Indlela uVictoria Arlen Aye Wazikhulula Ngayo Ukukhubazeka ukuze abe ngumdlali okhubazekileyo

Umxholo

• Isigulo esiQhubekeka ngokukhawuleza, esingaqondakaliyo
• Ukuchasa iiOds kunye noGqirha bakhe
• Ukuzuza Amandla Akhe Ngokutsha
• Ukutyhala imida
• Ukulungele ukubaleka
• Ukujonga kwikamva
• Uphengululo lwe

Kwiminyaka emine, uVictoria Arlen wayengakwazi ukuhamba, ukuthetha, okanye ukuhambisa umsipha emzimbeni wakhe. Kodwa, ngokungazi kwabo babemngqongile, wayenokuva kwaye acinge-kwaye ngalo nto, unokuba nethemba. Ukubopha eli themba yeyona nto ekugqibeleni kuye kwamenza ukuba abonakale engenakoyiswa kwaye abuyisele impilo kunye nobomi.

Isigulo esiQhubekeka ngokukhawuleza, esingaqondakaliyo

Ngo-2006, eneminyaka eli-11 ubudala, u-Arlen wosulelwa yindibaniselwano enqabileyo ngokumangalisayo ye-myelitis, isifo esibangela ukudumba kwentambo yomqolo, kunye ne-acute disseminated encephalomyelitis (ADEM), uhlaselo lokudumba ebuchotsheni kunye nentambo yomqolo - indibaniselwano yezi. iimeko ezimbini zinokubulala xa zishiywe zingakhange ziqwalaselwe.

Ngelishwa, akuzange kube yiminyaka emva kokuba eqale ukugula apho uArlen wade walufumana olu xilongo. Ukulibaziseka kuya kutshintsha ikhondo lobomi bakhe ngonaphakade. (Eyeleleneyo: Oogqirha bangazihoyi iimpawu zam iminyaka emithathu ngaphambi kokuba ndifunyanwe ngeSigaba sesi-4 seLymphoma)

Into eqale ekuqaleni njenge-ache kufutshane nomqolo kunye necala lakhula laba yintlungu yesisu, ekugqibeleni ikhokelela kwi isihlomelo. Kodwa emva kolo tyando, imeko yakhe yaqhubeka isiba mandundu. Emva koko, uArlen uthi enye yeenyawo zakhe yaqala ukuxhuzula kwaye irhuqa, emva koko waphulukana nemvakalelo kunye nokusebenza kwimilenze yomibini. Kungekudala, wayelele ebhedini esibhedlele. Uye waphulukana nomsebenzi ezingalweni nasezandleni, kunye namandla okuginya ngokufanelekileyo. Wayetsala nzima ukufumana amagama xa efuna ukuthetha. Kwaye emva koko, kwiinyanga nje ezintathu ukusukela ukuqala kweempawu zakhe, athi "yonke into yahamba mnyama."

U-Arlen uchithe iminyaka emine elandelayo ekhubazekile kwaye kwinto yena noogqirha bakhe ababiza ngokuba "yimeko yezityalo" - engakwazi ukutya, ukuthetha, okanye ukuhambisa izihlunu ebusweni bakhe. Wayevaleleke ngaphakathi emzimbeni angakwaziyo ukushukuma, ngelizwi angalisebenzisiyo. (Kubalulekile ukuba uqaphele ukuba uluntu lwezonyango luye lwayeka ukuvela kwilizwe elivelayo ngenxa yento abanye abanokuthi liyixesha lokudodobala, bekhetha isifo sokuvuka esingaphenduliyo.)

Ugqirha ngamnye kubazali baka-Arlen ababonisene naye banike ithemba elincinci kusapho. U-Arlen uthi: "Ndiqale ukuva incoko ukuba andizukuyenza okanye ndiza kuba njalo ubomi bam bonke." (Idibeneyo: Ndafunyaniswa ndinesifo sokuwa ndingaqinisekanga ukuba bendinokuxhuzula)

Nangona kwakungekho mntu wayesazi, uArlen unako Yiva yonke loo nto — wayeselapho, wayengakwazi ukuthetha okanye ukushukuma. Ndizamile ukukhwaza ndifuna nokuthetha nabantu kwaye ndishukume ndiphume ebhedini, kwaye akukho mntu ubendiphendula, utshilo. U-Arlen uchaza amava ngokuthi "atshixelwe ngaphakathi" ingqondo nomzimba wakhe; wayesazi ukuba kukho into engalunganga, kodwa akukho nto anokuyenza ngaloo nto.

Ukuchasa iiOds kunye noGqirha bakhe

Kodwa ngokuchasene neengxaki kunye nazo zonke iingqikelelo ezingenathemba zeengcali, u-Arlen wadibana ngamehlo nonina ngo-Disemba ka-2009-intshukumo eya kubonisa umendo wakhe omangalisayo wokubuyela kwimeko yesiqhelo. (Ngaphambili, xa evula amehlo baya kuba nohlobo lokujonga okungenanto.)

Oku kubuya kwakungeyonto imfutshane kummangaliso wezonyango: Ngokwayo, ukuchacha ngokupheleleyo kwi-myelitis enqamlezayo akunakwenzeka ukuba inkqubela phambili entle ayenziwanga phakathi kweenyanga ezintathu ukuya kwezintandathu zokuqala, kunye nokuqala kweempawu (njengoko uArlen anamava) kuyenza buthathaka loo nto kuphela. I-prognosis, ngokutsho kweNational Institutes of Health (NIH). Ngaphezu koko, wayesalwa ne-AEDM, enesakhono sokubangela "ukungakhubazeki kancinci ukuya kubomi obungapheliyo" kwiimeko ezinzima ezifana neka-Arlen.

"Iingcali zam [zangoku] zathi, 'Uphila njani? Abantu abaphumi kule nto!'" Utshilo.

Naxa wayeqala ukuphinda akwazi ukuhamba-ehleli, esitya yedwa-wayesadinga isitulo esinamavili kubomi bemihla ngemihla kwaye oogqirha babengaqiniseki ukuba angaphinda akwazi ukuhamba kwakhona.

Ngelixa u-Arlen wayephila kwaye evukile, ubunzima bashiya umzimba kunye nengqondo yakhe ineziphumo ezingapheliyo. Umonakalo omkhulu kwingqondo yakhe nakwintambo yomqolo wayethetha ukuba u-Arlen wayengasakwazi ukukhubazeka kodwa wayengaziva naluphi na uhlobo lokuhamba emilenzeni yakhe, esenza ukuba kube nzima ukuthumela imiqondiso evela kwingqondo yakhe ukuya emalungwini akhe ukuze aqalise isenzo. (Idibeneyo: Ukuba nesifo esiDimazayo kundifundise ukuba nombulelo ngomzimba wam)

Ukuzuza Amandla Akhe Ngokutsha

Ukukhula kunye nabantakwabo abathathu kunye nosapho lweembaleki, u-Arlen wayeyithanda imidlalo - ngakumbi ukuqubha, eyayili "xesha lakhe elikhethekileyo" kunye nomama wakhe (umdadi onomdla ngokwakhe). Kwiminyaka emihlanu ubudala, wade waxelela umama wakhe ukuba uza kuphumelela imbasa yegolide ngenye imini. Ngoko phezu kwako nje ukusikelwa umda kwakhe, uArlen uthi wayenikel’ ingqalelo koko wayenako unako enze ngomzimba wakhe, kwaye ngenkuthazo yosapho lwakhe, waqala ukuqubha kwakhona ngo-2010.

Oko kwaqala njengohlobo lonyango olusebenzayo, kwavuselela uthando lwakhe lomdlalo. Wayengahambi kodwa wayenokudada-kwaye kakuhle. Ke uArlen waqala ukuzimisela ngokubhukuda kwakhe kunyaka olandelayo. Kungekudala emva koko, ngenxa yolo qeqesho luzinikeleyo, wakulungela ukuya kwiMidlalo yeParalympic yaseLondon ka-2012.

Wabona konke ukuzimisela nokusebenza nzima njengoko wayebhukuda kwiQela laseMelika kwaye waphumelela iimbasa zesilivere ezintathu - ukongeza ekuthatheni igolide kwi-freestyle yeemitha ezili-100.

Ukutyhala imida

Emva koko, u-Arlen wayengenazo naziphi na izicwangciso zokuxhoma iimbasa zakhe aze aphumle. Waye wasebenza neProjekthi Walk, iziko lonyango lokukhubazeka elizinze eCarlsbad, CA, ngexesha lokuchacha kwakhe, kwaye uthi uziva enethamsanqa kakhulu ukufumana inkxaso yabo yobungcali. Wayefuna ukubuyisa ngandlela thile kwaye afumane injongo kwintlungu yakhe. Ke, ngo-2014, yena nosapho lwakhe bavula indawo yokuhamba yeProjekthi eBoston apho angaqhubeka khona nokuqeqesha kwaye anikezela ngendawo yokuhlengahlengisa ukuhamba kwabanye abayifunayo.

Ke, ngexesha leseshoni yoqeqesho kunyaka olandelayo, kwenzeka into engalindelekanga: UArlen weva okuthile emilenzeni. Yayisisisihlunu, kwaye wayeva ukuba "kuvuliwe," uyacacisa-into angazange ayive oko ukusukela ngaphambi kokukhubazeka kwakhe. Enkosi ngokuqhubeka nokuzinikezela kwakhe kunyango lomzimba, ukuba intshukumo enye yemisipha yaba ngunobangela, kwaye ngoFebruwari 2016, uArlen wenza into oogqirha bakhe abangazange bacinge ukuba inokwenzeka: Wathatha inyathelo. Kwiinyanga ezimbalwa kamva, wayehamba ngemitya yomlenze engenazo iintonga, kwaye eze ngo-2017, u-Arlen wayejija impungutye njengomntu okhuphisana naye Ukudanisa neenkwenkwezi.

Ukulungele ukubaleka

Ngawo onke lawa mawonga phantsi kwebhanti lakhe, wongeze enye impumelelo kwincwadi yakhe yokurekhoda: UArlen wayebaleka iWalt Disney World 5K ngoJanuwari 2020 - into evakala ngathi liphupha lombhobho xa wayelele eshukuma ebhedini yesibhedlele ngaphezulu kwe-10 iminyaka ngaphambili. (Inxulumene: Ekugqibeleni ndazibophelela njani kwisiqingatha seMarathon- kwaye ndaphinda ndadibana nam kwiNkqubo)

"Xa uhleli kwisitulo esinamavili iminyaka elishumi, ufunda ukuthanda kakhulu ukubaleka!" uthi. Izihlunu ezingaphezulu kumzimba wakhe osezantsi ngoku ziyasebenza kwaye ziyasebenza (ngokoqobo) enkosi kwiminyaka yoqeqesho kunye neProjekthi yokuHamba, kodwa kusekho inkqubela phambili enokwenziwa ngezinye zezincinci, ezizinzisa izihlunu emaqatheni nasezinyaweni, uyacacisa.

Ukujonga kwikamva

Namhlanje, uArlen ungumamkeli we Umkhosi waseMelika waseNinja kunye nentatheli eqhelekileyo ye-ESPN. Ungumbhali opapashiweyo-funda incwadi yakhe Utshixelwe ngaphakathi: Umnqweno wokuSinda kunye nokuSombulula ukuPhila (Thenga, i-$ 16, i-bookshop.org) - kunye nomsunguli we-Victoria's Victory, isiseko esijolise ekuncedeni abanye "ngemingeni yokuhamba ngenxa yokulimala okuguqula ubomi okanye ukuxilongwa," ngokubonelela nge-scholarships kwiimfuno zokubuyisela, ngokwewebhusayithi yesiseko.

"Umbulelo yeyona nto indigcinileyo iminyaka emininzi apho izinto bezingandihambeli kakuhle," utshilo u-Arlen. "Inyaniso yokuba ndinokukrwempa impumlo yam ngummangaliso. Xa ndandivalelwe [emzimbeni wam], ndiyakhumbula ndicinga ukuba" ukuba bendinokukrwempa impumlo yam ngenye imini inokuba yeyona nto inkulu ehlabathini! " uxelela abantu abajamelana nobunzima, ukuba "bayeke bakrwembe impumlo" njengendlela yokubonisa ukuba intshukumo elula ngoluhlobo ingathathwa lula.

Ukwathi unetyala kakhulu kusapho lwakhe. "Abazange bancame kum," utshilo. Naxa oogqirha babemxelela ukuba akasekho, usapho lwakhe aluzange luphele lithemba. "Baye bandityhala. Bakholelwa kum."

Ngaphandle kwayo yonke into akuyo, u-Arlen uthi ngekhe ayitshintshe. Yonke le nto yenzeka ngesizathu, utshilo. "Ndikwazile ukuguqula le ntlekele ibe yinto yoloyiso kwaye ndincede abanye endleleni."

Uphengululo lwe