Yes, there are two players. Pain and the City of Umeå’s social services.
Once a year I get a visit from an official of the social services at the City. The social services is the office deciding what help and how much of it I am entitled to due to my physical restrictions run by the pain from my dysfunctional body.
This annual visit is something I am dreading. The months leading up to it my fight and flight system starts preparing. Although there is nowhere I can take a flight. So fear is what it comes down to.
Once a year a woman or sometimes two sits down in front of me in the great room where I am mostly living my life. I am lying on my couch. Lying down before the people making these crucial decisions about my life is not a good feeling. But that’s how it is.
They ask me how I am doing and I am giving them a summery. Sometimes they tell me they want to make sure I have everything I need, but that’s not true. The truth is their assignment is to keep the money in the City wallet. To spend as little as possible on me and everyone else who is in need of their help. Who can’t help themselves. Who is sick, old, alone, vulnerable and has no other option.
This annual meeting is a horrible thing going through. To be questioned and an object of suspicion as I am letting them in into my pain, loneliness, vulnerability and the most intimate spots of my difficult life. I am a wreck for days after.
The 2017 meeting was in October. There would be two officials as I was such a big and difficult case. Big, yes, I need many hours of home care help a week. Difficult? For me, having been feeling difficult all my life, using that word on me is like stabbing me. And what’s difficult about me in this case? My guess is that I am younger than most people in my situation. I am lucid and can speak for myself in a good way although I am lying down claiming I can’t do much else. And I am wearing mascara. Sometimes nail polish.
Mascara or not is something I am weighing carefully before these meetings. I realize looking really bad and worn out probably would speak for me. But it also makes me very week. Looking my worst is draining me of power. And that’s not helping me. So I usually walk a middle way. Mascara yes, but no eye liner. A shy lipstick. And transparent nail polish. So they won’t get the impression I was out dancing partying the night before.
Sending two officials isn’t a good sign. That’s signaling they need to be in power. In this case though the women were very young, I am guessing early-mid twenties. They were also really sweet. Hadn’t yet acquired the cold distance officials are armored with some years later.
The young women asked me and Jannie from my home care company Civil Care if we had everything we needed and they actually meant it. They were caring and forthcoming. I have never during my then five years in this situation been so well treated. The officials even suggested extension on some points. I think they were a bit taken by my destiny.
These young women weren’t in charge of the decisions though unfortunately. They had a boss. In a month or so they called me back and I could tell on the tone and the questions that this boss was waiting for them. And their suggestions in the spur of the moment at their visit had not been such a good idea. In fact, now they wanted all of the daily chart notes from more than a year back and Civil Care had to give an account for every single minute they are spending with me and how they use those minutes. My case was now up for audit. I was under scrutiny.
Week after week passed. Month after month. I was nervous. This was not a good sign. Although I tried to put my fear aside (there was nothing I could do about the situation anyway) the anxiety has been hanging over me like a dark cloud. I was afraid they would take time and help away from me and then how would I get by?
Thursday before Easter they called. My heart was pounding. Five months later they had finally come to a decision.
In 2014-16 I appealed against a social service decision all the way to the Supreme Administrative Court. One of the points in the court case was the right to be supported by a person while moving from my bed or couch to the bathroom. I was allowed support when getting up and down from lying to standing and to sitting on the toilette, but not the walk in between. During those few minutes the personal was supposed to leave me and attend to other things. Which they didn’t of course, they would never leave me hanging. Which the City and the courts know and takes advantage of.
I lost the case.
So, the call on Thursday before Easter. No, I hadn’t been denied any of the help or time I already have. I could feel my body starting letting go of some of the built up tension as we spoke. And due to problems with my feet and wrists which has occurred since 2016 they had now added support on my walks to the bathroom! I am sure it will only be a few minutes spread out over the week, but finally I have the support I need and should be entitled to on paper, and my personal isn’t breaking any laws helping me! It feels like a victory after all these years!
If you by any chance would be interested reading about my long an forceful fight with authorities you will find it here:
Three days after that relieving phone call my pulse is calmer. The fact that I don’t have to worry about this crucial part of my life until a year from now is slowly sinking in.