Ukuzama Kanjani Ukuhamba Kwamadivayisi Wokushintsha Indlela Engizibuka Ngayo nge-MS

-Delile

• Okubalulekile

Ehlobo phakathi konyaka wami omncane nonyaka omkhulu ekolishi, mina nomama sanquma ukubhalisela ikamu lezicathulo zokuqina. Amakilasi ayeqhutshwa njalo ekuseni ngo-5 ekuseni Ngolunye usuku ekuseni ngenkathi ngigijima, angizizwanga izinyawo zami. Emasontweni ambalwa alandelayo, izinto zaba zimbi kakhulu, futhi ngazi ukuthi sekuyisikhathi sokubona udokotela.

Ngavakashela odokotela abaningana abanginikeza izeluleko eziphikisanayo. Emasontweni ambalwa kamuva, ngazithola sengisesibhedlela ukuze ngithole omunye umbono.

Odokotela bangitshele ukuthi ngine-multiple sclerosis (MS), isifo sesimiso sezinzwa esiyinhloko esiphazamisa ukuhamba kolwazi ngaphakathi kobuchopho naphakathi kobuchopho nomzimba.

Ngaleso sikhathi, ngangingazi ukuthi yini i-MS. Bengingazi ukuthi yini engenza emzimbeni wami.

Kepha ngangazi ukuthi angisoze ngavumela isimo sami singichaze.

Ezinsukwini ezimbalwa, isifo engangingazi lutho ngaso saba yinto ephelele nokugxila kakhulu empilweni yomndeni wami. Umama nodadewethu baqala ukuchitha amahora amaningi kukhompyutha usuku ngalunye, befunda yonke indatshana eyodwa nezinsizakusebenza abangazithola. Sasifunda njengoba sasihamba, futhi kunolwazi oluningi kakhulu lokugaywa.

Kwesinye isikhathi bekungathi ngise-roller coaster. Izinto bezihamba ngokushesha. Ngangesaba futhi ngangingazi ukuthi ngingalindelani ngokulandelayo. Ngangigibele engingazange ngikhethe ukuqhubeka nakho, ngingaqiniseki ukuthi kuzongiyisaphi.

Esikutholile ngokushesha ukuthi i-MS ifana namanzi. Kungathatha ukwakheka namafomu amaningi, ukunyakaza okuningi, futhi kunzima ukukuqukatha noma ukubikezela. Konke ebengingakwenza bekuwukufaka nje bese ngilungiselela noma yini.

Ngazizwa ngidabukile, ngikhungathekile, ngididekile, futhi ngithukuthele, kodwa ngangazi ukuthi akunasizathu sokukhononda. Vele, umndeni wami wawungeke ungivumele noma kunjalo. Sinesiqubulo esithi: "I-MS iyi-BS."

Ngangazi ukuthi ngangizolwa nalesi sifo. Ngangazi ukuthi nganginebutho labasekeli ngemuva kwami. Ngangazi ukuthi bazoba lapho ngaso sonke isikhathi.

Ngo-2009, umama wami wathola ucingo olashintsha impilo yethu. Omunye eNational MS Society wayefunde ngokuxilongwa kwami ​​futhi wabuza ukuthi bangasisekela kanjani futhi kanjani.

Ezinsukwini ezimbalwa kamuva, ngamenywa ukuba ngiyohlangana nomuntu owayesebenza nentsha esanda kutholakala inabadala. Wafika endlini yami saphuma sayothenga u-ayisikhilimu. Wayelalelisisa ngenkathi ngikhuluma ngokuxilongwa kwami. Ngemuva kokumtshela indaba yami, wabelana ngamathuba, imicimbi, kanye nezinsiza inhlangano eyayinganikela ngazo.

Ukuzwa ngomsebenzi wabo nezinkulungwane zabantu ababasizayo kungenze ngaba nesizungu. Kwakududuza ukwazi ukuthi kunabanye abantu nemindeni laphaya abalwa le mpi engangiyiyo. Ngizwe sengathi ngibe sethubeni lokukwenza, ndawonye. Ngabona zisuka nje ukuthi ngifuna ukuzibandakanya.

Ngokushesha, umndeni wami waqala ukubamba iqhaza emicimbini efana ne-MS Walk ne-Challenge MS, waqongelela imali yokwenza ucwaningo futhi wabuyisela enhlanganweni eyayinikela okungaka kithi.

Ngokusebenza kanzima nangokuzijabulisa okukhulu, iqembu lethu - elibizwa nge- “MS is BS” - likhuphule imali engaphezu kwama- $ 100,000 kule minyaka edlule.

Ngithole umphakathi wabantu abangizwisisayo. Kwakuyiqembu "elikhulu" futhi elikhulu kunawo wonke engake ngalijoyina.

Kungakabiphi, ukusebenza ne-MS Society kwaba yinto encane kakhulu kimi futhi kwangijabulisa kakhulu. Njengomphathi wezokuxhumana, ngangazi ukuthi ngingasebenzisa amakhono ami obuchwepheshe ukusiza abanye. Ekugcineni, ngijoyine inhlangano okwesikhashana, ngikhuluma nenye intsha esanda kutholakala ukuthi ine-MS.

Ngenkathi ngizama ukusiza abanye ngokwabelana ngezindaba zami nokuhlangenwe nakho kwami, ngathola ukuthi babengisiza kakhulu. Ukukwazi ukusebenzisa izwi lami ukusiza umphakathi we-MS kunginike udumo nenhloso enkulu kunalokho ebengikucabanga.

Lapho ngihambela imicimbi eminingi, ngafunda ngokwengeziwe ukuthi abanye babhekana kanjani nalesi sifo futhi bakwazi ukuphatha izimpawu zabo. Kusukela kule micimbi, ngithole into ebengingayitholi ndawo: izeluleko mathupha ezivela kwabanye abalwa impi efanayo.

Noma kunjalo, ikhono lami lokuhamba laqhubeka likhula kancane kancane. Kungaleso sikhathi lapho ngaqala khona ukuzwa ngomshini omncane, wokuvuselela ugesi abantu ababizwa ngokuthi "owenza izimangaliso."

Phezu kwezinselelo zami eziqhubekayo, ukuzwa ngokunqoba kwabanye abantu kwanginika ithemba lokuqhubeka ngilwa.

Ngo-2012, imithi engangiyiphuza ukusiza ukuphatha izimpawu zami yaqala ukuthinta ukuqina kwamathambo ami, futhi ukuhamba kwami ​​kwaqhubeka kwaba kubi kakhulu. Ngaqala ukuzwa "ukwehla konyawo," inkinga yomlenze wokuhudula ovame ukuza ne-MS.

Yize ngazama ukuhlala nginethemba, ngaqala ukwamukela iqiniso lokuthi ngangizodinga isihlalo sabakhubazekile.

Udokotela wami wangifaka insimbi yokufakelwa eyayenzelwe ukubamba unyawo lwami phezulu ukuze ngingakhubeki kuyo. Esikhundleni salokho, yemba emlenzeni wami futhi yabangela ukungaphatheki kahle okungaphezu kwalokho eyayisizile.

Ngezwa kakhulu ngedivayisi "yemilingo" ebizwa ngeBioness L300Go. Yindebe encane oyigqoka emilenzeni yakho ukuyikhuthaza futhi isize ukubuyisa imisipha yakho. Ngangikudinga lokhu, ngicabanga, kodwa ngangingakwazi ukukukhokhela ngaleso sikhathi.

Ezinyangeni ezimbalwa kamuva, ngamenywa ukuba nginikeze inkulumo yokuvula nokuvala emcimbini omkhulu wokuqongelela imali we-MS Achievers weSMS Society.

Ngikhulume ngohambo lwami lwe-MS, abangane abangakholeki engangihlangane nabo ngenkathi ngisebenza nenhlangano, nangabo bonke abantu iminikelo engasiza.

Ukulandela umcimbi, ngithole ucingo oluvela kumongameli we-MS Society. Omunye emcimbini wangizwa ngikhuluma futhi wabuza ukuthi bangangithengela i-L300Go.

Futhi kwakungeyona nje noma ngubani, kodwa umdlali webhola leRedskins uRyan Kerrigan. Ngagcwala ukubonga nentokozo.

Lapho ekugcineni ngimbona futhi, cishe unyaka kamuva, kwakunzima ukusho ngamagama lokho ayenginike khona. Ngaleso sikhathi, ikhafu emlenzeni wami lalisho lukhulu kakhulu kunanoma iyiphi insimbi noma insimbi yokwesekela izinyawo.

Kwase kuyisandiso somzimba wami - isipho esasishintshe impilo yami futhi sanginikeza ithuba lokuqhubeka nokusiza abanye.

Kusukela ngosuku engathola ngalo okokuqala iBioness L300Go, noma “ikhompyutha yami encane” njengoba ngiyibiza kanjalo, ngaqala ukuzizwa nginamandla futhi ngizethemba ngokwengeziwe. Ngibuye ngabuyela esimweni esejwayelekile engingazi nokuthi ngilahlekelwe. Lokhu bekuyinto engekho omunye umuthi noma ithuluzi ebelikwazi ukunginika yona.

Ngenxa yale divayisi, ngizibona ngingumuntu ojwayelekile futhi. Angilawulwa yisifo sami. Kwaphela iminyaka, ukuhamba nokunyakaza kwakungumsebenzi omkhulu kunomvuzo.

Manje, ukuhamba ngempilo akuseyona okwenyama futhi umsebenzi wengqondo. Angidingi ukuzitshela ukuthi "Phakamisa unyawo lwakho, uthathe igxathu," ngoba i-L300Go yami ingenzela lokho.

Angikaze ngikuqonde ukubaluleka kokuhamba ngize ngiqale ukukulahla. Manje, zonke izinyathelo ziyisipho, futhi ngizimisele ngokuqhubekela phambili.

Okubalulekile

Yize uhambo lwami lusekude ukuphela, engikufundile selokhu kwatholakala ukuthi kubaluleke kakhulu: Unganqoba noma yini impilo ekuphonsa kuwe nomndeni nomphakathi osekelayo.

Noma ungazizwa unesizungu kangakanani, kukhona abanye lapho abazokuphakamisa futhi baqhubeke nokuqhubekela phambili. Kunabantu abaningi kakhulu emhlabeni abafuna ukukusiza endleleni.

I-MS ingazizwa inesizungu, kodwa kunokusekelwa okuningi laphaya. Noma ngubani ofunda lokhu, noma ngabe une-MS noma cha, engikufundile kulesi sifo ukungalilahli ithemba, ngoba "ingqondo inamandla umzimba uqine" futhi "i-MS iyi-BS."

U-Alexis Franklin ungummeli onesiguli ovela e-Arlington, VA owatholakala ene-MS eneminyaka engama-21. abantu ngokuhlangenwe nakho kwakhe nalesi sifo. Ungumama onothando womxube we-chihuahua, uMinnie, futhi uyakujabulela ukubuka ibhola le-Redskins, ukupheka nokukhilosha ngesikhathi sakhe samahhala.