Waiting for a Miracle

"Waiting for a miracle to come", wrote my favourite poet Leonard Cohen. You know the moments in life when you are too tired to wait, too tired to dream, too tired to hope? Then you also know that you do it anyway, because there is no choice.

I’m getting tired. Confused. Sad. Angry. Frustrated. Lost. Negative feelings I don’t like to feel as they are too consuming. Today I allow myself to cry and feel afraid and any feelings that keep appearing in my fragile, shattered body. Only, I cannot do it but few seconds at a time, otherwise they are too much. I’m not losing hope, I just can’t.

I have so much to say I simply cannot say a thing. The thoughts crumble over, they are as shattered and confused as I am. I cannot help wondering how it is that this happened again. You know, I used years and years to build a steady life from shattered pieces that used to be me. I worked hard. I did it. And suddenly, here I am again, collecting those pieces, deciding once again that this is my life and I’ll make most of it. Only, now that I know how it could be, how it was, I am – first time in my life – near a feeling called bitterness. Because, I had it all.

After years and years of fighting for my rights for decent life and help, I got it. I found a doctor able and willing to help me. Who helped me fighting for my rights in this piece of land called Finland to have medical care I needed and was entitled for. (Oh my, I am going to tell you all about it soon, but it’s a long story for another time.) I could build a new life from scratches. I had to give up my beloved research job. I had to give up most of things. What I did not give up was my dignity, my ability to see beauty in the little things, the gift to believe in miracles. Every single morning the past few years I have been grateful for being alive, as, you know, even that has not always been so certain either.

Do you know how it feels to live in constant fear of something happening that will destroy your life in an instant? I’ve learnt to live with it. Every single evening I have thanked my God that this day wasn’t it. I got one more day. After those years of nightmare, these past few years of light, middle of that familiar nightmare again. Fighting for my rights. Trying to get someone believing me, someone listening in me. Only, this time it is more serious than ever, and just cannot accept it how easily bureaucracy can destroy people. In a blink of an eye, and it’s done, no matter the consequences. Like, in my case, my life.

I just won’t accept anymore going back to the nightmare. I know better now. I know what it is to live a decent life, being able to breathe easily, being able to see, to speak (even my poor Finnish is better than none), to stand without help, to be able to go to bathroom on my own, getting out of bed by myself. I won’t accept any more being in constant fear of death, every single day, in front of my little children who will be afraid too if their mother will die now, this evening, tomorrow, or next week. I won’t go back to the life I fell unconscious for hours, couldn’t move, couldn’t see. I know I have rare illnesses, and a serious brain injury. I must live with them every single day, I have learnt to. I know my limits, I can laugh to my desperately poor memory, my lack of ability to remember to numbers at a time. That I need to rest after taking five steps. But I won’t accept anymore that I need to crawl on the floor because I cannot move in any other way. That I cannot understand what people say to me, to live in a fog thicker than universe, with no knowledge if it is real or imagined. I just won’t. I would have to accept it, if it would be because of my body crumbling. But no. It’s not that. It’s purely because of some bureaucrats deciding they just don’t like this one doctor. And making decision based on fake, forged proof, wrong assumptions, and personal issues. (This is another subject I have a lot to say about, but not now.)  Destroying my life. The life of our family. The life of thousands of other patients. I just won’t accept it.

I am still waiting for the miracle, but I also know that most miracles need a bit more than a prayer, a fairy godmother, and a wish. They need hard work. They need courage. I am not strong enough for hard work, but courage is the one I have left with. So that will have to do.