Ukuba yimfama kunye nesiThulu, ibhinqa elinye lijikela ekujikeni

Umxholo

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Ejongene noko uRebecca Alexander adlule kuko, uninzi lwabantu lwalungenakubekwa tyala ngokuyeka umthambo. Xa wayeneminyaka eyi-12, uAlexander wafumanisa ukuba wayeyimfama ngenxa yesifo esinqabileyo sofuzo. Kwathi, xa wayeneminyaka eli-18 ubudala, wawa kwifestile enemigangatho yesibini, yaye umzimba wakhe weembaleki wahlaliswa kwisitulo esinamavili iinyanga ezintlanu. Kungekudala emva koko, wafunda ukuba wayephulukana nokuva.

Kodwa uAlexander akazange avumele le miqobo ukuba ithobe isantya: Kwiminyaka engama-35, uyingcali yengqondo enezidanga ezimbini ze-masters, i-spin instructor, kunye ne-endurance racer ehlala kwisiXeko saseNew York. Kwincwadi yakhe entsha, Awuyi Kuphela: Isimemo seNzwa elahlekileyo kwaye safunyanwa, URebecca ubhala ngokusingatha ukukhubazeka kwakhe ngenkalipho kunye nokuzithemba. Apha, usixelela okungakumbi malunga nokuba ukomelela komzimba kumnceda njani ukuba ajongane nenyani yemihla ngemihla kunye nezifundo ezibalulekileyo anokuzithatha kuye nabani na kumava akhe.

Ubume: Yintoni ekwenze wagqiba ekubeni ubhale imemori yakho?

URebecca Alexander (RA): Ukuphulukana nombono wakho kunye nokuva akuyona into eqhelekileyo, kodwa ndicinga ukuba baninzi abantu abanokunxibelelana nayo. Ukufunda ngamava abanye abantu kube luncedo kakhulu kwinkqubo yokujongana nemiba yam. Ndingumlandeli omkhulu wokwabelana ngamabali obomi kunye namava.

Ubume: Ufundile ukuba une-Usher Syndrome Type III, ebangela ukungaboni kakuhle kunye nokuva, xa uneminyaka eyi-19. Waqala njani ukumelana nesi sifo?

RA: Ngelo xesha, ndatya ukutya okungahambi kakuhle. Ndagqiba kwelokuba ndiza kuzenza ndigqibelele ngobuhle njengoko ndandinako, ke akukho mntu wayenokuthi akukho nto iphosakeleyo ngam. Ndifuna ukulawula zonke izinto endinokuzenza, ngenxa yazo zonke izinto endingenakuzilawula. Kwaye ngexesha lokuchacha kwam ngengozi, izihlunu zam ezininzi zazithotyiwe, ngenxa yoko ndasebenzisa umthambo ukuze ndakhe izihlunu zam, kodwa emva koko ndaqala ukuzilolonga ngokungathi ndiyaphambana ngekholeji. Ndandichitha iyure okanye ezimbini kwindawo yokuzivocavoca kwi-treadmill okanye kwi-Stairmaster.

Ubume: Uqale njani ukukhulisa ubudlelwane obunempilo nokuzilolonga?

RA: Ndaqala ukuqaphela ukuba zeziphi iintlobo zomthambo endizithandayo. Akukho mfuneko yokuba usebenze iiyure ezimbini ukuya kwezintathu-ukunyuswa koxinzelelo oluphezulu kwenza umahluko omkhulu. Kwaye ukuba andizonwabisi ngelixa ndizilolonga, ayizukuhlala. Ndiya kwigumbi lokulala (isitudiyo soqeqesho olunamandla e-NYC) phantse yonke imihla. Ndidubule apho. Ndiyayithanda indawo yayo ekhuthazayo neyonwabisayo. Ukuzilolonga kum ayisiyonto yomzimba kuphela, yinto yengqondo. Kuyandinceda ukukhulula uxinzelelo kunye nokuthatha amandla amaninzi xa ndiziva ndingenamandla oku kukhubazeka.

Ubume: Yintoni eyenze wafuna ukuba ngumqeqeshi webhayisikile?

RA: Ndaba ngumhlohli ngelixa ndandikwisikolo esiphumelele isidanga e-Columbia kuba ndandifuna ubulungu bejim yasimahla-ndiye ndafundisa malunga ne-11 leminyaka. Enye yezinto ezintle ngokufundisa ukujikeleza kukuba ndikhwele ibhayisekile engayi ndawo, ngoko ke andinaxhala lokuwa ngaphezulu. Kwaye andinalo ixhala lokuva umyaleli, kuba ndim umyaleli. Ukukhubazeka okanye akunjalo, bendihlala ndiyi-peppy kakhulu, ke le yindlela yokuyihambisa. Ikwandinceda ndizive ndinamandla. Akukho mvakalelo ingcono kunokumpompa iklasi kwaye ukhuthaze abantu ukuba basebenze nzima-hayi kuba ubangxolisa ukuba benze ngcono, kodwa ngenxa yokuba unabo mzuzwana, ugxile kwindlela oziva ngayo kwaye ufumanisa oko 'ndiyakwazi.

Ubume: Unjani umbono wakho nokuva kwakho namhlanje?

RA: Ndifakele i-cochlear kwindlebe yam yasekunene. Ngokombono wam, umntu oqhelekileyo onamehlo unamaqondo angama-180, kwaye ndine-10. Ukuhlala kwisixeko esinjengeNew York kuyaphambana. Yeyona ndawo ilungileyo kunye neyona ndawo imbi kumntu ofana nam. Ifikeleleka ngokupheleleyo ngezithuthi zikawonke-wonke, kodwa kukho abantu kuyo yonke indawo. Ndisebenzisa intonga yam ebusuku ngoku, yayilinyathelo elikhulu. Ndijonge ixesha elininzi ekubeni ndomelele njengokuba ndinokuba nako ukusebenzisa induku ebusuku ndiziva ngathi ndiyanikezela, kodwa ngoku ndiyaqonda ukuba xa ndisebenzisa intonga yam ndihamba ngokukhawuleza, ngokuzithemba ngakumbi, kwaye abantu bayaphuma endleleni yam. Ayisiyonto intle ukuba uphume kuyo xa uphuma uye edolophini kwaye ungatshatanga, kodwa ke ndiza kuhamba nezintombi ndibambelele kuzo ngenkxaso.

Ubume: Usigcina njani isimo sengqondo esifanelekileyo?

RA: Ndicinga ukuba abantu banombono ogqwethekileyo wokuba ubomi bumele ukuba bunjani-ukuba sifanele sibe kumdlalo wethu we-A, kwaye sonwabe ngalo lonke ixesha-kwaye ayingobomi obo. Ubomi bunokuba nzima ngamanye amaxesha. Ungaziva uphantsi, kwaye kulungile. Kuya kufuneka uzivumele ukuba ube nelo xesha. Ndizogoduka ndiyokulila ukuba kunyanzelekile, kuba kufuneka ndenze njalo ukuya phambili. Kodwa izinto zindehlela kakhulu, njengokubalekela kwinto ethile okanye emntwini, kangangokuba ukuba ndikhe ndiyema ngalo lonke ixesha ndikhale ngenxa yoko, andinakuze ndenze nto. Kuphela kufuneka uqhubeke netraki.

Ubume: Nguwuphi umyalezo ofuna abanye basuse kuwo Ayipheli?

RA: Ukuba awuwedwa. Sonke sinezinto esijongene nazo. Ukomelele ngakumbi kwaye unamandla kunokuba uzinika ityala. Kwaye ndicinga ngaphezu kwayo nantoni na, kubalulekile ukuba uphile ngoku. Ukuba ndingacinga ngento yokuba ndiza kuba sisithulu kwaye ndingaboni, kutheni ndingafuna ukushiya indlu yam? Ingcamango engummangaliso. Kufuneka sithathe ubomi ngenxa yale nto siyiyo ngoku kwaye senze konke okusemandleni ethu ngalo mzuzu.

Ukuze ufunde okungakumbi ngoRebecca Alexander, nceda undwendwele iwebhusayithi yakhe.

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