Thoughts I wanted to get off my chest (corona and something about my past)

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.
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.




Wow. You’ve had a really difficult time and I’m not sure what to say but saying nothing won’t help at all, so I’ll try to say something.
Everything you say makes perfect sense – especially how you feel about it.

I do think you should find out about bereavement counselling. It may seem strange but I do think you’ve been through a lot and you should be open to that. The other thing to offer is that there are other people out there who’ve gone through similar troubles. My step-brother passed away at about the same time as I got my AVM diagnosis. My brother-in-law took his own life in a similar circumstance to your dad. One of my work colleagues took his own life recently, seemingly from pressure at work, perhaps finances and so on.

In regard to the latter (my work colleague) he left work while I was away on holiday last year and I came back to work to find him missing. I sent him a card to offer support and if he ever needed to chat, that I was there. Indeed, he was a neighbour and was most kind in the amount of times he would give me a lift to work when I was unable to drive because of my AVM. He thanked me for the offer of support but I never pressed him to take it up. He came back to work a couple of months after taking a break but he works in our other office, so I did not see him everyday. Others told me he seemed quite down and not very open. I chatted with him on one occasion but we only joked about things and didn’t get into any useful conversation about how he was. And then, not many weeks after returning to work, he took his own life. In the same way as you, I questioned whether I had done the right things, pushed him into a more difficult conversation and tried to talk about how he was, whether the joke we had shared had perhaps been taken badly, and so on. But I believe the truth is that there are so many things afflicting a person in that state that you can’t take responsibility for the actions that another adult takes. There will have been many things going on, not just your part of the story. As I always say to people when choosing what treatment to have for their AVM (or choosing not to have it) we have to make decisions at the time based on the limited information we have and it serves no purpose to revisit that afterwards. At the time, we could not tell whether doing one thing or the other would turn out best and we chose one route. There is nothing to say that taking a different approach would have worked any better or would have actually made things worse or more quickly.

So, take some heart that you did your best. You had an amazing little time with him which I would celebrate but it is not your fault that he died at all. To get him out of the hole he was in would have taken a lot of time. Spending good time with him recently may have been helping but he was just in very, very deep.

Hope something here helps. Look into bereavement counselling. When my brother in law took his life, it was important and helpful for his children (similar age to you) to get some support because they went through much the same worries as you. It takes a long time but they are doing a lot better.

Lots of love,


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I recall your posts sometime ago as being amazingly poised for a young man with an AVM diagnosis, and very matter of fact. You have been through a great deal in both your personal health challenges and being so involved in shared challenges with your dad.

I have a fair bit of experience involved in situations involving families and addictions, they are all complex and always leave people wondering “what if” no matter what occurs. As a young man you did far more than most would in supporting him, that is often the only means of help we have available, supporting and caring. This is often so challenging that it becomes impossible, your effort were amazing.

I agree with Richard whole heartedly, celebrate the positive times, and it was not your fault. Seek the assistance available, take care, John.


(sorry for spelling mistakes and the strange grammar. My Smartphone keeps changing sind words.)

Wow thank you for your Message and the Story and advices. I am going to try to Look it the was you Said. Being Happy and grateful for that little time. Seeing him Smile and Not be angry about Something.

He was very grateful for the opportunity to have some time with me and my sister when we we’re living in another city. I try to remember that face of pure happiness Not the one shortly before His death when He already seemed “defeatet” and “broken”.

Thank you very much it really helps. Experience and knowledge are probably one of the Most important Things I am recieving thanks to you and Others. You and the Rest messaging me in my introduction were so important for me. Joint this Forum is one of the best Things ever happened to my Life and In am grateful for that.

Thank you for your Help when I was depresser Back then and now.

I Wish you all the best

Hey, thank you for your Kind Message. You two are right. I try to Look at it in a different way. Positive Not negative keeping the thought “what If I had done this or that”.

I am keeping the Angel He used to Carry around as a Symbol for him and the good Times we had. Also thank you for Reading this whole Ton of text I’ve written in my First Post and this Post… that probably Tool some time.

Thank you for the advice. It really Made and still Makes a huge difference to ne Back then. I learned a Lot about how to stay AS healthy as possible and about treatments and so on…

But also so much about emotions and how to See Things the best was possible.

Thank you very much


You’ve got a lot going on, so life is going to be tougher for you than it is for your friends. That may not be exactly fair but it doesn’t mean that you should ever give up.

This coronavirus thing is going to go on longer than any of us want. (I think it is important to set a time frame in the mind when dealing with this sort of thing and I have decided for myself that it will be less of a threat for some reason by June next year. That’s the limit I’m putting on it in my own mind, whether to do with us finding and delivering a vaccine or whatever). Even if the current restrictions run through to June next year, for most of us, that won’t be a long time, really. It is something we can get through and there will be plenty of freer life ahead of us to enjoy more fully once we are out the other side. My mother is taking a dimmer view because she doesn’t think she’ll necessarily make it through 11 months, but then she is “old” (she’s not “really old” and I think she is exaggerating her risk). But for most of us, what difference will a year make? Not too much.

So, stay positive. While we may not be able to do as much as we would like, it will pass and I’m quite sure that while 2020 might be a bit of a write-off of a year, there will have been worse years in the history of man. Other generations have gone through worse than us.

Stay strong. I think you’re doing remarkably. Do look into some bereavement support and/or mental health support in your town or city.

Very best wishes,


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Seenie here, Jonathan, from ModSupport and Admin.

We’re so glad that you found this club that nobody really wants to belong to. We are here to listen and to help where we can. But we can’t listen or respond if you don’t post! So keep on writing, Jonathan!

I have a question: are you a native English speaker living in Germany, or is your English just very, very good? :slightly_smiling_face:

All the best to you

Seenie from ModSupport and Admin

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Hello Seenie,
well, thank you very much for the compliment haha! I am actually not a native English speaker. English is one of my favorite subjects in school, which is why I am taking “English advanced” lessons after the summer holiday. I’ve always been very interested in other languages. That led me to speak English outside of school and I’ve been able to travel to England for 5 days in 2018 which was a great experience.

Oh, and reading posts on this website also helps me significantly, there is so much vocabulary for me to learn and improve further.

Thank you for your kind message, I appreciate it.

Stay happy and healthy


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I been doing some reading on here & posting to some things that I have an idea about - GL Man, nothing but prayer for you & us all. You def seem like one sharp 18 year old - shoot, sharper than any around me - that’s for sure. LoL

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