Unknown – Inconnu

24 Jun

Life is beautiful
I keep telling you and it’s killing me
Says the flower
And then she dies
Prévert, “Soleil de Mars”

I wasn’t there for my brother when he died. Not the way I should have been. I was so wrapped into my own grief that, despite being there physically, I didn’t see him pass away. I only saw myself losing him.
We never talked about death at home, as if it only happened to others. Sweet comfortable denial…
Until Life wakes you up.
She must have realised I was in profound denial: I discovered I might have MS the same day my brother found out he had a tumour.
So much for soft wake-up calls!
Still, I wasn’t fully awake when my brother left.
And this keeps haunting me.

Maybe having multiple sclerosis has been a blessing in disguise. Of course, I wish I hadn’t MS. Of course, I am scared of becoming blind, unable to talk or to reason, or to move… But for me MS is not the end. It is a beginning. It grabbed me out of my cocoon and it is teaching me how to die, that is how to live.
When I was diagnosed, I was told it usually takes a few years to “come to terms” with having an incurable disease: “You have to mourn the death of your health and of your dreams.”
But I’m not sure this helps. It only feeds your fear, which grows and grows. It stops your from looking ahead, from stepping forward. Your fear of the unknown disables you. Not the MS.
Like for many people- the Unknown is the essence of my personal challenge:
I remember feeling at a loss in a math class when the teacher said that parallel lines never ever intersect, explaining the concept of “infinity”. I struggled. Imagining outer space upset me even more. My mind couldn’t accept the absence of boundaries. I couldn’t go beyond the “experienced” or at least “the imaginable” into the Unknown. I needed the security of a beginning and an end.
So no wonder the thought of death would freeze me.
Until I let go.
Until ∞,the infinity symbol, started to symbolize life cycles and became beautiful.
MS is teaching me – or trying to teach me – to surrender to the Unknown and to the beauty of Life and Death.

Ps: I still miss you.

xxxxxxxxxxxxxx

Le vie est belle
Je me tue à vous le dire
Dit la fleur
Et elle meurt
Prévert, “Soleil de Mars”

Je n’étais pas présente quand mon frère est décédé. Pas vraiment, pas comme j’aurais dû l’être. J’étais tellement emmitouflée dans mon propre chagrin que je ne l’ai pas vu s’en aller. J’ai seulement vu que je le perdais.
Nous ne parlions jamais de la mort à la maison, comme si elle n’arrivait qu’aux autres. Le doux confort du déni…
Jusqu’au jour où la Vie vous réveille.
Elle a dû se rendre compte de mon profond déni : j’ai découvert que j’avais très semblablement une SEP le jour même où mon frère a appris avoir une tumeur.
Vous parlez d’un réveil en douceur !
Et pourtant, je n’étais toujours pas éveillée quand mon frère s’en est allé.
Ce souvenir me hante.

Peut-être que la SEP a quelque chose de bon, après tout. Bien sûr, j’aimerais ne pas l’avoir dans ma vie. Bien sûr, j’ai peur de perdre la vue, la capacité de parler, de raisonner ou de bouger… Mais la SEP n’est pas une fin. C’est un début. Elle m’a soulevée de mon cocon et elle m’apprend à mourir, c’est-à-dire à vivre.
Quand j’ai été diagnostiquée, on m’a dit qu’il faut en général plusieurs années pour apprendre à gérer une maladie incurable. « Vous devez faire le deuil de votre santé et de vos rêves. »
Mais je doute que cela aide. Cela ne fait qu’alimenter les peurs, qui grossissent à vue d’œil. Cela vous empêche de regarder devant vous, d’avancer. La peur de l’inconnu vous handicape. Pas la SEP.
Comme pour beaucoup d’autres personnes, c’est l’Inconnu qui est l’essence de mon défi personnel. Je me souviens d’un cours de maths. Le prof nous disait que jamais des droites parallèles ne se croiseraient, expliquant le concept d’ « Infini ». J’étais perdue. Je bataillais. Imaginer l’espace me troublait encore davantage. Mon esprit ne pouvait tout simplement pas accepter l’absence de limites. J’étais incapable d’aller au-delà du vécu, ou du moins de l’envisageable, et d’imaginer l’inconnu. J’avais besoin d’un début et d’une fin pour me rassurer.
Pas étonnant donc que la simple idée de la mort m’ait complètement bloquée.
Jusqu’à ce que je lâche prise.
Jusqu’à ce que ∞, le symbole de l’infini, ne devienne petit à petit symbole des cycles de la vie.
La SEP m’apprend, ou du moins tente de m’apprendre, à m’abandonner à l’Inconnu et à la beauté de la Vie et de la Mort.

Ps: Tu me manques toujours.

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8 Responses to “Unknown – Inconnu”

  1. Mairéad Whyte June 24, 2012 at 12:02 pm #

    Reading this brings tears of beauty to my eyes. For two reasons: firstly, the beautiful understanding you gain in life, an inspiration to everyone who reads this and everyone who knows you; secondly, because this is so soulful, if someone doesn’t know you, then they should, you have the ability to shine the light for others.

    Thank you for sharing your soul-filled journey, if the world was full of others like you, we would indeed find a tranquil place to be.

    Your honesty and gentleness is inspiring as always.

    Mairead.

    • tamingthewalrus June 24, 2012 at 12:28 pm #

      And your support and encouragements are really motivating, as always. Merci.

  2. Libby June 24, 2012 at 12:18 pm #

    I want to thankyou for this post – what you have said seems to be very important for me to hear. In my own experience of MS, it is the fear that is disabling, even more so than the MS. And yet – living with an unknown future is what all human beings need to learn to do. I have been diagnosed for two years now, and have been grieving my health – but you are right in suggesting that is not necessarily helpful and can amplify the fear of the future. BTW I live in Australia and the animal that I equate with MS is a Bunyip. I wonder if you have heard of them? The Bunyip is a mythical creature that bears some resemblance to a walrus! Interesting. Thanks for this Blog … it is really helpful to read on my own journey.
    Libby

    • tamingthewalrus June 24, 2012 at 12:27 pm #

      Hi Libby. THANK YOU SO MUCH. I’m so delighted if my post helps you. I have been diagnosed 12 years ago but i can still remember how hard the first years were. So i wish you lots of courage & strength on your journey. Véronique
      Ps: I didn’t know the Bunyip. And i had to laugh when i saw the drawing. I can see why you chose it!!!

      • Libby June 24, 2012 at 12:38 pm #

        I am glad you are encouraged. I really enjoy your blog .. and I think my bunyip is glad know of the existence of your walrus 🙂

  3. Lee-Anne June 24, 2012 at 4:03 pm #

    Oh my god this is a beautiful post. Thank you for sharing.

  4. Marie Devitt June 29, 2012 at 10:26 am #

    This is the most beautiful thing that I have ever read. It has brought tears to my eyes. You are such an incredible person and you are a true inspiration. This has made me sit up and really be grateful for everything in life x

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