Apr 29, 2018

Mohammed: my sun, my safety, my serenity

He stood one late July morning in my bedroom, unexpectedly. Mohammed.

I know fragments of Mohammed’s background. He left his mother and siblings behind in Irak when he had to flee, alone. He did the journey here as most of them do. In dangerous and overloaded rubber rafts over the Mediterranean, then by bus and foot through Europe. And like most of them, he doesn’t want to talk about it.

He arrived in a cold and rainy Umeå October 2015. July 2017 he stood in my bedroom, unexpectedly, one morning. The same week that he started working for my home care company Civil Care he had received his temporary residence permit which he had been waiting for for 1 year and 8 months. He was one of the lucky ones. Mohammed, an Arab from Bagdad, 25 years old.

Mohammed’s be or not to be here with me has been shaky all along. Yes, he was allowed to stay in Sweden but not necessarily in Umeå, he could be placed anywhere. Eventually the authorities decided on Umeå after all and in late fall he could move from the asylum accommodation to his own apartment. What a lucky day, he finally had his own home in Sweden! And he cut a Christmas tree in my grove.

“When I was a refugee”, Mohammed said. Past tense.

Mohammed has been such a gift to me. He is caring, attentive, considerate, forethoughtful, warm and loving. In addition he is a very practical young man. He knows how to use every tool in my work shop and has an eye for figuring things out. So not only has he been taking care of me, he has also been taking care of my place, here at the end of the road. Handy man and gardener. He is as meticulous as I am and the result of his efforts always brings an astonished and grateful smile on my face. The path in the snow up to my house has never ever been so beautifully and functionally shoveled and carved.

“I like Umeå”, he said last summer as we got to know each other. “It’s a bit small, but it’s nice”. Umeå has 125 000 inhabitants. Bagdad 12 million.

Mohammed has been picking up the Swedish language by himself and out of interest. The first months I tried to think about how I expressed myself so it wouldn’t be too difficult to understand. He put every new word into his phone for translation and extended his vocabulary every day. This spring I’ve been realizing I am not limiting myself anymore. I talk pretty much as I normally do and Mohammed get’s everything!

Yet, he has to take the steps to learn Swedish properly as it is required by the authorities of course. That’s one of the things which has been up in the air since last fall, when would he start studying and to what extent? One of the things leaving me hanging in terms of stability in my daily life.

I have loved every minute spent with Mohammed. Starting my day with him. Going my mini walks when possible with him. Picking up the groceries. Learning Arabic words and phrases (!). Talking about life. Sitting together in the car, quiet. Following the development of his new life here, so far away from his country and beloved family. 
And my home has never been so well cleaned nor my washes so neatly hung. 

As Mohammed runs up my stairs in the morning and we great each other in Arabic the sun comes up. He gives me such energy. As well as having a calming effect on me. He makes me feel safe. When we arrive home after treatments in the afternoon I normally feel very cold and fragile. I put sweaters on and hide under my thick fake fur blanket on my couch. But although this winter has been terribly cold, I haven’t. It is as if the presence of Mohammed has kept me warm. I feel like I have been held. He fixes my dinner and says to me firmly: “Maria, lie down and relax”. And then he lights my candles before we say good bye in Arabic.

Mohammed has, as every refugee, been through hell. Yet, he is always positive and optimistic. Through all the waiting and uncertainty in his new country - only since I got to know him - his take on it is at all times: “It will come. And it is all going to be great.”

How did you become who you are, I am asking. Mohammed has this rock solid sympathetic confidence in himself and what he can handle and achieve. Like he is infused with light and strength from the core of his heart and spine. Absolutely grounded in his strong body. I was born this way, he says. I’ve always trusted myself to do anything. 

Mohammed did his last day with me on Friday. From now on he will study full time and the goal is to become a physician. He studied medicine already in Bagdad. Now he will start all over again, first conquering his new language. Mohammed will be an amazing doctor.

As Mohammed’s presence here with me has been so up in the air during these 3/4 of a year, I have too. The ability to enjoy every day I was given with him at the same time knowing this day could be the last, has been a mental balancing act worthy a tightrope-dancer. 

I am in grieving. Loosing Mohammed is painful. But I am wishing him all the best on his continuing journey and trusting it to be beautiful. I am so grateful for having had the joy sharing that journey with him for a while. And for every western woman I am wishing the experience of being attended to the way Middle Eastern sons take care of their mothers.

I am walking through my house. Every room is carrying happy marks of all the things Mohammed did for me during his time here. I am smiling, forever grateful. And to honor Mohammed, I am repeating his mantra. It is all going to be great. And my balancing act is over.

Apr 22, 2018

King for a day/Swedish Academy part 2

And he did it!

On Wednesday the Swedish King Carl XVI Gustaf announced he is going to change the 232 year old statues for the Swedish Academy, instituted by his predecessor Gustav III in 1786. About time!

The Swedish Academy is an independent cultural institution, founded in order to advance the Swedish language and Swedish literature. And, since 1901 the Academy has also awarded the Nobel Prize in Literature. The members are selected for life. Since some weeks back though the Academy is in deep crises,

and last week it turned out the Swedish King might be the one able to take action on this matter. And now he has.

The most significant change will be the banishing of the life time membership for the selected members of the Academy. There will be no “until death do us part” anymore:

“It is a given in Swedish and international law that anyone who no longer wishes to be a member of an association should be able to withdraw. This should apply also to the Swedish Academy." 

Words from the King’s mouth, here here. Further: “a member who has not participated in the work of the Academy for more than two years shall furthermore be deemed to have left the Academy even if the member has not formally requested his/her resignation.”

For today, that should let authors Lotta Lotass and Kerstin Ekman - the latter left her Academy chair already in 1989 - out of frustrating life long hostage situation.

So, is everything fine now? Of course not. The Temporary Permanent Secretary (that’s one interesting title!) Anders Olsson declares in an interview how he hopes the (remaining) Academy (11 out of 18 members) now will be able to go back to it’s normal work, such as it was. That’s not a quote, but something along those lines. Does that sound promising? No it doesn’t. The remaining part of the Academy has to realize nothing is such it was. 

I am thinking about King Carl XVI Gustaf. Due to his fathers tragic death he inherited the title Crown Prince of Sweden already as a 4-year old.  At 27 he took on the job as the Swedish King after his grandfather. King Carl Gustaf has spent his whole life waiving at the Swedish people. From the castle balcony and from horse carriages. The Swedish monarch is a bystander with no right to vote in general elections or speak up his/her mind on important or political matters. Sometimes Carl XVI Gustaf can’t hold his tongue though, for which he of course gets criticized.

Once I heard an American expressing how Sweden is an interesting country. “You are a republic with a King and a Royal family.” 

Theoretically that’s not correct. Sweden is a Monarchy. But I can see what she was saying. Our political decisions are all taken by the parliament and government, elected by the Swedish people. Then there is the Royal family who has a ceremonial function, in Sweden and abroad. That’s why all the waiving.

I wonder what it is like for King Carl Gustaf to suddenly have a voice. And a much needed voice. In the case of the Swedish Academy crises it turned out he was the only one with the authority to step in and take action. 

It’s got to feel pretty great! At the age of 72 after 44 years as the Regent, King Carl Gustaf gets to make a decision in a public matter! And in a matter where he is genuinely engaged. The Swedish King is actually engaged in a lot of important questions, but of course the Nobel Prize has to be the crown jewel.

Apr 15, 2018

The Swedish Academy and the 2nd Amendment

I’m not sure why it makes me think of the 2nd Amendment but it does. Maybe I’ll figure it out while writing.

In order to to make changes in the Swedish Constitution, the Parliament is required to agree on two decisions with the same content, and a general election between the two decisions is required. So, it’s a slow process but possible of course since a country is in constant change. Last time the constitution was reformed was in 2010.

Then there is The Swedish Academy. Founded by King Gustav III in 1786. Governed by statues from the same year. Still.

These last couple of weeks this stiff organization has been shattered by internal strife. From the outside it looks like it started with a man in close connection with the Academy, during the Me too movement being accused by 18 women for sexual assault and rape, ending with the Permanent Secretary Sara Danius having to step down the other day. Although that’s not the end of course. That’s so far.

The 18 members of the Academy are elected for life. If a member chooses to no longer be a part of the work of the Academy, his or her chair will be empty until he or she dies. It happens. For the time being 7 of the 18 members are women. Although at this point only 3 are a part of the work. 2 have left by their own will, 2 have been forced out. 3 men also left the Academy last week. So, at this time the 18 are down to 11.

This mess is compared with Paradise Hotel, House of Cards or Game of Thrones. Great entertainment! That would be fine if it wasn’t for the important work the Academy is set to do.

The Swedish Academy is an independent cultural institution, founded in 1786 by King Gustaf III in order to advance the Swedish language and Swedish literature. And, the Academy has also awarded the Nobel Prize in Literature since 1901. There you have it.

The in and outs of this appalling story is complicated and as the Academy is a closed room there are mostly speculations and guessing. The story contains everything for the perfect drama though: sex, adultery, financial irregularities, nepotism and leaking of top secret information - the Nobel Prize winners names. 

What’s very clear though is that the main part of the men in the Academy is buddying up protecting a sex offender who has been known for his behavior in the inner cultural circles of Stockholm for about twenty years. And Sara Danius, the first female Permanent Secretary in the Academy history, who tried to modernize the organization within the statues, has now been sacrificed in the name of peace and healthy work environment. 

Have you ever heard of a position elected for life being a good thing? Didn’t most of us just agree (not Donald Trump though) on the idea of the Chinese president extending his assignment for life being worrying? Holding a position for life means you are not accountable to anyone. So imagine a whole community in it for life. With statues 232 year old, not touchable. A secret society.

Now, where do the 2nd Amendment fit in to all this? Well, to many people outside the U.S. it’s incomprehensible how it is not possible to change the weapon laws when they so clearly contributes to mass shootings and fatalities all over the country. Just change them! No, says the NRA - and some more, it’s the law!

To a Swede it’s unaccustomed how the Constitution and Amendments is perceived like the Bible. But even the Bible isn’t read like it was 2000 years ago, right?

So tell that to the Swedish Academy!

Now, an unexpected player showed up on the field last week. As the Academy was founded by a king, the Swedish King Carl XVI Gustaf is it’s highest protector. Generally that wouldn’t mean anything at all. A Swedish monarch doesn’t have any power. He or she is not allowed to vote in elections and should not speak up his/her mind on matters of importance or at least politics.

But it turns out the Swedish Academy might be a loop hole in terms of power of the monarchy. As it’s highest protector the king might have a say here. Carl XVI Gustaf is genuinely engaged in the Academy and of course takes a big interest in the Nobel Prize. Therefore he is now opening up for and suggesting changes or amendments to the 232 year old statues.

Personally I hope he succeeds. Sweden has two important brands. The Nobel Prize and the Swedish welfare. Both are at jeopardy. Let’s take good care of the both of them.

Apr 8, 2018

Breathing with my logged out brain

I looked at the yellow tulips (although I was thinking they were daffodils) and wondered: has there been some kind of holiday?

Tuesday morning I woke up feeling strange. Like I had been dreaming something making me uncomfortable. I tried to grasp the dream floating on top of my head and pull it in to my brain to get a grip of it. I didn’t succeed. I got out of bed, saw the tulips and couldn’t understand what they were and why. 

Yes there was a holiday last weekend. In Sweden Easter is a four day weekend. I had four unscheduled days at home with myself. I normally don’t enjoy Easter. It’s a really long and lonesome holiday. It kind of never ends. But for the first time in many years I had been looking forward to it. Four days of nothing was just what I needed.

And the weekend started with me getting the relieving message the City had decided not ruining my life! As you might remember from last weeks post I had been waiting in anxiety for five months of what would happen with my home care.

Also, for the same amount of time I have been trying to get myself a pair of new glasses, my old lovely ones had been pinching a whole on my nose and there was no way back, I had to let them go. This turned out to be an extremely taxing project where no frames worked because of the little wound and the glass itself was a disaster. Last week, on the fourth try, I was finally delivered a pair of glasses that works for me. The wound is still there but now at least (sex months later) hopefully it has a chance to heal.

So, I entered Easter with a pulse slowly finding a better pace. I totally enjoyed my four lonely days. Took care of some office things I’ve been wanting to attend to for a long time. Wrote my blog posting on Sunday of course. And spent Monday preparing for a meeting. Good days of my own choice.

And on Tuesday morning I couldn’t tell tulips from daffodils and only had a vague idea of a holiday. When Mohammed came (I still haven’t told you about Mohammed, but I will) I told him I was feeling strange and that I might start repeating myself. You already have, he said, five times.

I have been here before. Some years ago. At that time it was straight away to the ER, I was thinking stroke. I was thoroughly examined for 24 hours but found free from that kind of brain damage.

The damage was on a cognitive level. Facing a difficult loss my brain logged out. That’s what it feels like. When you don’t find your way in the cell phone. When you reed an email you have written yourself and don’t understand it. And it looks different at every read. When you are repeating yourself over and over again because you don't know what you are saying. 

This is scary stuff. It’s like your brain is wide open. Anything can come out of it and anything might dive down there. It’s like there is no filter protecting. You simply don’t have any control of your brain. Well, we never have of course, that’s an illusion, but an illusion that mostly works.

So why this time? It’s pretty simple. After months and months in an extremely strained condition the tension slowly let go. And it’s not only the home care decision and the glasses, no it’s been one thing after thee other for more than a year now. No catastrophes, for which I am truly grateful, but lengthy difficulties draining me. 

It’s also been fun stuff which I have enjoyed. But even fun can be draining when there is never space to recuperate.

Here was the space though. Four unscheduled days by myself. Pulse slowing down. An opportunity for the brain to realize on which level it’s been working. And to put the brake on. Okay guys, this is it for me for a while. I’m off for vacation. Or a really deep nap. 

I hadn’t experienced any warning signs. It has definitely been a lot for a very long time, but I have been handling it. Handling it pretty good I’ve been thinking. Been kind of proud of myself.

So here I am now. Soul and mind fragile. Loosing words here and there. Heart off and on raising. Unexpected anxieties floating up rushing over me. Exhausted. Eyelids closing. But also talking in hyper speed without breathing. I had no idea I was in such a bad condition.

What to do? Well, I remember coping strategies from last time this happened. Protect myself from input and information. CNN a big no. Way to loud and frantic. Breath. Put the computer away between every email, close my eyes and breathe. 25 in and out. Only have one window open at the time. Treat everything I do as an isolated act between which there is to be a pause. This is not easy, it needs training to not fall into reflex behavior.

What more can I do? Not much really. I am not in charge over the home care personal situation which is crucially important to me. I know the management is doing everything in their power for me, but sometimes the situation is unstable and I have to be brave and strong and smiling although I just want to give in and cry. That’s of course taking it’s toll and a significant part of where I am at right now.

Acknowledge the place I am in. Let the anxieties show up and watch them. They are okay, only neglected. Pet my lovely cat lady. Enjoy the April sun outside my window reflected in a meter (3,28 feet) of crisp white snow. I’ve left my balcony door open an inch. Suddenly a tortoise-shell butterfly finds it’s way in leaving me and my cat astonished. A meter of snow and a butterfly! Poor thing. I am thinking I am not the only one confused and lost in context. I am in good company.

Apr 1, 2018

Who is in control of my life? Pain and the City of Umeå

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.  

Who is in control of my life? Pain and the City of Umeå’s social services. Ah, I can hear you…“What about yourself?” I am doing my homework, of course. Coping strategies, mind set, gratefulness, all those things. But the fact is, if the City of Umeå is not allowing me to get out of bed in the morning, it’s their decision, not mine. It’s not under my control. Nor is the pain keeping me there.