May 5, 2012
I haven’t written for ages…
Last Wednesday, they told me that I won’t get new lungs. The doctor was very cold and unfriendly. He only talked to me for a few minutes, like we just talked about something usual.
No word about how it will go on, no cheering up, no words of support. Just: we can’t help you, you will die. Bye.
No emotional reaction.
He said that a transplant would be a risk because of my unstable, weak bones and that I could die, so they give the lungs to somebody else.
When i said, that without a transplant I will die for sure, they told me, that they are not worried about me. They are worried about the organ. That the new lung would have been wasted if I die while or after the transplant.
I kind of expected this, but I was crying for 20 minutes anyways.
I started to manage contacts with other hospitals so I maybe could get a lung from another hospital, in another country.
Then I got up from bed although I was not allowed to. I took a shower. I hadn’t taken a shower for such a long time. It felt so good.
I practiced walking and the more I moved, the more I started to feel. The numbness was almost gone.
It was like the feet remembered what their Job is.
I knew, that my favorite singer Daddy Yankee was giving a concert not far from the hospital. I kmow him and the crew, so I called the Tourmanager and asked, if I could go there without a ticket, and that I need a place without crowd and fans because I am still very weak.
Everything was being organized and I left the hospital on my own responsibility for the consequences.
I spend 4 hours backstage with the crew and with Yankee. I needed to talk but Luis didn’t want to talk to me, so two crew members that are good friends of mine talked to me for a long time.
We had an endless conversation. About living and dying. About god. Hope. Giving up. Fight.
They were there for me and that helped me so much.
The concert was great and cheered me up a little.
When I was back in the hospital at nightway was still thinking but was moe emotionally stable than before.
I hoped Luis will take some time for me and talk to me. But he was rather watching TV and reading and when I sent him a message he started to Fight with me.
So I left him alone, sat in my bed and tried to handle the situation on my own without breaking down.
On Thursday my mother visted me. For her and the rest of the family all this is very hard. Luis still wasn’t talking to me about the situation.
On Friday, yesterday, he got mad because he didn’t know that I can walk again. But how should I have told him? K mentioned several times that I have to talk to him about important things. But he had better things to do.
I told him how much it hurts me, that he is leaving me alone when I need him the most. He said I was overreacting.
Later he said he couldn’t deal with the situation and said sorry, but he doesn’t understand that I can’t forget what happened just because he said sorry. I could forgive him that he didn’t want to talk. But not that he told me he is not talking to me because he wants to watch Tv. I can’t forgive him that he starts to fight with me to make me feel worst when im already down on my knees.
I decided, that I only want persons im my life, who are there for me also when I am really down and sick. Not only when they can have fun with me.
So Luis and I separated. I really hoped he would fight for me. And he would show me, that he wants to be with me even when my surviving chance is not very high.
But he didn’t. And I have no words for how hurt and sad i am.
He was the first person, that I really trusted. Uually i build walls, because when nobody knows my feelings, nobody can hurt me.
With Luis I didn’t have this fear that I could be hurt in my weakest moments. Unfortunately I didn’t have it.
Now I got the worst message of my life, and at the same time my hubby leaves me. And drops me like a piece of trash. Maybe my body is trash. But I am still a person. With feelings.
I could stand the lungs- news. But it’s very hard for me to stand all this at the same time. Knowing that I die- and being left alone, when I would need my man the most.
I will leave the hospital today. I want to see my family. My friends. My own bed. I want to decide about my days on my own.
I won’t give up, I will still try to get lungs somewhere else, even when the chances are very very low.
But I always have this incredible sadness inside my heart. Luis always promised. We would go through this together. He couldn’t imagine, that this would happen ever. He never thought I could die.
He can run away. Unfortunately, I cant. 😦