I have read… “The State of Me” (Nasim Marie Jafry)
Just after returning from a wonderful holiday, I noticed some new links to my blog. Imagine my surprise when I found that the author herself of the book “The State of Me” had written a post about my review of her book!! Apparently I am her first non-English reviewer, which I find odd – based on how important I thought this book was I would have imagined far more people writing about it! But then I became guilt-ridden for not commenting on the book in English, after all we now live in the era where authors and readers might actually get in touch and enjoy sharing viewpoints. (This is still new and fascinating to me as a book-lover, although it has happened to me before.)
So I just wanted to make a translation of my original review. It is not a traditional book-review, as I am not a literature-critic I mostly like to write about how I relate to the books I read, not trying to pick them apart and analyzing them. (Please note that my skills in writing English seems to have deteriorated substantially after I got ill, but I hope you might like it after all.)
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The State of Me by Nasim Marie Jafry (blogging here) is a strong and touching story about Helen Fleet who comes down with a stomach infection during a year abroad as a student in France, and gets struck by ME ( link here to an information leaflet about ME in Norwegian removed). In the 1980′s, when she gets ill, very few doctors know about or understand this illness, and much of the book thus tells about her struggle to get an answer to what is wrong with her. Mainly she is bedridden in her parents’ house, and after a long time (years!) she is diagnosed with ME – based on tests showing that she has a Coxsackie B4-virus. Physical tests later shows that her muscles no longer can produce enough energy.
This is a book that first of all is very emotionally hard to read. Helen’s fight to keep a sense of her own identity, her ups and downs with the boyfriend who comes and goes in her life and their struggle to try to save their love touches a deep fear inside me that I think everybody who has ME experiences – the fear of being left by your loved one because you have become too ill to be a good partner.
For 13 years this novel follows Helen’s fight against the illness, and her fight to live, not just to exist.
“I’m always measuring out my energy behind the scenes, but people don’t see it. They see you at a party and think you’re fine, they don’t see you resting all day to be able to go, and being wrecked all next day because you went. They don’t see you leaning on walls at bus stops because you can’t stand for more than five minutes. They don’t see how tired your arm gets after beating an egg. They don’t know you almost always have poison in your calves when you wake up. They don’t see you weeping because you’re so tired of it all..”
This is not always a story that brings you hope, but Helen copes with her illness with humor, great courage and touching ability to go on. That he challenge of relating to the surroundings (family, friends and boyfriend) sometimes poses a greater challenge than handling the physical problems is very recognizable. Of course her mother sometimes gets tired of nursing her own daugther – and humoristically described Helen is not always being an easy patients for her helpers either.
One could comment that sometimes this book seems too long, that there is not a lot of things going on, but that is exactly the point of describing an illness like ME – where getting the mail or preparing a light dish for dinner can be the only (and most important!) thing you are able to do that day – and where learning to feel happy about coping with just those little things that everyone else seems to take for granted (as it feels they do) – because at least that day was not about lying in the darkness struggling with the pain.
I read The State of Me because I am in a process where I wish to understand as much as possible, to be as prepared as possible, to try to find solutions and learn from others’ stories of getting better. In that way this book gave me quite a lot – and a strong sense of recognition. One other effect this book had on me was that I have started to write down some of my history and reflections. If that is something I will just look back on in 15 years time with a shudder, or if I am going to do something more of it I have not yet decided.
I had sworn that this blog should not be a blog about my illness, but it seems that I am not able to leave this subject that I now also has taken an interest in when it comes to the political behind the treatment of patients – how disagreements in the medical community and different interests can stand in the way of what is really best for the patients, and how money and resources ends up in programs that not follow up on what the patients themselves thinks is best. This is also a subject the book gives you insight in.
In August 2007, the National Institute of Health and Clionical Excellence (NICE) published guidelines for the management of ME, which – while acknowledging it can be as disabling as MS or lupus – indicate cognitive behaviour therapy (CBT) and graded exercise (GET) as the primary treatment. In doing so, NICE has blatantly disregarded the biomedical model of the illness in favor of the psychosocial model. There has been widespread condemnation of these guidelines…



Boken begynner med en hendelse hvor en sjåfør stanser bilen på rødt lys i et kryss. Før lyset har rukket å skifte tilbake til grønt, er han rammet av en hvitglødende blindhet. Ganske snart blir også de som hjelper den uheldige sjåføren også blinde, og da epidemien er et faktum og begynner å gripe om seg, velger myndighetene å internere de rammede i et gammelt mentalsykehus. Det er selvfølgelig ikke slutten på smittefaren, og Blindness blir en skremmende og rivende historie om samfunnsstrukturer og mennesker i oppløsning. Størstedelen av historien utspiller seg dog innenfor interneringsleirens vegger, hvor vi følger nærmere et visst antall av de som har blitt rammet av blindhet. En kvinne – øyelegens kone – har av en eller annen grunn unnsluppet blindheten, men utgir seg for å være blind for å kunne følge sin mann. Hennes vitnesbyrd fra interneringen tar oss med gjennom grufulle omstendigheter og opplevelser.
Ja, du er tilgitt hvis du ble litt forvirret nå, men dette handler litt om boken “Bitterfittan” av Maria Sveland, svensk debutforfatter med sterke ord og mye på hjertet. Jeg leste boken i fjor, og husker nok min egen magefølelse bedre enn ordene, når jeg kommer over Ellisivs innlegg. Men det er viktig, det hun spør om. Er dette feministisk? Er det offerfeministisk? Og jeg tenker – hjelp – jeg er ikke så flink med definisjoner at jeg klarer å svare godt på dette. Men jeg kan si noe:




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