WEBVTT

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Hammaga salom.

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Mening ismim Sem,

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men endigina 17 yoshga kirdim.

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Bir necha yil oldin, maktabda xali 
9-sinfga o'tmasimdan avval,

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men Foksboro maktabi marsh ansamblida
kichkina baraban chalishni xohlardim,

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va bu orzuyim edi,
men uni amalga oshirishim kerak edi.

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Lekin istalgan bir osiladigan baraban

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tahminan 18 kg og'irlikka ega edi,

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men esa kasalman. 
Kasallik progeriya deb nomlanadi.

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Tasavvur qila olishingiz uchun aytaman,
men 22,6 kg atrofidaman.

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Ya'ni, texnik sabablarga ko'ra, men
oddiy kichkina baraban olib yurolmasdim,

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va shuning uchun, ansambl dirijyori
meni oraliqlarda zarbli

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musiqiy asboblarda o'ynash uchun qo'ydi.

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Xo'sh, zarbli asboblar —
bu qiziq edi...

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Ularning ichiga juda zo'r yordamchi
zarbli asboblar kirardi:

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bongo, litavrlar,

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timbales va qo'ng'iroqchalar kabi.

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Xa, bu qiziq edi.

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Lekin bu marsh qilishga kirmasdi
va bu meni tushkunlikka tushirardi.

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Shundayam meni marsh jamoasida kichkina

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barabanda oraliqlarda o'ynash niyatidan

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hech narsa to'xtatolmasdi.

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Xo'sh, mening oilam va men, 
muhandis bilan birga

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menga olib yurishga oson bo'ladigan

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mahkamlash konstruksiyasi ustida ishladik.

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Ancha vaqt ishdan keyin biz yarata oldik.

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Bu kichkina baraban 2,7 kg edi.

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(Qarsaklar)

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Men sizlarga progeriya haqda ozgina 
ta'rif bermoqchiman.

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Hozirgi kunda dunyoda bu kasallikka
chalingan bolalar soni 350 ta.

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Ya'ni, bu juda kam uchraydigan kasallik.

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Va uning zarar yetkazuvchi omillari 
o'z ichiga:

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terining yupqalashishi, o'sishdan to'xtab
qolish, juda sekin vazn olish,

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va yurak kasalliklarini oladi.

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O'tgan yili mening onam o'zining 
tadqiqotchilar jamoasi bilan progeriyani

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davolash bo'yicha ilk muvaffaqiyatli
izlanishlarni taqdim etdi,

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shundan keyin mendan NPR'da 
intervyu olishdi va

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Jon Gamilton menga savol berdi:

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"Insonlar siz haqingizda bilishi kerak

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bo'lgan eng muhim narsa nima?"

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Va men oddiy qilib,

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baxtli hayot kechirayotganimni aytdim.

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(Qarsaklar)

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Hayotimda yetarlicha ko'p 
qiyinchiliklar bo'lsa-da,

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va ularning ko'pi progeriya 
sababli bo'lsa-da,

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odamlar menga achinishlarini xohlamayman.

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Men bu noqulayliklar haqida o'ylamayman,

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va nima bo'lganda ham 
ko'pchiligini amallay olaman.

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Bugun men sizlarga o'zimning baxtli hayot 
konsepsiyamni ulashish uchun bu yerdaman.

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Xo'sh, men 3 ta aspektga ajrataman.

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Quyida mashhur Ferris Byullerdan sitata.

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Konsepsiyamning birinchi aspekti —

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Men nima qila olmasligim borasida 
bosh qotirmayman,

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chunki men qila oladigan 
shuncha narsa bor.

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Ba'zida insonlar shunga o'xshash 
savollar berishadi:

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"Progeriya bilan yashash qiyinmi?", yoki

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"Bu bilan bog'liq qanday 
qiyinchiliklar bilan har kuni yuzlanasiz?"

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Men javob berishni xohlardim,
progeriya bilan kasal bo'lsam-da,

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odatda u bilan bog'liq bo'lmagan narsalar

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haqida o'ylab ko'p vaqtimni o'tkazaman.

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Bu men bu kabi noqulayliklarni inkor 
qilaman degani emas.

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Men nimadir qila olmaganimda,
masalan,

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uzoq masofaga yugurish, yoki 
daxshatli attraksionlarda ucha olmaganimda

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nimalardan mahrumligimni tushunaman.

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Shunday bo'lsa ham, men o'zim qila 
oladigan ishlarda

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o'zimni diqqatimni jamlayman,
ular bilan ko'p shug'ullanaman,

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bular skautlar harakati, yoki musiqa,
yoki komikslar,

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yoki qanday men yoqtirgan Boston 
sport jamoasi.

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Xa, shunday. (Kulgu)

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Xullas, ayrim narsalarni "qila olaman"
kategoriyasiga o'tkazish uchun

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ba'zida original yechimlarni o'ylab

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topishimga, ba'zi narsalarga esa 
moslashishimga to'g'ri keladi.

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Baraban bilan bo'lgan voqeadagidek.

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Mana bu klipda

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men "O'rgimchak odam" dagi musiqani 
chalayapman,

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Foksboro maktabi marsh ansambli tarkibida,

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oraliqlardagi tanaffuslarda,
ikki yil oldin.

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(Video)

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♫ "O'rgimchak odam" filmidagi musiqa ♫

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(Qarsaklar)

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Tashakkur.

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Yaxshi, xo'sh...

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Bu juda zo'r bo'lgan edi.

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Shunday qilib men marsh jamoasida 
kichkina barabanda o'ynash orzuyimni

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amalga oshira oldim,

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chunki men buni uddalay olishimga 
ishongandim.

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Xullas, umid qilamanki, sizlar ham
o'z orzularingizga erisha olasizlar.

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Konsepsiyamning ikkinchi aspekti — bu

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o'zimni o'zim xohlagan insonlar bilan 
o'rashim,

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yuqori irodali insonlar bilan.

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Mening shunday ajoyib oilam bor ekanligi 
bu mening omadli ekanligimdir.

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Oilam meni doim qo'llab-quvvatlagan,
butun umrim davomida.

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Va mening shunday yaqin o'rtoqlarimning
borligi ham

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mening omadliligimdan dalolat beradi.

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Albatta biz biroz "aqldan ozgan" 
musiqiy fanatlarga o'xshaymiz,

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va biz bir-birimiz bilan muloqotdan
zavq olamiz,

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kerakli payt bir-birimizga yordam beramiz.

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Biz bir-birimizni ichkaridan ko'ramiz.

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Biz ba'zida biroz tentakroqmiz.

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Hozir biz o'rta maktabning oxirgi 
sinfidamiz,

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va biz yoshroq ishtirokchilarni musiqiy 
guruhimizga chaqirishimiz mumkin,

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xuddi bir jamoadek.

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Musiqiy guruhda bo'lish menga nega yoqadi?
biz birgalikda

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chaladigan musiqa — jonli,

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sohta emas,
u progeriyani chetga surib tashlaydi.

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Shunday ekan, men bu haqda

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havotirlanmayman, musiqa bilan 
shug'ullanib o'zimni yaxshi his qilaman.

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Va hattoki, hujjatli film olib,

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bir-ikki marta televidenyega 
borganimda yoki

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har kuni o'z yaqinlarim orasida o'zimni

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hissiyotlarimning eng yuqori 
nuqtasida his qilaman.

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Ular mening hayotimga ijobiy ta'sir
ko'rsatishadi va

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men ham xuddi shunday, ularga ijobiy
ta'sir ko'rsataman deb umid qilaman.

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(Qarsaklar)

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Rahmat.

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Xo'sh, eng muhimi bu yerda shuki,

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umid qilamanki,
siz o'z oilangizni qadrlaysiz va sevasiz.

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O'z do'stlaringizni, aka-ukalaringizni,

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o'rtoqlaringiz, ustozlaringizni va

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atrofingizdagilarni.

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Chunki buning barchasi kundalik hayotimiz
uchun juda muhim,

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va buning barchasi hayotimizga yetarlicha
ijobiy ta'sir ko'rsatadi.

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Konsepsiyamning uchinchi aspekti —

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Doim oldinga harakatlaning.

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Mana bu siz hammangiz biladigan inson
Uolt Disneyning gaplari,

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va bu mening eng sevimli sitatam.

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Men doim quvonch bilan kutib yashayman.

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Hayotimni boyitish uchun doim olg'a
intilaman, harakat qilaman.

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Bu katta narsa bo'lishi 
shart emas.

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Bu yoki sabrsizlik bilan

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kutilgan komiksning davomi chiqishi,

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yoki oila bilan birga 
uzoqqa dam olishga otlanish,

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yoki do'stlar davrasida 
vaqtichog'lik qilish,

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maktabda keyingi futbol o'yiniga
tayyorgarlik ko'rish.

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Bularning barchasi asosiy narsalarda
diqqatni jamlashga va

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oldinda yorqin kelajak 
kutayotganini his qilishga,

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va ba'zida men duch keladigan qiyin 
vaqtlardan o'tishga yordam beradi.

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Dunyoni bunday ko'ra olish uzoqni ko'zlay
olish va ehtiyotkorlik talab qiladi.

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Men o'zimga achinib kuchimni 
sarflamaslikka harakat qilaman,

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chunki shunday bo'lganida men o'zimni
boshi berk bo'chaga kirib qolgandek

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his qilaman va bunday paytda quvonch 
uchun o'zingizda kuch topa olmaysiz.

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Bu albatta tushkunliklarga e'tibor
qilmayman degani emas,

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men ularni qabul qilaman,

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hech bo'lmaganda ularni tushunish

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va buni oldini olishga harakat
qilish uchun.

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Men yoshroq bo'lganimda,
injener bo'lishni xohlaganman.

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Men ixtirochi bo'lishni istaganman.

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Dunyoga yorqin kelajak olib kela oladigan.

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Menimcha bu mening Lego o'yinchoqlarini

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yoqtirganimdan bo'lsa kerak.
Ularni yasayotib men

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o'z g'oyalarimda mustaqil ekanimni 
his qilardim.

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Va bu menimcha oilam va ustozlarim ham
tufayli shunday.

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Ular menga doim o'zimni butun va pozitiv 
baholay olishimga yordam berishgan.

00:08:57.985 --> 00:09:01.133
Bugungi kunda mening intilishlarim 
biroz o'zgargan,

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men o'zimni biologiya fanida 
sinab ko'rmoqchiman,

00:09:03.609 --> 00:09:07.948
ehtimol aynan hujayra biologiyasi yoki
genetika sohasida

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yoki bioximiya yoki shunga 
o'xshash yo'nalishda.

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Bu mening do'stim, va men uni juda 
hurmat qilaman.

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Frensis Kollinz, Sog'liqni Saqlash 
Milliy Instituti direktori,

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va biz bu yerda o'tgan yilgi TEDMEDda
suhbat qurayapmiz.

00:09:22.670 --> 00:09:26.208
Menda shunday hissiyot borki,
kim bo'lishimdan qat'iy nazar

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men dunyoni o'zgartira olishimga 
ishonaman.

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Va bunga harakat qilayotib men o'zimni
baxtiyor his qilaman.

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4 yilcha oldin,

00:09:36.562 --> 00:09:39.247
HBO "Semga ko'ra hayot" deb nomlanadigan 
men va oilam

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haqda hujjatli film suratga olishni
boshladi.

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Bu ajoyib tajriba bo'ldi, lekin nima
bo'lgandayam bu to'rt yil oldin edi.

00:09:46.285 --> 00:09:49.761
Va hammada bo'lganidek, mening qarashlarim
bu vaqt ichida ancha o'zgardi.

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Umid qilamanki, yanada yaxshi tomonga.

00:09:54.165 --> 00:09:58.798
Lekin ba'zi narsalar baribir o'zgarmadi.

00:09:58.798 --> 00:10:02.679
Masalan mening dunyoqarashim va 
hayotga munosabatim.

00:10:02.679 --> 00:10:04.730
Men sizlarga men kichkinaroq

00:10:04.730 --> 00:10:07.921
bo'lgan paytimning videosini 
ko'rsatishni xohlardim,

00:10:07.921 --> 00:10:11.492
u yerda bu munosabatni ko'rish mumkin.

00:10:11.492 --> 00:10:12.659
(Video)

00:10:12.659 --> 00:10:16.314
Men kasallikning genezisi haqda 
ko'p narsa bilaman.

00:10:16.314 --> 00:10:19.857
Bu hozir aktual emas,

00:10:19.857 --> 00:10:21.335
lekin bir paytlar ko'pchilik

00:10:21.335 --> 00:10:24.135
bolalarning o'limiga sabab ekani va

00:10:24.135 --> 00:10:26.669
bu har bir insonni tushkunlikka tushirishi

00:10:26.669 --> 00:10:29.639
meni bu materialni yaratishdan 
to'xtatib turardi.

00:10:29.639 --> 00:10:35.276
Va hozir siz hujayralar rivojlanishini 
sekinlashtiruvchi defektli

00:10:35.276 --> 00:10:39.072
oqsilsimon moddani ko'rayapsiz.

00:10:40.465 --> 00:10:42.076
Shunday ekan,

00:10:42.076 --> 00:10:45.458
men endi o'zimni ancha yengil his qilaman,

00:10:45.458 --> 00:10:48.210
men progeriya haqda

00:10:48.210 --> 00:10:51.802
o'ylamasligim kerak.

00:10:55.905 --> 00:10:57.507
Yomon emas, to'g'rimi?

00:10:57.507 --> 00:11:01.596
(Qarsaklar)

00:11:01.596 --> 00:11:02.671
Rahmat.

00:11:02.671 --> 00:11:05.990
Ko'rayotganingizdek, men ko'p 
yillar davomida shunday o'ylaganman.

00:11:05.990 --> 00:11:10.435
Lekin men bu konsepsiyamning barcha 
aspektlarini bir vaqtning o'zida his qila

00:11:10.435 --> 00:11:14.176
olmasdim.
O'tgan yilning yanvarigacha.

00:11:14.176 --> 00:11:19.010
Men og'ir kasallangan edim, bir necha kun
shifoxonada bronxit bilan yotdim.

00:11:19.010 --> 00:11:23.600
Va bu payt meni men qiladigan, 
shaxs ekanligimni his qilishga

00:11:23.600 --> 00:11:25.124
yordam beradigan hayotimning

00:11:25.124 --> 00:11:27.952
barcha sferalaridan mahrum edim.

00:11:27.952 --> 00:11:31.029
Lekin sog'ayayotganimni va tez orada

00:11:31.029 --> 00:11:34.009
o'zimni yaxshi his qila boshlashimni 
tushunishim

00:11:34.009 --> 00:11:36.659
oldinga harakat qilishimga yordam berardi.

00:11:36.659 --> 00:11:39.211
Va ba'zida,
dadilroq bo'lishimga to'g'ri kelar edi,

00:11:39.211 --> 00:11:41.003
va bu har doim ham oson kechmas edi.

00:11:41.003 --> 00:11:42.617
Ba'zida qaltirardim,

00:11:42.617 --> 00:11:44.363
yomon kunlar ham bo'lardi,

00:11:44.363 --> 00:11:47.857
lekin qat'iyatli bo'lish oson
emasligini tushunardim.

00:11:47.857 --> 00:11:51.957
Va shuni ham tushunardimki, bu 
meni oldinga intilishim uchun kalit edi.

00:11:51.957 --> 00:11:54.181
Ya'ni, aniq qilib aytganda,

00:11:54.181 --> 00:11:57.725
men vaqtimni va kuchimni o'zimga
achinish bilan sarflamas edim.

00:11:57.725 --> 00:12:01.040
Men o'zimni yaqin insonlarim 
bilan o'rayman va

00:12:01.040 --> 00:12:03.317
oldinga intilishda davom etaman.

00:12:03.317 --> 00:12:06.689
Va shunday bir kayfiyat bilan,
umid qilamanki, hammangiz,

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nima bo'lishiga, to'siqlarga qaramay

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baxtli hayot kechira olasizlar.

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To'xtang, yana bir soniya,

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yana bitta kichik maslahat —

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(Kulgu)

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Ziyofatlarni o'tkazib yubormang,
agar sizga bu yoqsa.

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Bizning maktabimizda ertaga 
bitiruvchilar balli,

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va men u yerda bo'laman.

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Katta rahmat sizlarga.

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(Qarsaklar)