Lymphangiom and infects

Currently I’m sick again. It’s not that bad, just a little cold but for a chronic ill person like me, even a small cold can be heavy. Because my tumour, the lymphangiom has the bad habit to react to infects. When I get sick, the lymphangiom cells get inflamed, they might swell, fill with blood and pop open so I’m bleeding inwardly. My cysts are everywhere in my intestine, spleen and liver but gladly they’re small, so the bleeding isn’t dangerous. It’s just annoying because it makes me even less energetic, more exhausted and gives me light nauseous than usual.

When I was a kid, I often was called “lazy” for not going to school with “Just a little cold”. But it wasn’t “just a little cold”. It affects my whole body when I’m sick, and therfor need a longer time to recover.
This is something what I’m still thinking about considering my planned Hysterectomy. It is more risky than usual and I definietely will have  alonger recovery time. But I think, I can’t live a happy life if I keep my uterus.

So now I’m cuddled up here, pumped full of meds and trying to fight this cold.

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Giftedness

Yep, I am actually gifted. I taught myself reading and writing at age 3. In 2nd grade I told my music teacher that the piano “sounds wrong”. She sent me to an hearing test, where came out that I have an absolute hearing. According to the doctor, I can hear frequencies other people can’t hear. My music teacher tried everything to get me into special music class after school. But I was already exhausted from school but the biggest problem was, my parents couldn’t afford it. I remember how my music teacher was at our home talking to my parents to get me in this special music class. She asked me what instrument I wanted to learn and I pointed to the piano. She told me that she actually wanted to give me special education, just me.
Although I have dyscalculia, I was always the best in the class in maths. I couldn’t like it when my brain didn’t understand things I wanted to know. So one weekend I took my maths book and did as much exercises as I could. Of course then I was bored in school. My math teacher asked how far I calculated and when I showed her, she said: “But that’s stuff for the next grade! We won’t do this anymore.” She sighed and then asked: “What shall I do with you?” So I then was the only person in school that was allowed to do whatever the fuck I wanted. Usually I was learning english, writing poems and stories, drawing or listening music.
One day in english lesson, I asked our teacher: “Why are we doing this again? We just did it last week. We know this already!” Her response: “Yes, you know this. But not the rest of the class.” I was there thinking “Why are they so stupid?” Btw, I learned english in 4th grade in less than 6 months. I remember, we had a student from UK there and I thought “Hey a native english speaker I can practise my english with!” So I went to her and started chatting in english. She and my teacher were surprised. Not only was I talking in a language I just started to learn, but I, the most silent kid in class, just talked with a stranger!

I was constantly bored in school, because everything seemed so easy and I couldn’t understand why the other kids couldn’t pick up stuff as quick as I did. I wasn’t arrogant, it was just my reality. I was a kid that loved to learn new things. But everything I found interesting just flew to me. I never needed to learn stuff. I heard it one time, I got it. But I also had big problems. Subjects like history or physics were impossible for me to learn. My brain just can’t deal with numbers and works differently. Some things my brain just couldn’t get, no matter the effort I put into. And that was a huge problem for me, because I always was so eager to learn, so when I couldn’t learn something I got frustrated.

That was difficult to understand for my teachers. How can I be super on some subjects but so miserable in others? I was constantly pushed to learn the subjects I wasn’t good in. Because they thought I was “just lazy”. It was the only explanation for them. But since I got diagnosed with autism, I think, this is the reason. My brain just isn’t made for some stuff to get. I’m creative. I’m good in music, arts, writing and languages. My brain isn’t made for physics and chemistry. That doesn’t work. To be honest, I think every person is gifted. Everyone is differently wired and their brains work differently. I hate it when teachers push their students to learn something that definitely isn’t their strenght. Sometimes it doesn’t work like this. Instead of trying their poor brains to get something they’re won’t, try encouraging them to learn new stuff on subjects they’re good into. That gives them less frustration and helps them more for the future.

Auszug aus meiner Autobiografie

Hab es endlich mal wieder geschafft an meiner Autobiografie zu arbeiten und habe es gleich genutzt um mir mal was von der Seele zu schreiben, dass mich seit einiger Zeit beschäftigt. TW für häusliche Gewalt, Kindesmissbrauch, sexueller Missbrauch.

Wenn man mich früher fragte wie meine Kindheit gewesen ist, sagte ich immer, dass sie normal war. Doch jetzt nach Jahren wenn ich zurückblicke kann ich nur sagen, sie war ganz und gar nicht normal. Damals wusste ich es nicht besser. Ich hatte es als normal angesehen, ohne es wirklich zu hinterfragen.
Nicht nur das ich in der Schule gemobbt wurde weil ich „anders“ war, zu Hause war es auch nicht wirklich besser. An vieles erinnere ich mich nicht, was ich dem Trauma zuschreibe. Als junger erwachsener Mensch dachte ich es hängt mit den vielen Narkosen und Krankenhaus-Missbrauch zusammen, doch seit ich das in Therapie aufarbeite habe ich öfter Albträume. Ich habe leichte Flashbacks, Erinnerungsfetzen kommen hoch, die mir Angst machen. Dinge an die ich mich vorher schon erinnerte, waren mein alkoholisierter „Erzeuger“, der mich und meinen Bruder oft anschrie, uns mit Schlägen drohte oder damit uns in ein Kinderheim zu stecken. Psychischer Missbrauch vom Feinsten, den ich jahrzehntelang nicht realisiert hatte.
Doch nun erinnere ich mich auch an andere Dinge, die in mir Übelkeit erwecken. Eine Sache war, als meine Mutter Nachtschicht hatte. Wie ich schon erwähnte hatte ich als Kind oft Albträume. Ich hatte mir angewöhnt bei meinen Eltern, besser gesagt, bei meiner Mutter im Bett zu schlafen. Dieses Mal kroch ich auch wieder in Muttis Bett, obwohl sie nicht da war, weil ich mich dort geborgen fühlte. Mein Erzeuger schlief, als ich ins Bett kam. Ich versuchte einzuschlafen als ich plötzlich spürte wie er sich bewegte. Er fasste mir mit seiner Hand zwischen die Beine und rieb über meine Schlafanzughose. Ich war wie erstarrt, bewegte mich nicht, atmete nicht und hoffte er würde aufhören. Dies tat er nach ein paar Augenblicken auch und schien weiter zu schlafen. Schnell stieg ich aus dem Bette und ging zurück in mein Zimmer. Seit dieser Nacht, ging ich nie wieder zu meiner Mutter ins Bett.

Eine andere sehr erschreckende Situation war, dass mein Erzeuger immer dann auf die Toilette ging als ich badete. Er nahm sich immer eine Zeitung zum Lesen mit, trotzdem fühlte ich mich sehr unwohl dabei, was ich auch mal meiner Mutter sagte. Es war nichts ungewöhnliches in unserer Familie das Bad zu teilen und uns auch mal nackt zu sehen, doch diese Situationen bereiteten mir Unbehagen. Selbst als ich zu unterschiedlichen Zeiten baden ging, kam es vor und komischerweise nie wenn mein Bruder badete. Doch richtig schlecht wird mir wenn ich an eine Situation zurückdenke als ich 13 war. Er kam wie immer rein, setzte sich, guckte dann zu mir rüber, regelrecht musterte meinen Körper und sagte dann „Du brauchst ja auch bald einen BH.“ Mir wurde schlecht. Ich sagte nichts, versuchte mich unter dem Badeschaum zu verstecken und hoffte er würde bald gehen. Ich denke, ich brauche nicht zu erwähnen wie unangebracht und ekelerregend es ist als Vater so etwas zu seinem Kind zu sagen. Deshalb nenne ich ihn meinen Erzeuger. Er verdient das Wort Vater nicht.

Ob ich jemals sexuell von ihm missbraucht wurde weiß ich nicht. Ich kann mich nicht erinnern. Aber ich habe ein sehr ungutes Gefühl.

PS Ich bin morgen wieder bei meinem Therapeuten und werde das mal ansprechen wenn ich es schaffe. Es kostete mich schon ungemein Kraft es nur aufzuschreiben.

Why I’m scared before a gig (PTSD)

Another PTSD thing. So actually I have two different traumas. This one happened to me around 2008.

I wanted to go to see my favourite band HIM. It was my first gig ever and I didn’t want to go alone. So I asked in forum if anyone near to me was going too and if I might join them. Also I mentioned that I was disabled and would need some support.
So I met this girl, I can’t remember her name anymore, at the train station and we went together to the venue. Had to wait an hour or so before the gates opened. So it got more crowdy behind us until we were in the middle of a crowd. Again I mentioned my disability and asked if we could go to the side or let the fans run in first. She refused because she wanted to be in the first row. She told me “to run” when the gates open and I told her again that I was disabled and couldn’t run. Her response: “then just hobble!” I stared at her with open mouth. I couldn’t believe her ignorance! I tried to find a way out of the crowd, but on the ground were empty bottles that fans just had thrown away. Then the gates opened and the horror began. Fans started to run inside, I was pushed, stumbled a few meters before I fell over a fucking bottle and hit the ground. Fans kept running inside, were jumping over me, their feet hit the ground only centimeters away from my face. The only thought that was running through my mind was: “You’re going to die now.” Suddenly I was grabbed and carried to the side, someone helped me up and asked me something. I needed seconds to realize it was the security. I tried to sort my mind and replied to his question if I was okay with “I don’t know.” Maybe he hasn’t heard me or my voice broke, he asked me again. “I think so”. I said this time trying to sound like I mean it. With a last brief look at me, he said: “Then walk slowly.” And I stumbled inside, I found a seat, sat down and began shaking. My whole body was a shake. The security guy hasn’t really checked on me if I was injured. He didn’t even noticed how I had a shock. It seemed like he didn’t care about my safety at all.
I don’t remember anything from the gig anymore. I still have nightmares from this event and before every gig I attend to, I go through the same panic again. I feel sick to my stomach and shake.

Last gigs I wrote emails to the hall managers, asking for safety support, told them this story. From one I didn’t even got a reply. The other one was nice and promised to give me safe place, but when I was there, I felt like the security didn’t take me or my disability serious. I was stared at during the whole gig, saw how one of them talked to the guy at the backstage door that he should watch me and kick me from my place in case another wheelchair user would arrive. The other gig was in Helsinki, and it got so crowdy that I got a panic attack again. I couldn’t breathe, it was hot and felt like I would collaps. I couldn’t really sit because fans were standing on the bench, and standing myself caused me huge pain.

As much as I love going to gigs, I wish organizers and security people would be better educated about disabled people. They only think: disabled=wheelchair user. And that’s very problematic for those of us who don’t use a wheelchair, where you might not be able to tell their disability, and way too often they assume that “it can’t be that bad” or that I’m “not really severe disabled” because I’m a young punk guy with a cane.
Dear concert organizers and security guys, trust me when I say I need a safe place, away from crowd and a seat because I can’t stand for longer time. I’m in no way asking/trying to get “special VIP-treatment” or some shit. I just want to be able to actually enjoy a concert at a safe place!

To be honest, this situations made me question if I will go to a gig ever again. Because I don’t feel safe and I can’t deal with this ableistic shit no more.

Living with chronic pain

My therapist told me to try to visualize the chronic pain. Actually I should draw something, but I’m better in writing. One night I had this inspiration:

Living with chronic pain

Is like this annoying guy that is always there where you are. He follows you around everywhere, is looking over your shoulder, watching everything you do, is standing in your way, pokes your ribs to remind you, he’s still there.
All you want, is some time without him, to rest up, but nope, you turn around, he’s there. You open your eyes, he’s there.
He never leaves, no matter how often you tell him to do so, no matter how often you scream at him.
The chronic pain is always there and never leaves you alone.

That’s how it feels for me.

#ServiceDogForLuka

#ServiceDogForLuka

So I decided to make new pages only for the crowdfunding for the service dog. You can now follow, like and share on Facebook and Instagram! When I’ve reached the first goal, and have adopted a puppy, I will post regularly updates about our life and training there 🙂 I will post in german and english.

Service Dog For Luka (Facebook)

Service Dog For Luka (Instagram)

You still can doante here: Leetchi Crowdfunding and the text is now also in english, you must scroll down.

Thank you!
Luka