Go with your choice

Exhausted. Happy. Anxious. Grateful. In pain. Proud. Remorseful. Relieved.

I am back on my couch after a 1,5 hour concert with my choir Kammarkören Sångkraft (Sångkraft Chamber Choir). Our first production for this year I was unable participating because of the flue and that horrible faint-and-fall on my bathroom floor. I have been able attending most of the rehearsals for our second production, but since my day-to-day body condition is as unpredictable as mountain weather, there was no guarantee that I could actually do my job as a singer when it was time for the show. On top of that, I had promised to MC the thing… So May 26 in my calendar has been as haunting as alluring.

Friday I was in so much pain a concert was out of the question. Yesterday, a bit more stable, and goddamnit, I am going to do it, at least the MC part! And today I did it, I was actually on my feet singing and talking for 1,5 hour! Will power is an amazing force…

So of course I’m happy. And grateful. Relieved. And quite proud of myself. So what about the anxiety and remorsefulness?

Well, a concert program can sometimes be only scattered songs until they are put together to something that makes sense. And in this production that was my job. Which I like. I like it a lot. So, that’s all good.

Now, I have this tendency of waking up really early in the morning with, what is seems like at that point, bright ideas. I am talking ideas so bright they are luminous. Here is an example:

I am waking up with the most perfect ever commercial-web film idea about Seattle, this is some years ago. I will come up with the concept and direct it. My DP friends Theo or Lulu or David will shoot it. Matt, my super funny actor-improve friend will write the narration. He kind of new the former mayor, so he would get him to by the idea. And then we will have Bill Gates do the narration. See?

Anyway, so I woke up this morning some weeks ago with this image for today’s concert, a kind of intermission supposed to be entertaining, I won’t bore you with the details. Entertainment is a tricky business though. You have no idea if it’s going to work or not until you are there. And sometimes you don’t know even then.

And that’s where I am right now. I am thinking I was wearing a too short dress and making a too long show. (The reason for the too short dress was that it was the only one that could cover my back support.) And what was supposed to be entertaining might have been nothing but embarrassing. Being trusted with the microphone by a community of 40 people is a huge responsibility. Failing that trust is something you don’t want to do. And maybe I did. That’s why the anxiety and remorse.

But. Only because I was able to do my assignment and actually could stand on my two feet singing an entire concert, I am celebrating. And my idea of celebrating is eating a big bowl of cheese doodles watching a movie, in this case Woody Allen’s Whatever Works. The door to my balcony is open for the 11^th night in a row. I was wrong last week about having to put on a wool sweater again within a couple of days. It hasn’t happened. I love being barefoot, and I am, day after day, in May! The Song Thrush is singing all through the bright night and the greenery is magical.

Long ago I had this separate photo show at The Nordic Heritage Museum in Seattle. Framing the pictures for the show I chose an unusual color for the frames, kind of a champagne tint that worked with the reddish selenium tone of the photos. Having it all done, more then 40 pictures, I had second thoughts. Then a friend said: ”Maria, go with your choice. You make a choice and then you believe in it, stay confident and go with it.”

So. I will finish up my snacks. I will watch another movie. And I will try to not pay too much attention to the anxiety and remorse. I will stay with my choice and enjoy the Song Thrush. And be just a little bit more careful when it comes to my early bird ideas in the future.

Yeah, we’ll see about that…

A city and season changing clothes

“Relax!” What a nice call! I am having a ride through downtown Umeå noticing those small wooden beach chairs in Rådhusparken (The City Hall Park). I like to think it was my airy blue and white-striped dressed bedroom that evoked the strike of summer Umeå is enjoying right now. And Rådhusparken facing the river packed with people on blankets is the very symbol for Summer Umeå. Those chairs were new to me and I like them, there is something Seattleish about them, something generous and playful. It turned out it is the fashion and accessory store Åhléns across the street who is being playful, and why not!

Driving from my village into Umeå you pass the river. All of this winter, riding over the bridges going to my treatments, I have been watching the building cranes reaching the sky making Umeå grow and change. Big things are in the works, and it’s just so exciting!

The Forsete block, right in the city center has been a mall for 30 years, and is now going through a complete redesign, inside out. A functional style building had to go down to make the plans for the new block come true, something the preservers were upset about, of course. What’s being built is something very different and I do like it a lot!

Some years ago I was writing a series of articles for the main local newspaper Västerbottens Kuriren, VK. The topic was the exterior of the city and how I would like it to change. The colors of Umeå is red brick, some painted wood, green birches and the blue river. It’s cohesive, but it’s not interesting or exciting. It looks like a lot of fairly young Swedish towns (in Swedish measurements); it’s hard to tell them from each other. It’s flat and kind of stocky, the red brick makes it heavy. The birches in Umeå though, giving the city a lift.

I had the picture of something different, something standing out, adding a new element, light and reflections. I was inspired by Seattle of course. The colors of downtown Seattle are different shades of blue and glass, reflecting the water from Elliot Bay and the sky. Seattle downtown is becoming quite dense, but the skyline still feels light and bright, lifting towards the sky. It’s nothing but beautiful.

So, watching the tall part (a hotel) of the Forsete block mall climbing over the Umeå red brick and roof tops, exterior covered in white and blue glass, I am like… that’s what I asked for, that’s what I pictured! It’s quite amazing I have to say. Trouble 1 is driving me a lot and we are both so excited! And when I am riding with home care Peter I am telling him, look at this, this is what Seattle looks like, don’t you just love it!

I appreciate that this new element might feel strange and odd for some Umebor (inhabitants of Umeå), but give it some time. And in a couple of weeks as the exterior of Väven, the new building for cultural arts at the waterfront will be coming up, the façade of those two buildings will start communicate and I think we will understand every word. I can’t wait!

So, Seattle had an early heat wave a couple of weeks ago with Santa Fe temperatures. I was very envious. Here, two days ago, there was still a tiny rest of snow at the end of the road in my village. Today, the lawn needs to be mowed. Two days ago I was wearing my wool sweater. Today I am soaking the sun in my bikini. That’s how summer happens here, on the 64^th latitude. It hits you! Boom! It’s not Santa Fe temperatures but it’s 77° F (25 C) and that’s very warm for this time of year. The birch leaves are coming out and Umeå is covered in a magic light green sky. Umeborna is also coming out of their winter hibernation, swarming the outdoor cafés and restaurants; it’s probably really hard to find a seat somewhere.

This I know from experience and Facebook. I follow my friends having a lovely city weekend. I can’t join, of course. But I am really happy that I’ve been able to sit outside too! Trouble 1 and friend Erik took out all my garden furniture the other day and dressed my front yard in summer clothes. And yesterday there was this big Koja (Tree house) day, with lots of beautiful young adults working on keeping their childhood, and I had a wonderful afternoon in the sun sharing what’s important in life with lovely Ida and Josefin, We talked for hours!

And this afternoon Peter helped me with the most important sign of summer: rolling my Le Baron convertible out of my grandfather’s snug old coach house! I haven’t been driving for half a year. Not even sitting behind a steering wheel. I took a deep breath. Not because I was worried about my ability of driving. But because it still feels like light years until my physics would allow me to. It was really important to me though to back the car out of it’s winter garage in person, Peter got to be my eyes in the back. And then I drove the twenty meters for parking it in my carport. Oh, what a feeling! The feeling of empowerment! I am sitting in my beautiful summer car, and I am driving! If only for twenty meters…

I can tell rain is coming up in Seattle. And I’m sure my wool sweater will be back on in a few days. But I hope the new gorgeous Umeå glass facades will last for a very long time. And maybe I can drive by by myself with the top down before the summer is up…

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.

You always have a choice. They say/part 2

One morning some years ago I woke up with this sentence in my head. Or, it was more like a banner. You know, those banners up in the air behind a chopper or a small airplane or glider. More common in Seattle than in Umeå. This morning was an Umeå morning, but maybe it was a Lake Union based airplane gliding through my head with this banner. Saying:

“Pain is the only thing tying me down.”

I was lying in my bed seeing, feeling this banner, and it was like a revelation. It was true! The pain is the only thing that ties me down! If I only could find the cure, the solution, the answer, the core to why my musculoskeletal system is so dysfunctional and causing all these problems and physical pain, nothing would tie me down!

And I was asking myself: “What would you do?” And the first picture that came to my mind was me in a summery dress throwing a very light luggage into the trunk, pushing the top down button on my Chrysler Le Baron convertible and driving all the way through Sweden smiling with the sun on my body and the wind in my hair and visit all my friends who I haven’t seen in years, scattered round the country. I might even had those little car gloves on. And definitely shades. The second image was taking off to Seattle without the slightest fear of anything bad happening, nothing going wrong, confident that this will be so much fun. So much fun!

And it’s still true. The pain is the only thing that ties me down. Well there might be a few other things, like lack of self-confidence and self esteem. On the other hand, I have that extreme will power and determination compensating. The bottom line is: if my musculoskeletal system was working like it was supposed to I could work more and make more money. Rephrasing: I am always working, but if I didn’t need to consider what my body allows me or doesn’t allow me to do, I could hunt for and take on different and more assignments.

Now, are all my dreams about what I could do based on money? No, certainly not. Most of them are simply about being able to move without pain. Simply… And then there are those who aren’t dreams, they are utopias if it wasn’t for heaven suddenly opening up for a downpour of obnoxious wealth right above my front yard.

So, just to let you know that my dreams haven’t drowned in my bitterness I will simply make a list. And these are dreams for myself. Of course wishing a healthy, happy and safe life for my children and then peace on earth and global warming and all that solved is above this. These listed wishes, dreams and utopias are only for my own pleasure, contentment and happiness. And they come in no specific order, very randomly nailed down. So, here we go!

·      Sit on the stairs of my front porch having breakfast.

·      Learn how to tango.

·      Make a beautiful pond with a curved wooden deck inside the stone base from the long gone barn on my front yard.

·      Open up a place: restaurant/stage/ library/coffee shop/gallery/ bar/ cultural scene (working title The Place) in Umeå bringing here the spirit and playfulness of Seattle.

·      Walk to Brunnsjön (an one hour walk) with my Nordic walking bungee poles, or around Green Lake (which used to be to short for my needs).

·      Scan my black & white photo exhibit of 42 selenium toned pictures about Seattle and my Swedish village, Away is Home, Home is Away, and make it a beautiful book.

·      Take a downtown stroll and look at everything being built (in Umeå and Seattle) while lying here on my couch.

·      Go to a concert.

·      Open up my great room upstairs to the south, building a small glass porch/add-on on top of the entry front porch.

·      Drive

·      Buy the Smith Tower and invite filmmakers, musicians, writers, artists, crafts people and all kinds of creative entrepreneurs to create the coolest work place in the world.

·      Do three heavy workouts at the gym a week.

·      Open up for a door and a balcony in my bedroom facing the precious morning sun.

·      Go to the movies.

·      Realize my plans for a downtown Umeå boutique selling my own line of quality souvenirs U.M.E.Å! during The European Capital of Culture 2014.

·      Stand on a chair (to reach things).

·      Take an impromptu trip with a friend, just like that!

·      Open up a downtown Seattle Studio Stolterman Storytelling office in the former Washington Mutual Tower, facing the Sound and the Olympics.

·      Move around without back support.

·      Sit for hours and hours with my beloved neighbor Alida, drinking our tea and talking about life and death.

·      Tell the Nordstrom story on film.

·      Hand-wash my cars.

·      Find my favorite place in Italy where I would bring my new video camera which is still to purchase and stay for three months, establish the Italian I am learning with reading the newspaper every day, and document people’s life stories giving to them as presents. And then I would go back there, again and again and again.

·      Pick something up from the floor.

·      Add on a room with beautiful floor-to-ceiling windows facing west, big enough for my great aunt’s beautiful furniture now somewhere else, a grand piano and the Christmas tree, a room letting the summer evening sun in. On top of that a patio outside the second floor great room.

·      Go downhill again. Black slopes. Yayy, yayy, yayy.

·      Have a (Seattle and Umeå) downtown shop till you drop afternoon with a friend.

·      Buy the little white wooden church in my village and together with all my children make it a unique and very special concert hall.

·      Curl up in a sofa chair with my legs underneath.

·      Put together my texts and mini short stories illustrated by Trouble 1 in a book.

·      Pick summer flowers from the ground.

·      Hunt for and take on now impossible assignments for work.

·      Make the fields west of the baker’s cottage a tucked in sweet little lake.

·      Clean my house.

·      Buy a city view penthouse in Seattle. Or a houseboat. Or both.

·      Climb a ladder (to get to The Treehouse/Kojan)

·      Travel, travel, travel!

·      Keep a Great Dane (Grand Danois).

·      Dry my clothes and linen outside on a clothesline.

·      Build a big porch outside the “window room”, facing west and the sweet little lake.

·      Stand up and sit down without the fear of being stabbed by a knife in my back.

·      Keep a sailboat. Or a Chris Craft. In Seattle.

·      Sing my songs so that people can hear them.

·      Do yoga, Pilates or any of those things that would make me feel and look good.

·      Lye on a beach.

·      Spend hours and hours in my darkroom.

·      Winterize and renovate the baker’s cottage, making it the cutest guesthouse.

·      Change linen in my bed.

·      Move to Seattle. Have a life in Seattle. Have a love in Seattle. Buy my Friday flowers at The Market. Be a Seattleite.

·      Clean up my cat’s litter box.

·      Cook. Although my home care angels Peter and Award’s dinners are so much nicer then mine, so that would actually be a loss.

·      Keep strawberry beds.

·      Dance, dance, dance!

·      Shoot my film work myself.

·      Making my grandfather’s dream of damming up the big creek to make a good size lake in the middle of the village come true.

·      Have my meals at the kitchen table.

·      Shovel snow. Or spend winters in Seattle

·      Wear high heels.

·      Make a romantic gate to my white picket fence.

·      Put together my songs – sheet music and lyrics – in a book illustrated by Trouble 1.

·      Take off the safety alarm from my wrist.

·      Lift the front of the wood shed/coach house that’s slowly sinking into the ground.

·      Mow the lawn. Or live in a penthouse or houseboat.

·      Repaint my kitchen and entry. Myself. I used to do all kinds of painting.

·      Go to a restaurant with a friend.

·      Sit down on the grass and get myself up from there.

·      Drive a white Mercedes SL convertible 450 1978 in Seattle.

·      Build a bay window with French doors facing east in my kitchen.

·      Record my songs

·      Make my place a gorgeous rose garden.

·      Light a fire in my ceramic stove.

·      Make a little happy creek running down the grove to the field east of my house – where there will be a lake when I realized my grandfather’s dream.

·      Return the walker to my friend Eva and say thank you!

·     Visit Trouble 2 in Paris. I mean, I have a son who lives in Paris and I can’t visit him. That sucks!

·      Tell the redesign project of the Seattle Waterfront on film.

·      Commercialize my white stained pine furniture line – Stolterman of Sweden.

·      Take Trouble 1’s, Lisa’s, Mats’ and my show Life in a Tiny Purse on the road and make it a contemplative success!

Many years ago I was doing the laundry down in the basement of our Boyer Avenue house. And I noticed I wasn’t in pain! I could do the laundry without a problem, I hummed on a tune and I wasn’t in pain! And I found myself thinking: “if I wasn’t in pain I could have another child!” This condition and state of mind lasted for a couple of hours and then it was gone. I was back to normal again. Jailed in to my locked body where dreams have very little chance surviving.

I didn’t even know I wanted another child. And listing all my dreams above has been an interesting experience. As my body has been extremely restricted for close to half my life now I have to dig deep to even find what I am needing, wishing and longing for. It’s to a large extent blocked out of my consciousness. And it’s the little dreams that are most hard to dig up, those everyday things.

When I grew up my dad taught me all those things that come in handy having on your repertoire: saw, nail, paint, chop wood, change tires. And I loved it. I loved feeling the power in my body and seeing the results of it. I even helped lifting the northwest corner of the baker’s cottage, and every time I am walking down the field noticing that the southwest corner now needs a lift, I am thinking about that Herculean moment with my dad and uncle.

You always have a choice. They say. Yes, there are a few things on my very long list (just to reassure you; this is not my bucket list!) that could come true, with some help from children and friends. But most are dreams. Or even utopias. Because, frankly, right now the idea of bending down, picking something up from the floor is as impossible as moving to Seattle or digging my grandfather’s dream of a village lake. Because this is not in my power. 

“Pain is the only thing tying me down.” I like that it sounds so simple. One little thing. Only one damned little thing.