Grief de la personne que j’étais avant la maladie chronique

Assis au bout de mon lit, il me fait soudainement basculer sur la poitrine comme une tonne de briques. Ma lèvre tremble, je peux sentir la boule dans ma gorge et je dois m’arrêter avant que les larmes coulent. Je me bats pour mettre mes chaussettes et rapidement je me rappelle que ma vie n’est pas et ne sera jamais ce qu’elle était. Il m’a fallu un certain temps pour pleurer la perte de mon ancien moi, puis encore plus longtemps pour réaliser que c’était ce que je faisais. Deuil.

Et tout comme le chagrin, peu importe combien de temps vous aide à guérir, vous n’avez jamais vraiment fini de pleurer. J’ai perdu des êtres chers au cours des années, des gens très spéciaux pour moi, et je pense à eux tous les jours. Maintenant que les années ont passé, ça ne fait pas autant de mal de se souvenir d’eux, de penser à eux et aux beaux souvenirs que j’ai partagés avec eux. Cependant, je suis parfois pris au dépourvu. Je vais voir les friandises préférées de mon nana dans le magasin et je vais les ramasser, et ça me frappe comme un éclair. Ma nana n’est plus là. C’est quand ça fait mal le plus – quand juste une petite seconde vous oubliez cette perte.

C’est un processus similaire avec ma condition. Maintenant que je l’ai traité pendant près de 10 ans, il est devenu plus facile d’accepter mes limites, mais de temps en temps, j’aspire à ce que j’avais. J’oublie que j’ai des limites et dès que je me souviens des choses que je ne peux pas faire … C’est quand la boule me frappe à la gorge et que mes yeux s’abreuvent parce que c’est la douleur très réelle et crue encore une fois. C’est la première fois que j’entends les nouvelles, c’est la blessure et la confusion une fois de plus et c’est déchirant.

C’est un genre différent de chagrin. Cela ressemble presque à un égoïste, mais il est là et je pense que la plupart des personnes atteintes d’une maladie chronique y font face. Nous traversons les étapes du chagrin – le déni, la colère, la négociation, la dépression et l’acceptation – mais cela tend à être un cycle sans fin, tout comme la maladie.

Toutes les étapes se succèdent rapidement: vous niez votre maladie, vous vous exposez à votre limite absolue, et vous ressentez une telle colère lorsque vous luttez pour suivre les autres ou effectuer des tâches simples. Vient ensuite la négociation: si je devais simplement être en meilleure santé, si je faisais plus d’exercice, si je mangeais moins de merde, méditais plus … Mais peu importe ce que vous faites, vos maladies ne disparaîtront pas. La réalisation de cela amène la dépression, ne se sentant pas assez bien, se sentant inutile et impuissante jusqu’à ce que finalement et heureusement vous le fassiez boucler à nouveau l’acceptation. Chaque fois que je fais le cycle, je le fais plus rapidement et dure plus longtemps. Cela ne veut pas dire que je suis content de ma maladie, mais ça me va. Cela fait partie de moi maintenant et, pour la plupart, je l’accepte – de la même manière que, même si ma grand-mère me manque de tout mon cœur, je me suis réconciliée avec sa perte.

Quand je pense à ma grand-mère et à combien elle me manque, je pense aussi à quel point j’étais heureux de la connaître en premier lieu, d’avoir été aimée par elle et d’avoir de merveilleux souvenirs que personne ne peut m’enlever. Quand je pense à ma polyarthrite rhumatoïde, je dois aussi voir les aspects positifs. J’ai plus que j’ai perdu. Ma maladie m’a changé, mais elle ne m’a pas réduit. Cela m’a rendu plus empathique envers les autres, m’a rendu plus fort, a fait de moi un combattant et, plus important encore, il m’a montré à quel point ma famille et mes amis m’aimaient.

Parfois, je vais attrister mon vieux corps et pleurer la vie normale et sans douleur que j’aurais pu avoir. Mais pour l’essentiel, je serai là pour tirer le meilleur parti de ce que j’ai – ce qui, en y réfléchissant, est plus que suffisant.

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