Ukufumana njani isitulo esinamavili kubomi bam obungapheliyo kubutshintshe ubomi bam

Umxholo

• Ukuzityhala ukuba 'ndilunge'
• Ndiziva ndimnandi kwisitulo sam samandla

Ekugqibeleni ukwamkela ndingasebenzisa uncedo kundinike inkululeko engaphezulu kunokuba bendicinga.

Impilo kunye nokuphila kakuhle kuchaphazela ngamnye wethu ngokwahlukileyo. Eli libali lomntu omnye.

"Unenkani kakhulu ukuba ungade uhambe ngesitulo esinamavili."

Yiloo nto ingcali ye-physiotherapist kwimeko yam, i-Ehlers-Danlos syndrome (i-EDS), yandixelela xa ndandineminyaka engama-20 ubudala.

I-EDS sisifo esidibeneyo sesicubu esichaphazela phantse onke amalungu omzimba wam. Owona mceli mngeni wokuba nayo kukuba umzimba wam uhlala wenzakala. Amalungu am angatyibilika kwaye izihlunu zam zinokutsala, zi spasm, okanye zikrazule amatyeli angamakhulu ngeveki. Ndihleli ne-EDS ukusukela ndandineminyaka eli-9 ubudala.

Kwakukho ixesha apho ndachitha ixesha elininzi ndicinga ngalo mbuzo, Kukuthini ukukhubazeka? Abahlobo bam ndandibathatha njengabantu ababekhubazekile, ngokwesiko labo njengabantu "abakhubazekileyo."

Khange ndikwazi ukuzazisa ukuba ndichonge njengomntu okhubazekileyo, xa - ngaphandle - umzimba wam ubunokugqitha uphilile. Impilo yam bendiyijonga njengehlala iguquka, kwaye bendisoloko ndicinga ngokukhubazeka njengento ezolileyo nengaguquguqukiyo. Ndandigula, ndingakhubazekanga, kwaye ukusebenzisa isitulo esinamavili yayiyinto "yabantu abakhubazekileyo yokwenene" abanokuyenza, ndazixelela.

Ukusukela kwiminyaka ndisenza ngathi bekungekho nto iphosakeleyo ngam ukuya kwixesha endilichithileyo ndityhala iintlungu, uninzi lobomi bam nge-EDS ibilibali lokwala.

Ngexesha lam lokufikisa kunye nokuqala kwe-20s, andizange ndibamkele ubunyani bempilo yam egulayo. Iziphumo zokungabikho kwam kovelwano kuye kwaba ziinyanga ukuphela kokuchitha ebhedini- ndingakwazi ukusebenza ngenxa yokutyhala nzima umzimba wam ukuzama ukuhambisana noontanga "abaqhelekileyo" abasempilweni.

Ukuzityhala ukuba 'ndilunge'

Ukuqala kwam ukusebenzisa isitulo esinamavili kwisikhululo seenqwelomoya. Andizange ndicinge nokusebenzisa isitulo esinamavili ngaphambili, kodwa bendisusa idolo phambi kokuya eholideyini kwaye ndifuna uncedo ukuze ndingene kwisiphelo.

Yayingamandla amangalisayo- kunye namava okonga iintlungu. Khange ndiyicinge njengeyona nto ibaluleke ngaphezu kokundidlulisa kwisikhululo seenqwelomoya, kodwa ibilinyathelo lokuqala elibalulekileyo lokundifundisa ukuba isitulo singabutshintsha njani ubomi bam.

Ukuba ndinyanisekile, bendisoloko ndiziva ngathi ndinokuwudlula umzimba wam-nasemva kokuhlala kunye neemeko ezininzi ezingapheliyo kangangeminyaka engama-20.

Ndacinga ukuba ukuba ndizama nje kangangoko ndinako kwaye ndityhale, ndiza kulunga - okanye ndide ndibengcono.

Izixhobo zokunceda, ubukhulu becala iintonga, zazenzelwe ukwenzakala kakhulu, kwaye wonke umntu oqeqeshiweyo kwezonyango endandimbonile wandixelela ukuba ukuba ndisebenze nzima ngokwaneleyo, ndiza "kulunga" - ekugqibeleni.

Bendingenguye.

Ndiza kuphazamiseka iintsuku, iiveki, okanye iinyanga ukusuka ekuzityhaleleni kude kakhulu. Kwaye kukude kakhulu kum kuhlala kuyinto enempilo yabantu abanokuyithatha njengevila. Kule minyaka idlulileyo, impilo yam yayisiya isiba mandundu, kwaye kwakunzima nokuvuka ebhedini. Ukuhamba ngaphezulu kwamanyathelo ambalwa kundibangele iintlungu ezinzima kunye nokudinwa kangangokuba ndingakhala ngaphakathi komzuzu wokushiya iflethi yam. Kodwa bendingazi ukuba ndenzeni ngayo.

Ngamaxesha amabi kakhulu - xa ndaziva ngathi andinawo amandla okuba ndibekho - umama wayeza kuvela ngesihlalo esinamavili sikamakhulu, ukuze nje andivuse ebhedini.

Ndandihlala phantsi kwaye andikhaphe aye kujonga ezivenkileni okanye afumane nje umoya omtsha. Ndiqale ukuyisebenzisa ngakumbi nangakumbi kwizihlandlo zoluntu xa ndandinomntu ondityhala, kwaye yandinika ithuba lokushiya ibhedi yam ndize ndibenobomi obufanayo.

Kunyaka ophelileyo, ndafumana umsebenzi wam wephupha. Oko kwakuthetha ukuba kuya kufuneka ndibone ukuba ndenza njani ukusuka ecaleni kwento ukushiya indlu ndiyokusebenza iiyure ezimbalwa eofisini. Ubomi bam entlalweni babuqhubeka, kwaye ndandirhalela inkululeko. Kodwa, kwakhona, umzimba wam wawusokola ukuqhubeka.

Ndiziva ndimnandi kwisitulo sam samandla

Ngokufunda nangokubonisa abanye abantu kwi-intanethi, ndafunda ukuba umbono wam wezitulo zabakhubazekile kunye nokukhubazeka xa iyonke wawunolwazi olungeyonyani, ngenxa yemilinganiselo emincinci yokukhubazeka endikubone ezindabeni nakwinkcubeko edumileyo yokukhula.

Ndiqale ukufumanisa ukuba ndikhubazekile (ewe, ukukhubazeka okungabonakaliyo yinto!) Kwaye ndaqonda ukuba "ukuzama ngokwaneleyo" ukuqhubeka bekungekho mfazwe ulungileyo nxamnye nomzimba wam. Ngayo yonke intando emhlabeni, andikwazi ukulungisa izicwili zam ezinxibelelanayo.

Kwakulixesha lokufumana isitulo samandla.

Ukufumana efanelekileyo kum kwakubalulekile. Emva kokuthenga ezivenkileni, ndafumana isitulo se-whizzy esilunge ngendlela engummangaliso kwaye sindenza ndizive ndihle. Kuthathe kuphela iiyure ezimbalwa zokusebenzisa isitulo sam samandla ukuba ndizive ngathi ndiyinxalenye yam. Kwiinyanga ezintandathu kamva, ndisakhala iinyembezi xa ndicinga ngendlela endiyithanda ngayo.

Ndaya evenkileni okokuqala kwiminyaka emihlanu. Ndingaya ngaphandle ngaphandle kokuba ibe kuphela kwento endiyenzayo kule veki. Ndingaba phakathi kwabantu ngaphandle koloyiko lokuphela kwigumbi lasesibhedlele. Usihlalo wam wamandla undinike inkululeko endingayikhumbuliyo.

Kubantu abakhubazekileyo, iincoko ezininzi zijikeleza izitulo ezinamavili zimalunga nendlela abayizisa ngayo inkululeko-kwaye bayayenza nyani. Usihlalo wam ubutshintshile ubomi bam.

Kodwa kubalulekile ukuqaphela ukuba ekuqaleni, isitulo esinamavili sinokuziva ngathi ngumthwalo. Kum, ukuza kwimigaqo yokusebenzisa isitulo esinamavili yinkqubo eyathatha iminyaka eliqela. Utshintsho ekubeni ukwazi ukuhamba ujikeleze (nangona uneentlungu) ukuya kuhlala wedwa ekhaya yayiyenye yeentlungu kunye nokufumana kwakhona.

Xa ndandisemncinci, umbono wokuba "ubambekile" kwisitulo esinamavili wawisoyikisa, kuba ndadibanisa nokulahleka kwamandla am okuhamba. Nje ukuba obo buchule buhambile kwaye usihlalo wam wandinika inkululeko endaweni yoko, ndayijonga ngokwahlukileyo.

Ezam iingcinga malunga nenkululeko yokusebenzisa isitulo esinamavili ziyaphikisana nabasebenzisi besihlalo sabakhubazekile abadla ngokufumana ebantwini. Abantu abancinci "abakhangeleka behle" kodwa basebenzise isihlalo ukuba babe nosizi kakhulu.

Kodwa nantsi into: Asifuni lusizi lwakho.

Ndichithe ixesha elide ndisenziwa ukuba ndikholelwe ziingcali zonyango ukuba ukuba bendisebenzisa isitulo, ngendisilele okanye ndayeka ngandlela thile. Kodwa okwahlukileyo kuyinyani.

Usihlalo wam wamandla kukuqaphela ukuba akukho mfuneko yokuzinyanzela ngenqanaba eligqithisileyo leentlungu zezona zinto zincinci. Ndifanelwe lithuba lokuphila ngenene. Kwaye kuyandivuyisa ukwenza njalo kwisitulo sam esinamavili.

UNatasha Lipman sisifo esinganyangekiyo kunye nebhlog ekhubazekileyo evela eLondon. UkwayiGuquko loMhlaba jikelele, iRhize Emerging Catalyst, kunye neVirgin Media Media Pioneer. Ungamfumana kwi-Instagram, kwi-Twitter nakwibhlog yakhe.