++ I will be really clear in pointing this out; DO NOT PITY ME! This is not about boo hoo poor me but about how my life and identity have been affected of what happened to me. It's about understanding and inclusion. If you want a recap of what's "wrong" with me look at the very bottom of this post.++
I often think about how much easier death would be than living in this constant pain. Than living captured in a broken body, with dreams and plans and a future snuffed out as easily as a candle. Abandoned by hope.
But while living is harder, to freely give up the only chance to it is a kind of cowardice that is completely out of my character. Courage is, in my book, one of the most important virtues one can possess, and in my case this means the courage to move on, to be happy, despite the heavy pile of rubble life has dumped on top of me.
Despite the isolation and the desolate road that I have to walk alone.
This is how I spend most of my days. No it is not cozy to be at home all of the time. It is not nice to not be able to work. It's like being imprisoned.
I do have better support than many; two committed doctors, a dedicated psychologist and supportive family and friends.
And I do have something else that is extremely important to me. Something which defines the outlines and heart of my identity and my person in a way that not even my ever-present tormentors can impose upon; goth.
I belong to the goth subculture (which, yes, is it's own culture not only a way of dressing), and the joy and powerful happiness it brings with it, is one thing that gives me the strength to keep going.
And here's where we're going to start today's topic, which will be about being goth and disabled within the goth subculture.
As I mentioned in Part 1, these are my own reflections and experiences. Being disabled or chronically ill (see difference in Part 1) is never a homogeneous thing; the same illness or disability can look different between two individuals. When it comes to most chronic illnesses it's often a spectrum as to how serious the illness is. So don't judge anybody from another person's story.
There are several struggles that come with being disabled within the goth subculture.
Perhaps the hardest, is that you are so completely limited in participating in the physical community. I can imagine that there are those who are too ill to ever go out and be a part of it all, and my heart truly bleeds for you, not out of pity, but out of understanding the loneliness that you must feel.
It's hard for me to describe the goth scene where I live, because I know it mostly from online interactions, both with people who are goth and who are "only" alternative. When it comes to music most events inclined towards the alternative scene plays either metal, which I truly, madly, deeply hate, or plip-plop (EBM, etc...) which I don't hate but most of it is too pop and non-dark for my tastes.
And, mostly from when I have been out, there has been a huge inclination of topics revolving around the worship of certain internet "celebrities", rather than focusing the subculture in itself. I find this absolutely daunting and an attribute that I have always associated with the mainstream rather than subcultures. It all comes down to if you know a certain person, and your level of being accepted is determined due to how close your friendship with that person is.
I don't think I've ever experienced this problem online or when being in smaller groups of alternative people. Whether it's people who have a hundred thousand or ten followers on Instagram, everyone is super-friendly in the virtual world.
So to the issue where this is related to being disabled.
When you are chronically ill you have to carefully plan for the distribution of your energy for every task, fun or not fun, that you put on your daily schedule. Different doings require different amounts of energy, and the drain afterwards is therefore of different magnitude. You can look up the Spoon Theory if you want an easy explanation to how this works.
The absolutely, most exhausting thing for me to do is to leave my apartment, and I rarely have the energy to even go to the grocery store, which is about five minutes a walk from where I live. The pain, the fatigue and the mental exhaustion afterwards is severe, to say the least.
So imagine going to a club, with thousands of impressions from the surroundings, or even a social gathering of a larger magnitude.
I think it might be time to explain where autism (which is NOT an illness) comes in.
The brain of someone with Asperger's syndrome/autism works in a different way than the brains of neurotypical people (called NT's). When it comes to social interactions, an NT brain passively take in the information and the participation in conversations, reading body language and emotions is processed instinctively. In a person with autism, however, this information is processed actively, through the "logical part" of the brain. There is not anything instinctive about it, but rather a conscious process, which can be extremely tiresome.
For me it can look something like: "This person is saying this, it is not meant to be interpreted literally, that word can mean different when that person says it, if I reply like this the person might misunderstand, I can't interpret that facial expression but regarding the situation it might mean this..." and so forth.
Yeah, you get the point. And in a group it gets even worse, because you don't only have to keep up with the conversation someone has with you personally, but also the interaction between the other people. I think you can imagine how confusing this is.
And add to that then, the background ruckus, the music and the unpredictable behaviour of high and drunk people in a club, which we autists take in unfiltered.
This can lead to meltdowns where, for instance, the autistic person shuts themselves into their own minds, starts "acting weird" (for instance rocking back and forth, crying, screaming, mumbling something over and over) and it can lead to severe panic attacks and/or aggressive behaviour.
Although attending such events will guarantee at least a week of complete bedrest for me, I sometimes think it's worth it, because I want to feel alive. I want to experience the full flair of the subculture that I belong to, and which is part of who I am.
But, with the conditions of the gatherings of alternative people, I simply rather prioritize my health. Because, on occasions where I don't like the music and when I don't want to talk about the self-proclaimed goth royalty or be friends with them because you simply have to know them, I don't think a week+ of bedrest is worth it.
There are people in my town, and in other places both in Sweden and other countries, who I would absolutely LOVE to meet and cultivate a closer friendship with, but it's incredibly hard to do so when you don't attend the gatherings where you get to meet them in person.
So my interactions with other goths, which I desperately crave like oxygen, and which I so much want to take to the next level are almost exclusively online.
The first problem with that, is that there are so many people to choose from to talk to, that it's hard to see who's genuine in their interest in the subculture and who's just dressing goth because it's trendy right now, and it's harder to compete with people who have more interesting looks.
Because social media is a very visual platform, and whether we want it or not we are more attracted to eye candy, the more beautiful the better, and it's easy to put interaction in the second place.
I've always had a hard time making friends because I either am too quiet and shy or I come on too strong. My friendliness often gets misinterpreted and I often get to hear (from others than the person themselves) that I'm to blunt. Or that I'm sarcastic or trying to put them on the spot because I ask them about deeper stuff that I actually want to know more about. But my interest doesn't show when I lack eye contact and speak in a monotonous manner. This is also due to Asperger's syndrome.
And some find me too weird (no I'm not saying this because it sounds edgy or attention-seeking, but because I really am one of those people who says things out of nowhere, totally irrelevant to what we were talking about) expecting you to know exactly what I'm talking about because of course you can read my mind) or that I'm simply not interesting enough, which is perfectly fine, but it gets tiresome to try and strike conversation with people who's not interested.
Typical for people with Asperger's syndrome is that we can't take a hint, so if you don't tell me that you find my attempts to befriend you annoying, I will not understand it.
And it's so hard to take the step from acquaintance to friend when the prospect of us meeting in real life can be challenging, and deeper discussions are so much harder to have in writing than in talking. And deeper discussions is in my opinion the foundation of friendship.
There's also a huge stigma around this millennial goth online exclusively community, which is something that makes me feel embarrassed and insufficient, as if I'm not really part of goth. Like I'm not really allowed to be because my lack of corporeal engagement is interpreted as lack of commitment.
So here the angst duplicates; not only am I not able to participate in something that I'm completely in love with, and in the same time being subjected to a certain judgement because of my partake in the subculture is limited to the virtual world.
I can imagine this can be the case for goths in smaller towns as well, but I live in a fairly big city (for Sweden at least) and I'm still looking through the window at something that I wish for. Something I want to commit to and be part of creating.
When I do meet people in real life, it's usually one on one or in smaller groups, preferably in my own home, because after a social gathering of any kind, my batteries are dangerously close to 0% and getting home afterwards is a serious problem.
You will most likely not even notice that I'm sick, that I'm in pain and that I have trouble remembering what we are talking about. I understand that it can be difficult for you, a healthy person, to understand that I actually have a disabling illness. Because in your eyes I look perfectly healthy, except for my crutch but so can it really be that bad?
Gothed up but equally sick.
As we talked about in part one of Goth and Disabled, it is hard to reconcile the picture of a decked up goth with an ill or disabled person (especially if the illness/disability is invisible). How easy it is to think that it can't be so bad, that the person might be exaggerating or so forth. And goths are not immune to this way of thinking, although we are generally more open minded to other people's differences than normies.
"I dont exist when you don't see me", is a great song but it's not a quote that is applicable to invisible, chronic illnesses. They are always there. The person is suffering, at this very moment, even if they don't talk about their illness or even if they look just fine.
I can only speak for myself, but I'd much rather talk about your experiences music, makeup, diy projects, books or how to decorate your home like the Addams family mansion than about my shitty life and eternal pain, which will, inevitably butt into the conversation anyway.
But again, you will most likely not even notice until it's intensity forces me to tell you. And I'm absolutely terrified that you will judge me as rude or a ridiculous diva when I get so exhausted that I have to lie down in the middle of our afternoon tea. Or that you will judge me when I take my strong painkillers.
Mankoski's pain scale illustrates chronic pain. I'm at 6-7 every day and some days worse.
One on one meetings with other goths is also a kind of contribution to keep the subculture alive, I suppose, but it's hard to even get to that stage when you are mostly homebound due to an unpredictable illness and are socially weird and incapable of knowing who is ok to invite over to your house and when it's appropriate to do so. Especially with guys in my case, because my friendliness might be taken for romantic or sexual interest.
And speaking of unpredictability... Cancelled plans is something else that chronically ill people are far too intimately acquainted with. And I almost dare say that we all are plagued by the excruciating shame for the disappointment we cause others to feel.
I imagine that this also has an impact on your participation in the subculture, because your circle of friends might be quite small and you will soon become notorious as the person who stands people up all of the time. And that is not a pleasant spot to be put in.
If you have a chronically ill person in your life, who constantly requires rain checks, please understand that this is not because of you! They still love you and you mean a lot to them, but their illness does not take birthdays or parties or dinners into consideration when it flares up. When this happens to me, what I most want to hear is that you understand, that we can see each other tomorrow or another day. Or that you can come over to my house and hang out with me there instead.
I often wonder what the person who is cancelled on is feeling, and what they would like me to say to show them that I still care about them. What are your thoughts on this? I'd love to hear them!
So the main points I wanted to make in this post is that physical participation in clubs, events etc can be challenging or impossible for goths with disabilities/chronic illnesses. A lot of us therefore try our best to participate through social media, and that can be a whole jungle to navigate, and sometimes stigmatized and cause a longing in us for something that we can't have. Taking the step from acquaintance to friend can be hard online as well, and perhaps even harder when it's more difficult to meet irl with a person who is so limited by their impairment.
I'd love to hear your thoughts on this, whether you're in the same situation or not, so please feel free to comment!
Part 3 will be about the representation, or lack thereof, and ableism within goth. :)
I hope you all have had a lovely holiday season and that you feel refreshed for the upcoming 2019. :)
A huge thanks to all of you who has taken your time to read, comment and share both this and the previous post! I'm humbled by the attention you have given me.
So, until next time, take care!
Sincerely from the dark abyss,
Tanja
++My disabilities++
I hurt everywhere. Every day, all the time. My body feels as if it is full of bruises. Even light pressure hurts. Some days are worse than other but the pain is ALWAYS there.
Yes that's possible.
I suffer from severe chronic fatigue which is, regardless popular belief, NOT the same as being tired from work or from a sleepless night. It's the kind of fatigue similar to when you have a bad flu. The kind where you can barely sit up most of the time. Sometimes for instance I can't wash my own hair, get up from a chair without help or hold my phone for more than a few minutes at a time.
Due to Asperger's syndrome, which is a different.different way of functioning, that becomes a disability when the person is interacting with the world of neurotypical people (NT's).
++My disabilities++
I hurt everywhere. Every day, all the time. My body feels as if it is full of bruises. Even light pressure hurts. Some days are worse than other but the pain is ALWAYS there.
Yes that's possible.
I suffer from severe chronic fatigue which is, regardless popular belief, NOT the same as being tired from work or from a sleepless night. It's the kind of fatigue similar to when you have a bad flu. The kind where you can barely sit up most of the time. Sometimes for instance I can't wash my own hair, get up from a chair without help or hold my phone for more than a few minutes at a time.
Due to Asperger's syndrome, which is a different.different way of functioning, that becomes a disability when the person is interacting with the world of neurotypical people (NT's).
