Mitgefühl

10 Nov

Over the past three weeks, i suffered from severe neck, shoulder and arm pains. I found out it was not MS related at all. I have two trapped nerves in the cervicals, plus the first signs of cervical arthrosis (a bit early!!!) as well as an inversion in the cervicals most likely due to a 15 years old trauma!

Although i am now fine with it and see it as another opportunity to learn more about yoga therapy, my first reaction was quite negative. I just wanted to cry “Why me???? Why do i have to fight again? Why can’t i just have one thing to deal with?”  In this moment,  i just needed someone to give me a hug and tell me how wonderful i am etc etc.

What i needed was what Germans call “Mitgefühl”, to be with someone who “feels with” me. Not someone who makes me feel inadequate by saying “Come on that’s nothing, everybody has problems…” But no pity neither,  no “oh poor you”. Just someone putting himself or herself in my shoes. I needed to share my burden.

Of course MS is not the end of the world and all the persons with MS i have met are beautiful strong persons. But when other stressful events come on top of it, facing them may first seem impossible.

I am very lucky to have amazing friends who know exactly when i need their “Mitgefühl” but i wished they were a bit closer now… To my beautiful friends in Ireland and my wonderful cousins: i miss you.

To those of you who also have MS and sometimes feel like the challenges are just too much, don’t stay on your own, join MS support groups, get in touch…

Jumping or not jumping?

25 Oct

site

Have you ever wondered what your life purpose is? Have you ever looked at the mirror and asked yourself: “Why are you here? What are you meant to do?”

For many years, I thought that our main purpose in life is to keep it going: have children, develop our potentials, always do the best we can without hurting anybody etc. I guess this general all-encompassing aim was good enough. Having MS pushed me to slowly re-assess this vision.  Would I be ready to have children knowing I might not be able to look after them or that they might also get MS? Is doing one’s best always good? What about security?

My parents never cared whether you got an A or a C at school as long as you did your best.  But if you got a A and they thought you could have got an A+, they were disappointed. I started to enjoy going as far as I could.  People sometimes think I am competitive but the truth is I just want to find out how far I can go.

I was told that, to live well with MS, I need to spend only 70 or 80% of my energy and to keep the rest for recuperating.  Gosh, this has been the hardest part of having MS so far and I still fall into the trap. In the first phase after diagnosis,  I still wanted to do my best but my leitmotiv was “security”. I searched for job / financial security because I thought that was the best way to ensure independence. At least, if you have financial security you can have an apartment that is fully equipped no matter what disability you suffer from. You can have a special car. You can afford whatever is available to make living with a disability easier.

I nearly made it.  I finished my PhD, got a permanent job with an educational publisher… for a few months and then it went bankrupt.  I became self-employed. Back to insecurity!

Anyway, isn’t “security” just an illusion? Nobody can ever be secure. Nothing is secure. Do I sound like I am trying to console myself? Maybe I am but I am also trying to motivate myself to take a jump, leave the publishing world behind and fully immerse into yoga therapy. If nothing is secure, why not dedicate my entire time to something I believe in and that make sense? And do my best, unconditionally, whole-heartedly. Nothing more, nothing less.

PS: I am now working on a website: http://www.yogatherapy4ms.com.
The logo was designed by my friend Blanca. Isn’t it great? I know the photo of my dog doesn’t belong there but she’s so cute…

There will be days like this

29 Sep

When no one steps on my dreams there’ll be days like this When people understand what I mean there’ll be days like this When you ring out the changes of how everything is Well my mama told me there’ll be days like this

I woke up this morning with a sharp pain in my right thigh. It was painful to lay down, even more painful to walk. The big thigh muscle was contracted as hard as a stone. I spent half an hour attempting to loosen it, massaging, stretching and crying.

In fact the whole week has been challenging.  In itself, this is not a real problem. When you’ve had MS for 15 years, you are used to the down phases. However, If I “admit” feeling tired and low, eight out of ten persons’ first reaction is to blame it on me: “You do too much!”

Let me clarify: I am not judging or accusing individual people here. What strikes me is that this is actually the most common reaction! As if driven by an instinct…

Why?

Maybe it is human nature. We simply need an explanation, a cause and effect relation. You are tired because you work too much. How reassuring our world is when everything can be explained! We need things to make sense, don’t we?

But nobody realizes how harsh it is to say that. Not just the blaming but also the underlying assumption that since you have MS, there is only so much you can do. I remember reading somewhere that “Disability resides in the society, not in the person”. By telling me what I can do, and what I cannot do, you “disable” me.

Why is it so difficult for us to accept that sometimes things just are this way? Sometimes you cannot find an explanation. Your vision is blurred today because it is. Full stop. Living with MS teaches us to accept.

But not to give up!

Because we also know that there are good days too. When everything falls into place like the flick of a switch. When you don’t need to worry.

I wish you all one of these days!

Dehli airport: saris and Converse / Arrivée à Dehli: saris et Converse

26 May

April 28th 2011: I am leaving Delhi airport after two months near Rishikesh, the capital of yoga. Two years and two days later, I’m back. As I get on the shuttle bus between terminal 3 and terminal 1D, my Indian memories pop up again. The colours, the faces, the traffic, the buzz, everything blows on my face together with a gust of warm wind.
Beside me is an Indian businessman living in the States who has come to visit his family. Impeccably dressed in his expensive suit, he carries huge plastic bottles. He explains to me they contain holy water.
Looking out of the window, I notice that rickshaws have nearly disappeared among motorcycles and brand new cars. Traffic will never stop to amaze me! How can so many vehicles drive past each other without clashing? They slide like eels, avoiding cows, carts and frantically beeping the horn. If you wish to use the roads in India, learn to surrender!
The traffic is heavy. Two, three or four people fit on one motorcyle. Two years ago, I was impressed by women sitting behind the driver, both legs to one side, in their beautifully colourful saris. So elegant and at ease despite the noise, the turning, speeding, twisting…
But a large number of women are now wearing bright skinny jeans and converse, riding bikes like men. ‘I don’t need anybody when on my Harley Davidson’, as Brigitte Bardot was singing in the 1960s…
My flight to Indore doesn’t leave for another two hours. I am sitting in the Waiting area of Terminal 1D. Like in a movie theatre. Catching a glimpse of Indian life. Here too, traditonal saris and converse blend together. No in-between.
Will it be the same in Indore?

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Arrivée à Dehli: saris et Converse

28 avril 2011, je quitte Dehli après deux mois à Rishikesh, la capitale du yoga. Deux et deux jours plus tard, je suis de retour. Alors que je monte dans la navette qui relie le terminal 3 au terminal 1D, mes souvenirs de l’Inde rejaillissent. Les couleurs, les visages, la circulation, l’énergie, tout m’explose en plein visage en même temps qu’un vent chaud et sec.
À côté de moi, un homme d’affaires est venu rendre visite à sa famille en Inde. Impeccable dans son costume de haute qualité, il transporte de larges bouteilles en plastique. Il m’explique qu’elles contiennent de l’eau bénite.
Par la fenêtre, je vois que les pousse-pousse ont presque disparu parmi les motos et les voitures flambant neuves. La circulation ne cesserz jamais de m’étonner! Comment autant de véhicules peuvent-ils passer côte à côte sans se heurter? Ils glissent comme des anguilles, évitant les vaches, les charrettes en klaxonnant avec frénésie. Si vous voulez prendre la route en Inde, mieux vaut apprendre à vous abandonner complètement!
La circulation est dense. Deux, trois, voire quatre personnes tiennent sur une moto. Il y a deux ans, j’ai vraiment été impresssionnée par les femmes assises à l’arrière de la moto en amazone, portant de magnifiques saris colorés. Si élégantes et à l’aise malgré le bruit, les virages et les accélérations…
Mais un grand nombre de femmes portent désormais des jeans serrés aux couleurs acidulées et des Converses. Elles enfourchent les motos comme les hommes. ‘Je n’ai besoin de personne en Harley Davidson’ chantait Brigitte Bardot dans les années soixante…
Mon vol pour Indore n’est prévu que dans deux heures. Je m’installe dans la salle d’attente du terminal 1D. Comme dans un cinéma. J’entrevois la vie en Inde. Ici aussi, les saris traditionnels cotoient les Converse. Deux extrêmes. Aucun milieu.
Est-ce que ce sera la même chose à Indore?

Going home with thee

31 Jan
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The Banshee (the Messenger from the Otherworld) by Henry Meynell Rheam.

I am going home with thee, to thy home, to thy home,
I am going home with thee, to thy home, to thy home of autumn of spring and of summer
I am going home with thee, thy child of my love to thy eternal bed to thy perpetual sleep.
(Celtic prayer)

englishIn an earlier entry (Fear), I talked about Fear, the graceful multi-faced dancer who covers her face to hide her true nature: the Fear of Death.

I can feel her move in my stomach. Each of her elaborate gestures feels like a kick. She swirls, turns, jumps, rests but never leaves.

She is so deeply ingrained in me that I sometimes wonder if I was born with it.

But, no, I don’t think so.

I believe that Death is such a taboo in our society that we sow the seed of Fear ourselves. We don’t talk about death although, like it or not, one day it will be your turn. We prefer to entertain ourselves watching people die, be murdered, killed, executed on big plasma screens, thinking “it’s only a movie!” Even if the soul might not be afraid, the ego is.

Sometimes I wish I could have a little taste of Death, touch her, feel her, drink her… just enough to know…  a little sample to give me an idea.

Maybe Death is as wonderful and warm as a hot bubble bath or as tasteless as an English beer (no offense my friends but beer shouldn’t be stale and warm!)!

What will happen when she is finally at my door? Will I let her in or will she break in? Will I be ready? Will I hear the Bean Si, the fairy woman, cry for me? How much of my brain will the MS have destroyed by then?

Surprisingly enough, we are bombarded with books on how to live our lives but not on how to die. Apart from the Tibetan Book of the Dead, I haven’t seen many… And what about Death Coaches? (I don’t mean buses, but guides!) Unless you are religious and confide in the parish priest, whom do you turn to for guidance and support?
When the time comes, will you tell me about beauty and goodness?

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French Dans un texte précédent (Peur), j’ai parlé de Peur, la danseuse pleine de grâce aux visages multiples qui se couvre la face pour cacher sa vraie nature : Peur de la mort.

Je la sens bouger dans mon estomac. Chacun de ses gestes élaborés ressemble à un coup de pied. Elle tourne, virevolte, sautille, se repose mais jamais ne part.

Elle est ancrée si profondément que je me demande parfois si je suis née avec elle.

Mais non, je ne le crois pas.

Je pense que la Mort est un tel tabou dans notre société que nous semons nous même les germes de la Peur. Nous ne parlons pas de la Mort bien que, que ça nous plaise ou pas, notre tour viendra. Nous préférons nous divertir en regardant des gens mourir, se faire tuer, assassiner, exécuter sur nos écrans plasma en nous disant que « c’est seulement du cinéma ! » Même si l’esprit n’a pas peur, l’ego lui, est terrifié.

J’aimerais parfois goûter la Mort, la toucher, la sentir, la boire… juste assez pour savoir… un échantillon pour m’en faire une idée.

La Mort est peut-être aussi chaude et douce qu’un bain bouillonnant ou aussi insipide qu’une bière anglais (sans vouloir offenser mes amis british mais la bière devrait être fraiche et mousseuse !) Que va-t-il se passer quand elle sera enfin à ma porte ? La laisserai-je entrer ou forcera-t-elle la porte ? Serai-je prête ? Entendrai-je la Banshee, la Dame Sans Merci, pleurer pour moi ? Quels dégâts la sclérose aura-t-elle déjà faits ?

Ce qui me surprend, c’est que nous sommes bombardés de livres nous enseignant comment vivre notre vie, mais aucun nous explique comment mourir. À part le Livre tibétain de la vie et de la mort, je n’en ai pas vu beaucoup…

Et qu’en est-il des Coach de la mort? À moins d’être religieux et de pouvoir se confier à un prêtre, vers qui se tourner? Qui apporte un soutien?

Quand l’heure sera venue, qui sera là pour me parler de beauté et de bonté?

Ready, steady, go! – À vos marques, prêts, partez !

30 Dec

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englishI love New Year, new resolutions… Life seems full of possibilities. I’m full of energy, ready to conquer the world!

In 2012, I decided to move to Spain, and here I am, in beautiful Andalucia. In 2013, I’ll embark on the Overcoming MS program. Right now, I feel that this is a much bigger challenge than  changing countries.

The OMS program was developed by an Australian doctor who himself has MS. It is based on the proof that changing your lifestyle has tremendous positive impacts on the evolution of your MS. The program is holistic. It includes regular exercise, 30 min daily meditation and 15 min sunlight a day. It also includes a meat-free, dairy-free, egg-free, low saturated fat diet.

Indeed, saturated fats trigger a “fight” reaction in the immune system, whereas unsaturated fats trigger a “flee” reaction, which is obviously best when you have an autoimmune disease. This diet follows the same principles as the standard immune modifier treatments, but it requires discipline. Especially since no “deviation” is allowed…

One of my problems, as usual, is that “forever” seems far too long!!! When I stopped smoking, I tricked myself by saying “No worries, you don’t stop forever. You’ll have another one… but on your 80th birthday!” It has worked very well so far…

Should I try it with cheese and avocados? Maybe.

Another major issue is to decide “How badly do I want to fight MS?” “Am I ready to give up nice food?” And that is where I’m completely wrong. I don’t have to give up nice food. I just have to be more “creative” as my friend Jorin told me. Jorin is an amazing vegetarian chef (check her blog if you need a proof: http://ConsciousFoodChoices.com) and I’m so lucky to be able to count on her support and advice.

So here I go, I have my blender, I have Jorin’s advice, I have the energy. So let’s do it!

Good bye mature goat’s cheese. Good bye strong blue Roquefort… See you on my 80th birthday, a birthday of blue cheese with red wine and a cigarette…

Happy New Year to you all!

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FrenchJ’adore le Nouvel An, les bonnes résolutions… La vie semble pleine d’opportunités et moi, je suis pleine d’énergie, prête à conquérir le monde !

En 2012, j’avais décidé d’aller vivre en Espagne et me voici ici, en Andalousie. En 2013, c’est décidé. Je me lance dans le programme  OMS (Vaincre la SEP). En ce moment, le défi me parait bien plus grand que celui de changer de pays.

Le programme OMS a été développé par un médecin australien, lui-même souffrant d’une SEP. Il s’appuie sur l’idée, vérifiée, qu’un style de vie adapté a d’énormes effets positifs sur l’évolution de la SEP. Il s’agit d’un programme holistique qui inclut des exercices réguliers, 30 minutes de méditation quotidienne et 15 minutes d’exposition solaire. Il inclut également un régime sans viande, sans produits laitiers, sans œufs et bas en graisses saturées.

En effet, les graisses saturées incitent le système à « attaquer » alors que les graisses non saturées le poussent à « fuir », ce qui est souhaitable en cas de maladie auto-immune mais nécessite une certaine discipline. D’autant plus qu’aucun écart n’est acceptable.

Comme d’habitude, un de mes problèmes, est que « pour toujours » me semble beaucoup trop long !!! Quand j’ai arrêté de fumer, je me suis convaincue que « Ce n’est pas grave. Tu n’arrêtes pas pour toujours. Tu fumeras une autre cigarette… Mais pour ton 80 ème anniversaire ! » Jusqu’à présent, ça marche…

Devrais-je essayer la même astuce avec le fromage et les avocats ? Peut-être.

Un autre problème est de décider « Jusqu’où es-tu prête à aller pour combattre la SEP ? » « Suis-je prête à abandonner la bonne nourriture ? » Et c’est là que je commets une erreur. Je ne dois pas abandonner la bonne nourriture. Je dois faire preuve de créativité, comme me l’a dit mon amie Jorin, qui est une chef végétarienne exceptionnelle. (son blog en est la preuve : http://ConsciousFoodChoices.com). J’ai la chance de pouvoir compter sur son soutien et sur ses conseils.

Me voici donc. J’ai mon super blender. J’ai les conseils de Jorin. J’ai l’énergie. Alors, c’est bon, je suis prête!

Au revoir mon tender chèvre. Au revoir mon Roquefort bleu et fort… On se revoit pour mes 80 ans, pour fêter un anniversaire avec du bleu, du rouge et une cigarette…

Bonne année à vous tous!

Cultivating a Positive Attitude – Cultiver une attitude positive

21 Oct

One of the statues in Suryalila

“When disturbed by negative thoughts,
opposite [positive] ones should be thought of.”
Sri Gurudev’s translation of the Yoga Sutras

Last week, I didn’t feel too good. My immune system was apparently fighting something and dormant symptoms awakened. I felt tired and slightly depressed.  As always in such cases, I remembered the first advice the MS nurse gave me: “Only use 70% of your energy. Keep the rest to manage MS.” Since I didn’t want to take days off work, I gathered and saved up my energy to meet my deadlines.
Luckily I could spend these “tricky” days in Suryalila, my favourite yoga retreat centre. And I soon got better.
However, I have to admit that frustration crept up… I was right here and but I couldn’t attend my yoga teacher’s classes. My right leg was numb and I had twisted my ankle recently… I felt too weak and thought that I would either exceed the 70% limit I was trying to respect or hurt myself if I joined the vinyasa morning class.
Maybe I was wrong, maybe it would have been ok but how do you know when your 70% energy level has been used up? I decided to play it safe.
However, although I didn’t do any asana, I still practised some form of yoga. I practised cultivating positive attitude.  There are different techniques but I focused on Pratypaksha Bhavana, which consists of shifting one’s perspective. So each time, I had a negative thought because of MS, I added an item on my mental list of all the things I should be thankful for, like being in love with a wonderful caring man, being surrounded by great people, living where I want to live, having a job that I enjoy and can do from anywhere or going for a walk under a blue sky…
For me, being positive is not about believing in a miraculous recovery or a cure but about replacing negative thoughts – which we all have – with positive ones. It is not always as easy as it sounds as the negative thoughts sometimes keep coming back, especially when the body aches or when the future looks bleak. But for me, it has been worth the effort so far. It “unstuck” me and helped me create a more positive image of myself. Yoga also offers other techniques to cultivate a positive attitude and as for the asanas, the more you practise, the easier it gets.

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 La semaine dernière, je n’étais pas en super forme. Mon système immunitaire s’efforçait apparemment de combattre une infection et quelques symptômes se réveillèrent. Fatiguée, je me sentais légèrement déprimée. Comme d’habitude dans ces cas-là, je me souvins du premier conseil que me donna l’infirmière: “Il faut utiliser seulement 70% de votre énergie. Vous aurez besoin du reste pour gérer la SEP.” Comme je ne voulais pas prendre de congé, j’ai rassemblé mon énergie et l’ai consacrée à mon travail.
Heureusement, j’ai pu passé ces journées “difficiles” dans mon centre de yoga préféré, Suryalila. Et je me suis rapidement sentie mieux.
Néanmoins, je dois avouer que je me sentis également frustrée. J’étais ici mais je ne pouvais assister au cours de vinyasa de ma prof. Ma jambe droite était constamment engourdie et je m’étais tordue la cheville peu de temps auparavant… Je me sentais trop faible et pensais que je risquais soit de dépasser les 70% soit de me blesser.
Peut-être ai-je eu tort. J’aurais peut-être pu suivre les cours mais comment savoir si ce serait trop? J’ai décidé de ne pas prendre de risque.
Mais, bien que je n’aie pas fait pratiqué diverses asanas, j’ai tout de même fait du yoga. J’ai cultivé une attitude positive! Plusieurs techniques existent mais je me suis concentrée sur celle du Pratypaksha Bhavana, qui consiste à changer de perspective. Ainsi, dès qu’une pensée négative liée à la SEP me traversait l’esprit, je songeai à une chose pour laquelle je me sentais reconnaissante. Par exemple, être amoureuse d’un homme merveilleux et chaleureux, être entourée de personnes chaleureuses, vivre où je le désire, avoir un travail qui me plait et qui me laisse libre de voyager, me promener sous un ciel bleu sans nuage…
Pour moi, être positive ne signifie pas croire en une guérison miraculeuse mais remplacer les pensées négatives – que nous avons tous – par des pensées positives. Ce n’est pas toujours aussi facile qu’il n’y paraît surtout quand le corps souffre ou quand le futur semble sombre. Mais pour moi, cela en a, jusqu’à présent, valu la peine. Ça m’a permis de me libérer et aussi de me créer une image plus positive de moi-même. Le yoga propose d’autres techniques pour cultiver une attitude positive et comme pour les asanas, plus on pratique plus cela devient facile.

Rape

23 Sep

First year at university, I’m 18. I have my own studio in the City of Kings, Wars, and Champagne. Life is sweet.
This morning, I attended a lecture on the Elizabethan Times.  Our lecturer is so passionate about it. I always enjoy sitting in the theatre and watch her tell us about the Throckmorton plot and all sorts of intrigues about ugly Elizabeth I.
Then I decided to go and walk around the old centre. The facades, the statues, the streets keep reminding us that Kings were crowned in the cathedral. Rheims is stuck in the past.
But it’s time to go back home and get ready for the next lecture. The next bus to Joliot-Curie is in ten minutes.
I’m daydreaming, wondering what would have happened had Francis Throckmorton’s plan to restore the Catholic Church in England succeed. Wandering about how life used to mean so little in the past….
But I feel someone watching me. I look to my right. A short stocky red-haired man is gazing at me. A shiver runs along my spine. I look away.
When the number 13 to Croix Rouge arrives, he gets on the bus after me. “Come on, it’s just a coincidence”, I try to convince myself. “Maybe he’s attending the same lectures. The campus is so huge.
”Have you ever felt a gaze weigh on you? Like a thick heavy wrap. Blinding you.
The next stop is where I live.
I get off.
I don’t need to turn around. I know he’s there.
Quickly I get in the building. The doors of the lift are open. I run in. Press 4. Too late. He’s in too.
Everything goes fast. He says something. I can’t hear. He grabs me. I fight back. The doors open. I jump out. Hands on my breast. Hands between my legs. He throws me against the wall. And I scream. I scream so loud my voice breaks.
So loud the whole ten-storey building must hear me.
So loud he gets a fright and leave.
So loud but nobody comes. Nobody stops eating their lunch to see what is going on.
This wasn’t rape. There was “close contact but no penetration” but my hands are still shaking when I recall this day. I was so stupid … and so lucky!
My stomach is hurting when I think of the 75000 women raped in France alone in 2011.. How many more didn’t report the crime? How many more attempts to break a woman? In South Africa, 175 women are raped every day… How many would help them?

 

Fear – La Peur

8 Sep

Fear no more the heat o’ the sun; 
Nor the furious winter’s rages, 
Thou thy worldly task hast done, 
Home art gone, and ta’en thy wages; 
Golden lads and girls all must, 
As chimney sweepers come to dust. 
“Fear no more” – William Shakespeare

Since I started this blog, I have received wonderful messages. People I know, people I don’t know, people with or without MS keep telling me how courageous and inspiring I am. It is extremely flattering.! I would to say: keep praising me… I can’t get enough!
But … I am not this strong courageous person you imagine and I apologize if I misled you.  The truth is I AM AFRAID.  Fear has always been beside me, like a faithful shadow. Some people may be followed by Anger, others by Sadness… My companion is Fear.
Fear is like a graceful dancer, wearing different masks. She comes – uninvited – and dances around me. She often comes as Fear of failure and her twin sister Fear of rejection. Sometimes she wears the more discreet mask of Fear of loneliness, or the ambiguous double-sided mask of Fear to love and not to love.  And then Fear to be hurt is never too far. But underneath all these masks there is only one face: Fear to die.
So here I am, in my MS world, caught between a huge shapeless walrus and a multi-faced dancer. Both are very proud and If I ever try to ignore them, they become  stronger. Plus, the stronger my Walrus gets, the stronger Fear becomes too, and vice versa.
I suffered so much from fatigue the first years of my diagnosis. It was horrible., like being nailed down on the floor. You cannot move. Just being is so hard. Everything seems out of reach… But I decided to explore any possible source of energy around me. It’s quite amazing how much energy you can save with an appropriate diet. Mind Power is also amazing and deserves its name…
But like all emotions, Fear is also a source of energy!  Of course we can be transported by love, joy and happiness but the same is true of Fear, Anger or Sadness.  People are able to achieve so much, not always for the benefit of humanity, because of these emotions too.
I wish I were fearless, but Fear, like MS, is part of who I am. It doesn’t define me but certainly influences me.  And I’m not particularly courageous, just an expert in Energy Saving!

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Ne crains pas les rayons du soleil

Ni les rages hivernales

Toi ta tâche est achevée

L’artisanat est révolu, et a pris ses dus

Nos garçons et filles chéris doivent tous

En s’appliquant, venir nettoyer
“Cymbeline”, Shakespeare

Depuis que j’ai commencé ce blog, j’ai reçu de magnifiques messages. Que ce soient des connaissances ou des inconnus, des personnes avec ou sans SEP, tous disent me trouver courageuse et voient en moi une source d’inspiration. Je suis flattée et j’aimerais pouvoir leur dire « Continuez à me couvrir de louanges… ! »
Mais… je ne suis pas cette femme courageuse qu’ils imaginent et je m’excuse si je les ai trompés. En vérité, J’AI PEUR. La Peur a toujours été à mes côtés, telle une ombre fidèle. Certains sont flanqués de la Colère, d’autres de la Tristesse… Ma compagne est la Peur.
La Peur est une danseuse pleine de grâce qui porte différents masques. Elle arrive, à l’improviste, et se met à tournoyer autour de moi. Elle me rend souvent visite déguisée en Peur de l’échec avec sa jumelle la Peur du rejet. Parfois elle porte le masque plus discret de la Peur de la solitude ou le masque ambigu à double face de la Peur d’aimer et de ne pas aimer. La Peur d’être blessée n’est alors jamais très loin. Mais sous tous ces masques se cache seulement un visage, celui de la Peur de mourir.
Me voici donc, dans mon monde la SEP, prise entre une énorme Morse informe et une danseuse aux multiples visages. Toutes les deux sont extrêmement fières et si jamais je tente de les ignorer, elles se fâchent et je ressens alors leur présence.  Plus la Morse devient forte, plus la Peur se fait puissante, et vice versa.
J’ai tellement souffert de la fatigue les premières années de mon diagnostic. C’était horrible. Elle me clouait littéralement au sol. Impossible de bouger. Tout semble hors de portée. J’ai alors décidé d’exploiter toutes les sources d’énergie possibles et imaginables. C’est incroyable l’énergie que l’o peut économiser en suivant un régime approprié.  Le Pouvoir de l’esprit n’est pas moins prodigieux et mérite bien son nom.
Mais comme toutes les émotions, la Peur est également source d’énergie ! Bien sûr, nous sommes transportés par l’Amour, la Joie et le Bonheur mais on peut l’être aussi par la Peur, la Colère ou la Tristesse. Nous sommes aussi capables de réaliser des exploits, certes pas toujours pour le bénéfice de l’humanité, sous l’emprise de ces émotions.
J’aimerais être sans peur, mais la Peur, tout comme la SEP, font partie de moi. Elles ne me définissent pas mais elles m’influencent. Et je ne suis pas particulièrement courageuse, seulement une experte en économies d’énergie !

Yoga and MS – Yoga et SEP

11 Aug

I slip into my body as I would into clothes. My legs, my arms… I try to adjust.  But most of the times, I feel trapped by weird sensations. It feels too tight as if I was wearing a  corset or too loose, as if I were diluted in space, without contour.

But it’s not just the pains and sensory symptoms that you need to accept, it’s the body as a whole. How can you feel at ease in a body that destroys itself? How not to be resentful? You can concentrate your anger on a virus and wish to kill it but in which direction do you aim your anger when the immune system fails?

I remember one day in particular. I had just been diagnosed and had recently started yoga. I hesitated before going to my class because I had no sensation in my left leg. It “worked” properly but I couldn’t feel it. The sole of my foot was also almost entirely numb. But I really enjoyed Tony’s class and thought I should give it a try. Everything went better than I expected. Until Tony suggested we do Ardha Chandrasana, the half-moon pose in which you stand on one foot and one hand. Of course, I fell. I was too frustrated, too scattered to keep my balance. But not just on the left leg! I had the same issues with the other “healthy” side. I think that’s when I realized that a long battle was ahead of me: against frustration, fear, despondency…

Practising yoga is for me a huge challenge! But one of the biggest benefits is to learn how to tame your body and emotions, little by little, as if they were wild animals. Of course yoga has other benefits. Asanas help fighting the progressive weakening of the muscles but personally, I need yoga to feel better in my body.

I keep fighting but I’m learning. I learn to listen, respect and read the warnings. And who knows, maybe one day, I’ll feel really free. Free to move on beyond the body.

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 Je me glisse à l’intérieur de mon corps, comme je me glisserais dans un vêtement. Je   me glisse dans les jambes, dans les bras, je m’ajuste. Mais la plupart du temps, des sensations étranges m’empêchent de me sentir libre. Je me sens à l’étroit, dans un corset, ou au contraire diluée dans l’espace, sans contour.

Mais  ce ne sont pas uniquement les douleurs et les symptômes sensoriels qu’il faut accepter, c’est le corps dans son ensemble. Comment se sentir bien dans son corps quand il s’autodétruit ? Comment ne pas lui en vouloir ? On peut concentrer sa colère sur un virus et l’attaquer en retour mais vers où l’orienter quand le système immunitaire faillit?

Je me souviens d’un épisode en particulier. Je venais d’être diagnostiquée et j’avais débuté le yoga très peu de temps avant. Ce jour-là j’hésitais à y aller car je n’avais aucune sensation dans ma jambe gauche. Elle « fonctionnait » normalement mais je ne la sentais pas. La plante de mon pied gauche était également quasiment insensible. Mais j’aimais vraiment bien les cours de mon prof Tony et je décidais donc de tenter ma chance. Tout se passa mieux que prévu. Jusqu’au moment où Tony nous proposa la position de la demi lune, Ardha Chandrasana, dans laquelle on est en appui sur une jambe et un bras. Bien sûr, je suis tombée. J’étais trop frustrée, éparpillée, pour tenir en équilibre sur une jambe. Mais pas seulement sur la jambe gauche ! J’ai eu les mêmes problèmes du côté droit ! Je crois que c’est à ce moment-là que je me suis vraiment rendu compte qu’une longue bataille s’annonçait. : contre la frustration, la peur, le découragement…

Pratiquer le yoga est pour moi un énorme défi ! Mais l’un des bénéfices essentiel du yoga est justement d’apprendre à apprivoiser son corps et ses émotions, petit à petit, comme un animal sauvage. Évidemment, le yoga a de nombreux autres bienfaits. Les asanas aident à ralentir l’affaiblissement progressif des muscles. Mais personnellement, j’ai besoin du yoga surtout pour me sentir mieux dans mon corps.

Je continue à batailler mais j’apprends. J’apprends surtout à écouter, respecter, déchiffrer les avertissements.  Et qui sait, peut-être qu’un jour je pourrais me sentir vraiment libre. Libre d’aller au-delà du corps.

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