Archive | May, 2012

In my own skin – Dans ma peau

26 May

Près du lac de Dienville, en Champagne

On a different day
if I was safe in my own skin
then I wouldn’t feel so lost
 and so frightened
But this is today
and I’m lost in my own skin
“Honestly ok” Dido

 Colonies of ants are gnawing at my right foot. They spare the arch of the foot but avidly chew on the soft area under the toes and on the heel. My foot is burning.
Then nothing along my leg. The ants are gone, so are all sensations. It feels empty, or rather numb like after a local dental anaesthetic.
The thigh is the only parts of my body that seems to belong to me. But appearances are deceptive. It reacts but to an invisible force, shaken by spasms, regular, painful, constant…
All these distorted feelings have inhabited me for so long. They are my constant reminder that something else has invaded my body. But despite the acute pain of the spasms, what I fear most is the numbness. I never particularly liked the shape of my body but I always enjoyed the sensations it gave me.
The muscles that contract in an effort or lengthen and stretch to loosen tension, little by little.
The warmth of a hand before it even touches me. The skin that shivers…
All these beautiful sensations giving pleasure, establishing me in my own body and guiding me are slowing escaping me. I’m afraid to get lost.
So as you slip out of a wetsuit, I unzip and take off my undesirable skin. I’m left alone. The invisible invader is gone, just for the length of a dream.

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Un autre jour,
Si je me sentais en sécurité dans ma propre peau
Alors je ne serais pas aussi perdue
Je n’aurais pas si peur
Mais aujourd’hui
Je suis perdue dans ma propre peau
« Honestly ok », Dido

Des milliers de petites fourmis me rongent la plante du pied droit. Elles épargnent la voute plantaire mais raffolent de la base des orteils et du talon. Mon pied brûle.
Puis, plus rien le long de la jambe. Les fourmis ont disparues, de même que toute autre perception physique. C’est le vide, ou plutôt la même sensation d’engourdissement que l’on ressent après une anesthésie locale chez le dentiste.
Seule la cuisse semble encore m’appartenir. L’apparence est trompeuse. Elle réagit mais sous aux ordres d’un envahisseur invisible, secouée par des spasmes, réguliers, douloureux, incessants…
Ces sensations déformées m’habitent depuis des années et me rappellent à l’ordre. Mais malgré la douleur intense des spasmes, c’est l’engourdissement qui m’effraie le plus.
Je n’ai jamais particulièrement trouvé séduisantes les formes de mon corps mais j’ai toujours aimé les sensations qu’il me procurait.
Les muscles qui se contractent lors de l’effort ou s’allongent, s’étirent et libèrent petit à petit les tensions.
La chaleur d’une main qui s’approche avant même qu’elle ne me touche.
La peau qui se hérisse quand on l’effleure…
Toutes ses sensations qui procurent du plaisir, m’ancrent dans mon propre corps et me guide, m’échappent progressivement. J’ai peur de me perdre.
Alors, comme on enlève une combinaison de plongée, je fais glisser la fermeture éclair et je me dégage de cette peau indésirable. Je me retrouve seule. L’envahisseur invisible a disparu, juste le temps d’un rêve.

Le regard des autres – People gaze

17 May

 

Vous vous rappelez:
 le soufre, le bûcher, le gril…
Ah! quelle plaisanterie.
Pas besoin de gril :
l’enfer, c’est les Autres
J-P Sartre

– « On va prendre un café quelque part ? » demanda Alexandre.
– «  Excellente idée, lui répondit-elle en l’embrassant. Je prendrais volontiers aussi un croissant. » Cécilia, qui de septembre à juillet ne pensait qu’à sa ligne, se permettait toujours de petits écarts en vacances.
Le jour venait à peine de se lever et pourtant les touristes inondaient la promenade. Ils se baladaient insouciants, bras et jambes nus assoiffés de soleil. Ils se croisaient, s’échangeaient en souriant des notes parfumées de tiaré et d’ambre solaire et oubliaient les regards froids qu’ils se jetaient le reste de l’année dans les transports publics.
– « Ça te va ici ? » proposa Cécilia.
– « C’est parfait ! Installe-toi, je vais passer la commande.  Un café et un croissant pour toi ?»
– « Oui merci. » Cécilia s’installa confortablement face à la mer et chaussa ses lunettes noires. Entre la terrasse et la plage, il y avait un petit chemin de sable que longeaient les vacanciers, tapis de plage sous le bras.
– « Ah, elle a oublié les cuisses ! » remarqua Cécilia au passage d’une femme aux cuisses rougies par le soleil.
Et tout en déjeunant, ils continuèrent de regarder les gens passer, notant parfois une erreur vestimentaire par ci, par là, une silhouette mise en valeur…
Cécilia avait toujours aimé observer les autres. Au lycée déjà, elle avait passé de nombreux mercredi après-midi au café à regarder les autres, avec ses amies. Mais à 31 ans, elle ne se gaussait plus des timides ni des complexés ! Son regard s’était adouci. Elle était tout simplement curieuse.
Alexandre se prêtait volontiers au jeu pour lui faire plaisir. Et parce que cela lui faisait du bien de regarder les autres, de prendre conscience de leur existence, une fois par an. Combien de personnes croisait-il tous les jours de la semaine sur le trajet du travail et au bureau ? Des centaines de visages dont le reflet s’effaçait aussitôt de sa mémoire.  Cécilia interrompit alors ses pensées.
-« Tu as vu celle-là ? Comme c’est triste. Il est à peine 10 heures du matin. Je me demande combien d’alcool elle a déjà bu… Elle n’a pourtant pas l’air d’une marginale. »
Une femme avançait péniblement le long de l’allée, titubant légèrement.
-« Il n’y a pas que des marginaux qui boivent ! »
-« C’est vrai, acquiesça-t-elle. Mais à cette heure-ci, c’est quand même rare… Elle a l’air plutôt jeune non ? »
C’est alors que la jeune femme titubante sentit leur regard. Plus ils la regardaient, plus ses pieds se faisaient lourds. « Mon dieu, faites qu’ils arrêtent » pria-t-elle secrètement. « Je sais très bien ce qu’ils pensent. C’est ce que tout le monde croit. Que je suis une alcolo. Et s’ils pouvaient voir mes mains, rien ne les ferait changer d’avis. » songea-t-elle en regardant ses doigts tremblants.
– « Tu as vu, ajouta Cécilia, ses mains tremblent. J’espère que ça ne m’arrivera jamais.»
– « Pourquoi voudrais-tu que ça t’arrive ? » demanda aussitôt Alexandre.
Le jeune femme, arrivée à leur hauteur, les regarda comme si elle voulait leur parler mais continua son chemin, se disant que cela ne servirait à rien de leur dire. Ils ne la croiraient pas. Si peu de personnes savaient vraiment ce qu’est la SEP et elle ne se sentait pas la force de leur expliquer.

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You remember:
the sulfur, the stake, the grill ..
Oh What a joke.
No need to grill:
hell is other people
J-P Sartre

– “Shall we go for a coffee somewhere?” Alexander asked.
– “Good idea, she replied giving him a quick kiss. I’d love a croissant too.”
From September to July, Cecilia was obsessed with her figure but she allowed herself some treats on holidays.
The sun had barely risen but the promenade was already full of tourists. They were strolling around, arms and legs naked, thirsty for sun.  They passed by other tourists, exchanging smiles and fragrant notes of tiara and sunscreen. They seemed to forget all the dirty looks they cast at one another the rest of the year in public transports.
-“What about this place?” Cecilia suggested.
– “It’s perfect! Sit down and I’ll go and order. You want a coffee and a croissant, don’t you?”
-“Yes please.” Cecilia made herself comfortable, facing the sea, and put her sunglasses on. There was a little path between the terrace and the beach. Holidaymakers, beach-mat under the arm, headed for the sand.
-“Ah she forgot the thighs!” noted Cecilia as a woman walked by, her thighs sunburnt.
They kept people gazing as they had their breakfast. They noticed dressing faux-pas here, nice looking bodies there…
Cecilia had always enjoyed watching people. When she was in secondary school, she had spent many Wednesday afternoons with her friends at a café, watching other people. But now that she was 31, she no longer mocked the timid or shy ones. Her gaze had softened. She was just curious.
Alexander played the game to please her. And also because it was good to see the others, to become aware of their existence, once a year. How many persons did he pass every day of the week on his way to work and in the office? There were hundreds of faces, whose reflection elapsed his memory straight away. Cecilia interrupted his train of thought.
-“Did you see this one? It’s sad isn’t it? It’s not even 10 am. I wonder how much alcohol she already drank… She doesn’t look like a dropout though.”
A woman was staggering along the path.
-“It’s not just dropouts who drink alcohol!”
-“True, she admitted. But at this time of the day, it is rare… She looks quite young too…”
That’s when the young woman started to feel their gaze. The longer their gaze, the heavier her feet felt. “Dear God, have them stop looking please” she silently prayed. “I know what they are thinking. Everybody thinks that I’m a boozer. And if they could see my fingers, nothing would ever change their minds” she thought, looking at her shaking hands.
-“Did you see that, Cecilia added, her hands are shaking. I hope this will never happen to me.”
-”Why would it ever happen to you?” Alexander asked straight away.
The young woman was now in front of them.  She looked at them as if she intended to say something but kept walking unsteadily along her path. She thought there was no point trying to tell them. They would not believe her. So few people knew what MS was and she felt too tired right now to explain.

John Lennon at my funeral

16 May

When I am an old woman I shall wear purple
With a red hat which doesn’t go, and doesn’t suit me
And I shall spend my pension on brandy and summer gloves

And satin sandals, and say we’ve no money for butter
Sandra Martzpapier

I guess that’s it. I’m dead! Bereft of life, departed, extinct, lifeless… Je suis morte! The show is over.
When did this happen? I can’t remember anything at all.
But since this is my funeral and I can see it from here, I  can confirm that I have ceased to exist there.
Wow that’s some piece of news, isn’t it? I mean for myself… not for the rest of the world. Although I’m delighted to see so many people attending my funeral.
Mairead, that’s so sweet of you. Do you remember when you asked us to write our own orbituary? I couldn’t do it. Thanks for coming anyway. And there is AnneMarie…  and Pili… chatting away. That’s nice.
So I died in Ireland. That’s weird. Maybe Spain wasn’t the right country for me after all. Funny, I really thought it would be.
But hold on, here is my mum. How come she’s here? And my dad! Come on, you never came to visit me when I was alive. Why do you come now? How? Did you get beamed up?
– “Well Imagine there’s no countries. It isn’t hard to do…
– I beg your pardon? Who said that?
– “ Hi. It’s me John!”
Now that’s bizarre. Is John Lennon really talking to me? We’re both dead alright but I wouldn’t have thought he would notice me here! Maybe I got really famous in my lifetime. Who knows…
– “Hi John. I didn’t expect to meet you here!”
– “Ah you know I am the walrus. Goo goo g’joob! …. Boy you’ve been a naughty girl. You let your knickers down…”
Poor John. He didn’t age well in death… Or marijuana is freely available in Heaven.
I’m still intrigued though. How come I don’t remember anything at all? Maybe my MS got so bad and I suffered complete memory loss. Or, better option: I died aged 100 completely senile. I always loved the poem “When I am an old woman”. Am I wearing purple?
Oops no I didn’t make it that long, unless I had major plastic surgery. By the look of me, I must have died in my forties.
Now that’s a disappointment. And I was going around telling everybody how yoga is great for you and will keep you fit till you’re 90!
You don’t get a refund if you’re not satisfied with your life do you?
I’m seriously frustrated now. I wonder if I made it to Spain though. I was having such a good time planning to move … What happened?
Maybe it was a road accident. Or poison.
Let’s investigate.  I always enjoyed detective novel. I’ll play the detective investigating her own death.
First, I look peaceful. Why did they put so much make-up on my face though? I hate it…
No damage to the head. Hey, is my brain still in? I had said I would give it to the Brain Bank for research. Come on! Get it out of my skull! I want to help science.
Ok something is not right. Too many things don’t fit. I didn’t want to be buried anyway.
Who decided? Mum is that you? Dad?
Oh no, look at that! I’ve got hairy legs!!!! What about the Dignity in Dying?
And what is this bell? Could anybody just switch it off please? I’m trying to investigate my own death… I hate this sound. It reminds me of my ….
-“Please don’t wake me…” , John starts to sing.  “No, don’t shake me. Leave me where I am. I’m only sleeping. Everybody seems to think I’m lazy. I don’t mind, I think they’re crazy…”
… my alarm!

On the sofa

13 May

– “Would you like a glass of wine? I got a Minervois, 2001!” he asks from the kitchen.
– “Hmmm my favorite. Do you need a hand?” I reply, pushing the door ajar, although I know he will decline the offer. Despite his 6 feet 4 body, he fits in perfectly amidst the pans and spices. Stirring to the rhythm of Marvin Gaye.
– “Go and chill out. It will take a while. Moroccan food is like sex, the slower the better.”
– “Stir fries can be quite tasty too… What are you cooking? It smells delicious.”
– “Scallops with cumin, saffron and ginger, à ma façon.”
– “Hmm sounds like a nice evening ahead.” I say, bringing the wine glasses to the living room.

He soon follows me and makes some space among the red and gold cushions. We sit down. The old sofa offers no resistance. We sink in.
– “At what time do you need to get up” He asks snuggling me closer into his arms. I take a deep breath. He smells like sunshine and argan oil. I love these moments when everything goes so smoothly…
– “I have to be in Baggot street at 9 am for acupuncture. So I guess I should leave around 8.30 to be sure…”
His embrace eases off, just a little bit, as he says “So you’re till going to acupuncture?”
– “Here we go again…” I move slightly away.
– “I’m only asking” He replies.
– “Come on. It wasn’t a question. It was an criticism.” The music stops. I get up.
– “There’s no need to be so defensive! Nobody is criticizing you! I just don’t get it. Why do you spend your money on acupuncture? You should rather go back to the neurologist. You were supposed to go back ages ago!”
– “I won’t!” My voice is louder than I meant to. “If I go back, he’ll put me on some of his new treatment. I know what they are like. They don’t work for me!”
– “Oh that’s true.” He sneers. “I forgot you know better than the neurologist.”
“I know my body better than he does. Yes!” I snap.
– “I’m glad about that!” If it was an attempt to humour me, it fails. I check his CD collection.
– “What do you want to listen to?”
Without looking up, he replies “Whatever you want.”
I choose Buddha Bar and press the button. But I cannot let go.
– “You’ve never tried acupuncture anyway so how can you say it doesn’t work?” “Was that a question? I’m not saying it doesn’t help to quit smoking or sleep better but you have MS, not an allergy!” His turn to get up.
-“Thanks for reminding me. I had nearly forgotten. My tone is still defensive but I try to explain as calmly as possible, one more time. Listen, I tried injections for 3 years. It was a nightmare. I was a zombie. It’s NOT for me! I know it works for some people but not for me. It brings me down. I want to enjoy my life and I cannot do that if I’m wrecked and depressed.”
– “But there are new medicines. Why don’t you at least try?” This sounds like a genuine question now.
– “Why can’t you just let me decide what’s best for me?” I ask.
– “Maybe I just want to help!” His tone has become softer again. Mine too as I reply.
-“But it doesn’t help me! Do you know how often I read about this miraculous cure here and there? I’ve been told: “Why don’t you to go to the Netherlands for this new intervention? Why don’t you try bees’ stings along the spine? Oh I shouldn’t forgot the miraculous remedy with something to do with a sheep… I prefer to look after myself the way I want. I believe in alternative medicine. It’s my health and I want to be in charge. I won’t let anybody use me as a guinea pig.”
– “Mais oui Simone!” He teases me.
– I have to laugh. I take his reference to Simone de Beauvoir as a compliment. “It has nothing to do with being feminist or independent! It’s just that I have grown very suspicious of pharmaceutical companies. There is a lot of money involved in the health sector. They keep announcing that they have found a cure for this or that but I think it’s also a way to bring the price of their shares up…  I’m not accusing the people but I don’t trust the system. But please, I don’t want to talk about all this now. Can we just let it be and enjoy your wonderful food?”

Without a word, he fills up our glasses and we sink back in the old sofa.

Beyond – Au-delà

13 May

There is gold hidden somewhere…

You suppose you are the trouble
But you are the cure
You suppose that you are the lock on the door
But you are the key that opens it
Rumi

They look like little round stickers on my brain. It reminds me of a bingo game! Number 18? Sensory symptoms on the right side of your body. Number 3? Balance issues. The neurologist keeps counting. “4, 5, 6…” My heart sinks a little deeper each time he shows another of these little stickers on the computer screen. “There is one here too. So that’s 7.” My mouth gets drier. “Another one in the neo cortex. That’s 8.”
Finally, the counting is over.
– “8 lesions. That’s really good! When were you diagnosed?” he asks cheerfully.
– “ February 4th 2001.”
– “You have a good memory!”
– “ Maybe that was an important day!” I reply but he doesn’t seem to notice the touch of sarcasm.
– “ I must say you’re doing pretty well. Actually it is quite exceptional. We would usually expect far more lesions after so many years. You did a lumbar puncture, didn’t you?”

Before I could answer, he finds the information in my file. No, it was not a misdiagnosis. The relief shows on his face. Disappointment on mine.”You are lucky.” He says.
Did I really expect him to tell me “Oops sorry we made a mistake. You’re fine. There’s nothing wrong with your immune system”? No I didn’t so let’s be positive. Why do doctors always bring out the worst in me?  It is good news after all. But it is not only luck!  I know there is no point mentioning the strict diet I’m on. He doesn’t believe in it. But, encouraged by his good humour, I venture: “I’m convinced yoga helps”.
He doesn’t even look at me, just shrugs “Whatever!”
Little Etna wakes up in my stomach. I can feel her warm lava…
I look at the famous neurologist! I look at him and all I can think is: “I hate your double chin. I hate your fat little fingers ready to switch on the voice recorder. Are you so bloody sure of yourself and your medicine? I hate your pills. Is that all you have to offer? To destroy my own immune system and become a zombie so that the MS slows down? I hate your bare room. I hate your waiting room full of moaning distorted bodies. Yes I hate, I love, I ache, I feel. I’m not just a pack of cells…”

Not sure if i want to shout or cry… But there is no time for talk -big or small- anyway. The fat little fingers press the button. “The patient, aged 45, was diagnosed with a relapsing-remitting form of Multiple Sclerosis in 2001 after two episodes and a lumbar puncture.  The MRI scan shows 8 lesions, after 12 years…. “

“Yes whatever! “ is all I can think. And i repeat to myself “I’m more than i appear to be. All the world’s strength and power rests in me.”
Of course I don’t really hate him. I know he means well. I just wish he would look beyond the body at everything that doesn’t show up on MRI scans.

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Tu penses être le problème
Mais tu es le remède
Tu supposes être la serrure sur la porte
Mais tu es la clé qui l’ouvre
Rumi

On dirait de petites gommettes rondes sur mon cerveau. Ça me fait penser au bingo ! Numéro 18 ? Symptômes sensoriels sur le côté droit de votre corps. Numéro 3 ? Problèmes d’équilibre. Et le neurologue continue de compter. « 4, 5, 6… » Mon cœur s’effondre un peu plus chaque fois qu’il pointe une gommette sur l’écran de son ordinateur. « Il y en a une ici aussi. Ça fait 7. » Ma gorge s’assèche. « Une autre sur le néo cortex. Ça fait 8. » Il arrête enfin de compter. « 8 lésions. C’est un très bon résultat !
– Quand avez-vous été diagnostiquée ? » me demande-t-il joyeusement.
– « Le 4 février 2001. »
– « Vous avez bonne mémoire ! »
– « C’était peut-être un jour mémorable pour moi ! » Il ne semble pas remarquer la note sarcastique.
– « Je dois avouer que ce sont plutôt de bons résultats. Je dirais même qu’ils sont exceptionnels après tant d’années. Il devrait y avoir beaucoup plus de lésions. Vous avez bien fait une ponction lombaire ? »

Avant même que je puisse répondre,  il trouve cette information dans mon dossier. Non il ne s’agit pas d’une erreur de diagnostique. Le soulagement se lit sur son visage. La déception sur le mien.
– « Vous avez de la chance » me dit-il.

Pensais-je vraiment qu’il allait me dire « Oh désolé, on a fait une petite erreur. Vous êtes en parfaite santé. Votre système immunitaire fonctionne parfaitement. » Non, je ne le pensais pas. Alors soyons positive ! Je ne sais pas pourquoi mais les docteurs parviennent toujours à faire ressortir les plus mauvais côtés de ma personnalité ! C’est une bonne nouvelle après tout. Mais ce n’est pas juste la chance. Ça ne sert à rien de mentionner mon régime. Il n’y croit pas. Mais, encouragée par sa bonne humeur, je me hasarde « Je suis convaincue que le yoga m’aide à rester en forme. »

Il ne me regarde même pas. Il hausse simplement les épaules « Oui peu importe!».

Je sens aussitôt Etna se réveiller dans mon estomac. Sa lave commencer à bouillir. Je regarde le célèbre neurologue. Je le regarde et tout ce qui me vient à l’esprit est : « Je déteste ton double menton. Je déteste tes petits doigts potelés prêts à saisir le dictaphone. Tu es tellement sûr de toi et de tes traitements ! Je déteste tes médicaments. C’est tout ce que tu as à me proposer ? De détruire mon propre système immunitaire, devenir une zombie pour ralentir la SEP ? Je déteste ton cabinet stérile. Je déteste ta salle d’attente pleine de corps plaintifs et déformés. Oui je déteste. J’aime. J’ai mal. Je ressens. Je ne suis pas un simple tas de cellules… »

Je ne suis pas sûre de vouloir crier ou pleurer… De toute façon, on n’a pas le temps de discuter. Les petits doigts potelés appuient déjà sur le bouton. « La patiente, âgée de 45 ans, a été diagnostiquée en 2001 après deux épisodes et une ponction lombaire. L’IRM montre 8 lésions, après 12 années… »

« Oui peu importe ! » est la seule chose qui me vienne à l’esprit. Et je me répète mentalement “Je suis plus que je ne parais. Toute la force et la puissance du monde sont en moi.”
Bien sûr je ne le déteste pas réellement. Je sais qu’il a de très bonnes intentions. J’aimerais simplement qu’il regarde au-delà du corps tout ce que l’IRM ne montre pas.

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