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"Dans la souffrance, il peut y avoir beaucoup d'amour", proclame Claire, atteinte d'une maladie neuro-dégénérative - Valeurs actuelles

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class="yoast-schema-graph">{"@context":"https://schema.org","@graph":[{"@type":"NewsArticle","@id":"https://www.valeursactuelles.com/clubvaleurs/lincorrect/dans-la-souffrance-il-peut-y-avoir-beaucoup-damour-proclame-claire-atteinte-dune-maladie-neuro-degenerative#article","isPartOf":{"@id":"https://www.valeursactuelles.com/clubvaleurs/lincorrect/dans-la-souffrance-il-peut-y-avoir-beaucoup-damour-proclame-claire-atteinte-dune-maladie-neuro-degenerative"},"author":{"name":"David Blanchard","@id":"https://www.valeursactuelles.com/#/schema/person/4aa862d45535e8096251cd9336bc8ff3"},"headline":"« Dans la souffrance, il peut y avoir beaucoup d&rsquo;amour », proclame Claire, atteinte d&rsquo;une maladie neuro-dégénérative","datePublished":"2024-11-29T09:00:29+00:00","dateModified":"2024-11-29T09:00:29+00:00","mainEntityOfPage":{"@id":"https://www.valeursactuelles.com/clubvaleurs/lincorrect/dans-la-souffrance-il-peut-y-avoir-beaucoup-damour-proclame-claire-atteinte-dune-maladie-neuro-degenerative"},"wordCount":1367,"commentCount":0,"publisher":{"@id":"https://www.valeursactuelles.com/#organization"},"image":{"@id":"https://www.valeursactuelles.com/clubvaleurs/lincorrect/dans-la-souffrance-il-peut-y-avoir-beaucoup-damour-proclame-claire-atteinte-dune-maladie-neuro-degenerative#primaryimage"},"thumbnailUrl":"https://www.valeursactuelles.com/assets/uploads/2024/11/1000005688.jpg","keywords":["combat","euthanasie","fin de 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Comment réagiriez-vous ? Claire Dierckx, elle, a choisi, non sans combat, non sans révolte et souffrances, d'accepter, d'aimer et d'oser vivre, vivre jusqu'au bout. C'est ce choix de la vie, là où son père finira par préférer l'euthanasie, qu'elle confie dans un témoignage saisissant, profond, qui offre des réflexions pénétrantes sur la souffrance et la maladie.\r\n\r\nL'ataxie spino-cérébelleuse de type 7. Une maladie qui transforme petit à petit son hôte en poupée de chiffon sans équilibre, à la vue brouillée et à la parole difficile. Présente dans la famille de Claire Dierckx depuis deux siècles telle une malédiction, elle en frappe certains membres telle une roulette russe. Les médecins, en attendant de trouver un traitement, « espèrent surtout la voir disparaître grâce au diagnostic prénatal » et donc en supprimant le bébé porteur. Pourtant, rien n'indique que la personne atteinte va développer des symptômes ni qu'elle transmettra le gène…\r\n​Désespoir, colère et peur\r\nSon père découvre en être atteint en 1998, lorsqu'elle avait 11 ans. Véritable « déflagration dans la famille », ce diagnostic n'est pas accepté, accentuant le désespoir et la colère de son père, qui se coupe progressivement de ses proches, famille, amis, communauté religieuse. Il développe les premiers symptômes peu de temps après et « la peur s'est installée à la maison ». Dans cette famille de magistrats belges, la maladie était, depuis toujours, taboue et la fragilité, proscrite. Il est alors frappant de voir les différences de trajectoire entre Claire et son père, ce qu'elles nous disent de la façon de traverser la souffrance.\r\n\r\nFace à un père en révolte, la jeune fille préfère le déni quand, à 19 ans, les premiers symptômes se manifestent chez elle et sa jumelle (ses trois frères ne les développeront pas). Elle repousse le test génétique requis pendant trois ans. Lors d'une retraite de jeunes dans le désert marocain, ce déni vole en éclats tout comme sa colère jaillit. À cette désespérance qu'elle crie, le prêtre animant la retraite lui dit cette phrase qui lui servira de guide dans l'acceptation de sa maladie : « Il n'y a pas de réponse à la question de la souffrance. Mais, dans la souffrance, il peut y avoir beaucoup d'amour. » Contre la noirceur du désespoir et du refus, elle change de perspective et choisit de consentir. « On ne peut éviter de souffrir mais on peut décider comment vivre cette souffrance. Avec audace, sans craindre de déranger, j'essaye d'accueillir la souffrance, d'accueillir la vie et de la rendre la plus belle possible. Pour y parvenir, j'ai suivi les conseils du pape François : “Arrête de te demander pourquoi, demande-toi plutôt pour qui.” Pour l'amour. » Et cet amour, pour cette jeune fille qui renoue avec la foi catholique de son enfance, c'est Dieu.\r\n​L'euthanasie comme une mascarade\r\nAvec la force de son acceptation et la détermination de vouloir vivre, et vivre vraiment, une vie pleine d'amour, la jeune fille accepte de faire les tests qui confirment sa maladie. S'ensuivent quelques années en mission humanitaire auprès des plus pauvres à Cuba avec l'ONG Points-Cœur, puis, à son retour en Belgique, une installation dans une colocation solidaire Lazare, qui réunit jeunes actifs et sans-abri, association pour laquelle elle finit par consacrer tout son temps de travail grâce à un patron très compréhensif. En fil rouge, amour et don de soi, alors que la maladie continue sa progression et que son autonomie ne cesse de se réduire. Face à cette posture, celle de son père, toujours en révolte et, comme c'est compréhensible, épuisé par la maladie qui le grignote depuis de longues années. À 56 ans, il demande l'euthanasie, au grand désespoir de sa fille.\r\n\r\nIl est frappant de mesurer, en lisant ce témoignage, l'inanité de la loi belge sur l'euthanasie. Loi qui pourrait devenir prochainement similaire en France. En effet, il ne se passe que six semaines entre la demande de son père et l'euthanasie effective. Trois entretiens seulement en visio (!) avec une psychologue suffiront pour avoir l'accord et la signature de deux médecins chargés de l'euthanasier. Claire dit avoir vécu les quatre jours précédents « comme une mascarade ». Avant la piqûre létale, c'est un déjeuner en famille, des adieux, des embrassades, puis son père monte dans sa chambre pour se faire tuer deux minutes après. On mesure la violence d'une mort si rapide et aseptisée pour lui et pour ses proches, notamment pour ses filles à qui cela renvoie que la vie ne vaut pas la peine d'être vécue jusqu'au bout avec cette maladie-là.\r\n​Je n'ai vu que violence dans l'euthanasie\r\nLe point de vue de Claire, concernée à double titre en tant que proche d'une personne euthanasiée et malade elle-même, est éloquent : « Pendant longtemps, je n'ai été ni pour ni contre l'euthanasie. Je m'abritais derrière le respect de la volonté de ceux ou celles qui font ce choix. Après avoir vécu au plus intime la mort organisée de Papa, je ne peux plus rester dans cette forme d'indifférence. […] Je m'insurge contre la dignité proclamée d'une mort soi-disant douce. Je n'ai vu que violence dans ce processus. » « Et moi, que va-t-il m'arriver quand je deviendrai encore plus dépendante ? Comment ferai-je si je n'ai autour de moi que des personnes qui n'ont rien d'autre à me proposer que la mort ? »\r\n\r\nPar son choix d'affronter la souffrance avec amour, Claire rend, dans son ouvrage, un bouleversant hymne à la vie et à la fragilité, qui peut faire écho et porter nos malades, croyants comme athées : « Accueillir la vie qui nous est donnée est une occasion d'amour. Si je succombe à mon désespoir, je me prive de tant de rencontres, de beaux moments. Jusqu'à la fin, il peut y avoir quelque chose à vivre. Une parcelle de trésor inattendu. C'est toute la beauté du mystère de la vie. […] La vie est un combat quotidien et il ne faut pas craindre d'être un poids pour l'autre. Avec cette maladie, je n'arrête pas de demander de l'aide et mon sentiment d'être un poids ne fait qu'augmenter. Je pense souvent au mot de sainte Bernadette de Lourdes répondant à ses sœurs qui la traitaient de poids : “Pour qu'une pendule fonctionne, elle doit avoir un poids !” Nous sommes tous des “pendules”, nous pesons les uns sur les autres et nous avons besoin d'eux.\r\n\r\nContrairement à ce que l'on pense souvent, la vulnérabilité est une force parce qu'elle est une voie pour la rencontre, la joie, la faiblesse. La petitesse ouvre le cœur de l'autre et ensemble, on est plus fort. C'est ainsi que la souffrance peut être féconde. J'ai besoin de personnes qui m'encouragent et m'accompagnent dans l'audace de vivre plutôt que de compatissants qui m'indiquent la sortie ! Au choix de ma mort, je préfère l'audace de vivre. »\r\n\r\nLa jeune fille qui, lors d'une conférence sur la valeur de la vie, même diminuée, rencontrera son mari Marc, offre un petit livre touchant, où chacun trouvera de quoi méditer sur le sens de la vie, de la souffrance et de la mort. Elle nous le rappelle : « Plus je “dégénère” et sens la vie s'échapper, plus je me sens vivre. L'amour transforme tout. »\r\n\r\nL'Amour coûte que coûte, de Claire Dierckx, Les Éditions du Cerf, 120 pages, 15 €."},{"@type":"WebPage","@id":"https://www.valeursactuelles.com/clubvaleurs/lincorrect/dans-la-souffrance-il-peut-y-avoir-beaucoup-damour-proclame-claire-atteinte-dune-maladie-neuro-degenerative","url":"https://www.valeursactuelles.com/clubvaleurs/lincorrect/dans-la-souffrance-il-peut-y-avoir-beaucoup-damour-proclame-claire-atteinte-dune-maladie-neuro-degenerative","name":"\"Dans la souffrance, il peut y avoir beaucoup d'amour\", proclame Claire, atteinte d'une maladie neuro-dégénérative - Valeurs actuelles","isPartOf":{"@id":"https://www.valeursactuelles.com/#website"},"primaryImageOfPage":{"@id":"https://www.valeursactuelles.com/clubvaleurs/lincorrect/dans-la-souffrance-il-peut-y-avoir-beaucoup-damour-proclame-claire-atteinte-dune-maladie-neuro-degenerative#primaryimage"},"image":{"@id":"https://www.valeursactuelles.com/clubvaleurs/lincorrect/dans-la-souffrance-il-peut-y-avoir-beaucoup-damour-proclame-claire-atteinte-dune-maladie-neuro-degenerative#primaryimage"},"thumbnailUrl":"https://www.valeursactuelles.com/assets/uploads/2024/11/1000005688.jpg","datePublished":"2024-11-29T09:00:29+00:00","dateModified":"2024-11-29T09:00:29+00:00","breadcrumb":{"@id":"https://www.valeursactuelles.com/clubvaleurs/lincorrect/dans-la-souffrance-il-peut-y-avoir-beaucoup-damour-proclame-claire-atteinte-dune-maladie-neuro-degenerative#breadcrumb"},"inLanguage":"fr-FR","potentialAction":[{"@type":"ReadAction","target":["https://www.valeursactuelles.com/clubvaleurs/lincorrect/dans-la-souffrance-il-peut-y-avoir-beaucoup-damour-proclame-claire-atteinte-dune-maladie-neuro-degenerative"]}]},{"@type":"ImageObject","inLanguage":"fr-FR","@id":"https://www.valeursactuelles.com/clubvaleurs/lincorrect/dans-la-souffrance-il-peut-y-avoir-beaucoup-damour-proclame-claire-atteinte-dune-maladie-neuro-degenerative#primaryimage","url":"https://www.valeursactuelles.com/assets/uploads/2024/11/1000005688.jpg","contentUrl":"https://www.valeursactuelles.com/assets/uploads/2024/11/1000005688.jpg","width":1024,"height":472,"caption":"Atteinte d'une maladie neuro-dégénérative, Claire Dierckx transmet un massage lumineux d'espérance, aux malades comme aux bien-portant. 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Dans un témoignage poignant, Claire Dierckx nous montre que la vulnérabilité et la fragilité peuvent être des forces insoupçonnées.<i> </i> </div> <div class="post__metas"> <div class="post__author"> Par <a href="https://www.valeursactuelles.com/auteur/anne-laure-debaecker">Anne-Laure Debaecker</a> </div> <time class="post__date" datetime="2024-11-29 10:00:29"> Publié le 29 novembre 2024 à 10h00 <span>Mis à jour le 26 novembre 2024 à 13h50</span> </time> </div> </div> <div class="post__thumbnail-container"> <div class="post__thumbnail"><img width="1024" height="472" src="data:image/svg+xml,%3Csvg%20xmlns='http://www.w3.org/2000/svg'%20viewBox='0%200%201024%20472'%3E%3C/svg%3E" data-src="https://www.valeursactuelles.com/assets/uploads/2024/11/1000005688.jpg" class="attachment-post-thumbnail size-post-thumbnail wp-post-image lazy" alt="Atteinte d&#039;une maladie neuro-dégénérative, Claire Dierckx transmet un massage lumineux d&#039;espérance, aux malades comme aux bien-portant. Photo © SP/ EDITIONS DU CERF" decoding="async" data-srcset="https://www.valeursactuelles.com/assets/uploads/2024/11/1000005688.jpg 1024w, https://www.valeursactuelles.com/assets/uploads/2024/11/1000005688-300x138.jpg 300w, https://www.valeursactuelles.com/assets/uploads/2024/11/1000005688-768x354.jpg 768w" data-sizes="(max-width: 1024px) 100vw, 1024px" /></div> <!-- <small><i></i></small> --> <small><i>Atteinte d'une maladie neuro-dégénérative, Claire Dierckx transmet un massage lumineux d'espérance, aux malades comme aux bien-portant. Photo © SP/ EDITIONS DU CERF</i></small> </div> </div> <div class="post__sharing"> Partager cet article sur <button class="socialShare facebook" type="button"><img class="lazy" src="data:image/svg+xml,%3Csvg%20xmlns='http://www.w3.org/2000/svg'%20viewBox='0%200%201%201'%3E%3C/svg%3E" data-src="https://www.valeursactuelles.com/assets/themes/krea-theme/images/facebook-share.svg" alt="Facebook"></button> <button class="socialShare twitter" type="button"><img class="lazy" src="data:image/svg+xml,%3Csvg%20xmlns='http://www.w3.org/2000/svg'%20viewBox='0%200%201%201'%3E%3C/svg%3E" data-src="https://www.valeursactuelles.com/assets/themes/krea-theme/images/twitter-share.svg" alt="Twitter"></button> <button class="socialShare linkedin" type="button"><img class="lazy" src="data:image/svg+xml,%3Csvg%20xmlns='http://www.w3.org/2000/svg'%20viewBox='0%200%201%201'%3E%3C/svg%3E" data-src="https://www.valeursactuelles.com/assets/themes/krea-theme/images/linkedin-share.svg" alt="LinkedIn"></button> <a href="mailto:?subject=Valeurs%20actuelles%20-%20« Dans%20la%20souffrance,%20il%20peut%20y%20avoir%20beaucoup%20d&rsquo;amour »,%20proclame%20Claire,%20atteinte%20d&rsquo;une%20maladie%20neuro-dégénérative&#038;body=https://www.valeursactuelles.com/?p=345527" target="_blank" rel="external nofollow"><img class="lazy" src="data:image/svg+xml,%3Csvg%20xmlns='http://www.w3.org/2000/svg'%20viewBox='0%200%201%201'%3E%3C/svg%3E" data-src="https://www.valeursactuelles.com/assets/themes/krea-theme/images/email.svg" alt="email"></a> <button class="socialShare" type="button" id="shareMobButton"><img class="lazy" src="data:image/svg+xml,%3Csvg%20xmlns='http://www.w3.org/2000/svg'%20viewBox='0%200%201%201'%3E%3C/svg%3E" data-src="https://www.valeursactuelles.com/assets/themes/krea-theme/images/share-btn.svg" alt="Partage"></button> </div> <!-- BLOC STORE --> <div class="post__content gutenberg"> <div class="qiota_reserve"> <!DOCTYPE html PUBLIC "-//W3C//DTD HTML 4.0 Transitional//EN" "http://www.w3.org/TR/REC-html40/loose.dtd"><?xml encoding="utf-8" ?><html><body><p>Vous n&rsquo;avez pas 20 ans et vous venez d&rsquo;apprendre que vous souffrez de la m&ecirc;me <a href="https://www.insb.cnrs.fr/fr/cnrsinfo/maladie-neurodegenerative-une-piste-prometteuse-pour-detruire-specifiquement-les-agregats" target="_blank" rel="nofollow noopener">maladie neurod&eacute;g&eacute;n&eacute;rative</a> que votre p&egrave;re et qui va vous priver, graduellement, de toute autonomie, marche, vue, parole. Comment r&eacute;agiriez-vous ? Claire Dierckx, elle, a choisi, non sans combat, non sans r&eacute;volte et souffrances, d&rsquo;accepter, d&rsquo;aimer et d&rsquo;oser vivre, vivre jusqu&rsquo;au bout. C&rsquo;est ce choix de la vie, l&agrave; o&ugrave; son p&egrave;re finira par pr&eacute;f&eacute;rer l&rsquo;euthanasie, qu&rsquo;elle confie dans un t&eacute;moignage saisissant, profond, qui offre des r&eacute;flexions p&eacute;n&eacute;trantes sur la souffrance et la maladie.</p><a href="https://www.valeursactuelles.com/clubvaleurs/politique/jean-frederic-poisson-euthanasie-une-obstination-mortifere" class="h-flex h-align-items-center h-border-tb h-ptb-15"><h3 class="h3 h-pr-15 alire-link">A&nbsp;LIRE&nbsp;</h3><span class="h3 h-blue">Jean-Fr&eacute;d&eacute;ric Poisson : Euthanasie, une obstination mortif&egrave;re</span></a><p>L&rsquo;ataxie spino-c&eacute;r&eacute;belleuse de type 7. Une maladie qui transforme petit &agrave; petit son h&ocirc;te en poup&eacute;e de chiffon sans &eacute;quilibre, &agrave; la vue brouill&eacute;e et &agrave; la parole difficile. Pr&eacute;sente dans la famille de Claire Dierckx depuis deux si&egrave;cles telle une mal&eacute;diction, elle en frappe certains membres telle une roulette russe. Les m&eacute;decins, en attendant de trouver un traitement, <em>&laquo; esp&egrave;rent surtout la voir dispara&icirc;tre gr&acirc;ce au diagnostic pr&eacute;natal &raquo; </em>et donc en supprimant le b&eacute;b&eacute; porteur. Pourtant, rien n&rsquo;indique que la personne atteinte va d&eacute;velopper des sympt&ocirc;mes ni qu&rsquo;elle transmettra le g&egrave;ne&hellip;</p><h2>&#8203;D&eacute;sespoir, col&egrave;re et peur</h2><p>Son p&egrave;re d&eacute;couvre en &ecirc;tre atteint en 1998, lorsqu&rsquo;elle avait 11 ans. V&eacute;ritable <em>&laquo; d&eacute;flagration dans la famille &raquo;, </em>ce diagnostic n&rsquo;est pas accept&eacute;, accentuant le d&eacute;sespoir et la col&egrave;re de son p&egrave;re, qui se coupe progressivement de ses proches, famille, amis, communaut&eacute; religieuse. Il d&eacute;veloppe les premiers sympt&ocirc;mes peu de temps apr&egrave;s et <em>&laquo; la peur s&rsquo;est install&eacute;e &agrave; la maison &raquo;. </em>Dans cette famille de magistrats belges, la maladie &eacute;tait, depuis toujours, taboue et la fragilit&eacute;, proscrite. Il est alors frappant de voir les diff&eacute;rences de trajectoire entre Claire et son p&egrave;re, ce qu&rsquo;elles nous disent de la fa&ccedil;on de traverser la souffrance.</p><blockquote><p>Contre la noirceur du d&eacute;sespoir et du refus, elle change de perspective et choisit de consentir.</p></blockquote><a href="https://www.valeursactuelles.com/clubvaleurs/lincorrect/la-medecine-a-toujours-combattu-en-faveur-de-la-vie-et-de-la-sante-contre-la-maladie-et-la-mort-assurait-jerome-lejeune" class="h-flex h-align-items-center h-border-tb h-ptb-15"><h3 class="h3 h-pr-15 alire-link">A&nbsp;LIRE&nbsp;</h3><span class="h3 h-blue">&laquo;&nbsp;La m&eacute;decine a toujours combattu en faveur de la vie et de la sant&eacute;, contre la maladie et la mort&nbsp;&raquo;, assurait J&eacute;r&ocirc;me Lejeune</span></a><p>Face &agrave; un p&egrave;re en r&eacute;volte, la jeune fille pr&eacute;f&egrave;re le d&eacute;ni quand, &agrave; 19 ans, les premiers sympt&ocirc;mes se manifestent chez elle et sa jumelle (ses trois fr&egrave;res ne les d&eacute;velopperont pas). Elle repousse le test g&eacute;n&eacute;tique requis pendant trois ans. Lors d&rsquo;une retraite de jeunes dans le d&eacute;sert marocain, ce d&eacute;ni vole en &eacute;clats tout comme sa col&egrave;re jaillit. &Agrave; cette d&eacute;sesp&eacute;rance qu&rsquo;elle crie, le pr&ecirc;tre animant la retraite lui dit cette phrase qui lui servira de guide dans l&rsquo;acceptation de sa maladie : <em>&laquo; Il n&rsquo;y a pas de r&eacute;ponse &agrave; la question de la souffrance. Mais, dans la souffrance, il peut y avoir beaucoup d&rsquo;amour. </em>&raquo; Contre la noirceur du d&eacute;sespoir et du refus, elle change de perspective et choisit de consentir. <em>&laquo; On ne peut &eacute;viter de souffrir mais on peut d&eacute;cider comment vivre cette souffrance. Avec audace, sans craindre de d&eacute;ranger, j&rsquo;essaye d&rsquo;accueillir la souffrance, d&rsquo;accueillir la vie et de la rendre la plus belle possible. Pour y parvenir, j&rsquo;ai suivi les conseils du pape Fran&ccedil;ois : </em>&ldquo;Arr&ecirc;te de te demander pourquoi, demande-toi plut&ocirc;t pour qui.&rdquo; <em>Pour l&rsquo;amour. &raquo; </em>Et cet amour, pour cette jeune fille qui renoue avec la <a href="https://catechese.catholique.fr/outils/expositions-evenements/312816-un-parcours-pour-redecouvrir-la-foi/" target="_blank" rel="nofollow noopener">foi catholique</a> de son enfance, c&rsquo;est Dieu.</p><h2>&#8203;L&rsquo;euthanasie &laquo;&nbsp;comme une mascarade&nbsp;&raquo;</h2><p>Avec la force de son acceptation et la d&eacute;termination de vouloir vivre, et vivre vraiment, une vie pleine d&rsquo;amour, la jeune fille accepte de faire les tests qui confirment sa maladie. S&rsquo;ensuivent quelques ann&eacute;es en mission humanitaire aupr&egrave;s des plus pauvres &agrave; Cuba avec l&rsquo;<a href="http://pointscoeur.org/" target="_blank" rel="nofollow noopener">ONG Points-C&oelig;ur</a>, puis, &agrave; son retour en Belgique, une installation dans une colocation solidaire Lazare, qui r&eacute;unit jeunes actifs et sans-abri, association pour laquelle elle finit par consacrer tout son temps de travail gr&acirc;ce &agrave; un patron tr&egrave;s compr&eacute;hensif. En fil rouge, amour et don de soi, alors que la maladie continue sa progression et que son autonomie ne cesse de se r&eacute;duire. Face &agrave; cette posture, celle de son p&egrave;re, toujours en r&eacute;volte et, comme c&rsquo;est compr&eacute;hensible, &eacute;puis&eacute; par la maladie qui le grignote depuis de longues ann&eacute;es. &Agrave; 56 ans, il demande l&rsquo;<a href="https://www.francebleu.fr/emissions/l-invite-de-la-redaction-de-france-bleu-maine/euthanasie-cela-revient-a-donner-un-permis-de-tuer-aux-professionnels-de-sante-selon-un-medecin-sarthois-9736899" target="_blank" rel="nofollow noopener">euthanasie</a>, au grand d&eacute;sespoir de sa fille.</p><p>Il est frappant de mesurer, en lisant ce t&eacute;moignage, l&rsquo;inanit&eacute; de la loi belge sur l&rsquo;euthanasie. Loi qui pourrait devenir prochainement similaire en France. En effet, il ne se passe que six semaines entre la demande de son p&egrave;re et l&rsquo;euthanasie effective. Trois entretiens seulement en visio (!) avec une psychologue suffiront pour avoir l&rsquo;accord et la signature de deux m&eacute;decins charg&eacute;s de l&rsquo;euthanasier. Claire dit avoir v&eacute;cu les quatre jours pr&eacute;c&eacute;dents <em>&laquo; comme une mascarade &raquo;. </em>Avant la piq&ucirc;re l&eacute;tale, c&rsquo;est un d&eacute;jeuner en famille, des adieux, des embrassades, puis son p&egrave;re monte dans sa chambre pour se faire tuer deux minutes apr&egrave;s. On mesure la violence d&rsquo;une mort si rapide et aseptis&eacute;e pour lui et pour ses proches, notamment pour ses filles &agrave; qui cela renvoie que la vie ne vaut pas la peine d&rsquo;&ecirc;tre v&eacute;cue jusqu&rsquo;au bout avec cette maladie-l&agrave;.</p><h2>&#8203;&nbsp;&raquo;Je n&rsquo;ai vu que violence dans l&rsquo;euthanasie&nbsp;&raquo;</h2><p>Le point de vue de Claire, concern&eacute;e &agrave; double titre en tant que proche d&rsquo;une personne euthanasi&eacute;e et malade elle-m&ecirc;me, est &eacute;loquent : &laquo; <em>Pendant longtemps, je n&rsquo;ai &eacute;t&eacute; ni pour ni contre l&rsquo;euthanasie. Je m&rsquo;abritais derri&egrave;re le respect de la volont&eacute; de ceux ou celles qui font ce choix. Apr&egrave;s avoir v&eacute;cu au plus intime la mort organis&eacute;e de Papa, je ne peux plus rester dans cette forme d&rsquo;indiff&eacute;rence. </em>[&hellip;] <em>Je m&rsquo;insurge contre la dignit&eacute; proclam&eacute;e d&rsquo;une mort soi-disant douce. Je n&rsquo;ai vu que violence dans ce processus. &raquo; &laquo; Et moi, que va-t-il m&rsquo;arriver quand je deviendrai encore plus d&eacute;pendante ? Comment ferai-je si je n&rsquo;ai autour de moi que des personnes qui n&rsquo;ont rien d&rsquo;autre &agrave; me proposer que la mort ? &raquo;</em></p><blockquote><p>La petitesse ouvre le c&oelig;ur de l&rsquo;autre et ensemble, on est plus fort.</p></blockquote><p>Par son choix d&rsquo;affronter la souffrance avec amour, Claire rend, dans son ouvrage, un bouleversant hymne &agrave; la vie et &agrave; la fragilit&eacute;, qui peut faire &eacute;cho et porter nos malades, croyants comme ath&eacute;es : <em>&laquo; Accueillir la vie qui nous est donn&eacute;e est une occasion d&rsquo;amour. Si je succombe &agrave; mon d&eacute;sespoir, je me prive de tant de rencontres, de beaux moments. Jusqu&rsquo;&agrave; la fin, il peut y avoir quelque chose &agrave; vivre. Une parcelle de tr&eacute;sor inattendu. C&rsquo;est toute la beaut&eacute; du myst&egrave;re de la vie. </em>[&hellip;] <em>La vie est un combat quotidien et il ne faut pas craindre d&rsquo;&ecirc;tre un poids pour l&rsquo;autre. Avec cette maladie, je n&rsquo;arr&ecirc;te pas de demander de l&rsquo;aide et mon sentiment d&rsquo;&ecirc;tre un poids ne fait qu&rsquo;augmenter. Je pense souvent au mot de sainte Bernadette de Lourdes r&eacute;pondant &agrave; ses s&oelig;urs qui la traitaient de poids : </em>&ldquo;Pour qu&rsquo;une pendule fonctionne, elle doit avoir un poids !&rdquo; Nous sommes tous des &ldquo;pendules&rdquo;, nous pesons les uns sur les autres et nous avons besoin d&rsquo;eux.</p><p>Contrairement &agrave; ce que l&rsquo;on pense souvent, la vuln&eacute;rabilit&eacute; est une force parce qu&rsquo;elle est une voie pour la rencontre, la joie, la faiblesse. La petitesse ouvre le c&oelig;ur de l&rsquo;autre et ensemble, on est plus fort. C&rsquo;est ainsi que la souffrance peut &ecirc;tre f&eacute;conde. J&rsquo;ai besoin de personnes qui m&rsquo;encouragent et m&rsquo;accompagnent dans l&rsquo;audace de vivre plut&ocirc;t que de compatissants qui m&rsquo;indiquent la sortie ! Au choix de ma mort, je pr&eacute;f&egrave;re l&rsquo;audace de vivre. &raquo;</p><p>La jeune fille qui, lors d&rsquo;une conf&eacute;rence sur la valeur de la vie, m&ecirc;me diminu&eacute;e, rencontrera son mari Marc, offre un petit livre touchant, o&ugrave; chacun trouvera de quoi m&eacute;diter sur le sens de la vie, de la souffrance et de la mort. Elle nous le rappelle : <em>&laquo; Plus je &ldquo;d&eacute;g&eacute;n&egrave;re&rdquo; et sens la vie s&rsquo;&eacute;chapper, plus je me sens vivre. L&rsquo;amour transforme tout. &raquo;</em></p><p><b><a href="https://www.editionsducerf.fr/librairie/livre/20688/L-Amour-coute-que-coute" target="_blank" rel="nofollow noopener">L&rsquo;Amour co&ucirc;te que co&ucirc;te</a>, </b> <em>de Claire Dierckx, Les &Eacute;ditions du Cerf, 120 pages, 15 &euro;.</em></p><script>window.w3tc_lazyload=1,window.lazyLoadOptions={elements_selector:".lazy",callback_loaded:function(t){var e;try{e=new CustomEvent("w3tc_lazyload_loaded",{detail:{e:t}})}catch(a){(e=document.createEvent("CustomEvent")).initCustomEvent("w3tc_lazyload_loaded",!1,!1,{e:t})}window.dispatchEvent(e)}}</script><script async src="https://www.valeursactuelles.com/assets/plugins/w3-total-cache/pub/js/lazyload.min.js"></script></body></html> </div> <div class="qiota"></div> </div> <div class="post__footer "> <a class="comments__anchor btn commentsSectionAnchor" href="#commentsSection">Lire les commentaires (<span class="commentCount"></span>)</a> </div> </article> <div 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data-slug-region="pays-de-la-loire" data-region-title="Pays-de-la-Loire">Pays-de-la-Loire</option> <option value="Occitanie" data-slug-region="occitanie" data-region-title="Occitanie">Occitanie</option> <option value="Nouvelle Aquitaine" data-slug-region="nouvelle-aquitaine" data-region-title="Nouvelle Aquitaine">Nouvelle Aquitaine</option> <option value="Normandie" data-slug-region="normandie" data-region-title="Normandie">Normandie</option> <option value="Ile de France" data-slug-region="ile-de-france" data-region-title="Ile de France">Ile de France</option> <option value="Hauts-de-France" data-slug-region="hauts-de-france" data-region-title="Hauts-de-France">Hauts-de-France</option> <option value="Grand Est" data-slug-region="grand-est" data-region-title="Grand Est">Grand Est</option> <option value="Corse" data-slug-region="corse" data-region-title="Corse">Corse</option> <option value="Centre-Val de Loire" data-slug-region="centre-val-de-loire" data-region-title="Centre-Val de Loire">Centre-Val de Loire</option> <option value="Bretagne" data-slug-region="bretagne" data-region-title="Bretagne">Bretagne</option> <option value="Bourgogne-Franche-Comté" data-slug-region="bourgogne-franche-comte" data-region-title="Bourgogne-Franche-Comté">Bourgogne-Franche-Comté</option> <option value="Auvergne-Rhône-Alpes" data-slug-region="auvergne-rhone-alpes" data-region-title="Auvergne-Rhône-Alpes">Auvergne-Rhône-Alpes</option> </select> </label> </div> </form> <span class="h-orsepartor">OU</span> <a href="#" class="btn btn--alt icon-marker localiseMy localiseMyPopup">Localisez-moi</a> </div> <div class="grid"> <div class="b-region-home-popup__carte"> <svg class="france-carte franceCarte" width="541" viewBox="0 0 541 584" fill="none" xmlns="http://www.w3.org/2000/svg"> <path title="Grand Est" d="M539.544 136.717L535.098 135.311L533.383 133.778L530.266 132.932L528.493 131.019L527.908 132.042L526.608 131.6L525.691 132.559L522.694 130.525L520.249 131.927L520.128 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