Title - Life

Ok. So now I am trying again. Apparently there are things that I am still not allowed to say, ways in which my mouth is still tied up. There is very little I can do about it. For various reasons. Right now. There is a time and there is a season. 

But I am really, really tired of all this hiding of things. This is where bad things happen. In the secrecy. Behind the facades. But I've had enough. Bring out the skeletons. Let them rattle and roll. And fall on the floor and crumble to dust. 

The last couple of years have indeed been very tough on me. But then again, that is hardly anything new to me, having had to deal with seriously bad stuff on various occasions in my life long before now. Yesterday I found out I am headed for a really long-term sick leave, some heavy duty rehabilitation programs and still, nobody knows the end result. Even the people close to me are now having some difficulty in handling the situation, after words like ''disability'' have started to be thrown about. But. Let us begin from the beginning.

You know about the SLE by know, I presume. And the things pertaining to that. The rheumatologist. The neurologist. The dermatologist. The opthalmologist. The ''god-only-knows-what-ist''. Yeah. An optician told me I needed glasses. Costing about 300 euros. I went to see the opthalmologist who said glasses would not help me, my eye sight was affected by the extreme dryness of my eyes. Hello, Sjögren's Syndrome. Eye drops in both eyes every hour if I am reading or doing something of that sorts. Not. Nice. Now add to the ever expanding group of profoundly befuddled professionals around me a neuro-psychiatrist and a regular one, a psychiatrist, I mean, and you might be starting to get an idea about what we're talking about here.

There is a lot of polemic around about the connection between immunological diseases and stress. Well. I now have a paper saying I have chronic, complicated PTSD. Post Traumatic Stress Disorder, that is. And one of the severest forms of depression. And a dissociative disorder. Man. I mean, every time I go see yet another specialist I seem to come out holding a paper stating yet another diagnosis. But if one looks a little closer into this web of weird and scary sounding words, it actually forms a not so strange a pattern after all.  

The PTSD was caused by some severely traumatizing events and periods in my both long-time and near past. Some of which could be considered debilitating all by themselves. Let alone all combined. And this is not some asking for pity deal here either. One of my ''caretaking personnel'' only recently told me that it seems the worst thing for me is to be seen ''asking for pity'' or any kind of leeway because of my ''issues'', and she was right. You have no idea how hard it is for me to write these things out here. Even if I can not write all that I would wish to. Not because I wish to censor my words, but because others are doing so. All I want is for things to be known as they are. 

And so the PTSD goes on to cause the Dissociation and then the Depression. And, in the opinion of many medicals and researchers, the Systemic Lupus and the complications around that. A circle. Like I said. A neat little circle with some cute little tentacles hanging off it. One that could be contested, of course, as far as the connection between the PTSD and SLE go but I for one do not doubt it for a second. 

But what causes the PTSD? Isn't it something soldiers get? Or people who've been in natural disasters? Yes and no. Traumatic stress is normal after any traumatic event. When it stops being normal is when it continues long after the trauma and starts to complicate and disturb your everyday life. And its not only soldiers who get it. People who've been abused in one way or another, either as children, in their youth or as adults, can get it. The longer the abuse lasted obviously contributes to the seriousness of the stage of your disorder. Mine is at the top end. People who've been robbed, mugged, raped or who have witnessed any of these, or someone being killed, are at risk. Natural disasters, car crashes, the list is endless. Some people are better equipped to deal with traumatic events, some less. Apparently due to my being exposed to both sexual and physical abuse as a child made me less able to deal with what happened during my adolescence and even now, as an adult. And here, let me make something clear lest there be no mistaking, my immediate family was never the cause of the abuse and are not to blame for it. If they could not help me it was because I hid everything from everyone. Already perfect at keeping up facades as a kid. A trait that I later perfected as an adult. You need to do what you need to do to survive.

And I understand. Some people find all this frightening. So many people have enough trouble dealing with people who have chronic, debilitating, even possibly fatal illnesses. They just do not want to see. It is so much easier to turn your head than have to deal with what is facing you, which, in fact, is nothing less than your own fragility and mortality. So add to that what is still one of the ultimate taboos of our society, mental disorders. Anything of that sort and people get freaked out. And yet, one in four people in my country is now or has at some point in their lives been on anti-depressants. What it all boils down to is ignorance. And that stems from the fact that people are too ashamed to come out and talk about these things. I know. I was. Not anymore. I know many people are now going to look at me and think, ''there goes the crazy lady''. But to hell with that. If you pardon my french.

So, I am going to pose a question to you now? Do you think a woman is weak if she ''allows'' herself to be abused in her relationship? Do you think domestic violence only happens to the under-educated, un-sophisticated, poor families. Think again. One in three women have been or are in one way or another abused in their past or current relationship. Happens to the ''best'' of the families. The educated as well as the illiterate. The rich and the poor. It can happen to anyone. It is so easy to close your eyes and think ''not-in-my-backyard'' or ''things like that do not happen to people like us''. They do. Abuse. Violence. Rape. They did.

No More Silence.

Disabled, they say. Applying for a disability benefit. And I absolutely hate any kind of benefit and having to apply for them, but applying for a disability is a whole new can of worms for me. So, now I am disabled. Does that mean like, forever? Will I ever get my life back, and if I do, what is my life? Right now, everything is stripped to the bare bones, the skeletons making their show and dance for their audience, but somehow, even though I know the statistics are against me, I think that one day I will have my life back from all of these diagnoses. What it will be like, I do not know, but I am on my way to find out.

Sometimes, when I think about life I get this strange feeling that I do not really know what life without all these problems would be like, I am so used to just surviving. And yet, I also hate being called a survivor. Because that would be just another way of my issues defining me for the future. I am the survivor of all that nasty stuff. No. I am many more things. And not all my life has been filled with pain and anguish. There has been beauty and joy for which I am grateful. And I keep believing there will be in the future. I have to. 


There it is. My skeletons for all the world to see. How you see me from now on I do not know, how I see myself from now on I do not know. It's a long journey ahead so I'll get going now, see you all soon but please, if I do not return your calls, it is not because I am being rude, as my memory and concentration are impaired, sometimes I simply do not remember. If I am unable to attend your social function, please, again, I am not being rude, I am just simply not able to, no matter how much I might want to. If I socialize for an hour I might have to sleep for two to let my body and mind recuperate. Trust me, I do not like it any more than you do. But this is my life, such as it is, for now. I have already had people do the disappearing act on me, and so be it, that just means that they will also not be in my life when things start clearing out. And I can also no longer keep around me people who do me harm, willingly or unwittingly. Some people have stuck it out, and I thank them for it. This is not easy, and according to my ''personnel'' it will get worse before it gets better but eventually,  it will get better.


One day.