Talking to God is sometimes really hard. Once I heard a question if God listens to all prayers people have. The answer was yes, but He says no for some of them…
The most difficult for me is to have faith, a real faith that God leads me the way which is good for me. It is because I thought that I know what the best for me is and now I should believe in something what is completely different from what I have ever known. I was told that I have been losing a lot just fighting with God about this, not letting Him to lead me..
Now, when I am worse again, I became somehow fully or in different way aware of the fact that I really CANNOT be cured. This means nothing can change this. However, this does not mean that I stopped hoping for a cure.
I am just trying to explain what I have been going through. It is obvious that spinal cord injury changes completely my life and also life of the people who I live with. I know, that the fact I am a survivor is important and that I have to try to live my life, but I agree that to live a really enjoyable life is utopia in my case and I would say it is the same also in all other cases of people who survived.
When I say this to the people who are around me, they mostly think I am just depressed and I should take pills as I have not accepted my condition yet. They say that despite the fact I have to use the wheelchair and the fact my illness is incurable, I can do anything what I want.
If this was true, I would be riding a horse with my daughter, doing jogging with my friends or just spending time in much more active way. This would be really great.
Most people feel helpless when facing with the consequence of spinal cord injury and the activate a self defence mechanism. The real consequences of spinal cord injury are not something what we talk about. Not even in public. We cannot use our bodies independently which makes us feel uncomfortable and embarrassed. So, we try to hide what we can. I think most of us do that for many reasons and more or less unconsciously. We do not want people to feel sorry for us and we do not want to hear all the “empty” phrases that could diminish.
However, this is spontaneous human reaction. All who see us and “love us” are very sorry for what happened. All in all, I can identify with attitude.
On the other hand it is important that being paralysed and living with something incurable is not fun and it is also not nice.
I do not want people to feel sorry for me, but on the other side, my spinal cord injury is visible to anybody, I cannot hide it somewhere and just say that not much has been changed.
I can challenge my limits and show the others that I am strong, but it is actually hypocrisy. I have seen many paralyzed people really exhausted and frustrated from their situation who have been trying to pretend that everything is ok. But in the end there was a while in which they had to confess that they have been doing that because of their families, friends or other close people as they cannot let them see that they feel bad and that they are not happy. They think they have to give example all the time, especially if they have children. They want the children to be proud of them and they want them to believe that they are really strong as they do not want them to be worried.
Therefore, they put a mask on of the spinal cord injury every morning. But this is just a mask…
All of them… me as well… we would like to take this mask off. I also confess to the fact that I would really like to take it off, smile fully and make all my dreams come true. However, more I would like to see the people who I really love to be happy and not see them suffer for the consequences of my stage.