex with a patient, so how could anything anyone did to me be inappropriate or scary?

I can’t believe, looking back, that I took this. That I accepted that I must deserve any thing that anyone wanted to do to me, because, that’s what my diagnosis means. This is appalling! This came direct form the manager of the unit, so there was no where to go complaint wise anyway. Not that I was in a position to cope with everything else and complain. I was too busy trying to get  out of hospital and back to MY life with my job.

Every week, I asked. I am willing to admit I may have initially been ill enough to not be allowed to work, but, I also needed to work to pay for the normal living expenses. Every week, they would say, “Maybe next week.” So, I never even thought about needing to apply for any benefits. Why would I? This was my first ever admission. I didn’t have people around me to advise on what would actually happen.

So, eventually, I asked what they expected me to do, when my sick pay went down to half and I couldn’t afford my rent? “Why did you not apply for benefits, what did you expect would happen?” So, not only did they expect me to KNOW THEY WERE LYING every time they told me I could go home soon, but they expected me to know I would need benefits after they destroyed my life that didn’t need any benefits before. PLUS, they expected me to be well enough to figure all of this out WHILE I was, according to *them*, too ill to even cope with sleeping in my own bed.

This doesn’t even cover the discrimination my diagnosis caused AT work, or, in applying for training, from universities and such, this is just in the one place you might imagine you will be safe and cared for.

This is what psychiatric hospital was like for me as an inpatient. Even to the fact that, when I was discharged, it was simply because, I came back from a night away, and they had put a new, sicker patient in my bed, bagged up my possessions, dumped them in the office, and told me there was no bed for me when I got back, but, if I stayed away for another night, I could have a bed. MY argument was that, SURELY, if I was sick enough to be there, and they were unhappy to send me home, because of that, how could they bag up my stuff and tell me there was no room for me? So, they had to admit that I could go home, and that is how I was discharged, unceremoniously, and all in a rush.

I don’t want to dissuade people from getting help. But, perhaps it matters to share what it actually can be like. People in mental health units are still PEOPLE, and that is important.

Films and Friends

I am in one of those can’t sleep cycles. It’s OK, it will correct itself soon.

As such I find myself with even more time for films. I am a film watcher. I can’t often get to the cinema, so I preorder the DVD on the day of cinematic release, because a) it feels like being engaged with the movie at the time of release, and b) because buying the movie on DVD is cheaper than the cinema, and I can watch it many times, and at any time I have.

This evening however, I watched a film that I saw by piggybacking on someone else’s subscription service. I can do this occasionally at night.

This film, like many do, but, also, uniquely in it’s way, not only told it’s story but shone a light on my own. In this way it changed my life, because I understood it more.

It was a film, that felt, almost instantly, like it was an old friend. Like it could wrap all of me in warmth, and let me feel being, and breathing and like stretching out in the sun.

Books are like this. Books can become friends. It can be painful, and induce crying, to have to close the back cover after learning and knowing the people and places in a book. I have had books that I keep close after reading because I am not ready to let go of the world and the friends. Films are not usually like that, but I have a growing number that are. They are not usually, if ever, the latest blockbuster. They may even be a classic, or they may be something that four people saw and hated. You never can tell when something is going to reach right on in there.

And, the thing about books and films is, they are probably safer than people friends. They are never going to judge the cleanliness of the pjs, or care about what time it is, or think I am a horrible, selfish, fat less-than-person. They are not going to disappear, or be replaced with a stranger. Their diaries are always clear.

When I was younger, I could be lost in books and have my book friends. Now, much more, it is films that I make friends with. Maybe that my mind grows slower, or maybe that my concentration is broken, or maybe, it is easier to multitask a film than a book. And maybe silence is too loud for me these days.

But, perhaps I have not valued film enough. I do not believe in real people. The only ones  I regularly interact with are ones I grew myself, or people I already know don’t like me. Which written down looks like it could be paranoia, I *am* good at paranoia. On the other hand, I have objective and referenced evidence, so I am fairly confident. And anyway, it’s not a complaint. No one is obliged to like anyone else. It is perfectly possible that I am simply not likeable. Likeable is not a thing you are taught to be, it is not learnt. Maybe you just are or are not. It just is what it is.

Maybe, then, mania is a gift for those of us who are unlikeable. The gift of truly believing in one’s superior skill, to truly believe in funny, and clever, and sociable. TO not see the reactions of others. Of course, it spirals out of control, and that spiky, splintered, sharp, broken glass, invincibility is brittle and painful. But, maybe the gift is to have some time where you believe you are enough. MORE than enough.

Maybe real life is harder for those of us who know the top reach possibilities. I mean, it is hard to crawl through the wasteland and fetid slime of the nadir of human possibility, but, to experience remission of that, is to feel alive, and to see possibility. To also hit the zenith, maybe that gives us disappointment and emptiness on returning to reality.

Of course, maybe that reality just is empty and disappointing.

Film, though, is like having a friend who is there, and warm and real and doesn’t actually have to hide the irritation and the effort of dealing with you, nor does it have to look for excuses to not be there, to save it’s own sanity. Nor does it have to sleep, or anything.

I really do think that, I just need to get more films. I mean, I will revisit the old friends many many times, but today I have been reminded that sometimes, you know, instantly, that you have fallen into a warm and comforting long term relationship. Some people can do that with people. I can do that with films.

Of course there s sadness, as I wish for reciprocal abilities. To be there. But my being anywhere is never good enough. I can try all I like. SO, while I don’t really know how to stop missing that, I learn the value of what children already know. It doesn’t matter what other people think, and it doesn’t matter how you frame it. Film is essentially, invisible friends made visible. Visible, audible people. That put feelings inside you. That stop life being a switch. Without them, life is childcare, and vast swathes of emptiness. Like being switches off when they don’t need something. Fill up the emptiness with visible audible people, who are not real, but, imagine the job of an actor, not as celebrity, but as a person who can build feelings. A person who can share feelings, and teach others to experience feelings and humanity. Maybe this is a very valuable ability.

In this scenario, then, tv, is not mindless at all, it is transformative.

Maybe this is why older people, who are more likely to be without other forms of connection SHOULD be allowed to waive the license cost for TV. Because, it is especially therapeutic for people like us, who are otherwise alone. Should also be the case for isolated, sick, lonely other people. Maybe TV should be medically necessary. To make sure everyone, however unable to go into the world, however capable of being in the world, but deeply unlikeable, can have access to humanity, to feelings and to the warm blanket of a film that fills you up, emotionally.

Good Mental Illness and Bad Mental Illness.

I have been thinking about this for some time, maybe even some years. Trying to put my finger on what bothers me about the nature of the discourse on mental illness, and something happened today, that helped me grasp what it is I think.

Someone said to me that, it is unfair to say that a known gun man in a mass shooting has mental illness, because you don’t know whether they might have depressive disorder, which wouldn’t make them dangerous, and that’s not fair.

And suddenly I got it. Somehow, there has been a schism in mental health reporting and talking. It has become OK to talk about, claim, write about, be aware of, be comfortable around friends who have been diagnosed with CERTAIN mental illnesses.

Now, I absolutely don’t wish to negate the suffering that ANY mental illness causes, my issue is absolutely not with that, no one’s suffering or surviving is less valuable and less painful.

I do, however, suggest that, the current standpoint *may* actually decrease stigma and improve life and opportunity for people with what are considered the “good” mental illnesses, an equivalence, if you will, to the deserving poor of yesteryear. But it seems to be INCREASING stigma for people diagnosed with the “bad” mental illnesses. You know, the ones the person talking to me was referring to, the ones we are still frightened of. Severe and Enduring mental illness, possibly including an element of psychosis.

How come this person was happy to make a distinction for reporting? Would it not have been better NOT to have referred to the mental health of the gunman? People with all manner of mental illness, even the scary illnesses, are MUCH more likely to be hurt as a result of violent crime than they are to commit such a thing.

I don’t want to distinguish experiences. A person may present at the GP and feel true terrible, while for others, the very act of being ABLE to turn up, at a specified time, and hold a conversation represents a level of wellness that they cannot imagine. These people may have the same diagnosis. People who have spent many months in psychiatric wards will have a different view of the mental health care provision than someone whose only experience is with primary care services. This does not negate either persons experience (although only one of them is having an experience of mental health care service as a distinct NHS provision)

It feels like people with more severe and enduring mental illness are being left behind while some mental illness becomes easier to talk about, and to live with (in terms of what it is possible to do, societally speaking)

Yes there is still stigma, there are still huge barriers to work and services. But these are improving. I have seen them improve in my life time of being a person with a severe and enduring mental health issue. It matters that no one is left behind. No person with mental illness asked for their health problem. No person with a mental illness is less of a person.

It matters when we speak of mental health awareness that we include all elements of that. Which is hard, I mean, no one tries to raise awareness of “Physical Health.” But, the stigma and challenge of living with mental illness of all kinds has always been so huge that, it has mattered to speak about all as one group.

Is it possible to keep speaking of this group as homogenous? Can we raise any more awareness of “mental health”? I am not sure that we can, not without in school programmes teaching children to CARE FOR their mental health, in the same way as we teach them to clean their teeth, or get their eyes tested, or hearing. I’m not sure that we can without funding to support or address not just the barest minimum of need.

I am not for splintering, and making new groups. I am just talking it through. There must come a point where raising awareness, where there needs to be a way of channeling that awareness, and providing care for the additional need it causes. It may well cause an easier world in which to live. It may improve many things, but it needs not to leave groups behind.

The cheery stories of experiencing a mental illness and getting over it, and looking back on it *are* helpful. But, what if there is no salvation? What if there is good and bad forever? That is the reality for many people. What are they supposed to learn? That they are failing to overcome an illness that actually, is there, part of the rest of their life. They are not FAILING not to be well forever. They are not even in a world in which “overcoming” is a possible outcome. These people are not less, these people NEED not to be left behind as we try and make improvements in mental health care, and acceptance of mental illness as a thing it is OK to talk about.