Isifo Esinganyangekiyo—Umbandela Wentsapho
YINTONI isifo esinganyangekiyo? Ngamafutshane, sisifo esihlala ixesha elide. Omnye unjingalwazi ulebela ngelithi isifo esinganyangekiyo “kukutshintsha kwempilo okungenakunyangwa yinkqubo nje eqhelekileyo yotyando okanye lunyango nje lwezamayeza lwexeshana.” Asilohlobo lwesifo esinganyangekiyo nonyango lwaso olusenza sibe lucelomngeni kodwa sisibakala sokuba kufuneka sinyamezelwe ixesha elide.
Ukongezelela asingomguli yedwa ochatshazelwa yimiphumo yesifo esinganyangekiyo. Incwadi ethi Motor Neurone Disease—A Family Affair ithi: “Maninzi amalungu entsapho yaye intlungu nokuxhalaba okuviwa nguwe [mguli] kuchaphazela nabo basondeleyo kuwe.” Oku kungqinwa ngumama wenye intombazana eyayinomhlaza. Uthi: “Lungu ngalinye lentsapho liyachaphazeleka, likubonakalisa lingakubonakalisi okanye likwazi lingakwazi oko.”
Kambe ke, abantu abasayi kuchaphazeleka ngendlela efanayo. Noko ke, ukuba amalungu entsapho ayayazi indlela isifo esinganyangekiyo esibachaphazela ngayo abantu ngokubanzi, asenokukuxhobela kakuhle ukujamelana nocelomngeni lwemeko leyo yawo. Ukongezelela, ukuba abo bangenawo amalungu entsapho—abo asebenza nabo, abo afunda nabo, abamelwane nabahlobo—bayayazi into eyenziwa sisifo esinganyangekiyo emntwini, baya kukwazi kakuhle ukunikela uncedo olufanelekileyo nolobubele. Sisacinga ngoku, makhe siqwalasele iindlela ezimbalwa iintsapho ezinokuchatshazelwa ngazo sisifo esinganyangekiyo.
Uhambo Olunqumla Kwilizwe Lasemzini
Amava entsapho ngesifo esinganyangekiyo anokufaniswa nokuthabatha kwayo uhambo olunqumla kwilizwe lasemzini. Ngoxa ezinye izinto zisenokufana nezo zikwilizwe lale ntsapho ezinye zisenokungaqheleki okanye zide zahluke kwaphela. Xa isifo esinganyangekiyo sihlasela intsapho, izinto ezininzi zisenokungatshintshi kwindlela ephila ngayo. Noko ke, ezinye izinto ziya kwahluka kwaphela.
Ekuqaleni, esi sifo sisenokuphazamisa izinto ezenziwa yintsapho ngokuqhelekileyo size sinyanzele ilungu ngalinye lentsapho ukuba lenze uhlengahlengiso ukuze lihlangabezane naso. Oku kungqinwa nanguHelen oneminyaka eli-14, ononina othwaxwa luxinezeleko olungaphaya kwengqondo. Uthi: “Senza uhlengahlengiso kucwangciso lwethu ngokuvisisana noko uMama anokukwenza nangenakukwenza ngosuku oluthile.”
Kwanonyango—olwenzelwe ukunika isiqabu kwisigulo eso—lunokuphazamisana ngakumbi nocwangciso olutsha lwentsapho. Khawucinge nje ngomzekelo kaBraam noAnn, abakhankanywe kwinqaku elandulelayo. UBraam uthi: “Kwafuneka senze uhlengahlengiso olubonakalayo kucwangciso lwethu lwemihla ngemihla ngenxa yokunyangwa kwabantwana bethu.” UAnn uthi: “Sasiquqa sibuyelela esibhedlele mihla le. Kanti ukongezelela koko, ugqirha wancomela ukuba sinike aba bantwana izidlo kathandathu ngemini ukuthabathela indawo izondlo ezazingekho egazini labo ngenxa yesifo sabo. Kum yayintsha gqitha loo ndlela yokupheka.” Olona celomngeni lwalungamandla kukunceda aba bantwana benze umthambo owawunconyelwe wokomeleza izihlunu. UAnn ukhumbula oku: “Kwakuye kufuneke kuliwe amadabi mihla le kuba bengafuni.”
Njengoko umguli ezama ukuzilungelelanisa nokungonwabi—yaye maxa wambi nentlungu—yokunyangwa nokubhilabhilwa ziingcali zezamayeza, uxhomekeka kakhulu kwintsapho yakowabo ukuze ancediswe kwizinto ezithile aze axhaswe ngokweemvakalelo. Loo nto iphumela ekubeni amalungu entsapho angapheleli ekufundeni ubuchule obutsha bokunyamekela umguli kodwa kuye kufuneke enze uhlengahlengiso kwizimo zengqondo zawo, iimvakalelo, indlela aphila ngayo nezinto azenza mihla le.
Liyaqondakala elokuba, zonke ezi mfuno zilufuna ngamandla unyamezelo lwentsapho. Omnye umama onentombi eyayinyangwa esibhedlele ngenxa yomhlaza uyavuma ukuba “kutheza amandla gqitha kunokuba umntu enokuqikelela.”
Ukungaqiniseki Okuqhubekayo
Incwadi ethi Coping With Chronic Illness—Overcoming Powerlessness ithi: “Amahlandinyuka aqhubekayo abangelwa sisifo esinganyangekiyo akwenza uzive ungaqinisekanga.” Xa kanye amalungu entsapho eziqhelanisa nemeko ethile, asenokujamelana nezinye ezinzima ngakumbi. Iimpawu zesi sifo zisenokutshintshatshintsha okanye ngequbuliso zibe mandundu kakhulu, yaye unyango lusenokungabangeli isiqabu ebesilindelwe. Kusenokufuneka unyango lutshintshwe amaxesha ngamaxesha okanye lubangele ezinye iingxaki ebezingalindelwanga. Njengoko lo mguli efuna ngakumbi ukuxhaswa yile ntsapho ididekileyo nesenokuba izama nzima ekwenzeni ngolo hlobo, iimvakalelo ekusenokuba kudala ezibambile zinokugqabhuka ngequbuliso.
Ukuvela ngequbuliso kwezigulo ezithile nokungabikho konyango kuphakamisa imibuzo efana nale: Iya kwenzeka de kube nini le nto? Esi sigulo siya kugabadela de kube nini? Thina siza kunyamezela kangakanani? Isifo esinganyangekiyo sidla ngokubangela ukungaqiniseki okungakumbi kokuba—“Kuya kuthabatha ixesha elingakanani ngaphambi kokuba ukufa kumhlasele?”
Oku kugula, iindlela zonyango, ukudinwa nokungaqiniseki, xa zidibene ezi zinto zenza enye into engalindelekanga.
Into Eziyenzayo Kubomi Basekuhlaleni
UKathleen, onomyeni owayenokuxinezeleka okungapheliyo uthi: “Kwafuneka ndilwe neemvakalelo ezinamandla zokuziva ndibekelwe bucala yaye ndikhonkxekile. Le meko yathi gqolo kuba kwakunzima ukumema abantu, nathi singakwazi ukuya xa simenywe ezimbuthweni. Ekugqibeleni kwaba nzima ukuba phakathi kwabantu.” NjengoKathleen, abaninzi baphela bejamelene neemvakalelo zokuziva benetyala ngenxa yokuba bengakwazi ukubonisa ububele okanye bengakwazi ukuya xa bemenyiwe. Ibangelwa yintoni loo nto?
Isifo okanye izinto ezibangelwa lunyango olusebenzisayo zisenokwenza kube nzima okanye ungakwazi ukuba sezimbuthweni. Intsapho nomguli basenokuziva behlazekile ekuhlaleni ngenxa yesi sifo, okanye basenokoyika ukuba sakubenza bazive bephoxekile. Ukuxinezeleka kusenokubangela umguli avakalelwe kukuba akasafaneleki ukuba nabahlobo bangaphambili, okanye intsapho isenokuba madolw’ anzima ukuya ezimbuthweni. Ngenxa yezizathu eziliqela, isifo esinganyangekiyo ngokulula nje sinokubangela ukuba intsapho izikhethe okanye ibe ngoonkom’ edla yodwa.
Ukongezelela, asinguye wonke umntu oya kwazi ukuba makancokole njani okanye aziphathe njani xa kukho umntu ogulayo. (Bona ibhokisi ethi “Indlela Onokuxhasa Ngayo,” ekwiphepha 19.) UAnn uthi: “Xa umntwana wakho ahlukile kwabanye, abantu bayathanda ukumakhel’ umkhanya okanye bathethe izinto ezingekho ngqiqweni. Eneneni, utyekela ekuzigxekeni ngenxa yoku kugula, yaye izinto abazithethayo zikwenza uzive unetyala ngakumbi.” Oko kuthethwa nguAnn kusingenisa kwenye into edla ngokufunyanwa ziintsapho.
Iimvakalelo Ezibangela Intlungu
Omnye umphengululi uthi: “Xa kufunyaniswa isifo, iintsapho ezininzi ziyothuka, zingakholelwa, zisithi ayinakwenzeka loo nto. Kunzima gqitha ukuyithwala.” Ewe kubuhlungu kakhulu ukufumanisa ukuba umntu omthandayo unesifo esisongela ubomi okanye esihambis’ umzimba. Intsapho isenokuvakalelwa kukuba amathemba namaphupha ayo aphelile, isala inekamva elingaqinisekanga neemvakalelo ezinzulu zokulahlekelwa nentlungu.
Liyinyaniso elokuba, kwiintsapho ezininzi eziye zabona iimpawu ezibuhlungu nezingapheliyo kwilungu lentsapho zingamazi unobangela, ukufunyaniswa kwesifo kunokuzinika isiqabu. Kodwa ezinye iintsapho zinokusabela ngendlela eyahlukileyo xa kufunyaniswa isifo. Omnye umama waseMzantsi Afrika uvuma ngelithi: “Kwakubuhlungu gqitha ekugqibeleni ukuxelelwa undonakele owawusemntwaneni wam, kangangokuba ngeliphandle, nokuba ndandingazanga ukuba unasiphi isifo ngekubhetele.”
Incwadi ethi A Special Child in the Family—Living With Your Sick or Disabled Child ithi “ingokwemvelo into yokuphekwa usophulwa yintlungu . . . njengoko uziqhelanisa nesi sigulo. Maxa wambi intlungu isenokukuphatha ngamandla kangangokuba ude woyike ukujamelana nayo.” Umbhali wale ncwadi uDiana Kimpton, onoonyana ababini abanecystic fibrosis uthi: “Ndandisoyikisela iimvakalelo zam yaye ndandifuna nje ukuqiniseka ukuba akukho nto imbi ndiyenzileyo ngokuziva buhlungu.”
Akuyonto inqabileyo ukuba iintsapho zoyike—zoyike into engaziwayo, zoyike esi sifo, zoyike unyango, zoyike intlungu zize zoyike ukufa. Abantwana ngokukhethekileyo basenokuba nezinto ezininzi abazoyikayo—ingakumbi xa bengayichazelwanga kakuhle into eyenzekayo.
Eny’ into edla ngokuxhaphaka kukuba nomsindo. Iphephancwadi laseMzantsi Afrika iTLC, lithi: “Amalungu entsapho aba zizisulu zomsindo womguli.” Namalungu entsapho asenokuba nomsindo—ngenxa yokuba oogqirha bengakhawulezi bayifumanise ingxaki, azicaphukele wona ngokudlulisela esi sifo kwimizila yemfuza, abe nomsindo ngenxa yokuba umguli engakhange azinyamekele kakuhle, acaphukele uSathana uMtyholi ngenxa yokubangela oku kubandezeleka, okanye ade acatshukiswe nanguThixo kuba ecinga ukuba nguye obangele esi sifo. Ukuziva unetyala kuyenye into eqhelekileyo xa kukho isifo esinganyangekiyo. Incwadi ethi Children With Cancer—A Comprehensive Reference Guide for Parents ithi: “Phantse nawuphi na umzali okanye umntakwabo mntwana onomhlaza uziva enetyala.”
Oku kudideka ngokweemvakalelo—ngokomkhamo othe chatha okanye ongephi—kudla ngokubangela ukuxinezeleka. Omnye umphengululi ubhala athi: “Kusenokwenzeka ukuba le yeyona nto idla ngokwenzeka kunazo zonke. Ndineeleta ezizalise ifayile ukungqina loo nto.”
Ewe, Iintsapho Zinokuphumelela
Xa siyijonga kwelinye icala le nto, iintsapho ezininzi ziye zafumanisa ukuba ukujamelana nale meko akunzima njengokuba kwakubonakala kunjalo kuqala. UDiana Kimpton wenza esi siqinisekiso: “Umfanekiso-ngqondweni ozinika wona uba ngaphaya kwengqondo.” Ngokwamava akhe wafumanisa ukuba “ikamva alibi mfiliba njengokuba kwakunjalo mandulo phayaa.” Qiniseka ukuba xa ezinye iintsapho zaluphumelela uhambo lwazo kweli lizwe lasemzini lesifo esinganyangekiyo nawe unako. Abaninzi baye bafumanisa ukuba ukwazi nje ukuba abanye baye bahlangabezana naso kuye kwabanika isiqabu nethemba.
Noko ke intsapho inokuzibuza, ‘Thina sinokuphumelela njani?’ Inqaku elilandelayo liya kuxubusha ngendlela ezinye iintsapho eziye zaphumelela ngayo.
[Amagama acatshulweyo akwiphepha 13]
Iintsapho kufuneka zinyamekele umguli zize zenze uhlengahlengiso kwisimo sazo sengqondo, iimvakalelo nendlela yazo yokuphila
[Amagama acatshulweyo akwiphepha 14]
Umguli nentsapho baya kuchukumiseka ngamandla
[Amagama acatshulweyo akwiphepha 15]
Musa ukulahla ithemba. Ezinye iintsapho ziye zaphumelela. Ngoko nawe unako
[Ibhokisi ekwiphepha 15]
Olunye Ucelomngeni Lwesifo Esinganyangekiyo
• Ukufunda ngesi sifo nendlela yokuhlangabezana naso
• Ukulungelelanisa indlela yobomi nocwangciso lwamihla le
• Ukuhlangabezana nokutshintsha kwendlela ophila ngayo nabantu ekuhlaleni
• Ukuphila ngendlela eqhelekileyo nokuzilawula
• Ukuba buhlungu ngenxa yelahleko ebangelwa sesi sifo
• Ukuhlangabezana nentlungu engokweemvakalelo
• Ukulondoloza isimo sengqondo esihle