Ukugula Okungalapheki—Indaba Yomkhaya
KUYINI ukugula okungalapheki? Kalula nje, kuyisifo esithatha isikhathi eside. Ngaphezu kwalokho, omunye uprofesa wachaza ukugula okungalapheki ngokuthi “isimo sempilo esishintshile esingeke selashwe ngenqubo elula yokuhlinza noma inqubo emfushane yokwelashwa ngemithi.” Okwenza ukugula okungalapheki noma imiphumela yako ibe inselele kangaka akulona uhlobo lwesifo nendlela yokwelashwa kodwa ukuthi kudingeka kukhuthazelelwe isikhathi eside.
Ngaphezu kwalokho, ngokuvamile imiphumela yokugula okungalapheki ayigcini esigulini kuphela. Incwadi ethi Motor Neurone Disease—A Family Affair ithi: “Abantu abaningi bayingxenye yomkhaya futhi ukushaqeka nokukhathazeka okuzwayo wena [siguli] kuyobathinta nalabo osondelene nabo.” Lokhu kufakazelwa umama ondodakazi yakhe yayinomdlavuza. Uthi: “Wonke amalungu omkhaya ayathinteka, kungakhathaliseki ukuthi ukuthinteka kwawo kuyabonakala noma cha noma ayakuqaphela lokho noma cha.”
Yiqiniso, abathinteki bonke ngendlela efanayo. Nokho, uma amalungu omkhaya eqonda ukuthi ukugula okungalapheki kubathinta kanjani abanye abantu, ayokuhlomela kangcono ukubhekana nezinselele zesimo sawo. Ngaphezu kwalokho, uma labo abangewona amalungu omkhaya—esisebenza nabo, esifunda nabo, omakhelwane, abangane—beliqonda ithonya lokugula okungalapheki, bayokwazi kangcono ukunikeza ukusekela okuwusizo nokunozwela. Sicabanga ngalokhu, ake sibheke ezinye izindlela ukugula okungalapheki okungathinta ngazo imikhaya.
Ukuhamba Ezweni Ongalazi
Lokho umkhaya obhekana nakho ngenxa yokugula okungalapheki kungafaniswa nokuhamba ezweni ongalazi. Nakuba ezinye izinto ziyofana nezasezweni lawo, ezinye izinto ziyoba ezingajwayelekile noma ezihluke ngokuphelele. Lapho ilungu lomkhaya lihlaselwa ukugula okungalapheki, izinto eziningi ngeke zishintshe endleleni yokuphila yomkhaya. Nokho, ezinye izinto ziyohluka kakhulu.
Ekuqaleni, ukugula ngokwako kungase kuthonye indlela evamile yomkhaya yokwenza izinto futhi kuphoqelele ilungu ngalinye lomkhaya ukuba lenze ushintsho oluthile ukuze likwazi ukukhuthazela. Lokhu kufakazelwa uHelen oneminyaka engu-14 ubudala, unina ophethwe ukucindezeleka okungapheli okunzima. Uthi: “Sishintsha isimiso sethu sivumelane nalokho umama angakwenza nangeke akwenze ngosuku oluthile.”
Ngisho nokwelapha—okuhloselwe ukuqeda ukugula—kungase kuyiphazamise nakakhulu indlela yomkhaya entsha yokwenza izinto. Cabanga ngesibonelo sikaBraam no-Ann, okukhulunywe ngabo esihlokweni esandulele. UBraam uthi: “Kwadingeka siyishintshe kakhulu indlela yethu yokwenza izinto nsuku zonke ngenxa yokwelashwa kwezingane zethu.” U-Ann uyachaza: “Sasehla senyuka siya esibhedlela zonke izinsuku. Ngaphezu kwalokho, udokotela watusa ukuba izingane zethu zidle ukudla okuncane izikhathi eziyisithupha ngosuku ukuze sivale isikhala sokuntuleka kokudla okunomsoco esibangwa isifo sazo. Kimi, kwakusho indlela entsha ngokuphelele yokupheka.” Okwakuyinselele nakakhulu kwakuwukusiza izingane zenze ukuzivivinya okuqinisa izicubu okwakushiwo udokotela. U-Ann uyakhumbula: “Kulokho-ke, kwakufanele ngiziphoqe nsuku zonke.”
Njengoba isiguli sizama ukubekezelela ukukhathazeka—ngezinye izikhathi izinhlungu—zokwelashwa nokuxilongwa abezempilo, sincika kakhulu emkhayeni ukuze sithole usizo nokusekelwa okungokomzwelo. Ngenxa yalokho, akukhona nje kuphela ukuthi amalungu omkhaya kudingeka afunde amakhono amasha okunakekela isiguli ngokomzimba kodwa wonke aphoqeka ukuba alungise izimo zengqondo, imizwelo, izindlela zokuphila nezindlela zokwenza izinto.
Kuyaqondakala ukuthi zonke lezi zinto ezidingekayo ziyakuvivinya ngempela ukukhuthazela komkhaya. Umama ondodakazi yakhe yayisesibhedlela yelashelwa umdlavuza, uqinisekisa ukuthi “kungakhathaza kakhulu kunalokho noma ubani angase akucabange.”
Ukungaqiniseki Okungapheli
Incwadi ethi Coping With Chronic Illness—Overcoming Powerlessness ithi: “Ukushintshashintsha kwesimo sesifo esingalapheki kubangela umuzwa osongelayo wokungaqiniseki.” Lapho amalungu omkhaya esethi azivumelanisile nezinye izimo, kungase kuvele ezinye esezishintshile mhlawumbe ezinzima nakakhulu. Izimpawu zingase zishintshe esikhaleni nje noma zivele zibe zimbi kakhulu, futhi ukwelashwa kungase kungenzi bungcono obebulindelwe. Ukwelashwa kungase kudingeke ukuba kushintshwe ngezikhathi ezithile, noma kungase kubangele ubunzima obebungalindelekile. Njengoba isiguli sesincike kakhulu ekutholeni ukusekelwa, lo mkhaya okhungathekile ongase udonse kanzima ukuze ukunikeze, imizwelo ebeyicindezelwe ingase iqhume ngokungazelelwe.
Ngenxa yokuthi ukugula nokwelashwa okuningi awukwazi ukusho ukuthi kuzoba namiphi imiphumela, ngeke ungazibuzi imibuzo enjengokuthi: Lokhu kuzoqhubeka kuze kube nini? Lokhu kugula kuzoba kubi kangakanani? Kungakanani esingakukhuthazelela? Isifo esibulalayo ngokuvamile sibangela nokungaqiniseki okukhulu—“Singakanani isikhathi azosiphila?”
Ukugula, ukwelashwa, ukukhathala nokungaqiniseki konke kuyahlangana kubangele omunye umphumela ongalindelekile.
Imiphumela Ebudlelwaneni Nabanye
UKathleen, omyeni wakhe wayephethwe ukucindezeleka okungapheli, uyachaza: “Kwakufanele ngilwisane nemizwa enzima yokuzizwa ngihlukanisiwe nabanye neyokuzizwa ngivalelekile.” Uyaqhubeka: “Kwakunzima, ngoba sasingakwazi ukumema abantu futhi sasingaphumeleli uma besimema. Sagcina singasabi nabo nhlobo ubudlelwane nabantu.” NjengoKathleen, abanye bagcina sebezizwa benecala ngenxa yokungabamemi abanye nokungayi lapho bemenywa. Kungani lokhu kwenzeka?
Ukugula ngokwako noma imiphumela yokwelashwa ingase ikwenze kube nzima noma kungenzeki nhlobo ukuhlanganyela emibuthanweni yokuzijabulisa. Umkhaya kanye nesiguli bangase babe nomuzwa wokuthi ukugula kuyihlazo, noma besabe ukuthi kuzobangela ukuphoxeka. Ukucindezeleka kungase kwenze isiguli sizizwe singasafaneleki kubangane esasinabo, noma umkhaya ungase nje ungabi nawo amandla okuba nobudlelwane nabanye. Ngenxa yezizathu ezihlukahlukene, ukugula okungalapheki kungaphumela ekuzehlukaniseni nasekubeni umkhaya wonke ube nesizungu.
Ngaphezu kwalokho, akubona bonke abantu abayokwazi ukuthi kufanele bathini noma kufanele basabele kanjani uma benomuntu onokukhubazeka. (Bheka ibhokisi elithi “Indlela Ongasekela Ngayo,” ekhasini 11.) “Uma ingane yakho ihlukile kwezinye, abantu abaningi bavele bakugqolozele bese bekhuluma amazwi ayiziswana,” kusho u-Ann. “Empeleni, uthambekela ekuzibekeni icala ngokugula kwayo, futhi lokho abakushoyo kumane kukwenze uzizwe unecala nakakhulu.” Lokho okushiwo u-Ann kuhlobana nokunye imikhaya okungenzeka ibhekane nakho.
Imizwelo Eyinhlekelele
“Ngesikhathi sokutholwa kwesifo, imikhaya eminingi isabela ngokwethuka, ukungakholelwa nokuphika,” kusho omunye umcwaningi. “Kungaphezu kwamandla.” Yebo, kungaba inhlekelele ngempela ukwazi ukuthi othile omthandayo unesifo esisongela ukuphila noma esigogayo. Umkhaya ungase ube nomuzwa wokuthi asephelile amathemba namaphupho awo, usele nekusasa elingaqinisekile nomuzwa ojulile wokulahlekelwa nosizi.
Yiqiniso, ukutholwa kwesifo kungase kuyikhulule imikhaya eminingi eye yabona izimpawu ezithatha isikhathi eside nezicindezelayo elungwini lomkhaya ibe ingayazi imbangela. Kodwa eminye imikhaya ingase isabele ngendlela ehlukile lapho sesitholakele isifo. Umama othile eNingizimu Afrika uyavuma: “Kwakubuhlungu kakhulu lapho ekugcineni sesitshelwa ukuthi izingane zethu zaziphethwe yini, uma ngikhuluma iqiniso, nga kungcono ukube angitshelwanga ukuthi zinasifo sini.”
Incwadi ethi A Special Child in the Family—Living With Your Sick or Disabled Child ichaza ukuthi “kungokuvamile ukubhekana nokuphazamiseka okungokomzwelo . . . njengoba uzama ukwamukela leli qiniso elisha. Ngezinye izikhathi imizwa yakho ingaba namandla kakhulu kangangokuthi wesabe ukuthi ngeke ukwazi ukubhekana nayo.” Umlobi wale ncwadi, uDiana Kimpton, omadodana akhe amabili ayene-cystic fibrosis, uyalandisa: “Ngangesatshiswa imizwa yami siqu futhi ngangifuna ukwazi ukuthi kufanelekile yini ukukhathazeka kangaka.”
Akukhona okungajwayelekile ngemikhaya ukuba yesabe—ukwesaba okungaziwa, ukwesaba ukugula, ukwesaba ukwelashwa, ukwesaba ubuhlungu nokwesaba ukufa. Ikakhulu izingane zingase zibe nezinto eziningi ezizesabayo—ikakhulu uma zingayitholi incazelo enengqondo ngalokho okwenzekayo.
Ukuthukuthela nakho kuvamile. Umagazini waseNingizimu Afrika, i-TLC, uyachaza: “Amalungu omkhaya ngokuvamile angase abe izisulu isiguli esikhiphela kuzo intukuthelo.” Amalungu omkhaya angase acasuke—acasukele odokotela ngokungasheshi bathole inkinga, azicasukele wona ngokudlulisela isifo ngofuzo, acasukele isiguli ngokungazinakekeli kahle, acasukele uSathane uDeveli ngokubangela ukuhlupheka, noma acasukele ngisho noNkulunkulu, enomuzwa wokuthi uyena obangela ukugula. Umuzwa wecala ungenye indlela evamile yokusabela ekuguleni okungalapheki. Incwadi ethi Children With Cancer—A Comprehensive Reference Guide for Parents ithi: “Cishe noma imuphi umzali noma ingane yakubo kwengane enomdlavuza iba nomuzwa wecala.”
Imizwelo exubene ngokuvamile ibangela ukucindezeleka—ngezinga elincane noma elikhulu. “Mhlawumbe lena yindlela evamé kakhulu bonke abasabela ngayo,” kubhala omunye umcwaningi. “Nginefayili eligcwele izincwadi ezifakazela lokhu.”
Yebo, Imikhaya Ingakwazi Ukubhekana Nesimo
Ngasohlangothini oluhle, imikhaya eminingi iye yathola ukuthi ukubhekana nesimo akunzima njengoba kwakubonakala kunjalo ekuqaleni. “Umbono oba nawo uyoba mubi kakhulu kunalokho isimo sangempela esiyikho,” kuqinisekisa uDiana Kimpton. Ngalokho ahlangabezana nakho, wathola ukuthi “awumboziwe ifu elimnyama njengoba ucabanga uma isimo sisaqala.” Qiniseka ukuthi eminye imikhaya iye yaphumelela ohambweni lwayo ezweni engalazi lokugula okungalapheki futhi nawe ungaphumelela. Abaningi baye bathola ukuthi ukwazi nje ukuthi abanye baye bakhuthazela kuye kwabakhulula futhi kwabanika ithemba.
Nokho, umkhaya ungase uzibuze kufanele, ‘Singabhekana kanjani nesimo?’ Isihloko esilandelayo sizohlola ezinye zezindlela imikhaya eye yakhuthazelela ngazo ukugula okungalapheki.
[Amazwi acashunwe esihlokweni ekhasini 5]
Imikhaya kudingeka inakekele isiguli futhi ilungise izimo zayo zengqondo, imizwelo nendlela yokuphila
[Amazwi acashunwe esihlokweni ekhasini 6]
Kokubili isiguli nomkhaya bayoba nemizwelo enamandla
[Amazwi acashunwe esihlokweni ekhasini 7]
Ungalilahli ithemba. Eminye imikhaya iye yabhekana nesimo, nawe ungabhekana naso
[Ibhokisi ekhasini 7]
Ezinye Izinselele Zokugula Okungalapheki
• Ukufunda ngokugula nendlela yokubhekana nakho
• Ukushintsha indlela yakho yokuphila nendlela yokwenza izinto nsuku zonke
• Ukubhekana nesimo esishintshile sokuba nobudlelwane nabanye
• Ukuzigcina unomuzwa wokuba umuntu ovamile nokuzilawula
• Ukudabuka ngokulahlekelwa okubangelwé ukugula
• Ukubhekana nemizwelo ebuhlungu
• Ukulondoloza isimo sengqondo esiqondile