Crying at the wawa- on pain, courage and survival

So. Life update. Of sorts.

I don’t really want to air all my difficulties on such a public platform, but I think most of you can judge by the title of this blog, I haven’t been great. I’ve had a lot of exam stress, but that has largely been eclipsed by personal problems. I was very happy for a short amount of time, but slowly, gradually, almost imperceptibly, my life got a lot darker. It got to the point when I realised that instead of the usual amount of contentedness that one might get, I was unhappy all day, every day. It could be alleviated by seeing friends, but for the most part, my spirit had almost entirely faded. I was crying at some point every day.

I think it’s safe to say that this year, with the exception of February and March, has been the worst year of my life so far.

In fact, I think I’d still be speaking about this in the present tense if I hadn’t reached a kind of breaking point in the early hours of Sunday morning. I read something very distressing earlier in the evening and then had to pretend everything was normal at a meal out with my family. I sat up writing my diary, thinking myself into downward spirals, reading and rereading this source of my upset- all I will say is that this piece of writing essentially contained my worst fears realised. I stayed up till 2am and cried myself to sleep. Since then I’ve been existing in this strange state where I’m still upset about the events going on in my life, but from a distance. I’m not sure if it’s apathy or healing. Guess I’ll have to watch this space.

I’m not making a post about my particular problems though, because for one I’m sure literally no one would be interested, and beyond that, I’m not so self-absorbed that I can’t see that there are people dealing with so much worse than me and managing to restrain themselves from writing a blog post about it.

No, what I’m here to talk about today is slightly more universal. Today’s topic of choice is pain, of the emotional kind. Sadness. Frustration. Heartbreak. Grief. It’s slightly nonsensical and a little jumbled because I tried to put a load of ideas into one blog post, but here goes.

In this life, we all make a conscious effort to avoid pain. Understandably- it’s not fun. Going out of your way to experience pain is ludicrous.

Or is it?

The thing is, life is painful. It just is. No matter how safe you are, people you love will die, you will get your heart broken, bad things will keep on happening. If that’s going to happen when you play safe, why not reach for the stars? The thing is in our society, we associate pain with some kind of failure. But that’s just not right. Go after the career that you want in your heart, even if you don’t succeed, even if it requires a lot of pain. Tell the person you like how you feel- if they don’t feel the same, you’ll feel uncomfortable and rejected and it will hurt, no question. But if you play safe, if you don’t tell them- what do you gain? I have found that avoiding pain gets you nowhere in life. Of course, there is risk calculation, but if you spend your entire life living in this little bubble of trying to stay away from pain, you won’t experience anything at all.

I am going into a career that’s daily agenda is pain. Rejection after rejection, feelings of worthlessness and self-doubt, that’s the world I’m choosing. Beyond that, I’m not a half-assed kind of actor. When I perform, I’m not acting, I’m being, and if that means I’m in pain in a role, I’m experiencing that pain. Why do I do this to myself? Because I know- if I went down a painless route and found a nice stable bland job, I’d be pretty comfortable and content. But I don’t think I’d be happy, and I think I’d have a lot of regret. No pain, but no real gain either. The line in Fight Club that everyone quotes is “it’s only after we’ve lost everything are we free to do anything“, but the more relevant quote comes from earlier on in the same scene-“without pain, without sacrifice, we would have nothing.

The thing, beyond my own pain, that really sparked this idea in my head was a song by Chris Gethard feat Mal Blum, called ‘Crying at the Wawa‘. The main message of the song (and the main message of this very long-winded post) is that it’s okay to feel pain. One of my favourite lines from the song is “be happy, be sad, just don’t be ambivalent“, and it really resonated with me. I stated before that this year has been the hardest and worst year of my life. But thinking back over the last few years of my life has been enlightening. From the ages of about 13-15, I really hated my life and had a bit of a shit time of it. Then in year 11, so the end of 2013 and the majority of 2014, I had the best year of my life. Beyond exam stress, I was problem-free, self-confident, with many friends and not a care in the world. Since then, I’ve been living in what feels like a sleep-state. Not experiencing anything traumatisingly sad, but not really feeling very happy either. Content, I suppose, but not really truly happy.

This year I’ve been through a lot. My poor friends have had to sit through the bloody saga of my life, at their wits end and at a loss as to how to help me. My poor, fragile little heart is exhausted and world-weary and so, so heavy.

But I haven’t felt this alive in a long time. 

Previous to this year, I had written a decent dozen of poems that I could honestly say I was proud of. Since September, that number has grown to about 80.  I don’t think that’s a coincidence. If I gain nothing from this year, I will at least have a portfolio of poetry I can show to people, a piece of my history, a snapshot of my emotional state.

But the thing is, I will gain other things from this year. I already have. An appreciation of the little things in life, like seaside walks and dogs and smiling babies. A greater insight and acceptance of life and what happens in it that is beyond my control. A greater appreciation of my family and friends, who have been so supportive of me.  A kind of acceptance of myself, because I’m trying my best, and that’s all I can do. The comforting reassurance that when you hit rock bottom, the only way is up. I doubt this is rock bottom, but I believe that when I get there, I’ll be just fine. Because that’s what happens when you’re in pain- you buckle, you struggle, and you survive. You come out of the other side, maybe with a diminished spirit, but with a thicker skin, with the knowledge that if this problem comes around again, it will still hurt, but you’ll be a little better equipped to deal with it. 

Another set of lines I really like in this song is a small spoken word section. The female character is at this point crying in a supermarket and feeling very uncomfortable and embarrassed. The male speaker says to her,

“But there’s some real shit going on, and if the people in this wawa knew how much strength it took for you to get out of bed, let alone into a car, let alone make it here, they would applaud you for being the hero that you are. You’re feeling feelings, and that’s real, and maybe you’re feeling judged by these soft pretzel eaters, but sometimes you gotta cry in public, even if it makes a bunch of people at a wawa really uncomfortable.”

I could have avoided this pain, probably. If I went back in time and warned myself, I could have prevented this. Would I, if given the chance? As much as I hate my life right now, I don’t think I would. I’ve learnt far too much about myself and experienced far too many things to wish to replace it with a year of normalcy. This has been something of a character development year, I believe. I think in the long run I’d be worse off without it.

In reality, I think pain is quite good for me because it forces me to rework my entire life to try and make myself feel a little less awful. Case in point, I’m trying to sleep more, I’m writing on here more, I’m meditating, and I’m even going to do some exercise on Sunday. Wish me luck. 

My dad always talks about this poem he read about a beautiful weeping willow next to a sewage outlet. The point of the poem is that without the ugly stuff in life, we wouldn’t be able to appreciate all of the beautiful things. Joy. Love. Kindness. I happen to agree. I’m far from enjoying feeling the way I’m feeling.  But I’d rather live a life of extremes than sit in the middle, not experiencing any strong emotions at all, because then is life really worth living?

The way I always see it is like a Phoenix. If you’re reading this right now and you’re in pain, then it means you’re burning. Know that it’s okay to burn. It won’t last forever, and the pain is just a reminder that you’re alive. Or maybe you’re like me, in the ashes stage. The point where you feel a bit pointless, a bit used up, like you can’t really cry anymore, because the tissue of your heart is so scarred that the nerve endings are dead and you just can’t feel a thing but numbness. That’s ok at too. Because sometime-and I can’t promise when- but sometime both you and I are going to be born again.

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#RedInstead: Why I’m saying no to Autism Speaks

Okay, so I promise I will give you all a life update soon. I have plenty of ideas and not a lot of time but I’m planning to spend time writing a load of posts in advance. Don’t hold me to that, though. You know what I’m like in terms of posting!

First things first, though: why the makeover?

April is Autism Awarness month. This is around the time that Autism Speaks, the world’s most well-known autism charity, will start blazoning everything with the slogan: ‘Light It Up Blue’. Millions of well-meaning people will donate money to this charity, believing they are contributing to helping autistic people.

This is not the case.

In reality, Autism Speaks bears more resemblance to a hate group than anything else. Their primary objective is to find a cure for autism. Now, if you’ve ever met an autistic person, and said there were ways to alleviate some of the difficulties autism causes- sensory processing issues, communication difficulties and the like- I’m sure they’d love the opportunity to make their lives easier. However, that’s just not how autism works. Autism is a complex mental disability that affects multiple parts of a person’s brain. 

Let’s say you get headaches on a fairly regular basis. Imagine if someone told you they could find a cure for these headaches. You’d jump at the chance! But this cure comes at a cost: rewiring your entire brain. Essentially, rewriting your personality.

Don’t get me wrong, there are many parts of me I’d like to change- we all would- but not at the cost of removing parts of me. Not rewriting the way I see the world- because no matter how similar us neurotypicals (that’s non-autistic folk like me) are to each other, nobody sees the world in quite the same way I do.

The end goal for Autism Speaks is ultimately to find a modern equivalent of lobotomising autistic people. To create a ‘better’ society where people with different brain chemistry are slowly but surely wiped off the face of this planet.

What’s that I hear?

Oh, it’s the Nazis calling. They want their eugenics back.

Beyond this, Autism Speaks is generally a terrible charity. Only 4% of their profits go towards helping families and autistic people- the rest goes into campaigning and researching for a cure.  

 
Beyond this, their campaign videos such as ‘I am Autism’ portray autistic kids as ruining their parents’ lives. Don’t get me wrong, raising a child with a disability is difficult. Really difficult. But so is raising a transgender child, or a gay child, or a girl. Raising any child is difficult, because even if it faces no discrimination in it’s life, even if it does well in school and never gets bullied, even if you do the world’s best job at parenting, that child will still face serious problems and challenges in it’s life. If the thought of aborting a child solely for it’s gender or sexuality makes you feel ill, so should this.

Repeat after me, kids:

Autistic people are not a burden.

But Ellie, you still haven’t answered the question-

Just getting to it now. You know I love a good ramble.

The adult autistic community is stridently against Autism Speaks, for the reasons discussed above. This month, they have started a movement that aims to inform people about living with autism and to try to combat the misinformation Autism Speaks spreads. Instead of #LightItUpBlue, autistics and allies alike are opting for #RedInstead, wearing red to show their support of the autistic community and saying no to Autism Speaks and their message of fear and intolerance.

If you’re interested in learning more about autism or want to help a more honest and supportive charity, check out:

 National Autistic Society

Autistic Self Advocacy Network

Autism Women’s Network

If you want to find out more on Autism Speaks and to see their many, many faults be backed up by links, data and hard facts, don’t just take my word for it. Read thecaffeinatedautistic’s post (link opens in a new tab) for the most comprehensive, thorough study of Autism Speaks and their failings.

  
I will be wearing #RedInstead.

I will be standing with the autistic community, against hate and for acceptance.

Will you?