MS Kev Xam Pom: Kuv Zaj Lus Qhia Txog Kev Soj Ntsuam

Zoo Siab

• Matthew Walker, kuaj mob hauv 2013
• Danielle Acierto, kuaj mob rau xyoo 2004
• Valerie Hailey, kuaj pom xyoo 1984

"Koj muaj MS." Txawm hais tias yuav tsum tau siv los ntawm koj tus kws kho mob, koj tus kws kho paj hlwb, lossis koj qhov tseem ceeb, peb peb cov lus yooj yim no muaj qhov cuam tshuam tas lub neej.

Rau cov neeg muaj tus mob sclerosis ntau dua (MS), "hnub kuaj mob" yog qhov tsis nco qab. Rau qee qhov, nws yog kev poob siab thaum lawv tau hnov ​​tias tam sim no nws nyob nrog ib qho kev muaj mob. Txog lwm tus, nws yog kev nplij siab kom paub tias dab tsi ua rau lawv cov tsos mob. Tab sis txawm li cas los yog thaum nws los, txhua hnub MS kuaj mob yog tshwj xeeb.

Nyeem cov dab neeg ntawm peb tus neeg nyob nrog MS, thiab saib seb lawv tau ua li cas rau lawv txoj kev kuaj mob thiab lawv tau coj li cas niaj hnub no.

Matthew Walker, kuaj mob hauv 2013

Matthew Walker hais tias "Kuv nco ntsoov hnov ​​lub suab nrov nrov" thiab kuv tsis muaj peev xwm tham txog kev sib tham nrog kuv tus kws kho mob. “Kuv nco tau qee yam uas peb tau tham txog, tab sis kuv xav tias kuv tsuas yog nyas ntawm ob peb nti ntawm nws lub ntsej muag, thiab zam rau kuv niam thiab tus uas nrog kuv nyob. … Qhov no txhais ua rau kuv thawj xyoo nrog MS, thiab nrog kuv tsis saib nws rau qhov hnyav. ”

Zoo li ntau tus, Walker xav tias nws muaj MS, tab sis nws tsis xav fim qhov tseeb. Hnub tom qab nws tau raug kuaj pom tseeb, Walker tau tsiv mus nyob thoob tebchaws - txij Boston, Massachusetts, mus rau San Francisco, California. Qhov kev tawm ntawm lub cev no tau tso cai Walker ua kom nws txoj kev kuaj mob tsis pub lwm tus paub.

Nws tau hais tias "Kuv ib txwm yog cov phau ntawv qhib, yog li kuv nco qab qhov nyuaj tshaj plaws rau kuv yog qhov kev xav muab nws zais cia," nws hais. “Thiab txoj kev xav, 'Vim li cas kuv thiaj li txhawj xeeb qhia ib tug neeg? Nws puas yog vim nws tau muaj tus mob phem npaum li ntawd? '”

Nws yog qhov kev mob siab ntawm ob peb lub hlis tom qab uas ua rau nws pib blog thiab tso YouTube video txog nws txoj kev kuaj mob. Nws tau tawm ntawm kev sib raug zoo mus ntev thiab muaj kev xav qhia nws zaj dab neeg, kom qhia tau tias nws muaj MS.

Nws hais tias, "Kuv xav tias kuv qhov teebmeem raug tsis lees paub," nws hais. "Yog hais tias kuv yuav rov qab mus nyob rau lub sijhawm, Kuv yuav tau pib ua ntau yam sib txawv hauv lub neej."

Niaj hnub no, nws feem ntau qhia lwm tus txog nws MS thaum ntxov, tshwj xeeb tshaj yog cov ntxhais nws tab tom nrhiav hnub.

“Nws yog ib yam uas koj yuav tsum tau daws thiab nws yog ib yam uas yuav los daws nyuaj. Tab sis rau kuv tus kheej, nyob rau hauv peb xyoos, kuv lub neej tau zoo zuj zus lawm thiab txij hnub ntawd los kuv tau kuaj tam sim no.Nws tsis yog tej yam uas yuav ua rau lub neej tsis zoo. Uas tseem rau koj. "

Tseem, nws xav kom lwm tus nrog MS paub tias kev qhia rau lwm tus yog qhov lawv txiav txim siab kawg.

"Koj yog tus tib neeg uas yuav tsum nrog tus mob no txhua hnub, thiab koj tsuas yog ib tus uas yuav tsum nrog koj txoj kev xav thiab kev xav ntawm sab hauv. Yog li, tsis txhob xav tias yuav tsum ua txhua yam uas koj tsis xis nyob. "

Danielle Acierto, kuaj mob rau xyoo 2004

Thaum yog ib tus neeg laus hauv tsev kawm theem siab, Danielle Acierto twb muaj ntau yam rau nws lub siab thaum nws pom tias nws muaj MS. Txij thaum nws muaj 17 xyoo, nws tsis tau hnov ​​dua tias muaj tus kabmob.

Nws hais tias, "Kuv tau poob zoo," nws hais. "Tab sis kuv tuav nws rau hauv, vim tias yog tias nws twb tsis muaj qee yam tsim nyog quaj txog? Kuv sim muab tso tawm nws zoo li nws tsis muaj dab tsi rau kuv. Yog ob lo lus xwb. Kuv tsis xav kom txhais tias yog kuv, tshwj xeeb yog kuv tus kheej tsis paub txog lub ntsiab lus ntawm ob lo lus no. "

Nws txoj kev kho mob pib sai nrog kev txhaj tshuaj, uas ua rau mob hnyav thoob plaws nws lub cev, nrog rau kev tawm hws hmo ntuj thiab ua daus no. Vim tias muaj cov kev mob tshwm sim no, nws tus thawj coj tsev kawm ntawv tau hais tias nws tuaj yeem tawm ntxov txhua txhua hnub, tab sis nws tsis yog qhov uas Acierto xav tau.

Nws hais tias, "Kuv tsis xav kom raug coj mus rau qhov sib txawv lossis tshwj xeeb qhov kev tshwj xeeb," nws hais. "Kuv xav kom raug ua zoo li lwm tus neeg."

Thaum nws tseem tab tom sim paub dab tsi tshwm sim nrog nws lub cev, nws tsev neeg thiab cov phooj ywg kuj ib yam. Nws niam mus saib tsis raug tus mob "scoliosis," hos qee tus ntawm nws cov phooj ywg pib muab nws piv rau mob qog noj ntshav.

Nws hais tias, "Qhov nyuaj tshaj ntawm kev qhia rau cov neeg yog piav qhia txog MS yog dab tsi," nws hais. “Nyob li ntawm, ntawm ib lub khws uas nyob ze kuv, lawv tau pib hla ntawm tes txhawb nqa MS. Txhua tus ntawm kuv cov phooj ywg yuav tau nqa tes los txhawb kuv, tab sis lawv tsis paub tias nws yog leej twg. "

Nws tsis tau ua pom sab nraud, tab sis nws paub tias tam sim no nws lub neej muaj tsawg vim yog nws tus mob. Niaj hnub no, nws paub tias tsis muaj tseeb. Nws cov lus qhia rau cov neeg mob kuaj mob tshiab tsis yog ib qho yuav tsum muab tso tseg.

Nws hais tias "Koj yuav tsum tsis txhob cia nws cuam tshuam koj vim tias koj tuaj yeem ua txhua yam koj xav tau," "Yog koj lub siab uas yog qhov rov qab koj."

Valerie Hailey, kuaj pom xyoo 1984

Cov hais lus tsis meej. Nov yog Valerie Hailey thawj cov tsos mob ntawm MS. Cov kws kho mob hais ua ntej tias nws muaj mob pob ntseg sab hauv, thiab tom qab ntawd liam nws rau lwm yam kev kis mob ua ntej lawv txheeb xyuas nws nrog "tej zaum yuav yog MS." Lub ntawd yog peb xyoos tom qab, thaum nws tsuas 19 xyoo.

Nws hais tias "Thaum kuv kuaj pom thawj zaug, [MS] tsis tau tham txog thiab nws tsis yog xov xwm," nws hais. "Tsis muaj xov xwm, koj tsuas paub txhua yam lus xaiv uas koj tau hnov ​​txog, thiab qhov ntawv yog qhov txaus ntshai."

Vim tias qhov no, Hailey tau siv nws lub sijhawm qhia lwm tus. Nws muab nws zais cia los ntawm nws niam nws txiv, thiab tsuas yog hais rau tus fiancé vim nws xav tias nws muaj txoj cai paub.

Nws tau hais tias "Kuv ntshai txog qhov nws yuav xav tau yog tias kuv tau nqis los nrog ib tug pas dawb dawb qhwv hauv xiav xiav, lossis ib lub rooj zaum muaj log uas hnav dawb thiab hlaws." "Kuv tau muab txoj hauv kev los ntawm kev rov qab yog tias nws tsis xav nrog tus poj niam mob."

Hailey tau ntshai txog nws tus kab mob, thiab ntshai qhia rau lwm tus vim tias tus neeg txhav txhawv cuam tshuam nrog nws.

"Koj plam phooj ywg vim lawv xav tias, 'Nws ua tsis tau qhov no lossis ua li ntawd.' Nws tsis zoo li tam sim no. Kuv tawm mus thiab ua txhua yam tam sim no, tab sis cov neeg ntawd yuav tsum muaj kev lom zem xyoo. ”

Tom qab rov muaj teeb meem tsis pom kev zoo, Hailey yuav tsum tawm nws txoj hauj lwm hauv kev npau suav los ua tus kws tshaj lij thiab muaj teeb meem laser tom lub tsev kho mob Stanford thiab mus tsis taus ntxiv. Nws poob siab thiab npau taws, tab sis saib rov qab, nws xav tias hmoov zoo.

Nws hais tias "Qhov kev phem no tau hloov ua qhov koob hmoov zoo tshaj plaws," “Kuv muaj peev xwm txaus siab nyob nrog rau kuv cov menyuam thaum twg lawv xav tau kuv. Saib lawv loj hlob yog ib yam dab tsi kuv yuav nco yog tias kuv raug faus rau hauv kuv txoj haujlwm. "

Nws txaus siab rau lub neej ntau dua li niaj hnub no dua li yav tas los, thiab nws tau qhia rau lwm cov neeg mob hais tias tsis ntev tas los no - txawm tias koj tsis xav tias yuav muaj.