Write a Book.

Someone has suggested to me that I write a book. Actually, to be fair, over the past 4 years, maybe one person a year has suggested I write a book. Not all of them with the same information about me, my life or my writing ability. So, I have been asked (and actually collected research) to write a book about Duel and Multiple Exceptional boys. I have been asked to write a book about teen mental health. I have been asked to write a book about being a parent with a severe and enduring mental health problem.

Now, for myself, I love to write. My dream job is writing. OK, I personally see my ability more in the realm of newspaper / magazine column than book, since I have a slightly short and chatty style. Plus, it’s easier to be on topic and less waffly that way round. Plus, a WHOLE book?!

The other thing is, well, two fold. Firstly, while I would absolutely love to write about some aspect of my own life, because, you know, I have already done all the research and everything, writing a book about something suggests I know about it. Which *might* be true about myself (a bit) – but, can I tell you what to do for the best with your DME boy? I certainly cannot. I am not entirely convinced I know what to do for the best with my own! Considering that I am on the point of complaining to the county about the nature of education provided for all for the remaining 5 weeks of term, with regard to all, but obviously, in particular my own recipient of said education. Can I explain how to cope with autism testing, and the way it drags on? No. I can tell you that it does, but, how you cope with it? Goodness knows. After all, I am a crazy person, I might have misjudged the nations feeling of these things given that, while I didn’t dislike the *people* who visited us at home, or the ones we visited in hospital, I REALLY struggled with the paranoia induced by having strangers so deeply involved in our lives. Because, that’s me, and that’s my fear.

Sae thing, sort of, with teen mental health. Can I write honestly and openly about being a teenager in a mental health unit? About self harm? About food and eating issues? About social issues related to any and all of the aforementioned? Absolutely I can. But, can I tell anyone else what to do? Not really. I mean, what I would love to do is to set up an online space, which is where young people can ask questions and be properly signposted to help, and be supported throughout, and not abandoned. Where they can get the no bullshit version of making it through that particular version of hell alive. But, also, where they learn that they can choose things that work for them, because, I am old, and I am not them. The biggest thing that being diagnosed, and being held back by being in hospital, and on so many medications stole from me was my right to choose, my ability to know myself, and, what was and wasn’t open to me by way of life choice. And the loss of feeling entitled to dreams. Because, there was no, “work hard and you can be whatever you want” there was “You are incredible being employed, but you can’t do x”

Of course, not being able to do somethings is perfectly normal and not mental health related, but, when those things are your actual job, that you have been actually good at, or your actual choice of career, which you have the grades to be allowed to study, then it becomes more about “we don’t want crazy people” than it is about ability. And that’s something to be aware of, just so you can protect yourself, or at least so you can ask the right people the right questions. Like, “what are the legal reasons I cannot do x?” Maybe my version of an on line space would include that kind of mentoring, that kind of person to lend a voice and reassurance. Because the other thing that being in psychiatric hospital steals from you is any ability to trust what you know and what is real or not.

But, I don’t know how valid my own experiences are in wanting to set something up so people are able to find a non threatening way to get signposting and to speak. Because, I don’t have, right now, the backup, either for myself, or within the community.  How to know signposts work, especially given the parlous state of MH services. And, it is a big deal.

Writing about being me, a parent with a severe and enduring mental health problem is at once easier, and more complicated, because, part of the journey is having children, who are people in their own right, who may prefer not to be brought into such discussion, especially in relation to bipolar, and especially given the genetic information such confers given the genetic clusters that include ASD and Bipolar. And because, there are many other, people and circumstances that allow us to be where we are now. And they cannot all be referred to. Some people are good at editing themselves. I could in column bursts, but in book format, it would have to be seen. Because, a book follows a developed thread. In which something happens because of something else, which doesn’t work if you have to leave a lot out for the sake of other living people.

Plus, on top of all of that. One of my signs of being unwell, is writing reams and reams, and not knowing whether it hangs together, or is manic rambling. I know editing exists for a reason, but how do I know if I am able to manage such?

So yes. I would love to write a book. TO have created something lasting and a testament to everything we have managed to survive, is a real goal. But then, while the world falls apart, is it entirely necessary, or even readable?

Struck by Lightning.

I watched this film. Yes, I like this quote from it. But, I have learnt something more about myself.

Always, these kind of discovery, coming of age things appeal to me. Because I am a stuck person. I am, no matter my chronological age, or what I spend my time doing, stuck, at the point of being NEARLY a formed person, but somehow stuck in the one day phase.

I think this is interesting, and I wonder whether it is partly a response to living with the change in life that comes when adolescence is spent in the psych ward. When, from, “when I grow up, I will…” is replaced with just fighting to rediscover normal.

Where all the things you think life is about stop, and something new comes in, and you are just carried backwards down the river of life. Fighting to breathe, and never knowing what is the reality and what is expected.

it’s funny, because, you can do a whole range of “normal” things, but you lose that sense of achieving, of being part of the same life.

But, this film, like so many coming of age films caught me. because, I STILL wonder why my real life would be and will be like. Which is dangerous, because, this is it. There is no rehearsal, there is no, absolutely no chance that I will wake up one day back in my original life, before the hospital, or before the house move, or before any of those pivotal things. So, I am not sure how to unstick. I mean, I keep doing things, but, I never really feel right. I wonder if this happens to lots of people in the same circumstances (of which there must be many)

In this film, however, when the hero loses everything despite his best, most underhanded and concerted efforts, and despite the challenges he faces, everything lacking in his life, he gets to know how badly he has been treated by the one person who he was supposed to rely on, but never could, and then he gets to die.

This is what I wished. And, I am not sure that there isn’t actually a level of mercy in the outcome. But, I suppose, that having been given a chance to do more, doing more must be what happens. But how to reassimilate the ongoing life with the pre schism existence?

This, I suppose is something that everyone must come to terms with?

Competitive Suffering Snowflakes

This week, I have been reading a lot about “Generation Snowflake” – describing people who are younger than me, who are supposedly not as robust and somehow less able to cope with the world as it is. More likely to complain when things get tough.

Which seems just a little bit unfair. On a huge number of levels.

I mean, of course, not only do these younger people have to live in the world as it is at the moment, which is hardly a generally enjoyable, optimistic and fun experience, and which, by and large they can thank us and our elders for. But also, they are also in the middle of a new way of sharing. Things are more shared, more there, more open. And yet it is still wrong to share negative things openly? And no one will tell you this in advance?

Even worse, on top of this, it now seems OK to say that these young people, in the UK, do not deserve to complain because they are not living through war (except they are), they are not suffering in real terms (except the rising number of people living in poverty, the disabled people dying, the lack of mental health service, the cost of education, the housing problems, the rising number of hate crimes, the political landscape…) and they must not consider their own problems as more than or equal to a real grown up’s life.

Well, I think this is horribly wrong. I think why do we have to force people to suffer before we decide they deserve to feel anything? Surely we should be helping people to grow up able to understand the existence of suffering and fight it, without having to put oneself, or have oneself be put through suffering that will allow other people to consider them valid.

Do I think ‘safe spaces’ and the ability to no platform speakers is necessarily the right way to put this right? No. But I DO think that we cannot see someone else’s life, and decide for them if they need help. And, if we are going to live in a world in which sharing is allowed, then, we have to respect that. No, we don’t have to personally help EVERYONE, but, we have to respect their right to ask for help.

Someone today informed me that *I* have no right to an opinion on this, because I do not know what real suffering is. But, I know what real suffering is FOR ME. And unless anyone else knows that too, then, I have the right to ask for help for my suffering and should be respected if that is how I have chosen to refer to my feelings. If I feel I am in pain, if I am suffering, then, that os what is happening for me.

Partly we can see this more clearly by looking at the experience of mental health problems (which I suspect will rocket after this year) in which the experience of complete desolation is as real as any objectively viewable desolation. So, we cannot know or judge the feeling of anyone.

Generation snowflake is just a spiteful way of being unkind to younger people.

University Hand Holding.

Student mental health is in the news at the moment, sadly, in response to some deaths, which are, fortunately not hugely common among students.

What it IS important to know, is that, the peak onset time for serious mental health problems, is late teens / early twenties, what we might call, university age. so *if* you are wired to such, this is the time to be most aware. Added into that, of course is the additional stress of being away, managing household things and studying in a different way.

Of course, mental health care is massively underfunded everywhere, and, even if you know you need some, to actually get some, is pretty challenging, which is not what you need when you are trying to manage all these other things as well.

But, I was wondering, since I WAS a student with a mental health problem, if you knew how things can be, and how they can spiral?

I was known to psychiatric services before I went to university. I had the kind of supportive family who refused to attend family therapy sessions in case anyone thought my illness was their fault, and my 18months of outpatient day hospital ended because I was old enough, not because I was better enough.

My university did not guarantee first year students places in halls of residence, and I did not get a place there. I had to travel, in an emergency several hundred miles across the country to find a flat. A bedsit that I did not share with anyone. That was not near to the campus (It was a train ride away). I did not know anyone. And I was doing all the same new adult stuff as everyone else, and managing a known mental health issue.

There were things I struggled with. Things I surely could have done better. The nurse on campus was absolutely excellent for me, which a lot of people don’t have. The doctors were helpful. and available. I know many students won’t have this experience. I tried to make it on no meds. I failed. And it felt like a failure to me then. I informed staff when my meds were started, increased, changed or stopped. I know NOW some 20+ years later that, this was wise, but was only useful if they knew why I was telling them. I didn’t know it then, b ut the medication I was on was really badly suited to what my problem was, and taking it made it impossible for me to function (I am a bipolar person who cannot take antidepressants in the usual way, they trigger massively problematic manic episodes for me, however, like most bipolar people, I wasn’t enough years into my MH journey t have been appropriately diagnosed, much less treated.

I had food problems, maybe not seriously enough to be an eating disorder, but, I was also self harming. Or, if not, I was buying people things. I am lucky I never ended up in huge problems for this, because I got a job, and I was terrified of having to give up and go home.

I DID have to give up and go home (to family chorus of “see? Now, you can’t sit around here, get a job”) because, who can work 30hrs a week, do a full time degree course, and manage a hefty dose of psychotropic prescription medication.

Luckily, I was determined to go back. I like to finish things. Mostly just to prove people wrong. But, I found out, on my return, that my tutor had added a note to my file, saying that she didn’t think I was suitable for study as I needed handholding. I should mention, at this point, that my starting point at university was a chat with the course director saying people with a levels as good as mine didn’t usually choose this course at this university, so, other than my mental heath, there was no academic doubt about my suitability. But, that’s what mental health problems do, they make you doubt you, but also, they make everyone else doubt you as well.

And there was no help. The only thing I could do, to prove I deserved to be there, was to hide my mental health issues, never speak of them, to struggle less than anyone else, to NOT keep them up to date on my treatment, however badly it affected me. This was portrayed as the normal thing to do, the right, and strong thing to do.

Is it any wonder then, that people are driven to extreme courses of action?

It was a difficult time. I want to speak to people in  schools and colleges and tell them to look for good places to reach out. It is OK to need attention, or to talk. Obviously, this is harder with very limited support services….

I will also add that, now, 20 years on, I am still here, and I am med free (although, I *still* find that places additional stress sometimes) AND I currently have 1 arts degree, two post graduate degrees and have been formally accepted to begin my MSc in January. I don’t FEEL successful. But then, I grew up judging myself against a normal I could never be, so, I may have a distorted sense of such things.

 

A Teenaged War Hero

 

Yes, there are are child soldiers in the world. They are suffering and dying. People are. All over the world. But this does not make anything you endure less. There is no correlation between their suffering and yours. You can suffer. They can suffer. It is different, but one is not validating, or reducing the other.

To insist one is more or worse or has more value dismisses the struggles. To fight, alone, though a world where reality is not to be trusted, where people can lie about you, and no one will believe you because, you are the person with mental health problems. Where people who were friends leave you as if you were dead, where nothing you used to be able to aim for is there anymore. Through an internal landscape either so deeply destroyed and pitted and dangerous and dark, OR so sharp and sparkling and fractured and invincible. To survive every day with that as your internal world, and a lot of your external world, is to fight in a war.

The “help” you can receive does not understand this. And they talk about adjusting expectations, and stopping wanting the things you wanted. They ask you to not be you, so that they can pretend that this new version of something resembling a person like you is well and can at least be in the world, even though you are not well, you are irreparably stolen from and damaged. And they let you go, like that, because, their parameters are not set such to rescue YOU, but simply to prevent you hurting anyone. Physically, that INcludes you, psychologically, no one but you knows or cares.

They want to make sure you are not hurting your body. Even if you hurt your body to remind yourself that you ARE actually a person, who is capable of hurting – because the system expects you not to be, to not care the things you have given up. They expect you to NOT be a teenager, to suddenly NOT need family, or friends or fun or ambitions, and just to sink to a level where being alive is enough. If you can’t believe that, then you are failing, and they won’t help because, that is all they can offer.

It is war. To come out of the other side is HARD. To find a person who can see this, and who can hold on and see you through this and see that you have value and CAN do at least SOME of the things that drove you initially, those dreams that are part of you. You need someone to tell you you are allowed MOST of those, and someone to help you rebuild those you can’t have.

To come so far out the other side to have built a career and a family is wondrous, but, every step is precarious. To place your trust in that relationship you have CHOSEN, than family you have built, is to risk someone ridiculing that, and making that even less possible.

To those people, those teenagers who have fought and fought and succeeded against the professionals, and the medications, and the stigma, and prejudice and are now successful adults, this is to be a war hero. TO have made it through, and achieved and not to have been wasted by the mental health machine, either the monster of the illness, or the insidious cruelty of the system and society.

Those in the midst of such a journey. It CAN be won. it IS possible. Do NOT give up.

You cannot know whether you will be the one to succeed. So you have to fight as if you will be.

And you have to celebrate every step. And know that no matter what anyone else thinks, it is hard won, and worth celebrating.