{"id":26154,"date":"2026-04-30T09:01:29","date_gmt":"2026-04-30T13:01:29","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=26154"},"modified":"2026-04-30T15:55:50","modified_gmt":"2026-04-30T19:55:50","slug":"survival-is-never-a-solo-act","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/survival-is-never-a-solo-act\/","title":{"rendered":"Hayatta Kalmak Asla Yaln\u0131z Yap\u0131lan Bir \u0130\u015f De\u011fildir"},"content":{"rendered":"

KF Fark\u0131ndal\u0131k Ay\u0131 s\u0131ras\u0131nda Emily's Entourage, KF toplulu\u011funun \u00fcyelerini hikayelerini payla\u015fmaya davet ediyor. Bug\u00fcnk\u00fc blog yaz\u0131s\u0131nda, KF ile ge\u00e7en ya\u015fama dair son derece ki\u015fisel bir d\u00fc\u015f\u00fcnceyi ve bunu onunla birlikte ta\u015f\u0131yan g\u00f6r\u00fcnmez insan a\u011f\u0131n\u0131 payla\u015fan Caleigh Haber Takayama yer al\u0131yor.<\/span><\/i><\/p>\n

\u0130nsanlar hastal\u0131\u011f\u0131m\u0131 \u00e7ok iyi ta\u015f\u0131d\u0131\u011f\u0131m\u0131 s\u00f6yl\u00fcyorlar.<\/span><\/p>\n

\"\"G\u00f6rmedikleri \u015fey, beni bu noktaya ta\u015f\u0131yan binlerce eldir; onlarca y\u0131ld\u0131r \u00e7al\u0131\u015fan klinisyenler, hi\u00e7 tan\u0131\u015famayacaklar\u0131 hastalar i\u00e7in bilimi ileri ta\u015f\u0131yan ara\u015ft\u0131rmac\u0131lar, yollar in\u015fa eden ve bug\u00fcn\u00fcn s\u0131n\u0131rlar\u0131n\u0131 yar\u0131n\u0131n s\u0131n\u0131rlar\u0131 olarak kabul etmeyi reddeden kurulu\u015flar.<\/span><\/p>\n

Ve sonra bana en yak\u0131n eller var. Beni tutmu\u015f, ta\u015f\u0131m\u0131\u015f ve b\u0131rakmay\u0131 reddetmi\u015f olanlar.<\/span><\/p>\n

\u0130nsanlar \u201cg\u00f6r\u00fcnmez hastal\u0131k\u201d duyduklar\u0131nda, bunun bedenimde g\u00f6r\u00fcnmedi\u011fi anlam\u0131na geldi\u011fini d\u00fc\u015f\u00fcn\u00fcrler. Ancak g\u00f6r\u00fcnmezlik bundan daha derine iner.<\/span><\/p>\n

G\u00f6r\u00fcnmeyen, onu benimle birlikte ta\u015f\u0131yan insan a\u011f\u0131d\u0131r. G\u00f6r\u00fcnmeyen, ta\u015f\u0131d\u0131klar\u0131 y\u00fck, ald\u0131klar\u0131 kararlar, ileriye ta\u015f\u0131d\u0131klar\u0131 travma, kimsenin sizi haz\u0131rlamad\u0131\u011f\u0131 anlarda in\u015fa ettikleri g\u00fc\u00e7t\u00fcr.<\/span><\/p><\/blockquote>\n

Kistik fibroz (KF) genetik bir akci\u011fer hastal\u0131\u011f\u0131 olarak adland\u0131r\u0131l\u0131r, ancak bu tan\u0131m bana hi\u00e7bir zaman eksiksiz gelmedi. Bu ayn\u0131 zamanda bir dalga etkisi. Durgun suya at\u0131lan bir ta\u015f gibi etki benimle s\u0131n\u0131rl\u0131 kalm\u0131yor; d\u0131\u015far\u0131ya do\u011fru yay\u0131l\u0131yor, daha da yakla\u015fmay\u0131 se\u00e7en, hayat\u0131n\u0131n benimkisi taraf\u0131ndan \u015fekillenmesine izin veren, ne gerektirebilece\u011fini anlasalar bile kalmaya devam eden herkese ula\u015f\u0131yor.<\/span><\/p>\n

Bu se\u00e7imi yapan ilk ki\u015fi annemdi.<\/span><\/p>\n

18 ya\u015f\u0131na bas\u0131p yeti\u015fkin bak\u0131m\u0131na ge\u00e7ti\u011fimde her \u015fey de\u011fi\u015fti. Doktorlar anneme bakmay\u0131 b\u0131rak\u0131p do\u011frudan bana bakmaya ba\u015flad\u0131lar ve benden hen\u00fcz nas\u0131l verece\u011fimi bilmedi\u011fim cevaplar beklediler. Birdenbire; ila\u00e7lar\u0131m\u0131, temel sa\u011fl\u0131k durumumu, v\u00fccudumu ve gelece\u011fimi \u015fekillendirecek kararlar\u0131 anlamaktan sorumlu hale gelmi\u015ftim.<\/span><\/p>\n

Ayn\u0131 zamanda, bana her ad\u0131mda rehberlik eden ki\u015finin geri \u00e7ekilmesi istendi.<\/span><\/p>\n

Ger\u00e7ek \u015fu ki, KF ile ba\u011f\u0131ms\u0131zl\u0131k nadiren do\u011frusal bir s\u00fcre\u00e7tir.<\/span><\/p>\n

Ne kadar hastaland\u0131ysam, insanlara o kadar \u00e7ok tekrar ihtiya\u00e7 duydum.<\/span><\/p>\n

21 ya\u015f\u0131ndayken son evre akci\u011fer hastal\u0131\u011f\u0131na ula\u015ft\u0131\u011f\u0131mda, karde\u015fim Michael neredeyse bir gecede bak\u0131c\u0131m oldu. Y\u0131llar \u00f6nce birlikte ya\u015fad\u0131\u011f\u0131m\u0131z son seferde, kistik fibroz (KF) sadece arka planda kalan bir g\u00fcr\u00fclt\u00fcden ibaretti. Y\u0131lda bir veya iki kez damar yoluyla antibiyotik almay\u0131 ve bo\u015f enjekt\u00f6rlerle su tabancas\u0131 sava\u015f\u0131 yapmay\u0131 i\u00e7erirdi. KF, her an\u0131 belirlemiyordu.\u00a0<\/span><\/p><\/blockquote>\n

Ama bu sefer her \u015feydi.<\/span><\/p>\n

\"\"Beni hayatta tutman\u0131n ne demek oldu\u011funu an\u0131 an\u0131na \u00f6\u011frendi. Tek bir kelimeye s\u0131\u011fmayan bir \u015feye d\u00f6n\u00fc\u015ft\u00fc. Bak\u0131c\u0131. Karde\u015f. Koruyucu. Karar verici.<\/span><\/p>\n

O zaman\u0131 tan\u0131mlayan bir an vard\u0131r.<\/span><\/p>\n

Bedenim habersizce iflas etmeye ba\u015flad\u0131\u011f\u0131nda, kararlar saniyeler i\u00e7inde al\u0131nmak zorundayd\u0131. Doktorlar ona d\u00f6nd\u00fc ve hi\u00e7bir karde\u015fin asla cevaplamak zorunda kalmamas\u0131 gereken bir soru sordu.<\/span><\/p>\n

\u201cEnt\u00fcbe ediyor muyuz?\u201d<\/span><\/i><\/p>\n

Bunun ne anlama geldi\u011fini idrak edecek zaman\u0131 yoktu. Sonu\u00e7lar\u0131 tartacak alan\u0131, bir sonraki ad\u0131mda ne olaca\u011f\u0131na dair bir kesinli\u011fi yoktu. Hayatta kalaca\u011f\u0131ma dair hi\u00e7bir garantisi yoktu. Ayn\u0131 kalaca\u011f\u0131m\u0131n hi\u00e7bir s\u00f6z\u00fc verilmemi\u015fti. Hayat\u0131m\u0131n a\u011f\u0131rl\u0131\u011f\u0131 k\u0131l pay\u0131 dengedeydi.<\/span><\/p>\n

O an benim i\u00e7in sava\u015fmay\u0131 se\u00e7ti. Ve o se\u00e7im, bug\u00fcn h\u00e2l\u00e2 burada olmam\u0131n nedenlerinden biri.<\/span><\/p>\n

\u00c7ok ge\u00e7meden, \u015fu anki e\u015fim olan Bryan hayat\u0131ma girdi ve t\u00fcm\u00fcyle buraya yerle\u015fmeyi se\u00e7ti.<\/span><\/p>\n

Buna ilk g\u00f6r\u00fc\u015fte a\u015fk diyor.<\/span><\/p>\n

G\u00f6rd\u00fc\u011f\u00fcm \u015fey, bu hayat\u0131n kendisinden neleri talep edebilece\u011fini tam olarak bilerek bu hayat\u0131 se\u00e7en biriydi.<\/span><\/p>\n

KF'nin ger\u00e7e\u011fini yumu\u015fatmad\u0131m. Gidip kendi ara\u015ft\u0131rmas\u0131n\u0131 yapt\u0131, bunu herkesin yapaca\u011f\u0131 \u015fekilde anlamaya \u00e7al\u0131\u015ft\u0131. Ama ona \u015funu s\u00f6yledi\u011fimi hat\u0131rl\u0131yorum:, <\/span>Sorular\u0131n\u0131zla bana geri d\u00f6n\u00fcn<\/span><\/i> \u00e7\u00fcnk\u00fc bu hastal\u0131k herkes ayn\u0131 \u015fekilde g\u00f6r\u00fcnmez.<\/span><\/p>\n

Ve yapt\u0131.<\/span><\/p>\n

Dinledi. \u00d6\u011frendi. Sadece internette bulabileceklerini de\u011fil, benim deneyimimi anlamak istiyordu.<\/span><\/p>\n

Hayat\u0131n\u0131z\u0131n belirsiz oldu\u011fu bir d\u00f6nemde sevilmenin, birinin bu hastal\u0131\u011f\u0131n ger\u00e7ekte nas\u0131l bir \u015fey oldu\u011funu\u2014hastaneye yat\u0131\u015flar\u0131, gerilemeyi, bilinmezlikleri\u2014g\u00f6rmesine izin vermenin farkl\u0131 bir savunmas\u0131zl\u0131\u011f\u0131 vard\u0131r.<\/span><\/p><\/blockquote>\n

Onu kendimden uzakla\u015ft\u0131rmaya \u00e7al\u0131\u015ft\u0131\u011f\u0131m anlar oldu.<\/span><\/p>\n

Ama gitmedi.<\/span><\/p>\n

Bir noktada bana \u015f\u00f6yle demi\u015fti:, <\/span>\u201cBu benim de hayat\u0131m. Bunu ben se\u00e7iyorum.\u201d<\/span><\/i><\/p>\n

Ve bunu se\u00e7meye devam etti. Her g\u00fcn.<\/span><\/p>\n

\"\"Son evre Kistik Fibrozis (KF) rahats\u0131zl\u0131\u011f\u0131ma ba\u011fl\u0131 komplikasyonlar nedeniyle ikinci \u00e7ift akci\u011fer naklimin ard\u0131ndan organ reddi ya\u015famaya ba\u015flad\u0131\u011f\u0131mda, hi\u00e7 teredd\u00fct etmeden bak\u0131c\u0131m oldu. Evde benimle ilgilendi. Uzun g\u00fcnler ve daha da uzun geceler boyunca yan\u0131mda oturdu. Nerede bulabilirsek, normal hayat\u0131n k\u00fc\u00e7\u00fck par\u00e7alar\u0131na tutunduk.<\/span><\/p>\n

Ve o anlar \u00f6nem ta\u015f\u0131yordu.<\/span><\/p>\n

Aktivitenin ne kadar b\u00fcy\u00fck ya da k\u00fc\u00e7\u00fck oldu\u011fu hi\u00e7 fark etmezdi. Biz sadece oradayd\u0131k, birlikte.<\/span><\/p>\n

Geriye d\u00f6n\u00fcp bakt\u0131\u011f\u0131mda, an\u0131 ya\u015fayarak ya\u015fad\u0131\u011f\u0131m\u0131z\u0131 d\u00fc\u015f\u00fcn\u00fcyorum. Ama ayn\u0131 zamanda yar\u0131n i\u00e7in in\u015fa ediyorduk.<\/span><\/p>\n

Sa\u011fl\u0131\u011f\u0131m\u0131 korumak, \u00f6n\u00fcm\u00fczde daha fazla zaman, daha fazla olas\u0131l\u0131k, daha fazla ya\u015fam yaratmak i\u00e7in elimizden gelen her \u015feyi yap\u0131yorduk. Bryan, sa\u011fl\u0131\u011f\u0131m\u0131n kontrol\u00fcn\u00fc m\u00fcmk\u00fcn oldu\u011funu bilmedi\u011fim bir \u015fekilde ele almamda bana yard\u0131m etti. Yeni bir sahiplenme d\u00fczeyine ad\u0131m atmam\u0131 sa\u011flad\u0131.<\/span><\/p>\n

Sadece benimle ilgilenmeme yard\u0131m etmekle kalmad\u0131; h\u00e2l\u00e2 neleri ba\u015farabilece\u011fime inanmama da yard\u0131mc\u0131 oldu.<\/span><\/p>\n

T\u00fcm bunlar\u0131n aras\u0131nda annem ve erkek karde\u015fim yan\u0131mda kald\u0131lar. Bir b\u00fct\u00fcn haline geldik\u2014d\u00f6rd\u00fcm\u00fcz. Zorunluluk, sevgi ve \u00f6lmemi istem konundaki inat\u00e7\u0131 direni\u015fle bir arada tutulan bir tak\u0131my\u0131ld\u0131z\u0131yd\u0131k.<\/span><\/p><\/blockquote>\n

\u0130nsanlar\u0131n g\u00f6rmedi\u011fi \u015fey, hayatta kalman\u0131n asla bireysel bir eylem olmad\u0131\u011f\u0131d\u0131r. Hala burada olan her insan\u0131n arkas\u0131nda, tek ba\u015f\u0131na ta\u015f\u0131yamayaca\u011f\u0131n y\u00fck\u00fc ta\u015f\u0131yan bir insan a\u011f\u0131 vard\u0131r.<\/b><\/p>\n

Ve ta\u015f\u0131nan ki\u015fi olman\u0131n verdi\u011fi bir su\u00e7luluk da vard\u0131r.<\/span><\/p>\n

Bu hastal\u0131k i\u00e7in sen istemedin. Kimsenin hayat\u0131n\u0131 yeniden d\u00fczenlemesini de istemedin. Ama yapt\u0131lar. Ve o sevgi herkesin \u00fczerinde iz b\u0131rak\u0131r.<\/span><\/p>\n

Ancak \u00f6\u011frendi\u011fim \u015fey \u015fu.<\/span><\/p>\n

Seni ta\u015f\u0131yan insanlar bunu mecbur olduklar\u0131 i\u00e7in yapmuyorlar. Hayat\u0131n onlar i\u00e7in, kendilerinin de neye kadir olduklar\u0131n\u0131 sand\u0131klar\u0131n\u0131 yeniden \u015fekillendirecek kadar \u00f6nemli oldu\u011fu i\u00e7in yap\u0131yorlar.<\/span><\/p><\/blockquote>\n

Bunu \u015fu anda ya\u015fayan, uykusuz bir \u015fekilde imkans\u0131z kararlar alan aileler, sizi g\u00f6r\u00fcyorum.<\/span><\/p>\n

Hastal\u0131\u011f\u0131n\u0131z\u0131n sevdiklerinize maliyetini bilmenin sessiz y\u00fck\u00fcn\u00fc ta\u015f\u0131yan hastalar, sizi de g\u00f6r\u00fcyorum.<\/span><\/p>\n

Biz bir y\u00fck de\u011filiz. Biz, s\u0131rad\u0131\u015f\u0131 insanlar\u0131n d\u00fcnyaya s\u0131rad\u0131\u015f\u0131 sevginin ne oldu\u011funu g\u00f6stermesinin sebebiyiz.<\/span><\/p>\n

Bu, KF'nin g\u00f6r\u00fcnmeyen ger\u00e7ekli\u011fidir.<\/span><\/p>\n

Sadece bir hastal\u0131\u011fla sava\u015fan bir beden de\u011fil, birlikte sava\u015fan, her g\u00fcn yeniden birbirini se\u00e7en bir aile<\/span><\/p>\n

Yazar Hakk\u0131nda:<\/span><\/h3>\n

\"\"Kistik fibrozis (KF) ile ya\u015fayan bir hikaye anlat\u0131c\u0131s\u0131, savunucu ve i\u00e7erik \u00fcreticisi olan Caleigh; \u00e7ift akci\u011fer nakli sonras\u0131 ya\u015fam da dahil olmak \u00fczere deneyimlerini payla\u015fmak i\u00e7in on y\u0131l\u0131 a\u015fk\u0131n s\u00fcredir dijital platformlar\u0131 kullan\u0131yor. Sosyal medya ve topluluk olu\u015fturma alan\u0131ndaki \u00e7al\u0131\u015fmalar\u0131 arac\u0131l\u0131\u011f\u0131yla, ba\u011flant\u0131 kurma, e\u011fitim ve etki i\u00e7in alanlar yarat\u0131rken KF hastal\u0131\u011f\u0131 toplulu\u011funun g\u00f6r\u00fcn\u00fcrl\u00fc\u011f\u00fcn\u00fc art\u0131r\u0131yor.<\/span><\/p>\n

Caleigh \u015fu anda e\u015fi ve iki k\u00f6pe\u011fiyle birlikte Avrupa'da ya\u015famakta olup, \u00e7al\u0131\u015fmalar\u0131n\u0131 nadir ve kronik rahats\u0131zl\u0131klarla ya\u015fayan insanlar\u0131 desteklemeye adamaya devam etmektedir.<\/span><\/p>\n

Dinle <\/span>Nefes \u0130\u00e7in Sava\u015f\u0131m\u0131z<\/span><\/i>, kistik fibroz ile ya\u015fama, CF hastas\u0131 bir yak\u0131na bakma ve karma\u015f\u0131k t\u0131bbi konular\u0131 daha insani bir dille ele alma konular\u0131nda d\u00fcr\u00fcst sohbetlere odaklanan bir podcast <\/span>Burada<\/span><\/a>.<\/span><\/p>\n

Web sitesini ziyaret ederek \u00e7al\u0131\u015fmalar\u0131 hakk\u0131nda daha fazla bilgi edinin <\/span>Burada<\/span><\/a>.<\/span><\/p>","protected":false},"excerpt":{"rendered":"

During CF Awareness Month, Emily\u2019s Entourage invites members of the CF community to share their stories. Today\u2019s blog post features Caleigh Haber Takayama, who shares a deeply personal reflection on life with CF\u2014and the unseen network of people who carry it alongside her. People tell me I carry my disease well. What they don\u2019t see… <\/p>\n

<\/div>\n

Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":1719,"featured_media":26170,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_titles_title":"Emily's Entourage > Survival is Never a Solo Act","_seopress_titles_desc":"%%post_excerpt%%","_seopress_robots_index":"","_seopress_robots_follow":"","_seopress_robots_imageindex":"","_seopress_robots_snippet":"","_seopress_robots_primary_cat":"none","_seopress_robots_breadcrumbs":"","_seopress_robots_freeze_modified_date":"","_seopress_robots_custom_modified_date":"","_seopress_robots_canonical":"","_seopress_social_fb_title":"","_seopress_social_fb_desc":"","_seopress_social_fb_img":"","_seopress_social_fb_img_attachment_id":0,"_seopress_social_fb_img_width":0,"_seopress_social_fb_img_height":0,"_seopress_social_twitter_title":"","_seopress_social_twitter_desc":"","_seopress_social_twitter_img":"","_seopress_social_twitter_img_attachment_id":0,"_seopress_social_twitter_img_width":0,"_seopress_social_twitter_img_height":0,"_seopress_redirections_value":"","_seopress_redirections_enabled":"","_seopress_redirections_enabled_regex":"","_seopress_redirections_logged_status":"both","_seopress_redirections_param":"","_seopress_redirections_type":301,"_seopress_analysis_target_kw":"","_monsterinsights_skip_tracking":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_post_was_ever_published":false},"categories":[1],"tags":[52,209,214,213,137],"class_list":["post-26154","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","tag-cf-awareness","tag-cfa","tag-cfa-month","tag-cystic-fibrosis-awareness","tag-cystic-fibrosis-awareness-month"],"acf":[],"jetpack_sharing_enabled":true,"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/WordPress-Featured-Image-12.webp","post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/26154","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/users\/1719"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/comments?post=26154"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/26154\/revisions"}],"predecessor-version":[{"id":26169,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/26154\/revisions\/26169"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media\/26170"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=26154"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=26154"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=26154"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}