I thought since some of you might don't know me from other social media I'll introduce myself a little better. :) Quite text-loaded, this post will be a plunge into my past and how I ended up being the person I am today; good and bad aspects alike.
My name is Tanja, but I'm pretty sure you've guessed that already. You can find me on Instagram under the name @ tanjagoodwine.
I'll put some pictures in between the text, just so you'll get some visual idea of me as well.
++ NOTE: I understand that the pics are off since the story is quite heavy and I don't look sick, but I really didn't want to put you through such a heavy story without some pictures, so please don't judge that I'm all made up although I'm telling you that I feel shit. ++
A lot of people don't like labels, but I do and I call myself a goth because it's a huge part of who I am, and plays a big part of my every day life. I'm doing what I can to establish the thought of goth as a culture and not a not a way of dressing in the minds of normies both online and in the physical reality.
My background has its roots in the academic world of science, with years and years of studies in biology, biotechnology, chemistry, medicine, physics and several other related subjects in the suitcase of my past.
I was opting for a career within the pharmaceutical research branch, and wanted to work with alternatives to animal testing on drugs and cosmetics.
A few years into uni I had my normie phase, where I was desperate to fit in, hoping that i could by some magical wave of a wand become the adult I was expected to be, and not the socially inadept weirdo that I've always been.
A confused me in my early twenties.
It was my worst identity crisis ever and I was absolutely miserable. (I did meet my best friends there though, and guess what? They have stood by me as I slowly re-transformed into myself again.)
This identity crisis made my mental issues that I've had since the years before my teens worse, and I began to question my identity and my worth to express my persona outwards. Somewhere along the way I discovered my true character within the goth subculture I found that I was on a path in life that didn't fit into the person I was. Drifting off during the lectures at uni, I found myself doodling eyes with creative makeup looks in my notebooks instead of taking notes.
And then, one day - literally over night - I found a new calling; I wanted to become a makeup artist.
Babybat.
So I started to watch YouTube makeup tutorials. This was way back in the day before they became as popular as they are today, and it was a lot harder to get information, but my soul was burning for the world that had opened before me.
A look I did loooong ago.
Purple hair me.
And I practiced and practiced, starting to publish pictures of my creative achievements, getting feedback and encouragement to continue, even from people that who I didn't even know. It was thrilling and exciting, and it felt that I was traveling up the lane leading to where I was supposed to go. My passion was a everlasting well and I yearned to grasp any knowledge and advancement, spending hours a day learning everything about techniques, eye shapes, skincare etc.
I worked with photographers and models and eventually I got a job at MAC, which was my dream job back then. My ambitions were sky-high, and half a year later I became manager for my own MAC counter, which was one of about seven in my country back then. I loved my job and I worked hard and worked a lot. Looking back now I can see that my work load was inhuman.
And it took its toll on me, although I didn't know why until years later.
What happened then is something that has changed my life forever.
I became mysteriously ill, which was most likely due to the high pressure at work combined with my mental unhealth.
It started with severe stomach aches, but I persisted, letting my doctors run test after test, convinced that they would find out what was wrong with me and be able to help me. Immersing myself in work I tried to simply ignore the illness although and pushed away the nagging feeling that something was seriously wrong. I had to take out more and more days of sick leave which put a deepening crack in my career.
Me at work.
In September 2015 I had a well deserved vacation and went to London with my husband (who was then my fiance). Unfortunately I got a really bad flu there and missed several days of the time there which bummed the hell out of me.
A few days after we got home the flu disappeared but the symptoms did not. You know that exhausted feeling when you awake in the morning and think "Fuck, I've got a flu"? I had started to feel like that every day, and started to get fever everyday - and I still do.
Every innervated part of my body hurt and the fatigue was crippling. So I went to the doctor and they found I had a strep infection and put me on antibiotics. But the symptoms still remained, so eventually I was sent to specialist in the throat/ears/sinus area.
He poked and prodded and then told me something that I wasn't at all prepared for.
"This is not an infection. You most likely have fibromyalgia," he said, and I was sent to another specialist to confirm.
It took nine month to get an appointment there, and I only got worse. And indeed, when I saw the doctor on that clinic they did confirm the fibromyalgia, but they also found that I had something far worse; ME.
ME stands for Myalgic Encephalomyelitis and is basically explained as an inflammation in the central nervous system (brain and spinal cord). Both fibromyalgia and ME are chronic and incurable, which means that I will have them for the rest of my life.
++ NOTE: Please don't give me advice on how to cure this, because there is no cure no matter how much I would want to, and I've tried almost everything already. I know people intend to be kind, and I do appreciate the support, but I've been through that a lot and it's tiresome when people I don't even know believe that they have a miracle cure that my doctor, a professor within these illnesses, can't help me. ++
Of course I was devastated, and it was so hard to understand, and even harder to accept that my career was over. That I wasn't even thirty and destined to be disabled. It was three years ago now that I fell ill and I wish I could say that I've grown used to it, but I don't think I ever will.
A positive, completely unexpected turn of events has actually come out of this illness though, and that is a discovery that psychologists and psychiatrists and an endless row of doctors who have crossed my path during my whole life have missed - I have Asperger's syndrome. But that story is a whole subject in its own so that will have to wait for another time. :)
So, today I'm bed- and homebound for about 85% of my time. What's struck me the most throughout this regression of health is that there are so many things we take for granted in our everyday lives. Things we don't give a second thought until they're suddenly lost to us. Shame is still heavy on my shoulders when I have to ask for help with basic tasks, but honestly, in the end I feel that this eye-opening experience is a positive thing. Of course I'm frustrated and bitter to not be able to do something as uncomplicated as cutting my own toenails, but missing these little things makes me appreciate what I do have more.
Me a couple of weeks ago. Here we go soccer-mum hairstyle...
Although I've mourned my body ever since this started, and been bitter about how unfair life can be, I've never pitied myself and I do not want the pity of others - just understanding.
Accepting that a fundamental chunk of my life, my future, has been swallowed in one brutal shark-attack has been hard, but I'm finally there and I no longer wallow in a past that I can't possibly change.
The future is still all I have and I'm not going to be wasted and constantly depressed about the obstacles that has been dropped in front of me. :)
Me a couple of days ago. :)
So that is basically my story, my background, in short terms. Please feel free ask me if there's anything you'd like to know. I'm very open about my illnesses and my life in general and I love to spread information about them, since they're unusual enough for people to never have heard about them. And even more so I'd love to interact with you guys! :)
If you've bothered to read this far, I thank you from the bottom of my heart!
I'm wishing you a lovely day and hope you are doing great!
Sincerely from the dark abyss,
Tanja
