Guess Who’s Back In The House

I have been meaning to write another post for some time, and now that people have stopped expecting another post- my blog having died a slow and tragic death- I have decided this is the perfect time to revive it. To drag its bloated corpse from the depths of wherever it went and to let everyone know I am well, healthy, and relevant again. You are welcome.

I reread a few of my last posts on this blog. As the kids say, it was ‘yikes’, but mental health does that to you. We’ve all been there.

So, my real question is how I reacquaint myself with this blog and what I possibly have to offer. There are many things I would like to say, but these topics usually have nothing to do with me at all. I feel that, now I am in a much better place mentally, there is not much left to say when it comes to the journey that I began with you all. I have aired my grievances to the Universe and it heard. And sometimes, it smacked me back in the face.

I suppose I should briefly mention what has changed for me since I last wrote here. As I can see, the last time I wrote was when I was still studying for my undergraduate. Good news all- I graduated! Brilliant, I know. I received a Bachelors Degree in Science of all things and you will be pleased to hear that I am now studying for a Masters. What, you ask? Abnormal and Clinical Psychology.

What did I do in the meantime? I had a year out from education. Doing what? Mind your own business.

Well, that was a lovely catch-up…

The issue with this blog is that I am no longer the person I was in the beginning. I started this around the same time I started my own journey, not necessarily into adulthood, but into my mental and spiritual health. I have changed- as is the cyclical nature of life- and I feel I am still changing, forever morphing until I become someone I am completely happy with, but I am already on that journey, have made considerable progress, and I have found, when faced with the result, I am proud of what I have done and who I have become. I am not the person I was when I started this and the evidence lies blatantly in my past ramblings, what this blog was intended to be.

So, I come back to the question of what now? What is there possibly left to say?

I suppose I am in a position, at this point in time, where I have learnt from my experiences, from the good and bad that I have done, yet equally endured, and the way we go through life expecting extremes when we should learn to accept the grey areas instead. Life can be complicated, and to expect a linear passage through it is futile. We all know that perfection is impossible, but so is expecting life to be nothing but negative.

And so, in this way, I suppose I am in the fortunate position of saying that I was beaten and bruised, but I have healed. Perhaps not entirely- there are always sore spots that need a little attention, but they no longer prevent me from living my life. There is more to life than my disability, my mental health problems; there is always more to say, to discover. I would like to use this platform to do that and if it isn’t to your taste, I suppose you can simply not come here again.

Yet, it is important, having come from such a place, to acknowledge that life does get better. To say how and why, and to not neglect the fact that my past influenced my present. It would be absurd and irresponsible for me to dismiss a part of my life that was monumental, and not share my experiences and the journey I have undertaken to come out the other side. I am here now, but that isn’t the case for everyone.

As for those who have never been on that journey, well, then they must understand. Disability and mental health isn’t shameful or a taboo, nor is it something that we must keep quiet about. To do so would be ignorant. If my life or my identity makes people uncomfortable, the greatest thing you can do is to speak out and make them even more uncomfortable. I have no more apologies to give; I have done my time and suffered through it, plead guilty when there was nothing to be guilty for.

They say honesty is the best policy. Well, it is time to be honest- to wake up to the world around you and those little flaws in people and their lives which make them ashamed when, in actuality, there is nothing to be sorry for.

I have not come here to preach or to lecture. People will listen only if they wish to, but I think it is time to bring back why talking about your experiences is important. To those who were once in the same position as me, to those who still are, and to those who have never had to contemplate what that must be like because it has never affected them.

I still couldn’t say the direction I want this blog to go in, nor when I will be back, but I will be. There is always more to be done.

Take care.

Here and There

For something so important, self-care is hard. Like most things in life, I guess. Sometimes it’s hard to upkeep the facade and sometimes it’s inevitable that you fall back down the rabbit hole. 

I have had multiple panic attacks in the past two months. I have had insomnia, I have cried, and sometimes I have wanted to cry but I couldn’t. I barely wash when I don’t leave the house or I forget to brush my teeth. I forget to eat and then I eat everything in one go. My room is a mess. I don’t want to write or draw or read or watch tv. 

But I have to leave the house, to wash and dress and interact like I want to be there. In some respects, I do, even though I can’t always be there mentally. 

I tell myself that’s okay because in a few weeks, I’ll be vaguely fine again (if it’s even over that fast). What if I can’t wait that long? Tough shit, I suppose. 

Life goes on and I refuse to let it go without me. 

It took me five weeks to write a ten page story. People told me that it was amazing, that it was so well-written. As if I hadn’t written a sentence a day, sometimes a paragraph at my best. Rewriting and always thinking, but not thinking at all. Just like everything else. It just takes me a while and I’m not known for being a patient person. 

I want to do everything but I can’t do anything at all. It’s so easy to think of sleeping, taking a shower, working, interacting. It seems like it’s possible if done step-by-step. But it’s not really that easy at all. 

Just look in the mirror and smile or think of happy things. Well, I’ll get there but I have to take two steps back to go five steps forward. It’s not as bad as it used to be but that doesn’t make it good. 

Sometimes self-care is listening to the same song over and over, sleeping until you’re no longer tired, or helping yourself to that bath bomb you were saving. Taking a moment to breathe is a luxury. To be able to think clearly and see something so simple. Self-care can’t always be profound and instantly progressive. Because why should it be that easy? 

It’s okay and it’s not okay. And that’s all okay too. 

I’ll see you on the flip side. 

 

P.S. I forgot to add this at the end

The Atypical Delusion

If one does not understand a person, one tends to regard him as a fool.

C.G. Jung

 

There is a fine line in Asperger’s. Even for me, it is hard to distinguish what is the disability and what is quintessentially me. People always say they understand, whether that be me or my disability, but the truth is, nobody understands. Perhaps someone else with Asperger’s, yet these aren’t people I come across daily.

I always have a question mark stamped over my identity, over what makes me who I am. When I discovered I had Asperger’s, it felt like my questions were answered but it turns out that with this disability comes more questions. It doesn’t cure me and it certainly doesn’t change the way I feel inside. To know that I will always struggle through life in ways that others will never really understand, to always have reoccurring depression and constant anxiety, that truly is enough to crush someone.

But the main issue here is those mockingly pitiful words that always come out of people’s mouths- “I understand.”

I understand. Of course I understand.

Words that I always hear when people know about my disability, about my mental health. But no, you don’t. I now understand that I should never expect any of you to understand. Worst of all, none of you do understand because you have absolutely no interest in doing so, because people are inherently selfish. I’m not saying that people don’t try or at least make exceptions for me, but people simply don’t care to understand. If it doesn’t affect them then why bother? Let’s be honest.

Friends and even my own family really don’t have any true desire to understand. As long as my autistic mannerisms never slap them in the face then why pay attention?

With this, you’ll never know my frustration. One believed trait of autism is that those individuals don’t understand social cues. But I’m here to tell you now, I know when I’m being made fun of. I know the exact moment you think I’m funny because of the way I walk and talk. I know the moment that you lose interest in anything I have to say. I know the moment you find me some kind of easy joke.

I’m autistic, not stupid.

Hannah is an easy target. Hannah is the weird kid who walks strangely, who talks with a bland voice, who has no social interest, but is happy to still tell you why Waterloo Road is a good television show years after it was any good at all. Hannah is the one who shows no emotion but then claps suddenly because the new Star Wars will be a good movie. She’s the one that doesn’t really care about her appearance or whether she looks like a boy or girl.

People love outliers like that. To know, no matter what, that we can always make fun of Hannah.

Yet, they think I don’t notice or that it doesn’t hurt. Banter is banter. But when everyone laughs at the way you are, from as far back as I can remember, then it becomes frustrating. It’s a reminder that no matter how much I pretend, I am the disabled one. I am the tragic one that is so easy to make fun of.

Neurotypicals will never truly understand the extent of that confusion. People with autism have definitive traits of talking about subjects that only they want to, to do activities that only they care about, and to be selfish. But I find that it’s not autistic people that are selfish.

I try my hardest every day to consider other people’s opinion and to find what they do interesting. I try my hardest to be a good friend and good family. To know I have Asperger’s is to be reminded daily that your existence is nothing but a mere inconvenience for other people. I always try and dumb down my traits, to be normal, because maybe then people will take me seriously.

People think I make no effort, but I do nothing but cater to others. There’s always that voice that tells me I’m being annoying, I’m not considerate enough, I’m not being a good enough friend. All due to my autism. And no matter how much I try to overcome my traits to be more considerate, no matter how much I put myself out for others, I will always be the same archetype. I’m the socially inept one. I’m the bitch. But ultimately, I am the selfish one.

Yet, people who read this will try and disagree. They’ll say that’s not what they thought of me or they would never think any of these things to be true. But I don’t believe that to be true. Not really.

Because in the end, you don’t understand.

Having Asperger’s is frightening. To not understand anything and to struggle with the most menial tasks, and to know that other people either find it funny or frustrating. To know that other people have no intention of indulging my interests but I must always indulge theirs.

A favourite is how guilty can we make Hannah feel for things she’s not aware of, even as we pile shit on top of her. I’ll always be the rude one, the blunt one. I’m always the one that hurts other people’s feelings. I mind my p’s and q’s with the knowledge that people will use my autistic behaviour against me. And they do.

And when you hear that exact accusation from someone who you’ve always made the effort for, someone that you’ve always bent backwards for, it’s not a good feeling.

Yes, I suppose these are all universal feelings. But when I say this is a common occurrence, it’s pretty much every time I talk to anyone. Or even look at anyone. To question how you sit, how you eat, what your expression is. To question your whole existence because that voice reminds you that you are disabled and no matter how hard you try, you are odd.

Then I hear the same platitudes- “Does it matter if you’re weird?”

Well, yes. It does. Being weird is not a hindrance, but to feel that you never connect with anyone, that’s the worst feeling. There are only two people I have truly connected with in my entire life and they are my brothers, who are also disabled. Yet, everyone wants to be understood, to feel like someone knows them and accepts them. I don’t feel like I understand myself half the time, so to expect that of someone else would be unfair, in some respects.

I see other people in relationships or in friendships and I like what I see. So I imitate it but it’s not the same. Perhaps this is where I upset someone, but if we’re friends, most of my behaviour is probably standard behaviour I believe to be worthy of a friend. When I imitate others, then for a second, they forget I am disabled.

And I guess in most ways, this is where the fine line is drawn. I can dress myself, talk to others, and study at university. So people forget just how disabled I actually am. But that is a pretence. What you see is all a pretence. It becomes hard to upkeep, so when people see a glimpse of how autistic I am, it is either a joke or it bothers them.

I don’t want to be funny. I’m not trying to be funny. I don’t want to be laughed at for something I cannot control. And I definitely do not want to be blamed for my autistic behaviour. This is where the crux of the argument is, where people really do not understand. To most, autism is a hypothetical situation. Even if you have autistic children or friends. You don’t really understand what is happening- how they think and feel.

Although it may sound as if I’m asking you to understand here, it’s more an expression that I know you don’t. And that’s okay, because I now know that asking that much is quite impossible. People won’t understand and so, it’s really whether you accept the way I am. Sometimes that’s still not enough.

 

 

Thirteen Years

I offered to do a speech the other day at Russell’s Hall Hospital for medical professionals and students. The whole premise was that my mother and I stood there and talked about our lives as carers. A few topics were covered, including general statistics, my brothers, our family, mental health, hospital and local services, and our finances.

Now that I look back on it, I realised, perhaps, that I should write about it also. People tell me it’s enlightening and that I “did so well; you should be proud”- all the usual praise that people feel the need to give you, but that is not why I’m doing this. It’s for my own satisfaction and for the understanding of others. In a way, it’s a very cheap, public therapy session.

So, we started with the usual national statistics of carers across the UK. However, in this case, national statistics aren’t of interest to anybody but I’m going to list them anyway for your own education.

There are over seven million carers in the UK alone, which would equate to one in ten. Three in five people will be carers at some point in their lives in any capacity, even if they do not realise they are. 42% are men and 55% are female. In 2010, the BBC found there was an average of 700,000 young carers in the UK. Around 68% of them had been bullied at some point in their lives. Only half of them feel that another person or adult understands their home life. Moreover, an average of 48 days of school will be missed a year to care for someone at home. This comes from a lack of services that fund young carers, especially part the age of eighteen, shown in 79% of carers who will not leave home due to a lack of support for the person they care for.

In these points alone, I can already understand and relate to all of these points. There were times when I felt I could have been bullied but luckily, I’m not easy to bully. I tend to argue back or just outright ignore what someone is saying to me. So, I’d say bullying was not something I encountered frequently but they tried. As for days missed at school, well, it was never that great once I got to sixth form but that was due to my mental health rather than my caring role. But I’m one of the lucky ones. I can leave home and live my own life. To a certain extent.

In life, there is generally one pivotal moment that changed your life. For some people my age, I suppose they still have a lifetime to have that moment. I had mine when I was six.

That day I was sitting in school and I was told my mother went into labour. That moment changed my life in dramatic proportions that only those who have been in that situation can understand. From the moment they were born to the end of their/my life, my whole existence will always revolve around them.

It was like having children when I never had one nor agreed to care for one.

That one pivotal moment comes with two names- Harry and Thomas. When people say the whole world doesn’t revolve around one person, that’s how it feels when it comes to my younger brothers. My world will always revolve around them, as long as they’re on this earth.

If my mother hasn’t already told you the story ten times, my brothers were born at 25 weeks old and as she puts it, only one week after the abortion limit. They could fit each of them in the palm of your hand, they were so small. But I don’t remember any of this. Perhaps it was my age and my inability to process the situation, or I just didn’t care, but almost a year’s worth of hospital visits didn’t stick in my memory.

I remember my grandparents taking me to see them, making me scrub my hands before going to see my brothers. I remember a girl at school whose brother had been born at the same time. He went home straight away and he was fine. I had to stand and look at my brothers in a plastic box. If I wanted to touch them- I couldn’t hold them- I had to put my hand through the holes in the incubator with the severe supervision of my parents.

Whenever I went to the hospital, I hardly spent time with my brothers. There was no connection there. I was left to talk to the nurses, colour books quietly in the hallway, or read the next instalment of the Narnia Chronicles. No playing, no talking, no holding my own two brothers.

Once they were home, I was allowed to hold them but they had oxygen tanks, which meant I could only hold them a certain way and certainly no carrying. There were wires everywhere and tanks nearly the same size as me. Imagine hauling them with you wherever we went. We didn’t go anywhere. People took their kids and babies to the park, or family days out, or baby groups. We kept my brothers in moulded blue chairs to hold them still, while they stared at you over their oxygen wires, their tanks always behind them.

But somehow that never daunted me. I was an only child for years so I guess I thought this was a new normality of life. I hadn’t known any different. Then one day, the reality of what other people thought became obvious. You know how primary school goes. I had an argument with someone about something petty, as kids do, and as I turned to leave, he said something about my brothers being retarded. Safe to say, he was on the floor in the next few seconds.

But you can’t go through life reacting that way to the stares, and the comments, and the evident disgust.

You can’t be embarrassed when your brother smacks his head off the floor in the supermarket when he doesn’t understand what’s going on. Or when they can’t sit still at a meal in a restaurant. You’re not allowed to let people see that you’re tired and embarrassed. Of course, you become resilient to other people’s opinions and that you couldn’t care less. But that takes a few years.

While everyone else is going out with their brothers and sisters, playing games, going on holidays, and whatever else people seem to do, there is no bonding in the same way. I washed my brothers, clothed them, changed their nappies, fed them, put them to bed, and gave them medication. That was how we bonded.

There was no talking or understanding. I sat with them while they stared at the television, since they couldn’t move or communicate. Imagine growing up hearing people spend time with their families.

“My brother is coming back and we’re going to the cinema.”

“My brother is going to prom tonight.”

“I just went camping with my brother.”

Well, I just listened to the Moana soundtrack at home with mine for the umpteenth time. We will never have a normal sibling relationship and thirteen years later, I am beginning to grieve that loss. They most likely will not marry nor have children; I will never be an aunt. I have brothers but I won’t have that relationship- not a normal one.

And then we come back to the mental health aspect. My mother attributes it to my brother’s being born but there is so much more than that. I’m not the only person in our house who has had issues with their mental health. In fact, both of my parents have struggled, especially my dad. Men always struggle more with their mental health and he was the last to be asked for support. Between school, work, caring, my brothers, and my parent’s own issues, I would say it wasn’t as clear-cut as my brother’s being born.

It’s not as simple as our family being ‘strong’, or ‘inspirational’, or ‘amazing’. You get that so often but how can you do anything else other than get on with your life? What were we meant to do? Leave them? Neglect them? Give them to care? Those were not options and it is how it is. It’s not a matter of being strong.

I’ve mentioned my mental health before and I’m not for skirting around the issue. People should discuss it more. Perhaps then, it may become less taboo in everyday conversation. We all have issues. Get over it.

But again, I can always pinpoint the time that I got f***ed over. One night, on the same week that we had returned from our first holiday in America, in the chocolate aisle of Sainsbury’s. I tried to tell my mom and I ended up crying for two hours before going back downstairs to tell her. I spent the next week off.

It took all of my courage to tell my friends and I got nothing in return. How can you be depressed when you just came back from Disney World? So I only ended up discussing it with two of my friends. Years later, I get people telling me about their own mental health now they’re in university and I tend to ignore them. They want me to sympathise and for me to give them advice, but where were they when I needed them? Nowhere. Amazing. And the best one of all- “Why didn’t you talk to me?” Because my own friends made it quite clear they weren’t interested. Nobody wants to invite the downer to the party.

My teachers labelled me as lazy and ‘just not clever enough for A-Level’. It’s okay, they tell me, it happens to a lot of people. Even when I was definitely aware of my depression and anxiety, it was always the same. From a student with impeccable attendance and grades to someone who was hardly ever there and barely scraping a pass, nobody stopped to think there was something wrong. Even when they were told.

Then above all of that, SURPRISE, I found out I had Asperger’s. I got my diagnosis, offered the few support services they had, and told I would always have reactive depression and ongoing anxiety issues. But good luck at university and with life in general.

But I guess my brothers still have something to do with it. Every holiday is a ‘holiday of a lifetime’. Everything they do is ‘the chance of a lifetime’ because we will always be aware that they will not live an expected life span. Every time they are given a great opportunity, I watch their reactions and there is always that thought that they will die.

I don’t know if you’ve ever experienced that feeling. I don’t know if you’ve ever seen your brothers sleeping and checked if their chest is moving, or gone to see if they’re still breathing when they wake up later than usual. I’ve been lying next to my brothers and them not respond. Have you experienced the feeling that your younger brother is lying beside you and you don’t know if they’re alive? Because I have.

I am their favourite person, their best friend, their protector, their guide, and ultimately, I will be the one to bury them.

When a sibling is born, have you ever wondered when they will die? Have you ever had to pick a career with your siblings in mind, knowing you’ll have to provide for them? To know that if they are still alive when your parents pass on, that you will be that one person to care for them. You have the responsibility and no matter how much I am told I don’t, whose else is it? How could I leave them to fend for themselves if my parents were no longer here? My life isn’t just for me and it never has been since the day they were born. I will always make most of my life choices with them in mind.

And somewhere in the audience at Russell’s Hall, I heard someone start crying. It might be surprising or upsetting to some, but this is what I find so bizarre. My brothers were born to my parents and as my siblings, yet other people seem more traumatised by their disability than we are. We have to comfort friends and family who are more upset by this fact. But we’re the ones who live with them and who care for them. How this works is beyond me.

Where I am going with this post, I don’t know. I guess if you’ve never been in this position, then you should count yourself lucky. If you have, then know there is someone who, at least partially, understands. My life has been good and my parents have made sure I am somewhat cared for. So always be thankful for what you have because you never know when it could end.

I will never know how long my brothers will be alive. Tomorrow, next week, or in ten years time. So I hold their hand, I cuddle them before they go to bed, and I buy them the new Disney toy they want because it may not be the relationship we wanted, but at least we have one. I am a carer and I always will be. At least they are alive and here. That’s all you could ask for.

Hollow Persistence

One thing that is certain about my Asperger’s Syndrome is that I will always have anxiety and reactive depression. It isn’t a particularly nice thought, but it’s one you have to become used to.

You see, I am an eternally sad human being.

People tell me I’m fine, that they see me and I have a conversation with them and I smile. And I won’t deny this. But it feels like the whole of me is hollow. If you tried to search for something deeper, you wouldn’t find it.

It’s a strange feeling to explain to someone who has never felt it and I don’t think you could ever understand if you haven’t. It’s like I’m drifting and yet at rock bottom at the same time. I can’t think. I can’t feel.

Perhaps I shouldn’t confess this but I rode to University the other day and I nearly crashed three times. I don’t know why. You might not believe me now but I am a perfectly capable driver. But there’s those moments were life drifts you by and you don’t even realise. Everything is a blur and the next thing you know, you’ve rear-ended a car (I have not done this). It was distressing to me when this happened because it has never happened before.

But what do you say to the doctors?

When it comes down to it, I don’t know if this hollow feeling is my Asperger’s or depression. The line is surprisingly thin. I’ve had issues with my mental health before so you’d think I’d know, yet feelings aren’t as clear cut as that.

It’s like floating in perpetual nothingness. It’s like Alice falling down the rabbit hole. As a whole, it’s dark and she keeps on falling and she can see things pass her by that she can’t reach. She wonders if she’ll ever reach the bottom and if she does, whether she’ll hurt herself. It is a terrible but relevant metaphor.

And in the end, you give advice that you very seldom follow because you’re lying in bed instead.

Mental Illness is not Fashionable

I’d like to think the title is pretty self-explanatory. I mean, I’ve seen this message spanning across all types of social media and I’m glad to see that people are able to receive this message. Yet I don’t think it’s being drilled in enough as it should be.

There are people still out there with the silly notion that having a mental illness will lead to something more, whether it be your personality, your creativity, or even your social life. That having a mental illness makes you interesting. People still don’t understand the debilitating effect mental illness can have on you in all aspects.

I don’t think it is understood that feeling of being up for hours trying to sleep. That feeling of not remembering when you last fell asleep without crying or worrying incessantly about every aspect of your life, even more so that time you may have said something embarrassing several years ago. Or the few hours’ sleep you do get, how exhausted you are when you wake. Is there anything smart about that?

Or how about when your relationships come under strain? You start to question whether any of them are your friends at all. When you want to spend all your time alone, why would you want to go out and meet with friends? Then if you do go out, you get overwhelmed, anxiety-ridden, and even have a panic attack. If you’re lucky, you have friends who understand and try to work through this with you. If you’re not, you have friends that grow frustrated, question whether there really is something wrong, forget, mock, or just don’t bother with you. Because that’s something that everyone wants, isn’t it?

There’s nothing romantic about panic attacks. There’s nothing romantic about cutting yourself to feel pain. There’s nothing romantic about sticking your fingers down your throat and feeling your throat burn for days after. And there is nothing romantic about wanting to die.

People can question you and most of all, you question yourself. Your whole existence is one big question mark. Your self-esteem is at your lowest and you’re too stupid, too fat, too annoying, too ugly. No caring, quirky, metaphorical white boy is there to turn around and be there for you always. John Green lied. And you’re lying to yourself.

There was nothing amazing about sitting in the bathroom, trying not to let people hear me cry for hours, or the long scratch marks across my legs and forearms. There was nothing glamorous about leaning over the toilet and emptying my stomach until it ached. There was nothing inspiring by the way I didn’t move for hours on end and my mind and emotions were a complete blank.

So it’s time to stop pretending you have something wrong with you, whether through attention or ignorance. People like to protest mental illness when it suits them and they don’t want to do their homework, but when it’s a real crippling illness, people suddenly aren’t as interested. I mean, who cares about people who are mentally disturbed? Right?

Be kinder to those who struggle and educate yourself. People with mental illness don’t need you ignoring them when they’re trying to ignore themselves. Mental illness is not a fashion accessory but a real issue. So starting treating it as such.