3PM and the December darkness is falling with the semi cloudy sky behind my grandfather’s crummy mountain ashes as a back drop. I feel like those trees. Old. Beaten. A couple of them I have taken out already. The rest are way over due. Sad and week. The storms tend to make an end to rotten and hollow stems now and then.
When I was a child, we had our hide away in a tree house in the sturdiest one. I can still feel the power in my body climbing up there, and the freedom on the platform in the greenery, sensing the movement of the tree. Looking at the world from above. Later, I let my family’s clothes dry on a line between two of them. Tiny colorful baby clothes, eventually transforming to over size black teen age t-shirts. And of course there was a basket hoop. Those crummy trees carry life times. As I.
They are my view from the couch where I have lived my life for the past three years. Yes, it’s been three years now since my back crashed in such a bad way I have never recovered. That’s not what I pictured that day of course. I had crashed before, sometimes it lasted for a couple of weeks, once it took me six months to get back on my feet. But I always did. Not this time.
It was a huge step letting strangers into my house to help me out. It was giving in and letting go of my autonomy and power. But I had no choice. I had to save my children from being completely burned out taking care of me. And in Sweden society has to step in when you are in this kind of need.
But I have been, and still am, forced to fight for my rights. It is the City of Umeå who makes the decision about how much aid I am allowed. The officials are not too generous, and often heartless. I have even been to court in these matters, and lost.
My salvation is the company I am hiring for doing the job (which the City pays), a small local one, Civil Care. They have stood by my side all through these years and are doing everything they can to make my life as tolerable as possible.
So, what is it like, my life? Well, it’s basically tied up in strict routines and pain. I occasionally have better days, but I can’t cheer on those in public out of fear of the City cutting my aid. The treatments and different medications, which are an absolute necessity, are expensive and economy is a constant struggle and dread as my possibility of working is significantly restricted. During my better periods I sing in my choir, even though some of my alto colleagues’ patience with my coming and going and special arrangements is at it’s end. And, as I can’t get around and not plan for socials or throw parties and get togethers, I don’t really see or hear (with a few exceptions) from people any more. I’ve always seen keeping friendship as a job (which I was happy doing), and when I am not doing it, it doesn’t happen.
Do I sound bitter? Of course I am. Bitterness is a severely forbidden feeling, so shameful it’s generally hidden in the dark, disguised in looking from the bright side and smiles and things could be a lot worse and I’m okay and there is so much to be grateful for.
Which there is. Truly. During the last two years I have, in spite of my physical restrictions, been producing a documentary, a portray, an assignment it took me nine years to land. Extremely inspiring and rewarding. I live in a country which is for the most part safe and where taxes makes society take care of people in need, like me. Through Civil Care I have several new young friends in my life, and I get to see people every day. My sons are nearby and I am still in the house I love, my home on my grandparents home stead. And I did my final check up at the oncology this spring, after five years of treatment.
Still, of course I would choose a different life if it was within my control. I would have my meals at the kitchen table. I would take long walks and work out at the gym. I would sit at a regular chair during the choir rehearsal and stand through the concerts, like everyone else. I would put all the kitchen utensils in the right places. I would drive my convertible, top down, in the sun with the wind in my hair. I would hunt for and work more. I would go back to Seattle, make my temporary homes in my choice of neighborhood for the time, walk my favorite spots, drive my favorite routes, watch the sunset in Gasworks Park and Highland drive, put up a Seattle office and produce my film portrays there too, so many interesting people who have stories to tell! And I would travel to Italy, find my perfect place at the see and practice the Italian I’ve been studying every day for years now.