May 12, 2013

You are really very sick. She said.

-       I didn’t know what to expect, but you are really very sick.

I was at this meeting with my administrator at the Social Insurance Agency this week. My doctor has declared me ¾ sick, so I am on a ¾ sick leave. Which makes me connected to the Social Insurance Agency, and that’s why I was called in for this meeting.

Now, the Swedish right wing government doesn’t like sick people. They don’t like people who for different reasons can’t work or are out of work. And so the Swedish official social networks aren’t what they used to be. And the staff working with those agencies has to take on armor to protect themselves from being emotional about all these people they have to face, being in very difficult situations. So, they say their approach is, being professional. I say they are (forced to?) lacking empathy and staring strictly at their protocol.

So, I was expecting a not too pleasant appointment. And was met with a smile, a warm handshake and this really friendly woman. Who listened to my story. My 27 years of pain and suffering. My struggles to create myself a professional life outside the regular system and within my physical boundaries. My life situation today. And she looked at me and she said:

-       I didn’t know what to expect, but you are really very sick.

I interrupted her and told her I didn’t consider myself sick. I had cancer a few years back, that’s being sick. This is more of a condition. It’s painful, it drains all my energy, it’s limiting, it’s handicapping, and it makes me exposed and lonely, but sick, no. Then again, if she wants to use the word sick, be my guest.

-       Yes. I didn’t know what to expect when I read your diagnosis, which I don’t, by the way, understand, but you are really very sick.

It was a strange moment. I had armed myself for fighting for that ¾ sick leave and she was puzzled why I wasn’t on full time. And here she was, not an administrator but a human being seeing my situation clearer than I do myself. I told her that I wanted to keep those 25% of work because that’s my connection to the real world. The world where most people have their lives and their purpose. The busy world going on out there while I’m lying on my couch. A lot of days I can’t even do 25%, but taking on the little that I can do is still a skinny lifeline of energy.

We said goodbye. I left relieved. For now, I won’t have to fight the Social Insurance Agency. But there was also something else. Which I think I am still digesting.

She told me I was sick. She told me I was really very sick.

I have accepted the alarm on the wrist. I have accepted (and being very grateful for) the home care that I get. For years I was faking having a non-limited full professional life, and I don’t do that any more. That’s a relief.

But I still do more than I am coping with. I am struggling with the choir rehearsals although I can barely sit, and sometimes I have to give in and half lay half sing from some strange sofa down at the end of the room. And I get myself to downtown meetings with clients too important and prestigious for asking them to my couch office in the village. And every week I am expecting myself to walk the few meters to my neighbor Alida and sit with her for a couple of hours drinking our tea, talking. It’s going to happen this week. This week is when I can do it. How hard can it be?

Because I want to. Because I really want to. And if I stop trying for these things I feel like I will end up Facebook scrolling all day long. And that would be very very sad.

Bu now, a Social Insurance Agency administrator who spends her days convincing people that they, no matter how bad their health is, have the capacity of working (because that’s what our right wing government has assigned her to do), is telling me that I am sick. Really very sick.

And I quite don’t know what to do with that.

Four impressive red deer are grazing gracefully in the evening on the field next to my house. Two regular deer are having fun next to them. It’s mid May and the light is back telling us to expect summer.

I have this thing. I am dressing my bedroom in summer or winter clothes. It’s a stupid thing and a lot of work, but I really like marking the seasons in colors and textures. Of course I can’t do it myself anymore. In November, the day before my back crashed, my sister helped me make the winter room, latte colored and purple, kind of Seattleish. Today my friends Mats and Agneta dressed it in blue striped and white cotton, very Swedish. Half a year has passed, the part of year that I find heavy and dark no matter what, and this year, very long.

My white and blue bedroom makes my heart lighter. The deer leaving the safe and shady forest lured by the fresh grass on an open field makes me warm. A friendly Social Insurance Agency administrator tells me I am really very sick. But I want to feel like my summer dressed bedroom. And I want to be as courageous and foolish as the deer. I want to go outside. And reach for life.

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