ISCLERODERMA—igama elithetha “isikhumba esiqinileyo”—lisetyenziswa ukuchaza isifo esiye sachanaba abantu abaqikelelwa kwizigidi eziyi-2.5 ehlabathini lonke. Uhlobo lwesi sifo olufunyanwa ngabantwana kuthiwa yi-localized scleroderma, ubukhulu becala ichaphazela isikhumba.

Noko ke, xa wayeneminyaka elishumi, uElisa wafunyaniswa enesystemic scleroderma—isifo esingapheleli nje ekuhlaseleni isikhumba, kodwa namanye amalungu angaphakathi emzimbeni njengezintso, intliziyo, imiphunga kunye namathumbu. Oogqirha babecinga ukuba unyango lwaluya kwandisa ubomi bukaElisa ngeminyaka emihlanu kuphela. Ngoku, emva kweminyaka emalunga neyi-14, uElisa usaphila. Nangona esenaso esi sifo, uqhubeka ebunandipha ubomi. UVukani! udlane indlebe naye, ethetha ngesifo sakhe kunye namandla akhe okunyamezela.

 Wazazi nini ukuba awuphilanga?

Xa ndandineminyaka elithoba, ndaba nenxeba engqinibeni ibe lalibuhlungu kakhulu. Eli nxeba labhidla kwaye lingade liphile. Emva kokutsalwa igazi kwaye kwafunyaniswa ukuba ndinesystemic scleroderma. Ngenxa yokuba imeko yam yayisiya isiba maxongo, kwakufuneka sifumane ugqirha oqheleneyo nokunyanga iscleroderma.

Nakwazi ke ukumfumana?

Safumana ingcali yesifo samathambo. Yachazela abazali bam ukuba akhona amayeza anokundinceda ndichache aze andise nobomi bam ngeminyaka emihlanu. Ingozi yayikukuba ayeza kwenza umzimba wam ungakwazi ukulwa nezinye izifo. Kwa ukungenwa yingqele kwakunokundibulala.

Kodwa ke, usaphila.

Ewe—ndisaphila! Sekunjalo, xa ndandineminyaka eyi-12, ndaqalisa ukuqaqanjelwa sisifuba malunga nemizuzu eyi-30, maxa wambi kude kube kabini ngosuku. Sasiqaqamba kangangokuba ndandiye nditsho isikhalo esikhulu.

Yayiphi ingxaki?

Oogqirha bafumanisa ukuba iiprotini zam ezibomvu ezithwala ioksijini egazini zazimbalwa ngendlela eyingozi ibe intliziyo yam kwakufuneka isebenze nzima ukuze ithumele igazi engqondweni. Kwiiveki nje ezimbalwa ndinyangwa ndayeka ukuqaqanjelwa. Kodwa ngelo xesha ndaye ndabona ukuba kunokwenzeka nantoni na, nanini na kum. Ndaziva ndingenamandla, ndingakwazi ukulawula oko kwakusenzeka kum.

Sele kudlule iminyaka eyi-14 usazi ukuba unesi sifo. Injani impilo yakho ngoku?

Ndihlala ndiqaqanjelwa ibe ndinezifo eziliqela ezibangelwa siscleroderma. Ziquka izilonda ezisesiswini, emiphungeni kunye nesitshisa esingapheliyo. Sekunjalo, andifuni ukucinga kakhulu ngokugula kwam okanye ndizisizele. Ndinezinye izinto endimele ndizenze.

Njengantoni?

Ndiyakuthanda ukuzoba, ukuthunga impahla nokwenza izacholo. Okona kubalulekileyo kukuba, ekubeni ndiliNgqina likaYehova, ndifundisa abantu iBhayibhile. Nangona ndingakwazi ukuhamba ndiye emakhayeni abantu, ndiyakwazi ukuncedisa amanye amaNgqina afundisa iBhayibhile kubantu abakufuphi ekhaya. Ndikhe ndanabo nam endibafundisayo. Ukushumayela kwenza ubomi bam bubenenjongo.

Kutheni usenza lo msebenzi nangona unezakho iingxaki ojongene nazo?

Ndiyazi ukuba izinto endizifundisa abantu zibalulekile ibe ziyabanceda. Kakade ke, xa ndinceda abanye ngolu hlobo ndonwaba ngakumbi, nditsho ndizive ndiphilile. Ngelo xesha, ndiyalibala ukuba ndiyagula.

IBhayibhile ikunceda njani uhlale wonwabile?

Indinceda ndikhumbule ukuba iintlungu endizivayo—neziviwa ngabanye abantu—zezokwexeshana. ISityhilelo 21:4 sithi ngexesha uThixo alibekileyo, “uya kuzisula zonke iinyembezi emehlweni abo, kungabi sabakho kufa, kungabi sabakho kuzila nakukhala nantlungu kwakhona.” Ukucinga ngezibhalo ezinjalo kuqinisa ithemba endinalo kwikamva eliqaqambileyo elithenjiswa nguThixo, kungekhona kwabo banezifo ezinganyangekiyo kuphela, kodwa kumntu wonke.