0:00:18.023,0:00:20.217
Hammaga salom.

0:00:20.217,0:00:21.634
Mening ismim Sem,

0:00:21.634,0:00:24.401
men endigina 17 yoshga kirdim.

0:00:24.401,0:00:27.648
Bir necha yil oldin, maktabda xali [br]9-sinfga o'tmasimdan avval,

0:00:27.648,0:00:32.852
men Foksboro maktabi marsh ansamblida[br]kichkina baraban chalishni xohlardim,

0:00:32.852,0:00:35.589
va bu orzuyim edi,[br]men uni amalga oshirishim kerak edi.

0:00:35.589,0:00:37.852
Lekin istalgan bir osiladigan baraban

0:00:37.852,0:00:40.155
tahminan 18 kg og'irlikka ega edi,

0:00:40.155,0:00:42.770
men esa kasalman. [br]Kasallik progeriya deb nomlanadi.

0:00:42.770,0:00:46.858
Tasavvur qila olishingiz uchun aytaman,[br]men 22,6 kg atrofidaman.

0:00:46.858,0:00:51.615
Ya'ni, texnik sabablarga ko'ra, men[br]oddiy kichkina baraban olib yurolmasdim,

0:00:51.615,0:00:55.654
va shuning uchun, ansambl dirijyori[br]meni oraliqlarda zarbli

0:00:55.654,0:00:59.005
musiqiy asboblarda o'ynash uchun qo'ydi.

0:00:59.005,0:01:01.110
Xo'sh, zarbli asboblar —[br]bu qiziq edi...

0:01:01.110,0:01:04.803
Ularning ichiga juda zo'r yordamchi[br]zarbli asboblar kirardi:

0:01:04.803,0:01:08.623
bongo, litavrlar,

0:01:08.623,0:01:11.107
timbales va qo'ng'iroqchalar kabi.

0:01:11.107,0:01:13.318
Xa, bu qiziq edi.

0:01:13.318,0:01:18.420
Lekin bu marsh qilishga kirmasdi[br]va bu meni tushkunlikka tushirardi.

0:01:18.420,0:01:20.914
Shundayam meni marsh jamoasida kichkina

0:01:20.914,0:01:23.585
barabanda oraliqlarda o'ynash niyatidan

0:01:23.585,0:01:25.010
hech narsa to'xtatolmasdi.

0:01:25.010,0:01:29.865
Xo'sh, mening oilam va men, [br]muhandis bilan birga

0:01:29.865,0:01:31.793
menga olib yurishga oson bo'ladigan

0:01:31.793,0:01:35.580
mahkamlash konstruksiyasi ustida ishladik.

0:01:35.580,0:01:39.638
Ancha vaqt ishdan keyin biz yarata oldik.

0:01:39.638,0:01:43.859
Bu kichkina baraban 2,7 kg edi.

0:01:43.859,0:01:48.129
(Qarsaklar)

0:01:48.129,0:01:52.427
Men sizlarga progeriya haqda ozgina [br]ta'rif bermoqchiman.

0:01:52.427,0:01:58.340
Hozirgi kunda dunyoda bu kasallikka[br]chalingan bolalar soni 350 ta.

0:01:58.340,0:02:00.880
Ya'ni, bu juda kam uchraydigan kasallik.

0:02:00.880,0:02:03.335
Va uning zarar yetkazuvchi omillari [br]o'z ichiga:

0:02:03.335,0:02:07.408
terining yupqalashishi, o'sishdan to'xtab[br]qolish, juda sekin vazn olish,

0:02:07.408,0:02:09.011
va yurak kasalliklarini oladi.

0:02:09.011,0:02:12.586
O'tgan yili mening onam o'zining [br]tadqiqotchilar jamoasi bilan progeriyani

0:02:12.586,0:02:16.725
davolash bo'yicha ilk muvaffaqiyatli[br]izlanishlarni taqdim etdi,

0:02:16.725,0:02:19.460
shundan keyin mendan NPR'da [br]intervyu olishdi va

0:02:19.460,0:02:22.006
Jon Gamilton menga savol berdi:

0:02:22.006,0:02:24.272
"Insonlar siz haqingizda bilishi kerak

0:02:24.272,0:02:26.538
bo'lgan eng muhim narsa nima?"

0:02:26.538,0:02:29.264
Va men oddiy qilib,

0:02:29.264,0:02:31.691
baxtli hayot kechirayotganimni aytdim.

0:02:31.691,0:02:35.762
(Qarsaklar)

0:02:35.762,0:02:39.663
Hayotimda yetarlicha ko'p [br]qiyinchiliklar bo'lsa-da,

0:02:39.663,0:02:42.533
va ularning ko'pi progeriya [br]sababli bo'lsa-da,

0:02:42.533,0:02:45.095
odamlar menga achinishlarini xohlamayman.

0:02:45.095,0:02:47.802
Men bu noqulayliklar haqida o'ylamayman,

0:02:47.802,0:02:51.007
va nima bo'lganda ham [br]ko'pchiligini amallay olaman.

0:02:51.007,0:02:56.132
Bugun men sizlarga o'zimning baxtli hayot [br]konsepsiyamni ulashish uchun bu yerdaman.

0:02:56.132,0:03:00.757
Xo'sh, men 3 ta aspektga ajrataman.

0:03:00.757,0:03:04.830
Quyida mashhur Ferris Byullerdan sitata.

0:03:04.830,0:03:08.516
Konsepsiyamning birinchi aspekti —

0:03:08.516,0:03:11.552
Men nima qila olmasligim borasida [br]bosh qotirmayman,

0:03:11.552,0:03:14.032
chunki men qila oladigan [br]shuncha narsa bor.

0:03:14.032,0:03:16.799
Ba'zida insonlar shunga o'xshash [br]savollar berishadi:

0:03:16.799,0:03:19.252
"Progeriya bilan yashash qiyinmi?", yoki

0:03:19.252,0:03:22.569
"Bu bilan bog'liq qanday [br]qiyinchiliklar bilan har kuni yuzlanasiz?"

0:03:22.569,0:03:26.053
Men javob berishni xohlardim,[br]progeriya bilan kasal bo'lsam-da,

0:03:26.053,0:03:28.686
odatda u bilan bog'liq bo'lmagan narsalar

0:03:28.686,0:03:31.534
haqida o'ylab ko'p vaqtimni o'tkazaman.

0:03:31.534,0:03:36.435
Bu men bu kabi noqulayliklarni inkor [br]qilaman degani emas.

0:03:36.435,0:03:38.491
Men nimadir qila olmaganimda,[br]masalan,

0:03:38.491,0:03:42.557
uzoq masofaga yugurish, yoki [br]daxshatli attraksionlarda ucha olmaganimda

0:03:42.557,0:03:44.583
nimalardan mahrumligimni tushunaman.

0:03:44.583,0:03:48.499
Shunday bo'lsa ham, men o'zim qila [br]oladigan ishlarda

0:03:48.499,0:03:52.276
o'zimni diqqatimni jamlayman,[br]ular bilan ko'p shug'ullanaman,

0:03:52.276,0:03:55.791
bular skautlar harakati, yoki musiqa,[br]yoki komikslar,

0:03:55.791,0:03:58.756
yoki qanday men yoqtirgan Boston [br]sport jamoasi.

0:03:58.756,0:04:01.862
Xa, shunday. (Kulgu)

0:04:01.862,0:04:06.001
Xullas, ayrim narsalarni "qila olaman"[br]kategoriyasiga o'tkazish uchun

0:04:06.001,0:04:07.712
ba'zida original yechimlarni o'ylab

0:04:07.712,0:04:11.799
topishimga, ba'zi narsalarga esa [br]moslashishimga to'g'ri keladi.

0:04:11.799,0:04:14.803
Baraban bilan bo'lgan voqeadagidek.

0:04:14.803,0:04:16.512
Mana bu klipda

0:04:16.512,0:04:18.951
men "O'rgimchak odam" dagi musiqani [br]chalayapman,

0:04:18.951,0:04:21.760
Foksboro maktabi marsh ansambli tarkibida,

0:04:21.760,0:04:23.864
oraliqlardagi tanaffuslarda,[br]ikki yil oldin.

0:04:23.864,0:04:25.968
(Video)

0:04:26.648,0:04:32.026
♫ "O'rgimchak odam" filmidagi musiqa ♫

0:05:07.115,0:05:10.622
(Qarsaklar)

0:05:10.622,0:05:12.548
Tashakkur.

0:05:12.548,0:05:14.921
Yaxshi, xo'sh...

0:05:14.921,0:05:16.226
Bu juda zo'r bo'lgan edi.

0:05:16.226,0:05:19.561
Shunday qilib men marsh jamoasida [br]kichkina barabanda o'ynash orzuyimni

0:05:19.561,0:05:22.117
amalga oshira oldim,

0:05:22.117,0:05:25.009
chunki men buni uddalay olishimga [br]ishongandim.

0:05:25.009,0:05:30.167
Xullas, umid qilamanki, sizlar ham[br]o'z orzularingizga erisha olasizlar.

0:05:30.167,0:05:32.382
Konsepsiyamning ikkinchi aspekti — bu

0:05:32.382,0:05:36.818
o'zimni o'zim xohlagan insonlar bilan [br]o'rashim,

0:05:36.818,0:05:38.634
yuqori irodali insonlar bilan.

0:05:38.634,0:05:42.680
Mening shunday ajoyib oilam bor ekanligi [br]bu mening omadli ekanligimdir.

0:05:42.680,0:05:46.110
Oilam meni doim qo'llab-quvvatlagan,[br]butun umrim davomida.

0:05:46.110,0:05:48.489
Va mening shunday yaqin o'rtoqlarimning[br]borligi ham

0:05:48.489,0:05:51.498
mening omadliligimdan dalolat beradi.

0:05:51.498,0:05:55.050
Albatta biz biroz "aqldan ozgan" [br]musiqiy fanatlarga o'xshaymiz,

0:05:55.050,0:05:57.412
va biz bir-birimiz bilan muloqotdan[br]zavq olamiz,

0:05:57.412,0:06:00.434
kerakli payt bir-birimizga yordam beramiz.

0:06:00.434,0:06:04.562
Biz bir-birimizni ichkaridan ko'ramiz.

0:06:04.562,0:06:06.865
Biz ba'zida biroz tentakroqmiz.

0:06:06.865,0:06:09.372
Hozir biz o'rta maktabning oxirgi [br]sinfidamiz,

0:06:09.372,0:06:15.129
va biz yoshroq ishtirokchilarni musiqiy [br]guruhimizga chaqirishimiz mumkin,

0:06:15.129,0:06:16.986
xuddi bir jamoadek.

0:06:16.986,0:06:19.916
Musiqiy guruhda bo'lish menga nega yoqadi?[br]biz birgalikda

0:06:19.916,0:06:22.834
chaladigan musiqa — jonli,

0:06:22.834,0:06:28.243
sohta emas,[br]u progeriyani chetga surib tashlaydi.

0:06:28.243,0:06:29.875
Shunday ekan, men bu haqda

0:06:29.875,0:06:33.870
havotirlanmayman, musiqa bilan [br]shug'ullanib o'zimni yaxshi his qilaman.

0:06:33.870,0:06:36.564
Va hattoki, hujjatli film olib,

0:06:36.564,0:06:38.975
bir-ikki marta televidenyega [br]borganimda yoki

0:06:38.975,0:06:41.459
har kuni o'z yaqinlarim orasida o'zimni

0:06:41.459,0:06:45.607
hissiyotlarimning eng yuqori [br]nuqtasida his qilaman.

0:06:45.607,0:06:49.005
Ular mening hayotimga ijobiy ta'sir[br]ko'rsatishadi va

0:06:49.005,0:06:54.699
men ham xuddi shunday, ularga ijobiy[br]ta'sir ko'rsataman deb umid qilaman.

0:06:54.699,0:06:58.247
(Qarsaklar)

0:06:58.247,0:06:59.436
Rahmat.

0:06:59.436,0:07:01.395
Xo'sh, eng muhimi bu yerda shuki,

0:07:01.395,0:07:05.294
umid qilamanki,[br]siz o'z oilangizni qadrlaysiz va sevasiz.

0:07:05.294,0:07:08.453
O'z do'stlaringizni, aka-ukalaringizni,

0:07:08.453,0:07:11.860
o'rtoqlaringiz, ustozlaringizni va

0:07:11.860,0:07:13.557
atrofingizdagilarni.

0:07:13.557,0:07:16.654
Chunki buning barchasi kundalik hayotimiz[br]uchun juda muhim,

0:07:16.654,0:07:20.980
va buning barchasi hayotimizga yetarlicha[br]ijobiy ta'sir ko'rsatadi.

0:07:20.980,0:07:23.663
Konsepsiyamning uchinchi aspekti —

0:07:23.663,0:07:25.898
Doim oldinga harakatlaning.

0:07:25.898,0:07:29.686
Mana bu siz hammangiz biladigan inson[br]Uolt Disneyning gaplari,

0:07:29.686,0:07:31.495
va bu mening eng sevimli sitatam.

0:07:31.495,0:07:34.230
Men doim quvonch bilan kutib yashayman.

0:07:34.230,0:07:37.265
Hayotimni boyitish uchun doim olg'a[br]intilaman, harakat qilaman.

0:07:37.265,0:07:38.956
Bu katta narsa bo'lishi [br]shart emas.

0:07:38.956,0:07:41.339
Bu yoki sabrsizlik bilan

0:07:41.339,0:07:43.946
kutilgan komiksning davomi chiqishi,

0:07:43.946,0:07:46.467
yoki oila bilan birga [br]uzoqqa dam olishga otlanish,

0:07:46.467,0:07:48.736
yoki do'stlar davrasida [br]vaqtichog'lik qilish,

0:07:48.736,0:07:51.691
maktabda keyingi futbol o'yiniga[br]tayyorgarlik ko'rish.

0:07:51.691,0:07:55.013
Bularning barchasi asosiy narsalarda[br]diqqatni jamlashga va

0:07:55.013,0:07:57.851
oldinda yorqin kelajak [br]kutayotganini his qilishga,

0:07:57.851,0:08:02.287
va ba'zida men duch keladigan qiyin [br]vaqtlardan o'tishga yordam beradi.

0:08:02.287,0:08:07.795
Dunyoni bunday ko'ra olish uzoqni ko'zlay[br]olish va ehtiyotkorlik talab qiladi.

0:08:07.795,0:08:11.389
Men o'zimga achinib kuchimni [br]sarflamaslikka harakat qilaman,

0:08:11.389,0:08:14.871
chunki shunday bo'lganida men o'zimni[br]boshi berk bo'chaga kirib qolgandek

0:08:14.871,0:08:19.454
his qilaman va bunday paytda quvonch [br]uchun o'zingizda kuch topa olmaysiz.

0:08:19.454,0:08:23.015
Bu albatta tushkunliklarga e'tibor[br]qilmayman degani emas,

0:08:23.015,0:08:24.897
men ularni qabul qilaman,

0:08:24.897,0:08:28.273
hech bo'lmaganda ularni tushunish

0:08:28.273,0:08:31.775
va buni oldini olishga harakat[br]qilish uchun.

0:08:31.775,0:08:35.081
Men yoshroq bo'lganimda,[br]injener bo'lishni xohlaganman.

0:08:35.081,0:08:36.995
Men ixtirochi bo'lishni istaganman.

0:08:36.995,0:08:40.009
Dunyoga yorqin kelajak olib kela oladigan.

0:08:40.009,0:08:42.184
Menimcha bu mening Lego o'yinchoqlarini

0:08:42.184,0:08:44.502
yoqtirganimdan bo'lsa kerak.[br]Ularni yasayotib men

0:08:44.502,0:08:47.814
o'z g'oyalarimda mustaqil ekanimni [br]his qilardim.

0:08:47.814,0:08:53.489
Va bu menimcha oilam va ustozlarim ham[br]tufayli shunday.

0:08:53.489,0:08:57.985
Ular menga doim o'zimni butun va pozitiv [br]baholay olishimga yordam berishgan.

0:08:57.985,0:09:01.133
Bugungi kunda mening intilishlarim [br]biroz o'zgargan,

0:09:01.133,0:09:03.609
men o'zimni biologiya fanida [br]sinab ko'rmoqchiman,

0:09:03.609,0:09:07.948
ehtimol aynan hujayra biologiyasi yoki[br]genetika sohasida

0:09:07.948,0:09:12.417
yoki bioximiya yoki shunga [br]o'xshash yo'nalishda.

0:09:12.417,0:09:15.698
Bu mening do'stim, va men uni juda [br]hurmat qilaman.

0:09:15.698,0:09:19.252
Frensis Kollinz, Sog'liqni Saqlash [br]Milliy Instituti direktori,

0:09:19.252,0:09:22.670
va biz bu yerda o'tgan yilgi TEDMEDda[br]suhbat qurayapmiz.

0:09:22.670,0:09:26.208
Menda shunday hissiyot borki,[br]kim bo'lishimdan qat'iy nazar

0:09:26.208,0:09:29.521
men dunyoni o'zgartira olishimga [br]ishonaman.

0:09:29.521,0:09:34.417
Va bunga harakat qilayotib men o'zimni[br]baxtiyor his qilaman.

0:09:34.417,0:09:36.562
4 yilcha oldin,

0:09:36.562,0:09:39.247
HBO "Semga ko'ra hayot" deb nomlanadigan [br]men va oilam

0:09:39.247,0:09:42.282
haqda hujjatli film suratga olishni[br]boshladi.

0:09:42.282,0:09:46.285
Bu ajoyib tajriba bo'ldi, lekin nima[br]bo'lgandayam bu to'rt yil oldin edi.

0:09:46.285,0:09:49.761
Va hammada bo'lganidek, mening qarashlarim[br]bu vaqt ichida ancha o'zgardi.

0:09:49.761,0:09:54.165
Umid qilamanki, yanada yaxshi tomonga.

0:09:54.165,0:09:58.798
Lekin ba'zi narsalar baribir o'zgarmadi.

0:09:58.798,0:10:02.679
Masalan mening dunyoqarashim va [br]hayotga munosabatim.

0:10:02.679,0:10:04.730
Men sizlarga men kichkinaroq

0:10:04.730,0:10:07.921
bo'lgan paytimning videosini [br]ko'rsatishni xohlardim,

0:10:07.921,0:10:11.492
u yerda bu munosabatni ko'rish mumkin.

0:10:11.492,0:10:12.659
(Video)

0:10:12.659,0:10:16.314
Men kasallikning genezisi haqda [br]ko'p narsa bilaman.

0:10:16.314,0:10:19.857
Bu hozir aktual emas,

0:10:19.857,0:10:21.335
lekin bir paytlar ko'pchilik

0:10:21.335,0:10:24.135
bolalarning o'limiga sabab ekani va

0:10:24.135,0:10:26.669
bu har bir insonni tushkunlikka tushirishi

0:10:26.669,0:10:29.639
meni bu materialni yaratishdan [br]to'xtatib turardi.

0:10:29.639,0:10:35.276
Va hozir siz hujayralar rivojlanishini [br]sekinlashtiruvchi defektli

0:10:35.276,0:10:39.072
oqsilsimon moddani ko'rayapsiz.

0:10:40.465,0:10:42.076
Shunday ekan,

0:10:42.076,0:10:45.458
men endi o'zimni ancha yengil his qilaman,

0:10:45.458,0:10:48.210
men progeriya haqda

0:10:48.210,0:10:51.802
o'ylamasligim kerak.

0:10:55.905,0:10:57.507
Yomon emas, to'g'rimi?

0:10:57.507,0:11:01.596
(Qarsaklar)

0:11:01.596,0:11:02.671
Rahmat.

0:11:02.671,0:11:05.990
Ko'rayotganingizdek, men ko'p [br]yillar davomida shunday o'ylaganman.

0:11:05.990,0:11:10.435
Lekin men bu konsepsiyamning barcha [br]aspektlarini bir vaqtning o'zida his qila

0:11:10.435,0:11:14.176
olmasdim.[br]O'tgan yilning yanvarigacha.

0:11:14.176,0:11:19.010
Men og'ir kasallangan edim, bir necha kun[br]shifoxonada bronxit bilan yotdim.

0:11:19.010,0:11:23.600
Va bu payt meni men qiladigan, [br]shaxs ekanligimni his qilishga

0:11:23.600,0:11:25.124
yordam beradigan hayotimning

0:11:25.124,0:11:27.952
barcha sferalaridan mahrum edim.

0:11:27.952,0:11:31.029
Lekin sog'ayayotganimni va tez orada

0:11:31.029,0:11:34.009
o'zimni yaxshi his qila boshlashimni [br]tushunishim

0:11:34.009,0:11:36.659
oldinga harakat qilishimga yordam berardi.

0:11:36.659,0:11:39.211
Va ba'zida,[br]dadilroq bo'lishimga to'g'ri kelar edi,

0:11:39.211,0:11:41.003
va bu har doim ham oson kechmas edi.

0:11:41.003,0:11:42.617
Ba'zida qaltirardim,

0:11:42.617,0:11:44.363
yomon kunlar ham bo'lardi,

0:11:44.363,0:11:47.857
lekin qat'iyatli bo'lish oson[br]emasligini tushunardim.

0:11:47.857,0:11:51.957
Va shuni ham tushunardimki, bu [br]meni oldinga intilishim uchun kalit edi.

0:11:51.957,0:11:54.181
Ya'ni, aniq qilib aytganda,

0:11:54.181,0:11:57.725
men vaqtimni va kuchimni o'zimga[br]achinish bilan sarflamas edim.

0:11:57.725,0:12:01.040
Men o'zimni yaqin insonlarim [br]bilan o'rayman va

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oldinga intilishda davom etaman.

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Va shunday bir kayfiyat bilan,[br]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,[br]agar sizga bu yoqsa.

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Bizning maktabimizda ertaga [br]bitiruvchilar balli,

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va men u yerda bo'laman.

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Katta rahmat sizlarga.

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(Qarsaklar)