Devant le renforcement de mes sympt\u00f4mes et l\u2019apparition de nouveaux, il devenait imp\u00e9ratif de mettre de l\u2019ordre dans ma maladie, si sournoise, dans mon corps et dans ma t\u00eate de plus en plus fatigu\u00e9s.<\/p>\n\n\n\n
D\u00e9finitivement, il me fallait rencontrer d\u2019autres malades.<\/p>\n\n\n\n
Contact pris avec APAISER S&C, Patricia pour ma r\u00e9gion. Au premier \u00e9change, je comprenais qu\u2019il s\u2019agissait d\u2019une marraine, d\u2019une grande s\u0153ur, d\u2019une amie \u2026 Motivation renforc\u00e9e de rencontrer les membres de l’association, ce samedi 11 Octobre \u00e0 Itxassou. Proximit\u00e9s temporelle et g\u00e9ographique, un petit miracle, pour moi de Biarritz\u00a0!<\/p>\n\n\n\n
La veille, la fatigue, plombante, naus\u00e9euse, d\u00e9nervante, \u00e9cervelante \u2026 m\u2019\u00e9tait annonc\u00e9e.<\/p>\n\n\n\n
Le samedi, pour l\u2019auberge espagnole, j\u2019oubliais ma tarte aux figues dans laquelle j\u2019avais mis toute ma meilleure intention et mon envie de partager. Arriv\u00e9e sans elle, mais avec ma syringo cach\u00e9e au mieux derri\u00e8re mon sourire, ma tristesse certaine au c\u0153ur, j\u2019\u00e9tais d\u00e9termin\u00e9e \u00e0 \u00eatre l\u00e0 malgr\u00e9 tout. Ils \u00e9taient quelques-uns d\u00e9j\u00e0 amis, leurs regards et leurs sourires, j\u2019\u00e9tais au bon endroit. Je d\u00e9couvrais physiquement Patricia, \u00e9videmment aimable, empathique, sereine.<\/p>\n\n\n\n
D\u2019autres sont arriv\u00e9s bien plus tard. Apr\u00e8s qu\u2019ils ont trouv\u00e9 la force et le temps d\u2019arriver. Voil\u00e0 bien un caract\u00e8re de vie des malades de syringo ou de Chiari, les montres et les chronom\u00e8tres au placard, seule boussole un \u00ab barro-doloro-energico-m\u00e8tre \u00bb.<\/p>\n\n\n\n
Le caf\u00e9 et les biscuits pour l\u2019accueil, les mots et les paroles vites fluides, toute \u00e9nergie convoqu\u00e9e, toute douleur \u00e9touff\u00e9e, la fraternit\u00e9 install\u00e9e \u2026<\/p>\n\n\n
\n<\/figure>\n<\/div>\n\n\n
Tous assis, une premi\u00e8re pr\u00e9sentation, les \u00e9changes pouvaient commencer. Tout d\u2019abord, la parole est donn\u00e9e aux aidants. Quel courage\u00a0ces aidants\u00a0! Ils m\u00e8nent leur propre vie et soutiennent celle de l\u2019autre. Quelle beaut\u00e9 ce couple, elle a subi 12 interventions, il \u00e9tait l\u00e0 au d\u00e9but, il est encore l\u00e0, il sera l\u00e0 \u00e0 chaque fois. L\u2019aidant, c\u2019est l\u2019amour et la maladie en partage, avec son lot de vexations, privations, solitudes, sentiment d\u2019impuissance \u2026 Je savais que le partage, c\u2019est donner. Mais c\u2019est aussi prendre\u00a0!<\/p>\n\n\n\n
L\u2019AIDANT ACCEPTE DE PRENDRE DE LA SOUFFRANCE DE L\u2019AUTRE.<\/p>\n\n\n\n
Je venais seulement de le comprendre moi, ex-aidante pour ma maman et mon petit fr\u00e8re !<\/p>\n\n\n\n
Ensuite, la parole a \u00e9t\u00e9 attribu\u00e9e \u00e0 chaque malade. Des t\u00e9moignages aux larmes mais si g\u00e9n\u00e9reux. Et toujours quelque chose dit comme \u00ab\u00a0J\u2019y suis arriv\u00e9\u00a0\u00bb, \u00ab\u00a0C\u2019est dur mais je me bats\u00a0\u00bb, du combat, pas de r\u00e9signation, des yeux mouill\u00e9s et des sourires aux l\u00e8vres et plus que survivre<\/p>\n\n\n\n
DES MALADES VIVENT AU DELA DE LEUR MALADIE<\/p>\n\n\n\n
Dans cette salle, toutes les couleurs de la vie, sauf le blanc car personne n\u2019\u00e9tait transparent, sauf le noir car personne n\u2019\u00e9tait lugubre. Chacun a pu raconter son histoire, son savoir, \u00e9changer des informations. J\u2019ai trouv\u00e9 un auditoire libre, sans retenue, bien intentionn\u00e9. Il me semble que la reconnaissance et le respect qui nourrissent APAISER S&C permet \u00e0 chacun d\u2019\u00eatre le malade le plus l\u00e9gitime \u00e0 se vivre avec sa maladie.<\/p>\n\n\n\n
Puis le moment du repas s\u2019est propos\u00e9, non l\u2019heure, je vous l\u2019ai dit, pas d\u2019horaire chez ces malades\u00a0! C\u2019est que la faim pouvait bien attendre, les maux trouvaient leurs mots et rien n\u2019y pouvait c\u00e9der\u00a0! Le repas a \u00e9t\u00e9 install\u00e9 en son temps. Gargantuesque\u00a0!!! J\u2019ai finalement mang\u00e9 sans culpabilit\u00e9.<\/p>\n\n\n\n
Ce samedi, j\u2019ai \u00e9cout\u00e9 et l\u2019on m\u2019a \u00e9cout\u00e9e. J\u2019ai souri et l\u2019on m\u2019a souri.<\/p>\n\n\n\n
Et j\u2019ai trouv\u00e9 ce que j\u2019\u00e9tais venue chercher, mes sympt\u00f4mes, ma fatigue. C\u2019est bien cela la syringomy\u00e9lie.<\/p>\n\n\n\n
Mais bien plus. J\u2019ai trouv\u00e9 de l\u2019amiti\u00e9, de la bienveillance, de l\u2019apaisement. J\u2019ai trouv\u00e9 APAISER S&C.<\/p>\n\n\n\n
Apaiser panse les \u00e2mes et les \u00e2mes peuvent alors panser leur corps et penser leur vie. Je suis rentr\u00e9e chez moi avec ma syringo au dos, aux jambes, \u00e0 l\u2019estomac, aux jambes, au visage. Et surtout, je suis rentr\u00e9e chez moi avec quelque chose de tr\u00e8s chaud au c\u0153ur, APAISER S&C<\/p>\n","protected":false},"excerpt":{"rendered":"
Lorsque j\u2019ai \u00e9t\u00e9 diagnostiqu\u00e9e d\u2019une syringomy\u00e9lie, j\u2019ai imm\u00e9diatement recherch\u00e9 une association de malades. J\u2019ai trouv\u00e9 APAISER S&C, association d\u2019aide pour les malades souffrant de syringomy\u00e9lie et de Chiari. Certainement parce que l\u2019on est habitu\u00e9 a beaucoup de promesses non tenues, j\u2019\u00e9tais dubitative d\u2019APAISER, un peu forte cette suggestion d\u2019apaisement\u00a0! Mais voil\u00e0 mon histoire.<\/p>\n","protected":false},"author":1,"featured_media":8614,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[36],"tags":[],"class_list":["post-8611","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-temoignages"],"yoast_head":"\n
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