Ukujongwa kwe-MS: Ibali lam lokuChonga

Umxholo

• UMatthew Walker, ofunyenwe ngo-2013
• UDanielle Acierto, wafunyaniswa ngo-2004
• UValerie Hailey, wafunyaniswa ngo-1984

“Une-MS.” Nokuba uthethwe ngugqirha wakho ophambili, ugqirha wakho wemithambo-luvo, okanye omnye obalulekileyo, la magama mathathu alula anegalelo kubomi bakho bonke.

Kubantu abane-multiple sclerosis (MS), "usuku lokuchonga isifo" alilibaleki. Kwabanye, kuyothusa ukuva ukuba ngoku bahlala nemeko engapheliyo. Kwabanye, sisiqabu ukwazi ukuba yintoni ebangela iimpawu zabo. Kodwa akunamsebenzi nokuba uza njani okanye nini, usuku ngalunye lokuchongwa kwe-MS lwahlukile.

Funda amabali abantu abathathu abaphila ne-MS, kwaye ubone ukuba bajongane njani nokuchongwa kwabo kwaye baqhuba njani namhlanje.

UMatthew Walker, ofunyenwe ngo-2013

"Ndiyakhumbula ndisiva" ingxolo emhlophe "kwaye ndingakwazi ukugxila kwingxoxo nogqirha wam," utshilo uMatthew Walker. "Ndiyakhumbula into ebesithethile ngayo, kodwa ndicinga ukuba bendijonge nje kude lee ebusweni bakhe, kwaye ndiphepha ukudibana kwamehlo nomama kunye nam. … Oku kuguqulelwe kunyaka wam wokuqala ne-MS, kwaye nam andiyithathi ngoyaba. ”

Njengabaninzi, uWalker wayecinga ukuba une-MS, kodwa akazange afune ukujongana nenyani. Ngomhla emva kokuba efunyaniswe ngokusesikweni, uWalker wafudukela kwilizwe liphela-ukusuka eBoston, eMassachusetts, waya eSan Francisco, eCalifornia. Le ntshukumo yomzimba ivumele u-Walker ukuba agcine isifo sakhe siyimfihlo.

Uthi: "Ndihlala ndihlobo lwencwadi evulekileyo, ngoko ndiyakhumbula into eyona nto inzima kum ngumnqweno wokuyigcina imfihlo," utsho. "Kwaye ingcinga," Kutheni ndikhathazeke kangaka ukuxelela nabani na? Ngaba kungenxa yokuba sisifo esibi kangaka? ’”

Kwakuyimvakalelo yokuphelelwa lithemba kwiinyanga ezininzi kamva eyamkhokelela ekubeni aqale ibhlog kwaye athumele ividiyo ye-YouTube malunga nokuchongwa kwakhe. Wayephuma kubudlelwane bexesha elide kwaye waziva isidingo sokwabelana ngebali lakhe, ukuveza ukuba une-MS.

"Ndicinga ukuba ingxaki yam yayikukukhanyela," utshilo. "Ukuba bendinokubuyela emva, ngendiye ndaqala ukwenza izinto ngendlela eyahlukileyo ebomini."

Namhlanje, uxelela abanye nge-MS yakhe kwangoko, ngakumbi amantombazana ajonge kuwo ukuza kuthi ga ngoku.

Yinto ekufuneka ujongane nayo kwaye yinto ekunzima ukujongana nayo. Kodwa kum ngokwam, kwiminyaka emithathu, ubomi bam buye baphucuka kakhulu kwaye ukusukela ngala mhla ndafunyaniswa ukuba ndikhona.Ayisiyiyo into eza kwenza ubomi bube mandundu. Ixhomekeke kuwe. "

Okwangoku, ufuna abanye abane-MS bazi ukuba ukuxelela abanye sisigqibo sabo ekugqibeleni.

“Nguwe wedwa umntu oza kujongana nesi sifo yonke imihla, kwaye nguwe kuphela umntu oza kujongana neengcinga neemvakalelo zakho ngaphakathi. Ungaziva unyanzelekile ukuba wenze nantoni na ongonelisekanga yiyo. ”

UDanielle Acierto, wafunyaniswa ngo-2004

Njengomntu ophakamileyo kwisikolo samabanga aphakamileyo, uDanielle Acierto wayesele enezinto ezininzi engqondweni yakhe akufumanisa ukuba une-MS. Njengomntu oneminyaka eli-17 ubudala, wayengazange ave nokuva ngesi sifo.

Uthi: “Ndaziva ndilahlekile. “Kodwa ndiyibambile, kuba kungathini ukuba ibingeyonto ifanele ukuba ikhale ngayo? Ndizamile ukuyidlala ngathi ayiyonto kum. Kwakungamagama amabini kuphela. Andizukuyivumela ukuba indichaze, ngakumbi ukuba nam ngokwam bendingayazi inkcazo yala magama mabini. "

Unyango lwakhe lwaqala kwangoko ngenaliti, eyabangela iintlungu eziqatha emzimbeni wakhe, kunye nokubila ebusuku kunye nokugodola. Ngenxa yezi ziphumo bezingalindelekanga, inqununu yesikolo sayo yathi ingahamba kwangoko suku ngalunye, kodwa yayingeyiyo le nto yayifunwa nguAcierto.

"Bendingafuni ukuphathwa ngokwahlukileyo okanye nangayiphi na ingqalelo ekhethekileyo," utshilo. Ndandifuna ukuphathwa njengabo bonke abantu. ”

Ngelixa wayesazama ukuqonda ukuba kuqhubeka ntoni ngomzimba wakhe, usapho kunye nabahlobo bakhe, nabo. Umama wakhe ngempazamo wajonga "i-scoliosis," ngelixa abanye babahlobo bakhe baqala ukuyithelekisa nomhlaza.

"Eyona nto yayinzima ukuxelela abantu yayikukuchaza ukuba yintoni i-MS, utshilo. Ngokuzenzekelayo, kwenye yeevenkile ezinkulu ezikufuphi nam, baqala ukukhupha izacholo zenkxaso yeMS. Bonke abahlobo bam bathenga izacholo zokundixhasa, kodwa bebengayazi ncam ukuba yintoni. ”

Wayengabonakalisi zimpawu zangaphandle, kodwa wayehlala eziva ukuba ubomi bakhe ngoku bunomda ngenxa yemeko akuyo. Namhlanje, uyaqonda ukuba ayisiyonyani leyo. Ingcebiso yakhe kwizigulana ezisandula ukufumanisa ukuba ayisiyeki.

"Akufanele uyivumele ikubambezele kuba unokwenza nantoni na oyifunayo nangoku," utsho. "Yingqondo yakho le ikubambayo."

UValerie Hailey, wafunyaniswa ngo-1984

Intetho egudileyo. Yayiluphawu lokuqala lukaValerie Hailey lwe-MS. Oogqirha baqala bathi unesifo esingaphakathi endlebeni, emva koko balutyhola kolunye uhlobo losulelo ngaphambi kokuba bamfumanise ene "MS enokwenzeka." Oko kwenzeka kwiminyaka emithathu kamva, xa wayeneminyaka eli-19 kuphela ubudala.

"Ukuqala kwam ukufumanisa ukuba, [MS] kwakungathethwa ngaye kwaye kwakungekho ezindabeni," utshilo. "Awunalwazi, uyazi kuphela nayiphi na intlebendwane oyivileyo ngayo, kwaye yayothusa."

Ngenxa yoku, uHailey uthathe ixesha lakhe exelela abanye. Wayigcina iyimfihlo kubazali bakhe, kwaye wamxelela kuphela lowo wayeza kutshata naye kuba wayecinga ukuba unelungelo lokwazi.

"Ndandisoyika ukuba uzokucinga ntoni xa ndingehla epasejini ndiphethe umsimelelo omhlophe osongelwe ngombala wasebukhosini, okanye isitulo esinamavili sihonjiswe ngemhlophe neeperile, utshilo. "Bendimnika ithuba lokuxhasa ukuba akafuni kujongana nenkosikazi egulayo."

U-Hailey wayesoyika isifo sakhe, kwaye esoyika ukuxelela abanye ngenxa yehlazo elinxulunyaniswa naso.

“Uphulukana nabahlobo kuba becinga,‘ Akanakwenza le okanye leya. ’Ifowuni iyeka nje ukukhala ngokuthe ngcembe. Akusekho njalo ngoku. Ndiyaphuma ndiyokwenza yonke into ngoku, kodwa leyo ibifanele ukuba yiminyaka eyonwabisayo. ”

Emva kweengxaki zombono eziphindaphindayo, uHailey kwafuneka awushiye umsebenzi wakhe wamaphupha njengengcali eqinisekisiweyo kunye ne-laser ye-excimer laser eSibhedlele saseStanford kwaye aye kukhubazeka ngokusisigxina. Wayedimazekile kwaye enomsindo, kodwa xa ejonga ngasemva, uziva enethamsanqa.

Uthi: "Le nto yoyikekayo yajika yaba yeyona ntsikelelo inkulu." “Ndikuvuyele ukufumaneka nabantwana bam nanini na xa bendifuna. Ukubabukela bekhula yinto endinokuphoswa yiyo ukuba ndingcwatyiwe.

Ubuxabisile ubomi kakhulu namhlanje kunakuqala, kwaye uxelela ezinye izigulana ezisandula ukufumanisa ukuba kusoloko kukho icala eliqaqambileyo- nokuba awulindelanga.