The pace of the thankful diver

So finally some people in the concil and health services have started realizing how difficult my situation is, and I am indeed grateful that they worry. But unless they have masses of money to kick-start some bio-medicinal research, or have a minor miracle up their sleeve, there is unfortunately nothing they can do to help me.

This will to help mis-fired a fair bit the other day, when an emergency councilor team came out to convince me that I needed to be admitted to a psychiatric ward, since they had interpreted my claim that I was so weak I couldn´t eat by myself, as a refusal to eat, and the classic "cry for help" from a severely depressed person. It took me the best part of an hour, and the the entirety of the remains of my energy that day, to explain to them that my condition is not psychosomatic, and I have no planns to starve myself to death as long as I hold the ability to swallow. It didn´t make it easier that one of the councilors was of the "new age" type, dropping lines like "this incarnation is trying to tell you something" and "mind over matter". I have a bit of a built-in aversion to this kind of "airy fairy" stuff ever since I was severely depressed a bunch of years back and my boyfriend at the time explained me weak of mind and that it was the easest thing to rid of if I just turned to Buddhism and I-ching. Something he claimed made him balanced and fit for anything. This comming from a guy who made me feel insecure and lost and who when I left him, broke in to my house, tore the place apart and when I came home grabbed me by the throat and threatened me. Not to mention the phone stalking and crying for a long period afterwards. I say bollocks.

The only thing anyone can do for me now is to take care of all council and goverment contacts for me so I am left alone. I just don´t want to educate any more people about my condition, it drains me of the little energy I have, and i keeps me stomping on square one.

Well no not square one. More like -15. I know that the only way to survive with this crap is to completely surrender, and those who know me know how hard that is for my stubborn soul. Pacing is all about never to use up the little energy I have, to always leave a little to cultivate when I rest (like making filmjölk). Sounds like the advice a first-time visitor to Las Vegas gives himself, "always finnish while ur on top". Well it usually never works for them, and mostly it goes the same way for me. Its supposed to be tiny steps forwards, but so far I´ve only managed giant leaps backwards.

At the moment a general day can be likened with diving without tubes. I wake up (take a deep breath), get out of bead (go down under water) put some clothes on, go downstairs, make a simple breakfast (swimming), eat it (still swimming), go to the bathroom (running out of air), brush my teeth (really need to get to the surface), collapse on the sofa (gasping for air at the last minute). I then lie there for a few hours breathing, possibly listening to a podcast. Later when I need to go to the bathroom again, or maybe to eat some lunch it starts again with a deep breath and I go down below the surface, fighting the urge to do too much, like cook something that actually tastes good, make a phonecall, or read the mail, so I get back on the sofa/in to a darkened room (above the suface) while I still have some air left. Funny that I always wanted to try scuba diving but never got around to it till it was too late, might have come in handy these days...

I know its a cliché, but it really isn´t until its too late that you realize that you must enjoy life while it happens, and stop thinking that once I get that job/save up some money/write that essay/loose those pounds I will have a chance at happiness. I was happy but was too busy looking forward to appreciate it. But am I contradicing myself when not appreciating the good things in my life right now? I mean, noone doubts that I suffer, but I have wonderful parents who help me the best they can, a man back in UK with the biggest heart there is thinking about me and talking to me as often as my condition allows, and friends from all over sending me positive thoughts. I love them all, but I struggle to be thankful right now. Its a work in progress I guess.

All time low

So I´ve come to reach an all time low, again.

The crash sort of crept up on me. It takes a while, and every day feels like it couldn´t possibly get any worse. I mean when u are so weak that u have to let your mother feed you, its hard to imagine what more could be in store.

We had guests this past weekend, and I laid on the couch for about 95% of that time. They were all understanding and most of them took their time sitting down chatting to me for a while. Now I do like my relations, and I do want to see them, and I know that they came in to chat to me cuz they wanted to be nice to me. Problem is that even chatting while on my back makes me worse, and by the end of the evening even whispering made me out of breath. I was honestly expecting (and hoping) to just pass out.
But I never do.
My cousin William, 7, wisely told me when I explained I am very ill, that all I need to do is to drink some Actimel and I´ll be fine. He reconed 4 should do it. I wish I could believe everything they say on telly too, it would be so much easier if life really was like in the ads.

So for the past 8-9 days I´ve just been on my back. Normally my ME doesn´t involve much pain, but when having constant pressure on my back, my lung area and my legs eventually get quite sore. I´ve watched the final two discs from the Invest in ME conference, and I still take it in with mixed feelings. My set of symptoms don´t seem to really fit the descriptions that the specialists are working on treatments for. They all focus on finding the viral cause, but I never had a viral infection at the onset of all this. Maybe I did but didn´t notice it? UK physicists mostly focus on the pacing management, but I can´t see how to apply that to my situation, I don´t have anything to pace!

They say that the only way to live with this is through a very routined life, something that I might be able to learn to live with. If that wold mean that I could still manage to care for myself. But I can´t see how I could settle for a routine in bed, and pacing meaning that I could manage a 15 minute phonecall or a dull movie on a whole day. Thats not a life I consider worth living, and not all the counseling in the world can change that.

Not that I can have counseling now anyway. I couldn´t speak for even a quarter of a session, and that is if I even got there. I can´t keep myself up in the wheelchair and she doesn´t make housecalls, so its justme and...me. And anyone more negative than that is honestly hard to come by.

So all I can do is just to lie here on my back, laptop on my tummy, waiting for a miracle, typing really slow, hardly reaching the keys in the middle of the keybord cuz it makes me have to tense my arms and knacker me out even more. And I don´t know if reading on the screen should be a no-no too.
Sometimes I toy with the idea of what would happen if I just got up and ran 100 meters as fast as I could. Would I be concious the following year? But mostly I am so afraid to get trapped in my body and not be able to communicate, to turn in to a vegetable while my mind is running. I feel like crying is my default state.

Life-support at all costs

The stream of new people from this or that department that might be of help in my situation never seem to dry up. Yet not a single one has actually managed to do me any favours. I´m waiting for the same answers now as I did in april, buy surely I must understand that from may to august Sweden is on holiday and sick people just have to wait. In the meantime I have become more ill, more dissolusioned and more desolate.

The Invest in ME conference in London this year sold me their DVD, and although it said "treatment" with big red letters on the cover (among other things), I don´t know why I let it get to me. There might be something they do in the US to a group of ME sufferers that tested positive for a certain virus in a stomach biopsy, and 28% of them have shown some improvement. But that is in the US, and will never happen in Sweden. Besides, I am one of those who didn´t have a virus infection at the onset of my illness, so I´m even a minority within this "pretend-it-not-there-and-it-will -go-away-government-policy" illness. And all I can do is to look out the window and try to stay positive. They don´t know what they´re asking!
Indeed I wasn´t depressed at the onset of this, and I managed to maintain a bit of hope for the first year because I sometimes had periods when I could take a bus and visit people or even drive to do some shopping.

But those periods are long gone. I smell and don´t even remember when I showered last, but I don´t dare to do it because then I might not even be able to go to the toilet by myself afterwards.

There is an ME forum where cherpy housewives say they can talk themselves in to thinking that they get the luxury of staying in bed all day. Well maybe I could too if I in between also could have days when I slowly could walk in a park or have a coffee with a friend.

No, who am I kidding. I am a pessimist by nature and I never liked staying in bed, it will never seem like a luxury to me, period. I am alone and don´t remember what human touch is like, the friends I used to have thankful for the distance that makes it easier to pretend I´m not there.
I see no hope anymore and I don´t want to hear that I´m too young to be written off at the same time as no officials will lift a finger to help me. The cost of keeping me alive and suffering will escalate when I develop more illnesses thanks to the sedentary nature of ME, but yet this CPR must continue indefinately because its a code of conduct that western healthcare is built upon. Regardless of my wishes.

The knitter apprentice and her fourth piece

I´m very thankful for that Erika and Anna, the master knitters of Sweden and England respectively, have inspired me to take up this fine needle work. Although it tires me out at periods, it s the only creative outlet I have, and for short bursts it can even make me forget how dire my situation is, but I won´t go in to that again today.

Last thing to finnish is my first cardigan. Most of it I made when we were in Denmark, but when I made an attempt at assembling the pieces back home I had to take up and re-do the front bits not just once, but about 4 times before they fitted on properly. I still think its a bit on the short side, but hope I can strech it out a little after I wash it.

I have a dream, just one

Its been a strain to be me the last few days. Not so much because my ME has been treating me worse than usual, but because I get bouts of mental distress that get deeper than I can handle at times. I was listening to Sommar on the P1 radio today, and don´t know why I forced myself to listen to the whole 1 1/2 hour program of one of the hosts in end of june, Fredrik Härén. He went on and on about how you can realize your dreams if you want to, and that its just to get out and take those steps and it will all come to you. Its been alot of that lately. The man who´s car got hit by a moose and was a write off, only for him to win a brand new Volvo two weeks later. Sports profiles who overcome injuries against all odds, or those that don´t and then discover masses of meaning in life through raising a family of something instead.

Well I have a dream, and its just to get well. Moving to China, have babies, apply for a meaningful job or run a marathon are all just luxuries I long ago stopped dreaming I will ever experience. I´m sick of hearing the "you can be anything you want" bollox. I´m not sitting here because of lack of vision. I want to live with Joe, study development politics and travel, and if was just well that would be exactly what I would be doing. I can´t be anything I want, so stuff the cheery attitude where the sun don´t shine.

Summary and anniversary

So one can think that we did nothing but rummage through rubbish and sanitize old furniture during the time we were in Denmark this time around. Well my mum did, cuz she is like I used to be, not able to relax and always have to have something to do. Even tanning is sort of like a forced activity when u look at her. But I spent alot of time in the hammock (what should I name her?), reading, knitting and listening to podcasts.


Recommendation of the month is "The secret history" by Donna Tartt. I can honestly not say why I liked it so much, maybe because I had friends in uni who also were students of the classics and they too belonged to a slightly different, paralell world that the rest of us didn´t grasp, when they dove in to discussions of Homer, Hesiod, details of Spartan society or ancient greek pronounciation. This tale of a bunsh of spoiled american college students, escalating in to various substance abuse actually even makes me want to give Dante another go.





Gran finally gave in and tried it

Tranekaer castle mill

Mum couldn´t relax and brought home bagfulls of weaving yarn and initiated a 3 day-sanitizing process

Now I didn´t feel too crap as long as I didn´t attempt any longer ventures than down the beach (water was surprisingly warm). On a few occasions we went to larger towns like Rudköping and Svendborg, something that would have been impossible without me being pushed around in a wheelchair. And even then I spent the following 24 hours in near unconciousness when we got back. This scenario seeming to have become the established order of things, and then we´re still talking about the "good" periods.
I celebrated my first anniversary as an ME sufferer on the 18th of july. I dunno how to describe what it feels like anymore. Thanks to various pills I guess I can focus on the few things I can do and in short bursts forget about the bigger picture. While in Denmark I can take being on public display. People stare, and I can honestly not say that I wouldn´t have stared at a woman in dreadlocks being pushed around by her 76-year old grandma, wondering what the heck is wrong with her. But when at home it happens that I need to come along to the local shopping centre, having my mum wheel me around like a packet in a shopping trolley. And then I am terrified that we will meet someone I used to know. What would I say? What would they say? I know I haven´t got anything to be embarassed about, but that is just what I am. I was always the one who never gave up, who could push myself and my body further than anyone else. Now all pushes just make me worse, and when I´m really tired I even look like I´m sporting a bit of a mental disabillity too, only a bit of drooling that´s missing. I prefer to stay at home. This re-defining of self is a work in progress I guess, and maybe I will relax about it in a few years.


A snapshot looking more or less normal, the ferry back to Sweden

My deepest roots to date

So I´m not done waffling about my family and our past whereabouts just yet. There is loads left to write, but lucky for whoever stumbles on this blog my body just can´t take that amount of sitting in front of the computer.

On the day I rummaged through binbags, drawers and closets in the cat-infested house I came across a small wooden box behind a load of linnen in a sealed wardrobe. Thanks to that bundles of newspapers, furniture and boxes had barricaded the doors probably more than a decade ago, nothing smelled worse than had it lied in a sealed environment in any old house. I was looking through alot of things just then so I just opened the box absentmindedly and out fell a few loose sheets of paper. I noticed that the handwriting looked very old, like from those days when you got a smack over the fingers at shcool if you didn´t make the arches of the script connect properly, so I gathered the sheets and brought them down with me for further inspection back at our house at Hou.

My skill at deciffering old calligraphic texts is not helped by that if was in Danish, but when gran later had a read through some of them she noted the date 1890 (the oldest was 1880), and after a bit of thinking we figured out that most of the letters were written by my grans grandmother Frederikke Jespersen, later Frederikke Pedersen, who after she married Mads lived in a section of a rented house in Trenekaer, while he worked with laying down a new roof on Tranekaer castle. She mostly wrote to her mother at "Olgas" in Lohals, or her sister Caroline who never married and died before she turned 30 (how will I find out why? was she ill?). There is never any mention about Frederikkes father, the sailor, and we can then guess that he might have passed away already in the 1890´s.

The letters give a good picture of what everyday existence on the island was like. Life in Tranekaer didn´t seem too easy and Frederikke often thanks for the milk, cheese, eggs (which cost as much as 5 öre a piece!) and vegetables she gets sent from "Olga´s" abundant gardens. Some letters are replies from the sister Line, and she always asks about the children Olga (the one that later named the house), little Carl (my great grandfather) and baby Gugge (or Gustaf who later died in syfilis and was sent home from his gardening shool in a led casket, never to be mentioned among people again).

Frederikke´s handwriting is rather hard to make out, leaving alot of the letters for gran to ponder upon. I´m rather curious and excited to learn more of what they say, as this is the oldest signs of life of my faily yet


The house where Frederikke´s young family lived before they moved to Lohals

Tranekaer castle where Mads worked on the roof

Kunta Kinte vs. Billy the bookshelf

I´ve always found it quite exciting with antiques, and when I was little I would call them "old and nice" (gammal fin), prefering grans auction-house catalouges before comics. And it is a special feeling to know from when and where an object comes. Bringing it to life by using the clues and filling in the gaps with a good portion of imagination. I´m lucky that my gran shares the same interest and never throws anything of the slightest antique value away. I much prefer to eat with cutlery with the initials of my great granparents, or use the handwoven curtains with the monogram of a great aunt rather than buy massproduced IKEA stuff that comes together once and then never can be altered again.

In the mid 1800´s my grans great grandfather was a sailor in the East India trading company and he would spend long periods away at sea. His family lived in the house we call "Olga´s" (see photo in previos post), in the little village of Lohals on the island of Langeland. Now Lohals harbour was far too small to house any big ocean trading ships, so the nearest port to his home was in Svendborg. From there he would take the stagecoach delivering mail all the way to Lohals. Now imagine what sort of luggage a person staying away for maybe a year at a time would have... right, every crewmember had their own wooden chest, a piece of solid craftmanship.

In those days you simply didn´t throw away a perfectly functional piece just because the original purpouse of manufacture had been served, so when he finally stayed on shore, the chest was treated to a set of legs, a decorating top, and a new lock less likely to need to keep out nosey foreigners. It was integrated in the furniture of "Olga´s" and for a long time it was a central piece of the dining room, storing the good china. When my gran was little it had sort of gone out of fashion, and had been moved to her dad´s, (Carl the master bricklayer) work room, storing all his drawings.

In the 50´s, when my gran had moved to Sweden, she discovered on one of her return visits home that her mother, Kirsten, had painted the inside of it pink! Now I don´t know how long that was on fashion, but sometime between then and my early childhood memories, it was redone in white and was again a centre-piece of the lounge.

On my mums side of the family there is a habit of naming objects and places of special significance, and this chest-turned-cabinet forever holds the name Kunta Kinte after the character in the old TV series Roots. Not because it had seen the world engaging in slave trade or anything, but simply because Kunta Kinte simply symbolized something very old for whoever came up with the name.

These days Kunta Kinte stands in grans room in our house on Hou on Langeland, and I know that eventually it will get to my turn to integrate it in to my life and things.

Saving history

Somehow I´m not exactly the same person returning from Langeland. As ill as ever, sure. But somehow my shadow has grown slightly denser. Now I´m not talking of some significant weight-gain or anything, but a greater sense of belonging, of being the current end to a long line of lives, loves and hardships.

There are four of us in the 6th generation with links to the island, and by the looks of things it seems my sister being the most likely candidate for producing a 7th. But lets not get ahead of ourselves.

I´ve always been a sucker for the past, and its blatantly obvious I got this passion from my Danish gran, but its not been until now when I´ve been forced in to a role of sedentism I´ve taken the time to properly listen to the story leading to myself. I´ve scribbled in pads, on napkins and on the back of reciepts, and when I remember to keep it handy, recorded on a dictaphone this past year, and maybe one day it will all boil down to an organized chronicle. But this far it feels like the bottomless well of stories that pour out of my gran, novells in themselves, is an enormous jigsaw of which I still lack an over-arching key.

Thinking of the siv-like memory of my mother I never cease to wonder if she used up the recollection capacity of two generations in one go, but in any case I´m grateful for discovering this before its too late.

My gran Elise Pedersen in the late 1940´s

When we´ve been in front of photo albums back here in Stockholm I´ve always enjoyed hearing of how she moved to Sweden as an 18-year old, working as a maid for the noble af-Ugglas family, how she then already bitten by the dazzling veils of history was allowed to rummage through the manor library among leather-bound volumes from the 17th century, or having the king mother the late Sibylla herself (who never took tea but only tomato juice) hand-sew a large set of towels for my gran´s wedding with my grandad. But it is when we´re in Denmark, when I can lean on the walls that once contained the seasons of life of her stories I feel like my mind fully absorb and nurture them in to pieces of me.



The family farm we call "Olga´s" after my grans aunt who lived and died there


My gran had two older sisters and when their parents and aunt died, they inherited one house each. My grandparents cared for the family farm for as long as the body of my grandad could manage, then they had to let it go. Her oldest sister Ellen and her son Ole stayed on in the house their father built on the island, where the girls grew up. The two of them had very odd perceptions of maintenance and cleanliness, and I dare say suffered all kinds of dilusions, so ending up sharing their humble castle with every stray cat of the region, and their breeding intentions, and soon losing all household priviliges. Now Ole is gone and Ellen has been forced to move down to the care-home of the village. Meaning that the house must be sold and my mum and gran have been rummaging through the enormous health hazard that once was called Janus for the few family heir-looms that hasn´t yet disintigrated under years of treatment to cats claws and excrements.


I wasn´t of much help in that department, but I was up there practicing a bit of the old phenomenology (never thought I´d have any use of that abstract fucker again after finnishing my dissertation), geared out in wellies, hat, torch and plastic gloves. And although the stench was almost unbearable and I came upon two whole dead felines and one rat (the size of a cat) I was able to see glimts of my great grandmother making jam in the kitchen, the family gathered in the living room listening to the 9 pm BBC broadcast during WW2, gran looking out the window of her room or Ellen at work at the loom. Next summer the house will be someone elses, and the bonds to the 5 generations who have called Lohals their home will be almost severed. So I can only proud shoulder the custody of what my family has left and thank for this opportunity to put a face to what can no longer be seen.


My gran´s childhood room

The upstairs hallway

The kitchen










The library

My second home

On the very tip of my summer world

lies the sea behind oceans of Rosehip

Under the thatch time has slowed

mundane pace only visible through binoculars

Squinting I finally begin tracing my island roots

always sharing space with everlasting isopods.