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Hammaga salom.

2
00:00:20,217 --> 00:00:21,634
Mening ismim Sem,

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00:00:21,634 --> 00:00:24,401
men endigina 17 yoshga kirdim.

4
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Bir necha yil oldin, maktabda xali 
9-sinfga o'tmasimdan avval,

5
00:00:27,648 --> 00:00:32,852
men Foksboro maktabi marsh ansamblida
kichkina baraban chalishni xohlardim,

6
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va bu orzuyim edi,
men uni amalga oshirishim kerak edi.

7
00:00:35,589 --> 00:00:37,852
Lekin istalgan bir osiladigan baraban

8
00:00:37,852 --> 00:00:40,155
tahminan 18 kg og'irlikka ega edi,

9
00:00:40,155 --> 00:00:42,770
men esa kasalman. 
Kasallik progeriya deb nomlanadi.

10
00:00:42,770 --> 00:00:46,858
Tasavvur qila olishingiz uchun aytaman,
men 22,6 kg atrofidaman.

11
00:00:46,858 --> 00:00:51,615
Ya'ni, texnik sabablarga ko'ra, men
oddiy kichkina baraban olib yurolmasdim,

12
00:00:51,615 --> 00:00:55,654
va shuning uchun, ansambl dirijyori
meni oraliqlarda zarbli

13
00:00:55,654 --> 00:00:59,005
musiqiy asboblarda o'ynash uchun qo'ydi.

14
00:00:59,005 --> 00:01:01,110
Xo'sh, zarbli asboblar —
bu qiziq edi...

15
00:01:01,110 --> 00:01:04,803
Ularning ichiga juda zo'r yordamchi
zarbli asboblar kirardi:

16
00:01:04,803 --> 00:01:08,623
bongo, litavrlar,

17
00:01:08,623 --> 00:01:11,107
timbales va qo'ng'iroqchalar kabi.

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Xa, bu qiziq edi.

19
00:01:13,318 --> 00:01:18,420
Lekin bu marsh qilishga kirmasdi
va bu meni tushkunlikka tushirardi.

20
00:01:18,420 --> 00:01:20,914
Shundayam meni marsh jamoasida kichkina

21
00:01:20,914 --> 00:01:23,585
barabanda oraliqlarda o'ynash niyatidan

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hech narsa to'xtatolmasdi.

23
00:01:25,010 --> 00:01:29,865
Xo'sh, mening oilam va men, 
muhandis bilan birga

24
00:01:29,865 --> 00:01:31,793
menga olib yurishga oson bo'ladigan

25
00:01:31,793 --> 00:01:35,580
mahkamlash konstruksiyasi ustida ishladik.

26
00:01:35,580 --> 00:01:39,638
Ancha vaqt ishdan keyin biz yarata oldik.

27
00:01:39,638 --> 00:01:43,859
Bu kichkina baraban 2,7 kg edi.

28
00:01:43,859 --> 00:01:48,129
(Qarsaklar)

29
00:01:48,129 --> 00:01:52,427
Men sizlarga progeriya haqda ozgina 
ta'rif bermoqchiman.

30
00:01:52,427 --> 00:01:58,340
Hozirgi kunda dunyoda bu kasallikka
chalingan bolalar soni 350 ta.

31
00:01:58,340 --> 00:02:00,880
Ya'ni, bu juda kam uchraydigan kasallik.

32
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Va uning zarar yetkazuvchi omillari 
o'z ichiga:

33
00:02:03,335 --> 00:02:07,408
terining yupqalashishi, o'sishdan to'xtab
qolish, juda sekin vazn olish,

34
00:02:07,408 --> 00:02:09,011
va yurak kasalliklarini oladi.

35
00:02:09,011 --> 00:02:12,586
O'tgan yili mening onam o'zining 
tadqiqotchilar jamoasi bilan progeriyani

36
00:02:12,586 --> 00:02:16,725
davolash bo'yicha ilk muvaffaqiyatli
izlanishlarni taqdim etdi,

37
00:02:16,725 --> 00:02:19,460
shundan keyin mendan NPR'da 
intervyu olishdi va

38
00:02:19,460 --> 00:02:22,006
Jon Gamilton menga savol berdi:

39
00:02:22,006 --> 00:02:24,272
"Insonlar siz haqingizda bilishi kerak

40
00:02:24,272 --> 00:02:26,538
bo'lgan eng muhim narsa nima?"

41
00:02:26,538 --> 00:02:29,264
Va men oddiy qilib,

42
00:02:29,264 --> 00:02:31,691
baxtli hayot kechirayotganimni aytdim.

43
00:02:31,691 --> 00:02:35,762
(Qarsaklar)

44
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Hayotimda yetarlicha ko'p 
qiyinchiliklar bo'lsa-da,

45
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va ularning ko'pi progeriya 
sababli bo'lsa-da,

46
00:02:42,533 --> 00:02:45,095
odamlar menga achinishlarini xohlamayman.

47
00:02:45,095 --> 00:02:47,802
Men bu noqulayliklar haqida o'ylamayman,

48
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va nima bo'lganda ham 
ko'pchiligini amallay olaman.

49
00:02:51,007 --> 00:02:56,132
Bugun men sizlarga o'zimning baxtli hayot 
konsepsiyamni ulashish uchun bu yerdaman.

50
00:02:56,132 --> 00:03:00,757
Xo'sh, men 3 ta aspektga ajrataman.

51
00:03:00,757 --> 00:03:04,830
Quyida mashhur Ferris Byullerdan sitata.

52
00:03:04,830 --> 00:03:08,516
Konsepsiyamning birinchi aspekti —

53
00:03:08,516 --> 00:03:11,552
Men nima qila olmasligim borasida 
bosh qotirmayman,

54
00:03:11,552 --> 00:03:14,032
chunki men qila oladigan 
shuncha narsa bor.

55
00:03:14,032 --> 00:03:16,799
Ba'zida insonlar shunga o'xshash 
savollar berishadi:

56
00:03:16,799 --> 00:03:19,252
"Progeriya bilan yashash qiyinmi?", yoki

57
00:03:19,252 --> 00:03:22,569
"Bu bilan bog'liq qanday 
qiyinchiliklar bilan har kuni yuzlanasiz?"

58
00:03:22,569 --> 00:03:26,053
Men javob berishni xohlardim,
progeriya bilan kasal bo'lsam-da,

59
00:03:26,053 --> 00:03:28,686
odatda u bilan bog'liq bo'lmagan narsalar

60
00:03:28,686 --> 00:03:31,534
haqida o'ylab ko'p vaqtimni o'tkazaman.

61
00:03:31,534 --> 00:03:36,435
Bu men bu kabi noqulayliklarni inkor 
qilaman degani emas.

62
00:03:36,435 --> 00:03:38,491
Men nimadir qila olmaganimda,
masalan,

63
00:03:38,491 --> 00:03:42,557
uzoq masofaga yugurish, yoki 
daxshatli attraksionlarda ucha olmaganimda

64
00:03:42,557 --> 00:03:44,583
nimalardan mahrumligimni tushunaman.

65
00:03:44,583 --> 00:03:48,499
Shunday bo'lsa ham, men o'zim qila 
oladigan ishlarda

66
00:03:48,499 --> 00:03:52,276
o'zimni diqqatimni jamlayman,
ular bilan ko'p shug'ullanaman,

67
00:03:52,276 --> 00:03:55,791
bular skautlar harakati, yoki musiqa,
yoki komikslar,

68
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yoki qanday men yoqtirgan Boston 
sport jamoasi.

69
00:03:58,756 --> 00:04:01,862
Xa, shunday. (Kulgu)

70
00:04:01,862 --> 00:04:06,001
Xullas, ayrim narsalarni "qila olaman"
kategoriyasiga o'tkazish uchun

71
00:04:06,001 --> 00:04:07,712
ba'zida original yechimlarni o'ylab

72
00:04:07,712 --> 00:04:11,799
topishimga, ba'zi narsalarga esa 
moslashishimga to'g'ri keladi.

73
00:04:11,799 --> 00:04:14,803
Baraban bilan bo'lgan voqeadagidek.

74
00:04:14,803 --> 00:04:16,512
Mana bu klipda

75
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men "O'rgimchak odam" dagi musiqani 
chalayapman,

76
00:04:18,951 --> 00:04:21,760
Foksboro maktabi marsh ansambli tarkibida,

77
00:04:21,760 --> 00:04:23,864
oraliqlardagi tanaffuslarda,
ikki yil oldin.

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00:04:23,864 --> 00:04:25,968
(Video)

79
00:04:26,648 --> 00:04:32,026
♫ "O'rgimchak odam" filmidagi musiqa ♫

80
00:05:07,115 --> 00:05:10,622
(Qarsaklar)

81
00:05:10,622 --> 00:05:12,548
Tashakkur.

82
00:05:12,548 --> 00:05:14,921
Yaxshi, xo'sh...

83
00:05:14,921 --> 00:05:16,226
Bu juda zo'r bo'lgan edi.

84
00:05:16,226 --> 00:05:19,561
Shunday qilib men marsh jamoasida 
kichkina barabanda o'ynash orzuyimni

85
00:05:19,561 --> 00:05:22,117
amalga oshira oldim,

86
00:05:22,117 --> 00:05:25,009
chunki men buni uddalay olishimga 
ishongandim.

87
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Xullas, umid qilamanki, sizlar ham
o'z orzularingizga erisha olasizlar.

88
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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.

91
00:05:38,634 --> 00:05:42,680
Mening shunday ajoyib oilam bor ekanligi 
bu mening omadli ekanligimdir.

92
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Oilam meni doim qo'llab-quvvatlagan,
butun umrim davomida.

93
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Va mening shunday yaqin o'rtoqlarimning
borligi ham

94
00:05:48,489 --> 00:05:51,498
mening omadliligimdan dalolat beradi.

95
00:05:51,498 --> 00:05:55,050
Albatta biz biroz "aqldan ozgan" 
musiqiy fanatlarga o'xshaymiz,

96
00:05:55,050 --> 00:05:57,412
va biz bir-birimiz bilan muloqotdan
zavq olamiz,

97
00:05:57,412 --> 00:06:00,434
kerakli payt bir-birimizga yordam beramiz.

98
00:06:00,434 --> 00:06:04,562
Biz bir-birimizni ichkaridan ko'ramiz.

99
00:06:04,562 --> 00:06:06,865
Biz ba'zida biroz tentakroqmiz.

100
00:06:06,865 --> 00:06:09,372
Hozir biz o'rta maktabning oxirgi 
sinfidamiz,

101
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va biz yoshroq ishtirokchilarni musiqiy 
guruhimizga chaqirishimiz mumkin,

102
00:06:15,129 --> 00:06:16,986
xuddi bir jamoadek.

103
00:06:16,986 --> 00:06:19,916
Musiqiy guruhda bo'lish menga nega yoqadi?
biz birgalikda

104
00:06:19,916 --> 00:06:22,834
chaladigan musiqa — jonli,

105
00:06:22,834 --> 00:06:28,243
sohta emas,
u progeriyani chetga surib tashlaydi.

106
00:06:28,243 --> 00:06:29,875
Shunday ekan, men bu haqda

107
00:06:29,875 --> 00:06:33,870
havotirlanmayman, musiqa bilan 
shug'ullanib o'zimni yaxshi his qilaman.

108
00:06:33,870 --> 00:06:36,564
Va hattoki, hujjatli film olib,

109
00:06:36,564 --> 00:06:38,975
bir-ikki marta televidenyega 
borganimda yoki

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har kuni o'z yaqinlarim orasida o'zimni

111
00:06:41,459 --> 00:06:45,607
hissiyotlarimning eng yuqori 
nuqtasida his qilaman.

112
00:06:45,607 --> 00:06:49,005
Ular mening hayotimga ijobiy ta'sir
ko'rsatishadi va

113
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men ham xuddi shunday, ularga ijobiy
ta'sir ko'rsataman deb umid qilaman.

114
00:06:54,699 --> 00:06:58,247
(Qarsaklar)

115
00:06:58,247 --> 00:06:59,436
Rahmat.

116
00:06:59,436 --> 00:07:01,395
Xo'sh, eng muhimi bu yerda shuki,

117
00:07:01,395 --> 00:07:05,294
umid qilamanki,
siz o'z oilangizni qadrlaysiz va sevasiz.

118
00:07:05,294 --> 00:07:08,453
O'z do'stlaringizni, aka-ukalaringizni,

119
00:07:08,453 --> 00:07:11,860
o'rtoqlaringiz, ustozlaringizni va

120
00:07:11,860 --> 00:07:13,557
atrofingizdagilarni.

121
00:07:13,557 --> 00:07:16,654
Chunki buning barchasi kundalik hayotimiz
uchun juda muhim,

122
00:07:16,654 --> 00:07:20,980
va buning barchasi hayotimizga yetarlicha
ijobiy ta'sir ko'rsatadi.

123
00:07:20,980 --> 00:07:23,663
Konsepsiyamning uchinchi aspekti —

124
00:07:23,663 --> 00:07:25,898
Doim oldinga harakatlaning.

125
00:07:25,898 --> 00:07:29,686
Mana bu siz hammangiz biladigan inson
Uolt Disneyning gaplari,

126
00:07:29,686 --> 00:07:31,495
va bu mening eng sevimli sitatam.

127
00:07:31,495 --> 00:07:34,230
Men doim quvonch bilan kutib yashayman.

128
00:07:34,230 --> 00:07:37,265
Hayotimni boyitish uchun doim olg'a
intilaman, harakat qilaman.

129
00:07:37,265 --> 00:07:38,956
Bu katta narsa bo'lishi 
shart emas.

130
00:07:38,956 --> 00:07:41,339
Bu yoki sabrsizlik bilan

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00:07:41,339 --> 00:07:43,946
kutilgan komiksning davomi chiqishi,

132
00:07:43,946 --> 00:07:46,467
yoki oila bilan birga 
uzoqqa dam olishga otlanish,

133
00:07:46,467 --> 00:07:48,736
yoki do'stlar davrasida 
vaqtichog'lik qilish,

134
00:07:48,736 --> 00:07:51,691
maktabda keyingi futbol o'yiniga
tayyorgarlik ko'rish.

135
00:07:51,691 --> 00:07:55,013
Bularning barchasi asosiy narsalarda
diqqatni jamlashga va

136
00:07:55,013 --> 00:07:57,851
oldinda yorqin kelajak 
kutayotganini his qilishga,

137
00:07:57,851 --> 00:08:02,287
va ba'zida men duch keladigan qiyin 
vaqtlardan o'tishga yordam beradi.

138
00:08:02,287 --> 00:08:07,795
Dunyoni bunday ko'ra olish uzoqni ko'zlay
olish va ehtiyotkorlik talab qiladi.

139
00:08:07,795 --> 00:08:11,389
Men o'zimga achinib kuchimni 
sarflamaslikka harakat qilaman,

140
00:08:11,389 --> 00:08:14,871
chunki shunday bo'lganida men o'zimni
boshi berk bo'chaga kirib qolgandek

141
00:08:14,871 --> 00:08:19,454
his qilaman va bunday paytda quvonch 
uchun o'zingizda kuch topa olmaysiz.

142
00:08:19,454 --> 00:08:23,015
Bu albatta tushkunliklarga e'tibor
qilmayman degani emas,

143
00:08:23,015 --> 00:08:24,897
men ularni qabul qilaman,

144
00:08:24,897 --> 00:08:28,273
hech bo'lmaganda ularni tushunish

145
00:08:28,273 --> 00:08:31,775
va buni oldini olishga harakat
qilish uchun.

146
00:08:31,775 --> 00:08:35,081
Men yoshroq bo'lganimda,
injener bo'lishni xohlaganman.

147
00:08:35,081 --> 00:08:36,995
Men ixtirochi bo'lishni istaganman.

148
00:08:36,995 --> 00:08:40,009
Dunyoga yorqin kelajak olib kela oladigan.

149
00:08:40,009 --> 00:08:42,184
Menimcha bu mening Lego o'yinchoqlarini

150
00:08:42,184 --> 00:08:44,502
yoqtirganimdan bo'lsa kerak.
Ularni yasayotib men

151
00:08:44,502 --> 00:08:47,814
o'z g'oyalarimda mustaqil ekanimni 
his qilardim.

152
00:08:47,814 --> 00:08:53,489
Va bu menimcha oilam va ustozlarim ham
tufayli shunday.

153
00:08:53,489 --> 00:08:57,985
Ular menga doim o'zimni butun va pozitiv 
baholay olishimga yordam berishgan.

154
00:08:57,985 --> 00:09:01,133
Bugungi kunda mening intilishlarim 
biroz o'zgargan,

155
00:09:01,133 --> 00:09:03,609
men o'zimni biologiya fanida 
sinab ko'rmoqchiman,

156
00:09:03,609 --> 00:09:07,948
ehtimol aynan hujayra biologiyasi yoki
genetika sohasida

157
00:09:07,948 --> 00:09:12,417
yoki bioximiya yoki shunga 
o'xshash yo'nalishda.

158
00:09:12,417 --> 00:09:15,698
Bu mening do'stim, va men uni juda 
hurmat qilaman.

159
00:09:15,698 --> 00:09:19,252
Frensis Kollinz, Sog'liqni Saqlash 
Milliy Instituti direktori,

160
00:09:19,252 --> 00:09:22,670
va biz bu yerda o'tgan yilgi TEDMEDda
suhbat qurayapmiz.

161
00:09:22,670 --> 00:09:26,208
Menda shunday hissiyot borki,
kim bo'lishimdan qat'iy nazar

162
00:09:26,208 --> 00:09:29,521
men dunyoni o'zgartira olishimga 
ishonaman.

163
00:09:29,521 --> 00:09:34,417
Va bunga harakat qilayotib men o'zimni
baxtiyor his qilaman.

164
00:09:34,417 --> 00:09:36,562
4 yilcha oldin,

165
00:09:36,562 --> 00:09:39,247
HBO "Semga ko'ra hayot" deb nomlanadigan 
men va oilam

166
00:09:39,247 --> 00:09:42,282
haqda hujjatli film suratga olishni
boshladi.

167
00:09:42,282 --> 00:09:46,285
Bu ajoyib tajriba bo'ldi, lekin nima
bo'lgandayam bu to'rt yil oldin edi.

168
00:09:46,285 --> 00:09:49,761
Va hammada bo'lganidek, mening qarashlarim
bu vaqt ichida ancha o'zgardi.

169
00:09:49,761 --> 00:09:54,165
Umid qilamanki, yanada yaxshi tomonga.

170
00:09:54,165 --> 00:09:58,798
Lekin ba'zi narsalar baribir o'zgarmadi.

171
00:09:58,798 --> 00:10:02,679
Masalan mening dunyoqarashim va 
hayotga munosabatim.

172
00:10:02,679 --> 00:10:04,730
Men sizlarga men kichkinaroq

173
00:10:04,730 --> 00:10:07,921
bo'lgan paytimning videosini 
ko'rsatishni xohlardim,

174
00:10:07,921 --> 00:10:11,492
u yerda bu munosabatni ko'rish mumkin.

175
00:10:11,492 --> 00:10:12,659
(Video)

176
00:10:12,659 --> 00:10:16,314
Men kasallikning genezisi haqda 
ko'p narsa bilaman.

177
00:10:16,314 --> 00:10:19,857
Bu hozir aktual emas,

178
00:10:19,857 --> 00:10:21,335
lekin bir paytlar ko'pchilik

179
00:10:21,335 --> 00:10:24,135
bolalarning o'limiga sabab ekani va

180
00:10:24,135 --> 00:10:26,669
bu har bir insonni tushkunlikka tushirishi

181
00:10:26,669 --> 00:10:29,639
meni bu materialni yaratishdan 
to'xtatib turardi.

182
00:10:29,639 --> 00:10:35,276
Va hozir siz hujayralar rivojlanishini 
sekinlashtiruvchi defektli

183
00:10:35,276 --> 00:10:39,072
oqsilsimon moddani ko'rayapsiz.

184
00:10:40,465 --> 00:10:42,076
Shunday ekan,

185
00:10:42,076 --> 00:10:45,458
men endi o'zimni ancha yengil his qilaman,

186
00:10:45,458 --> 00:10:48,210
men progeriya haqda

187
00:10:48,210 --> 00:10:51,802
o'ylamasligim kerak.

188
00:10:55,905 --> 00:10:57,507
Yomon emas, to'g'rimi?

189
00:10:57,507 --> 00:11:01,596
(Qarsaklar)

190
00:11:01,596 --> 00:11:02,671
Rahmat.

191
00:11:02,671 --> 00:11:05,990
Ko'rayotganingizdek, men ko'p 
yillar davomida shunday o'ylaganman.

192
00:11:05,990 --> 00:11:10,435
Lekin men bu konsepsiyamning barcha 
aspektlarini bir vaqtning o'zida his qila

193
00:11:10,435 --> 00:11:14,176
olmasdim.
O'tgan yilning yanvarigacha.

194
00:11:14,176 --> 00:11:19,010
Men og'ir kasallangan edim, bir necha kun
shifoxonada bronxit bilan yotdim.

195
00:11:19,010 --> 00:11:23,600
Va bu payt meni men qiladigan, 
shaxs ekanligimni his qilishga

196
00:11:23,600 --> 00:11:25,124
yordam beradigan hayotimning

197
00:11:25,124 --> 00:11:27,952
barcha sferalaridan mahrum edim.

198
00:11:27,952 --> 00:11:31,029
Lekin sog'ayayotganimni va tez orada

199
00:11:31,029 --> 00:11:34,009
o'zimni yaxshi his qila boshlashimni 
tushunishim

200
00:11:34,009 --> 00:11:36,659
oldinga harakat qilishimga yordam berardi.

201
00:11:36,659 --> 00:11:39,211
Va ba'zida,
dadilroq bo'lishimga to'g'ri kelar edi,

202
00:11:39,211 --> 00:11:41,003
va bu har doim ham oson kechmas edi.

203
00:11:41,003 --> 00:11:42,617
Ba'zida qaltirardim,

204
00:11:42,617 --> 00:11:44,363
yomon kunlar ham bo'lardi,

205
00:11:44,363 --> 00:11:47,857
lekin qat'iyatli bo'lish oson
emasligini tushunardim.

206
00:11:47,857 --> 00:11:51,957
Va shuni ham tushunardimki, bu 
meni oldinga intilishim uchun kalit edi.

207
00:11:51,957 --> 00:11:54,181
Ya'ni, aniq qilib aytganda,

208
00:11:54,181 --> 00:11:57,725
men vaqtimni va kuchimni o'zimga
achinish bilan sarflamas edim.

209
00:11:57,725 --> 00:12:01,040
Men o'zimni yaqin insonlarim 
bilan o'rayman va

210
00:12:01,040 --> 00:12:03,317
oldinga intilishda davom etaman.

211
00:12:03,317 --> 00:12:06,689
Va shunday bir kayfiyat bilan,
umid qilamanki, hammangiz,

212
00:12:06,689 --> 00:12:08,766
nima bo'lishiga, to'siqlarga qaramay

213
00:12:08,766 --> 00:12:11,613
baxtli hayot kechira olasizlar.

214
00:12:11,613 --> 00:12:13,131
To'xtang, yana bir soniya,

215
00:12:13,131 --> 00:12:15,619
yana bitta kichik maslahat —

216
00:12:15,619 --> 00:12:17,219
(Kulgu)

217
00:12:17,219 --> 00:12:19,709
Ziyofatlarni o'tkazib yubormang,
agar sizga bu yoqsa.

218
00:12:19,709 --> 00:12:22,085
Bizning maktabimizda ertaga 
bitiruvchilar balli,

219
00:12:22,085 --> 00:12:24,169
va men u yerda bo'laman.

220
00:12:24,169 --> 00:12:25,641
Katta rahmat sizlarga.

221
00:12:25,641 --> 00:12:31,295
(Qarsaklar)