Hello everyone! Jonathan here. I’ve been thinking about a lot lately, so I thought that it is time to write a post and not only get something off my chest but to tell you something about why I even decided to sign in on this forum back in 2019. I am going to write another text to give an update about my AVM and “possible” treatments.
I just want to introduce myself (again) for those, who didn’t read my “New Member” post. My name is Jonathan. I am living in Germany and I am almost 18 years old, which is crazy when I look back at my first post when I wasn’t even 17. I am still in school and working hard for my graduation in about 1,5 years.
Now let me begin.
The last few months were quite tough as Covid-19 had a huge impact on my normal daily life, especially the school. Here in Germany, the schools have been closed for several months which got us, students, into online lessons. I didn’t have to complain anything about that, to be honest as I was still able to learn the information needed for the next year of school. The problems began when the schools opened back up, just for 2 days a week in my school. After talking with one of my doctors going to school would be a great risk for my health, not really because of the AVM (I am not sure if it even made a difference) but because of my other illnesses. I have a heart disease called “long-Qt-syndrome” (luckily not serious in my case I just feel it sometimes) explaining that syndrome would take me ages so I am going to skip that! But if you are interested google has a lot to tell you about that!
The other problem keeping me from going to school is the fact, that I’ve experienced a spontaneous pneumothorax in the summer of 2019 right after my trip to France
This makes me really sad at some point not being able to see my friends and study “normal”. I’d just like to experience a “normal day” again, it’s been quite some time. This sadness combined with my headaches that are getting worse right now is depressing me, sometimes more, sometimes less. That threw me back to the time before I registered on this forum and made my first post. It was by far the most terrible time I’ve ever had in my life and finding this forum was my rescue.
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In December 2017 I not only got my diagnosis, but we also moved out of our home into another city. I have 2 siblings, a brother, and a sister. My mother took my sister and me, and we moved out because of my father. He was a narcissist with an alcohol addiction that led him to not only be shouting at us daily and humiliating the whole family but be violent like for example pushing, gripping my arm till I had bruises and sometimes hitting me and throwing stuff at me. Those things got normal for me, as I really grew up with it. Having conflicts that took everyone’s sleep and escalating so the police had to come when my father drank so much he wouldn’t stop being violent. I remember broken doors and things flying through the living room when he was angry and there was no way we could’ have calmed him down.
We left and with that his alcohol addiction got worse… he was lonely. Only my brother, that was already 18 back then stayed. It only took my father a year to make my brother leave too. My father ended up living in a 330 m² house all alone, lonely and without the stability, a family gives which a narcissist needs so much. He couldn’t live on his one. He never cleaned the rooms he was living in, every plate was just standing around rotting. I visited him sometimes and everything got worse and worse. When my grandma (my father’s mother) got sick he got so depressed he stopped working. Everything was too much for him, he couldn’t handle anything anymore and we couldn’t help him. So he helped himself with alcohol, drinking bottle after bottle and hiding them when my sister and I visited him so we wouldn’t notice. He didn’t drink when we were there, it was such a wonderful event for him that he was friendly like never before. A loving father. My diagnosis destroyed him even more. Knowing that his child that he secretly loved is very ill gave him the rest. The second half of 2018 was the best year I’ve ever had in terms of my relationship with my father. We went on trips like hiking and so on… things you do with your son and it was great. He was friendly we talked about so much stuff, also about my AVM and what we are going to do in terms of seeing doctors and so on… Every time I started that topic I saw my father’s face go depressed. An expression I will never forget. He was crying a lot of times when we were talking about that.
In December of 2018, it was morning and Saturday I believe. I was sitting having breakfast and my mother came into my room (we were still living in a little apartment in another city) and she was crying. I instantly had a bad feeling as I knew my grandma was in a very bad condition. But it wasn’t my grandma who died, it was my father. After driving around drunken as he did a lot of times he came home and was still sitting in the car. He died there from internal bleeding (I couldn’t find out where it was located exactly) Of course he died because of his massive alcohol addiction.
Just a few days earlier I went to the birthday party of a friend of mine that was living not far from my father, so I thought I could quickly visit him and look after his mobile phone that had broken. I found him sitting in my grandma’s living room with a heater, that was heating the room up and it was unbelievably hot. He was wearing very old clothes as he wasn’t washing his clothes very often. Everywhere around him was trash and he was shaking like crazy even though he was sitting… withdrawal symptom of his addiction and he had bruises all over his body. The glass door was broken because he had fallen through it when he was drunk. He was hurt and clearly sick. I wanted to call a doctor but I knew that he would never accept that and you can not force someone to go to the hospital if he is not unresponsive. I knew I had no chance and just 2 days later he died…
I can not tell you, how many times I thought to myself “what if you would have called an ambulance… maybe he would have gone to the hospital… maybe it wouldn’t be like all the other times he didn’t accept our help” I made myself responsible for his death because I thought that I could and should have changed something. I lost something there, a part of me. I had a good relationship with my father for just half of the year. 16 years of conflicts, humiliation, shouting, violence, crying, and thinking about how to leave my home to be free from all that… and then I finally had the father I’ve wished for, so many times, someone that was friendly, listening, helping, and doing stuff with me without trouble on every trip. And I was happy. And then I lost that all of a sudden. A boy grateful to have some good experiences with his father and I couldn’t get the chance to have more. But instead, I was left “only” with my mother, my brother, and my sister, as my last remaining grandma died a few months later.
Now I want to thank everyone back then, when I wrote my first message on this forum, for replying to it, giving me some hope and somehow an “open ear” (if you understand what I mean). Thank you for taking the time to read and reply and give me advice about health and so much more. It really made a difference and I wanted to take the chance and explain that again!
Sorry for this long text, I just wrote everything I wanted to get rid of and tell you something about myself and my past which actually led me to write my introduction on this forum as my AVM wasn’t the only thing that prompted me to register.
I wish you guys out there all the luck and happiness possible. Stay safe and healthy.
Jonathan
