When New Year sucks

I am opening the envelope on New Year’s Eve. It’s from the official, handling my case at the City. I have applied for assistance when getting ready in the morning and going to bed in the evening. I need someone close to me when washing myself and brushing my teeth, putting on lotion, deodorant, that kind of basic stuff we all do to start and end our day. The application was denied. This matter is beside my case in the court where I was denied help to move myself from the bed or couch to get to the bathroom, and assistance to get to my treatments and doctors appointments.

So, why am I opening this envelope on New Year’s Eve? It’s been sitting there for a couple of days and I am pretty sure of the outcome of the application, yet I am choosing to open it on New Year’s Eve.

We have just entered 2015 and if you want to read something cheery about turning a page, committed new year’s resolutions, things can only get better from here and positive thinking changing your life, you can stop reading right here. Because here is a New Year’s observation from someone who is not allowed to leave the dark forces behind in 2014, seeing the light of 2015.

I am opening the envelope because I will spend New Year’s Eve by myself. Lying on my couch watching TV, knitting, like every other fucking evening during the year. I am not spending New Year’s Eve alone by choice. Not my choice anyway, a witty comment I heard the other day watching the wonderful movie Hotel Marigold. I have been doing it a number of times before. It’s extremely sad and it sucks. Therefore, I might as well open a declined call for help brushing my teeth in the morning.

2008: “I am alone on my couch watching the traditional Swedish PBS new years celebration. Sipping on cider and nibbling some snacks. Trying, at least. But it’s sad. For some reason I had this idea someone would get in touch with me this year. Ask for me. But no one did. Not even this year. Friends and family are having their celebrations. I am alone. With a tumor in my breast. I am alone with cancer. What if this is my last New Year’s Eve. And no one is asking for me. It makes me sad. You are not supposed to be alone on New Year’s Eve. Especially not with a deadly decease. 2009 will be the decease. I am crying.”

An extract from my journal 2008. But really, that must be the most horrible New Year’s Eve ever? No, there have been worse.

So, 2014 wasn’t that bad. Not bad at all. Neither I nor anyone else was dying. I did survive the cancer and here I am. I am grateful. Of course I am grateful. It still sucks though, being alone on New Year’s Eve, the home care people serving me my usual everyday dinner (my choice, I didn’t feel like buying something extra) feeling sorry for me, being upset for my sake.

I have accepted being physically limited and I am trying to make the best out of the situation. I am making a strong effort not poisoning the world with my darkness and I am mostly doing a good job in that sense. Being nice, cheery and chatty with home care staff and family, saving tears and fears for myself.

But entering 2015 I feel like I am stuck in solidified tar. For six months now I have been fighting the City for being assisted with the most basic things in life. Getting out of bed, going to the bathroom, getting dressed, having escort for my treatments to get me through the day. I am not asking for excesses. I think I am asking for human rights. And I am denied.

I am fighting so hard, and the harder I fight the deeper I am sinking in that tar. Entering this new year it is up to my neck, solidified, I can’t move. They have won. I am beaten by the system. No new year’s resolution can alter that. I have no page to turn. No positive thinking by me can change a protocol run city official and a court judge. And I don’t know what to do. It stops here. The dark forces from 2014 will continue running my life, there is absolutely nothing what so ever I can do about that. That’s where I am at the entrance of 2015. Stuck to the neck in solidified tar. In this sense, how can things only get better from here?

The final julotta

Thinking about it in beforehand I have felt sad. Knowing it would be the last. The last one in modern time. And the last one forever. But, at my place on the front row singing the familiar hymns, surrounded by my four generation extended family, my heart was happy and I felt pride more than anything else. We have done this well.

I am the seventh generation on my mother’s side in my village, my sons the eighth. That’s as far as the family tree takes us. Once the little white wooden church was a bride. Born and built in the late twenties by my grandfather Carl and the farmers of the village, dressed by their women. Every Sunday they greeted her. But the early morning Christmas Day service, the “julotta”, was the most cherished celebration of the year.

Carl, a very driven man with a beautiful barytone, died 1945 and so did the julotta. In the middle of 1990, Margareta, another granddaughter of the men and women who created the village temple, and I, started fantasizing about arranging a julotta. The wooden church was still there, mostly quiet and and empty, what if we could wake it up from it’s involuntary inhibernation? What if we could fill it once again with warmth, music, words and people? What if? 

And so we did. 1998 was the first year. The room warm from the electrical stove. The light shut down, replaced by flickering candles. People gathered in the pews, shaking hands, nodding, smiling, scooting after to let everybody have a seat. My village has been known for being musical, and it sounds like we still are. The Christmas hymns filling the room, lifting to the ceiling.

The agreement was only one julotta. And see how we felt about another one the year after. So, in October there was the phone call. How do we feel? Are we on?

The question was first put to Trouble & Trouble and their cousin Johannes. I was in charge of the music, and the boys were crucial in that sense, so if they were on, I was on. And if we were on, my cousin Torbjörn who is a pastor, was on. And if we were all on, the village was on. Margareta was Christmas dressing the church, some were baking for the after service coffee, my second cousin Roland was in charge of the marketing, my mother’s cousin Bertil, then 77 years old, played the organ. Everyone who wanted to be a part took on an assignment, and together we made it one more time.

And one more. And one more. In October, the call. At Christmas Day the julotta. For every year there were more people coming. No matter if it was a rainy or a white Christmas. We had created a tradition that people didn’t want to be without. Little did we know, Margareta and I, that the mid 1990 fantasy of our’s would be a 16 year long tradition, even outnumbering the Christmas morning services our grandfathers arranged 1930-45!

But everything must come to an end. At least most things are. Since some years the white wooden church is owned and taken care of by another village grand daughter, Christina. And Trouble & Trouble and Johannes are grown men starting their own family traditions. So, a year ago, we decided that 2014 would be our final julotta.

I am sitting at the front row. It’s -6°F (-21°C) outside and the trees are covered in snow. It’s freezing, yet 162 people have defied the early morning and the cold to come celebrate the last julotta. The little white wooden church is for the final time filled to the brim with a congregation, powerfully singing the holiday hymns. It’s a Christmas card Christmas and once again I get to celebrate it with my loved once and my friends in the village.

I am thinking, what if they can hear us? Grandfather Carl and grandmother Signe, all the other farmers who are the ancestors of this congregation. What if they could see us? Bertil, now 93, one of the children, still with us. Torbjörn, my sister and me, Margareta, Roland, Christina: the grand children. Trouble & Trouble, their cousins and second cousins: the great grand children. And baby Maia, only 3 months old, her first and last julotta, Carl and Signe’s great great grand child.

The mind boggles. Those perspectives.

I feel like I am in the middle of a time line. We have been building arches between now and then. Two new generations have been a part of the traditions our grandparents once created. My sons were 10 and 12 their first julotta and will not remember anything else than getting up way too early on Christmas morning, but still wanting to do it.

In 1945 no one new it would be that generation’s last julotta. Carl died summer after, too early, only 57. And the julotta died as well. For 53 years the Christmas mornings were dark and silence in my village. 16 years now, they have been again light, warm, filled with music, joy community and coffee. But this is the final one. We are finishing up. And we are doing it with respect and dignity.

I am feeling unexpectedly happy at my front row. Happy and very proud. Being a part of this story. Having been blessed creating a part of this story. We did well. Maybe. Maybe, this is the meaning of my life.

In the arms of an angel choir

Coming to life looking in to familiar friendly faces. One checking my pulse. One lifting my legs to get the pressure up. Silence. Realizing the concert is put on hold by me falling.

It was in a way a magical experience. During my choir’s Christmas concert. I didn’t feel well. Kind of sick. And a bit dizzy. And the next thing I knew I woke up surrounded by all these faces. And arms. They caught me. Like I was in the arms of a down comforter.

So, I didn’t get to sing the concert, other than the first third of it. But I got to listen. They put me in a pew and covered me with blankets. It didn’t help. I had the most terrible chills. But I got to listen to a wonderful concert. An angel choir.

Lying there I was mostly worried about what would come afterwards. In the church I was safe. Surrounded by people. But at home by myself.

Then a different angel sat at my side. Linda is a sound engineer who is on my film crew. And she happened to be there. She sat down with me and told me she could stay with me over the night if I wanted. Thank you Linda, thank you.

Back home, finally, it turned out I was running a fever at 102° (39°). That’s extreme to be me. No wonder I was freezing into my bones. I am so terribly grateful to Linda taking care of me, and she will be until tomorrow morning. My pressure is dropping just by sitting up, so the most basic things are dangerous to perform, even with support.

And if I would give you one little piece of advise at Christmas time: when you are about to faint, do it in the arms of an angel choir.

A year as Capital of Culture - from the corner of my eye.

A thin white layer is covering the ground, finally lightning up this very dark fall. Temperatures have mostly been around freezing point or warmer making it impossible for winter to make it’s entrance. I am not complaining. The later it’s arriving, the shorter winter. Works fine for me. Although even I love a white Christmas so I hope it stays now.

And I am sure it made last night even more festive. Wrapping up this very special year. 

Umeå, the European Capital of Culture 2014. We have lived with that epithet for a very long time now. First through the protracted application process, then winning the title and years of preparing. And so, finally, realizing it. In retrospect I would say it’s amazing how a small city like Umeå could pull this off. It is quite an accomplishment.

Umeå is, by nature and tradition a city of culture. There is so much going on here in every art form there is no way you can take part of everything even a regular year. But Umeå 2014 has been crazy. From the inauguration on the frozen Umeå River late January until the closing bash last night at Rådhustorget (the City Hall Square) in downtown Umeå.

There have been numerous WOWs and of course a lot of skepticism and criticism among the inhabitants of Umeå regarding the year that just passed. I think though, and hope, that we, as a city, have gained self confidence and self esteem lasting for a long time.

As for myself, I have followed Umeå being the Capital of Culture through media, Facebook and friends. Missing the inauguration on the river was a big disappointment to me, although everyone telling me how cold it was, how crowded and how they hardly saw or heard anything, I must admit was comforting. A couple of weeks ago I thought it would be possible for me to attend the closing ceremony instead, but I turned acute last week, so that was out of the question.

Being physically challenged for many years now, I have adapted to not being a part of the cultural life in Umeå the way I would wish. I feel like I am watching it from the corner of my eye. I know it’s out there but I am in here. And that’s how it is. Therefore I am so grateful for the two things I had sat my eyes on and actually could be a part of.

The amazing outdoor opera Elektra from Richard Strauss performed by Norrlandsoperan (the Umeå opera house) was a show and an experience so overwhelming it took focus from my pain for a couple of hours. Thanks to my friend Agneta and a garden chair in which I could half lie half sit, I got to be a part of a collective Umeå memory that will last for at least two generations

And then there was the choir festival. The idea which I had been carrying since the late eighties, this summer realized by Kammarkören Sångkraft (the Sångkraft Chamber Choir. A Choral Midsummer Light’s Dream - Umeå International Choir Festival, taking place during the Midsummer week, was a huge success even though the rain was poring down and the nights were at freezing point.

There was no way for me, of course, to be a part of the festival the way I had pictured through the years leading up to this. But thanks to extreme will power and many helping hands I could do the assignment I had taken on, to be the MC of the main evening concerts. Together with Agneta and my sister Kia I announced vocal ensembles from nine countries during the White Night Concerts. I don’t think anyone in the audience could tell that one of the ladies in the spot light at the front of the stage, between every set staggered back stage and collapsed on a foldable bed.

Last night Umeå said goodbye to being the European Capital of Culture. From what I can see from the pictures it looks like a grand closure celebration. The former City Hall was lit up in a spectacular light show I would have loved to see. But things are what they are. And I am happy that Umeå the European Capital of Culture on the whole has been a huge success. We have all done a good job. Even I! 

Swedish governing in historic limbo/part 4

So, the worst case scenario is happening. This week Sverigedemokraterna brought the Swedish government down on it’s knees. We have a government crisis.

In September the Swedish people voted in a way that put governing in a historic limbo, and the outcome was a weak minority government. A very unstable situation.

There are eight parties in the Swedish parliament: Moderaterna (the party most to the right), Folkpartiet, Kristdemokraterna (the Christian Democrats) and Centerpartiet, those are what we call the middle parties. There are also of course Socialdemokraterna (the Social Democrats), Miljöpartiet (the Swedish green party), Vänsterpartiet (the Left party), and Sverigedemokraterna (a nationalistic, social conservative and no doubt about it racist party).

For eight years Moderaterna and the middle parties formed a government under the name The Alliance. In September though, the result of the Swedish vote was the Social Democrats and the Green Party governing together. I was happy, although the minority situation made governing unstable. What was most scary though was Sverigedemokraterna having 13% (a totally unreal and terrifying number) of the vote and therefore becoming the power of balance in the 2014 Swedish government.

The main issue for Sverigedemokraterna is to put a stop to immigration. And their message this fall has been them voting for the budget that would be “the least harmful to Sweden” in that sense.

This week the government did present their budget. And the Alliance presented a different one. Sverigedemokraterna voted nay to the government budget. And yes to the Alliance. Not that the Alliance one was very different on the subject immigration. No, the purpose was to make the government fall.

“As we will vote nay to any budget!”. Was their message. Their assignment is to create political chaos. They can put any government down on any budget every six month.

So, on Wednesday our Prime Minister called for a new election on March 22. There hasn’t been an extra election in Sweden since 1958. And the current Social Democrat/Green Party government will have to govern on the Alliance budget up until the election. How messed up is that?

There are too many angles to this situation being so horrible I have a hard time finding words for them, even in Swedish.

87% of the Swedish people (who voted in September, which was 86% of the inhabitants), want Sweden to be a place of diversity welcoming people from other countries, weather they are Swedes moving back from abroad, professionals sponsored by companies, or refugees leaving their homelands in misery, fear and despair. 13% of the vote is for some reason terrified on this subject and they are now in power! Divide and rule.

“We are looking forward to the March election, it will be the referendum on immigration!”. It was when I heard those words I realized that this had been their agenda. This had been their goal all along. And all the other parties were behind in the dark. I felt sick.

So what are the other parties doing in this extreme situation? The established parties, most of them having been there forever, some (like the Christian Democrats and the Green Party) making their entrance in my life time.

You would expect them to be sensible and simply come together in this terrifying case, finding a solution where a majority could run the country together. Nope.

Stefan Lövén, the leader of the Social Democrats and the Swedish Prime Minister met with the Alliance leaders on Tuesday night asking them for collaboration. The response was no. Not even a maybe. There was not the tiniest crack for negotiations. Instead they chose to let a nationalistic, social conservative and no doubt about it racist party have the victory.

Watching it I feel like they are all in their Terrible Twos. I am right and you are wrong! This is mine! I don’t want to play with you! I feel ashamed for them.

Sverigedemokraterna in the parliament are mostly angry young men who in four years (that’s how long they have been there) have become insidious strategists, a scary troop in expensive suites having a vote about our country. But the established parties should have more sense then acting like aggrieved teenagers. This isn’t just a political quarrel, this is a party starting a war within our own country. How can it not be that seven experienced parties see that and put a stop to it together?

The Swedish people had a vote in September. Are we to blame? Do we get the politicians we deserve? No. 87% voted for levelheaded men and women we had confidence in. We put Sweden in their hands. And they are handing it over to 13% dangerous dark powers. I feel betrayed.

This is the case. My case/part 4

It was surreal. And it didn’t end well. 

To be in a room where people are talking about you. Evaluating and judging you. Above your head. And in my case literary, as I was lying on my portable sun bed during the hearing.

Exposing myself and my most private matters before my opponents the City officials and a stone faced judge and the jurors. Being as vulnerable as someone can be, in my effort to get through that concrete wall up on the podium. To reach them. I failed.

I have never been in a court room before. I entered led by my lawyer. The judge, three jurors and the notary were in their seats at a podium. My lawyer and I on the right side of the room, three City officials on the left. My nephew Johannes and Audrey’s mother Maria were my support team, as well as a friend from my village who happens to work at the court house. They were seated behind me, down by the door. It felt good.

The two officials who are handling my case for the City and the ones who decided on not giving me the assistance that I need (and that’s why we are in the court room in the first place) dislike me. The two women in their early thirties really dislike me. And we are in court. The judge and the jurors are a concrete wall. Not unfriendly, but a concrete wall, as they must be. And that’s the situation in the room where I am lying on my sun bed listening to them talking about me. And when I am speaking, I am naked.

I am thinking, how could I have done this alone? I am so terribly grateful to this sweet lawyer who was by my side through this process and put in I am sure three times as much work as he charged me for.

Afterwords, as I don’t have any references, I couldn’t tell how things had gone. My lawyer felt good about the situation though. And I think we all did a good job. Awara, one of the Civil Care owners (my home care company) and Trouble 2 being witnesses. And the lawyer and me.

The verdict came a week earlier then expected. And it turned out things hadn’t gone well at all. My appeal was entirely rejected.

This I was prepared for, of course. It was my worst case scenario. My appeal was divided in two parts though. We knew one of them would be difficult, as an acclaim would have been precidential, so the chances were not that good.  But we were hoping for the other one. It was a minor adjustment in the assistance I have already been approved of. It’s so minor I would like to explain it, to make an effort giving you a picture of how City officials on assignment helping people in need, are operating.

A week before the hearing I was suddenly approved help getting out of and into bed and out of and into my couch, to get to the bathroom. This was originally in my appeal as I had been denied help moving from lying to the bathroom and back to lying again earlier on. But, just days before the court they changed their mind. So we thought. It turned out the approval was only rising and sitting down on bed, toilet and couch. Not the few steps from my bed to the bathroom. Not the few meters from the bathroom to my couch. Now, if that is only steps and meters, can’t I do that myself? No, at my worst, there is not a chance for me to do any of this myself.

This City official procedure made so little sense we actually laughed when we got to know. Are they serious? Someone is going to help me out of bed, then leave me, come back when I have reached the bathroom, help me sit down, leave, return to help me up, leave and return when I am at the couch to help me lie down. So, what are the Civil Care staff supposed to do while I am struggling between bed and bathroom? Drive back to Umeå? Go for a walk? To be back the next minute to help me lie down? Seriously?

The procedure made so little sense we thought the judge and the jurors would see what we saw. We were wrong.

What was the other part, the difficult one? Well, it’s more complicated so it will be a separate blog subject, but it’s a vital issue and it’s crucial for me to get assistance in that matter.

It was this Tuesday when the verdict came. A week early, so I wasn’t prepared. My heart raised. I had to take care of some job issues and some urgent things on my to do list. I knew I would be a mess after opening the document. And I took many deep breaths before.

I read. And was crushed.

The judge and the jurors didn’t only appear as a concrete wall. They were. I had stood (lied) before them exposed, naked and vulnerable. I had told them about my situation,  in a court room matter-of-fact way complemented with, before the lawyer’s closing, a more from my heart (but still controlled) testimony. But they didn’t hear me.

My profession is to bring a message through. To tell a story so it touches the heart. I can trust myself on this. It’s pretty much the only thing about myself that I can trust. Until now. I should have been able to find the word that poked a tiny little whole in that concrete wall. The sentence that made the concrete crack. But I didn’t. I failed on the one thing I can do, at the most important message bringing in my life. About my life.

So what now? Well not only did I loose in court what I needed to win, but the two early thirties City officials who don’t like me, deciding about my life, won. Which means they will feel very safe denying me anything I need in the future. 

A new port at the Umeå River!

To watch the developer and the architect on Friday, harbor and express their happiness after years of work was amazing. Ladies and gentlemen, I am giving you Väven!

Ten years ago I produced a film for Balticgruppen, a developing company based in Umeå. Six architects on a parallell assignment were coming up with six different visions for redesigning the Umeå waterfront facing the Umeå River. Bold, brave, beautiful and surprising. The Oslo firm Snöhetta vision was the one advocated before the City, but for reasons later discussed and debated in Umeå the vision never came true. As I documented the whole process on film, being present when it happened and later watching 16 hours of footage, I have a pretty clear opinion about the circumstances, but I will save that one for my memoirs.

Umeå has been divided on the waterfront design subject, as we should. Imagine a city agreeing on a big change! Some were relieved that first vision didn’t come true, some were disappointed. I was among the latter part. Disappointed and sad. So was Balticgruppen, Snöhetta I am sure, and parts of the City Hall.

The idea of redesigning the waterfront turned into a Sleeping Beauty for quite some time, but what the City could agree on was that something needed to be done. For the same reasons as the redesigning of the Seattle waterfront: turning the city towards the water and making something ugly and deserted into a welcoming and beautiful spot for people to relax, meet and have fun. Building a new front porch.

Somewhere along the line the City and Balticgruppen started looking at an option for a main attraction on the 9 block stretch between Gamla bron (the Old Bridge) and Kyrkbron (the Church Bridge), called Staden mellan broarna (the City Between the Bridges). To make a long story very short they agreed on a building for cultural arts and invited Snöhetta as the architect along with the local White office.

Through the ten years passing since the six visions being like a love story between the City, Balticgruppen and the leading architect firms within the Nordic countries, there has been a lot of grief and frustration, even feelings of hopelessness. Therefor, the opening of the building for cultural arts Väven this weekend is an amazing milestone some of us, at times, never thought we would reach.

Väven (The Weave), where various forms of cultural expression will be woven together, harbors a new city library, the Women’s history museum, a black box, two movie theaters and much more, coffee shops, restaurant, a conference floor and two hotels within the Väven block.

The black and white glass exterior of Väven is inspired by the graphics of the birch stem, an Umeå signature. So, if you like the new building you say it’s woven into Umeå. If you utterly dislike it, your opinion is that the building looks like a cruise ship, is totally out of proportion and ruins the familiar Umeå character.

Myself, I have loved every minute of watching an ugly parking lot, an eye sore, facing the Umeå river change into a bold and beautiful building. Then, of course, I am emotionally attached to the project since my documentary ten years ago. And the fact that I am now producing a different film, where Väven is one of the main characters, makes me very grateful.

At 1PM Friday, Väven was officially opened. The vision which the Balticgruppen developer and owner Krister Olsson and Kjetil Thorsen, founding partner of Snöhetta had been carrying for years was now for real. During the weekend the people of Umeå has taken possession of the two men’s dreams, drawings, renderings, models and fantasy about a weave of arts and people at the shore of the Umeå River. The way it was a weave of people and cultures when the river was deep and the very same place was a vibrant ship port.

For me to watch the two men meet and happily hug in the middle of the Friday crowd, only minutes after the doors opened in the building they created, was a big moment. Through my films I have been allowed being an eye on the inside of this ten year process. I can’t say how grateful I am being there the historic day of the opening.