For close to 29 years now I have had severe back problems. They have escalated, attacking more of my body every year passing, and two years ago I needed to ask the Swedish society for help, my sons and friends weren’t enough any more. It was a huge and horrifying step letting strangers into my home, but I was hoping for it to be temporary. I was wrong.
It is the City that evaluates how much help I am entitled to. Then it’s my choice if I want the City services to help me out or one of the private companies which also provides that kind of service. In the latter case, the City pays the private company to do the job. My choice was a small local private company, Civil Care, which literally rescued me in a time of unbearable pain and despair. They have been with me for two years now, wonderful people, and become a part of my family.
October 2013 I had to ask the City for more help. My problems continued to get worse, and the hours approved earlier on wasn’t enough, I needed even more care. The City declined my request. Civil Care though, never once considered leaving me in the lurch. They expanded their hours with me without getting compensated by the City, and has been loosing money on me for a year now, never complaining.
This is, of course, an unsustainable situation. When Civil Care took me on, they, as well as I, thought it would be a temporary thing. Well, it turned chronic for the both of us. And who knows, I might live for another 30 years and they will be stuck with me!
So, what I did when the City declined covering my needs was an appeal, which I am entitled to do. I have no knowledge about legal processes what so ever, have never been even in the fringe outskirts of anything in that neighborhood, and here I am right in the center of it. It would be an interesting experience if it wasn’t for the petrifying fact that my future life is depending on the outcome of it.
I am terrified. Nothing but terrified. But I can’t lose myself being petrified. Because I need to be the project leader of the case. My case.
I wrote the appeal in July. I have spent most of the summer and fall working myself forward learning the drill as I go. It’s terribly scary. I don’t sleep. I start my days crying in the arms of the Civil Care people. I am in total limbo. I feel like I just want to give in and run away. That’s not what I do, I am not a quitter, I am a fighter. In this case though I feel like I just want to lay down flat on my back and let the City officials run over me. But I don’t have the choice of giving in. Not this time, when I want it the most. I need to stay and fight.
I am feeling a lot as when I was diagnosed with cancer. Being terribly weak, needing to stay extremely strong, fighting something I don’t know how to fight, and not knowing the outcome of it. In both cases it’s fighting for my life.
Fighting for my life, isn’t that being dramatic? No, it isn’t. If Civil Care would only do the hours approved by the City, I wouldn’t even get out of bed in the morning since the official handling my matter with the City has decided I can do it myself although I can’t. I would lie in my bed and pee all over me, that’s the naked truth. I won’t embarrass you with more explicit graphics, but this is the place I am in.
Civil Care can’t go on loosing money on me forever. They are pushing themselves, stretching and bending to help me out in the best way possible, but they simply can’t do it forever. And I feel awful, a parasite, knowing they don’t get payed for all the work they are putting in with me. And somewhere there is a breaking point. I have a sense it’s not that far away.So, I need to fight. In a week or two I will be summoned to a hearing. I have never been in a courtroom before. I will speak up in a foreign country where a different language is spoken. I am terrified. Because I have to win this case. My case. Although I think the chances are minimal. And if I don't? I have no idea. I have absolutely no idea.