Yile nto iJongeka ngayo iMMS

Umxholo

• UKristen Pfiefer, 46
  Ifunyenwe ngo-2009
• UJackie Morris, 30
  Ifunyenwe: 2011
• UAngela Reinhardt-Mullins, 40
  Ifunyenwe: 2001
• UMike Menon, 34
  Ifunyenwe: 1995
• USharon Alden, oneminyaka engama-53 ubudala
  Ifunyenwe: 1996
• UJeanne Collins, 63
  Ifunyenwe: 1999
• UNicole Connelly, 36
  Ifunyenwe: 2010
• UKatie Meier, 35
  Ifunyenwe: 2015
• USabina Diestl, 41, kunye nomyeni wakhe, uDanny McCauley, 53
  Ifunyenwe: 1988

Iza ngeendlela ezahlukeneyo kunye nezigaba, kuzo zonke iimilo kunye nobukhulu. Iyanyoshoza kwezinye, kodwa imiphanda isiya kwabanye intloko-phambili.Sisifo se-multiple sclerosis (MS) - isifo esingaqikelelekiyo, esiqhubela phambili nesichaphazela abantu abangaphezu kwezigidi ezi-2.3 kwihlabathi liphela.

Kubantu abangaphantsi kwe-9, i-MS ayizichazi ukuba ngoobani, indlela abenza ngayo, okanye ukuba ilizwe libabona njani. Ubomi babo busenokuba butshintshile okoko kwafunyaniswa ukuba ubonisiwe, kodwa amabali abo ahlukile kubo nakubo bodwa. Injalo imeko yeMS.

UKristen Pfiefer, 46
Ifunyenwe ngo-2009

"Andifuni ukuba abantu bajonge kum bathi," Hayi, nguye one-MS. Akufanele simnike loo msebenzi kuba usenokugula. ’Andifuni abantu abenza izigqibo ngam. Ndiyayazi into endinokuyenza kwaye ndingenako ukuyenza. Akunyanzelekanga ukuba buthathaka. Kwaye ndicinga ukuba yile nto abantu abaninzi abafunyaniswa ukuba bayayibona. Kwaye akufuneki kubenjalo. … Ndikhetha ukuba indomeleze. … Unamandla ukuba ukhetha ukuyithatha. Yinto efana nemfazwe. Kwimfazwe, ungakhetha ukufihla kwaye uthandaze ukuba kungafiki kuwe okanye ungakhetha ukulwa. Ndikhetha ukulwa. Andikholelwa ukuba andinamandla kule meko. Andikholelwa ukuba isitulo esinamavili kwikamva lam. Ndiyakholelwa ukuba ndingasebenza ngokuchasene nayo kwaye ndenza yonke imihla. ”

UJackie Morris, 30
Ifunyenwe: 2011

“Ukubonakala ungaguli akuthethi ukuba awuguli. Ndicinga ukuba ndilungile ngokungabonisi ukuba akukho nto iphosakeleyo nangona ngaphakathi yonke imihla, kunzima ukwenza izinto zemihla ngemihla. Ndicinga ukuba lelona candelo linzima, ngaphandle kokuba unempawu zangaphandle ngokungathi abantu banomkhuhlane okanye ukuba banento emzimbeni ongayibona iphosakeleyo kubo. Ukuba abayiboni abacingi ukuba ngokwenene unento engalunganga kuwe. … Ndiyeke ukuba ibe yinto endityhala ukuba ndenze utshintsho ebomini bam kwaye ndibenethemba kwaye ndenze izinto ekunokwenzeka ukuba ngekhe ndizenze ngaphambili. Kungenxa yokuba nangona ndine-RRMS kwaye ndithatha amayeza kwaye kubonakala kuyinto entle kakhulu, awusoze wazi. Andifuni ukuzisola ngokungazenzi izinto kuba andikwazi ukuzenza ngeli xesha ndinako. ”

UAngela Reinhardt-Mullins, 40
Ifunyenwe: 2001

"Ndicinga ukuba mzuzu wokufumanisa kwam ukuba ndiye 'ewe'. Ekugqibeleni ndiyaqala ukuthi ‘hayi.’… Kufuneka ndibonise ukuba akukho nto imbi ngam kuba abantu bandiphatha ngokungathi akukho nto iphosakeleyo ngam. … Kukho into engalunganga kodwa awukwazi ukuyibona kwaye yeyona nto inzima. "

UMike Menon, 34
Ifunyenwe: 1995

“Kum, kukho umntu ongaphandle owenze okubi kunam owenza ngaphezulu kunam. Ke andinakukwazi ukukhalaza malunga nale nto ndiyenzayo ngoku kuba ndiyazi ukuba ukhona omnye umntu phaya ene-MS embi kakhulu, kodwa basenza izinto ekufuneka bezenzile. Kwaye yeyona ndlela ilungileyo yokujonga kum. Isenokuba mandundu. Abantu bandibonile kokubi kakhulu kwaye abantu bandibonile ndisondele kakhulu kokusemandleni am. Kwiminyaka emibini edlulileyo bendihamba ngesitulo esinamavili kwaye bendingahambi kwaye bendinesiqendu esibi kakhulu. Kwaye iipilisi ezingama-20 kamva, abantu bayandibona kwaye bafana, 'Akukho nto igwenxa kuwe.'… Ndisentlungwini imini yonke, yonke imihla. Ndivele ndayiqhela. … Kukho iintsuku apho ngamanye amaxesha ndingafuni ukuphakama ndifuna nje ukulala phaya, kodwa ndinezinto ekufuneka ndizenzile. Kuya kufuneka ukuba uzityhale kancinci, kwaye kufuneka uqhube kancinci. Ukuba ndihleli apha, iza isiba mandundu kwaye ndiza kuya ndisiba mbi. ”

USharon Alden, oneminyaka engama-53 ubudala
Ifunyenwe: 1996

“I-MS ijongeka ngathi iyinto yonke. Kubonakala njengam. Kubonakala ngathi ngumhlobo kadade wethu owaqala ukubaleka i-marathons emva kokuxilongwa. Kwaye emva kokuyeka ukusebenza ngenxa ye-MS yakhe, kamva wayeqeqeshelwa umdyarho. Ikwangabantu abangakwaziyo ukuhamba ngqo okanye abangakwaziyo ukuhamba. Ndinabahlobo abahamba ngezitulo ezinamavili kwaye bebekule ndlela okwexeshana, ke kukhangeleka ngathi yiyo yonke into. ”

UJeanne Collins, 63
Ifunyenwe: 1999

“Ndicinga ukuba i-MS ikhangeleka njengaye wonke umntu. Wonke umntu odibana naye mhlawumbi unento eyenzekayo ebomini bakhe kwaye awazi nje ngayo. Kwaye ndicinga ukuba i-MS ubukhulu becala sisifo esingabonakaliyo de ungene kwizigaba ezilandelayo. Kungenxa yoko le nto ndingacingi ukuba i-MS ijongeka ngathi iyinto. Unokubona induku. Usenokubona isitulo esinamavili. Kodwa ubukhulu becala ujongeka njengaye wonke umntu. Unokuba buhlungu kakhulu kwaye akukho mntu ukujikelezileyo owaziyo. … Kubalulekile ukuvumela abanye babone ukuba awunikezeli. Akunyanzelekanga ukuba uzisizele kwaye ungaphumi uye ungakonwabeli oko ukonwabelayo ukukwenza. "

UNicole Connelly, 36
Ifunyenwe: 2010

Ngamanye amaxesha uziva ngathi ulibanjwa emzimbeni wakho. Kukungakwazi ukwenza izinto endifuna ukuzenza kunye nokuziva ngathi kukho izinto ekungafanelekanga ukuba ndizenze. Kuya kufuneka ndizikhumbuze ukuba ndingazityhaleli kude kakhulu, ndingazigqithisi kuba ndiye ndihlawule ixabiso. Ndiyazicingela ndicinga ukuba abantu bacinga ukuba ‘ndisisidenge’ okanye abantu bacinga ukuba ‘ndinxilile’ kuba kukho amaxesha athile apho ndingenzi kakuhle njengabanye. Ndingathanda ukuba abantu bazi into engalunganga kodwa ndicinga ukuba yeyona nto inzima kum kukuba abantu bangayiqondi. "

UKatie Meier, 35
Ifunyenwe: 2015

“Abantu banolwazi olungeyonyani malunga nokuba yintoni i-MS. Ngokukhawuleza bacinga ukuba umiselwe ukuba ubekwe kwisitulo esinamavili kwaye lonke olo hlobo lwezinto, kodwa ayisiyiyo kwaphela le nto. [Ngamanye amaxesha] kungakhangeleka ngathi usempilweni ngokupheleleyo kwaye uphila ubomi obuqhelekileyo, kodwa uyasokola nazo zonke iintlobo zeempawu. ”

USabina Diestl, 41, kunye nomyeni wakhe, uDanny McCauley, 53
Ifunyenwe: 1988

“Andikwazi kushukuma konke konke. Andosuleli. Ayibulali. … Usenokonwaba nge-MS. ” - USabina

"Ndadibana naye xa wayeneminyaka engama-23 kwaye ngelo xesha wayengahambi, kodwa sathandana nantoni na. Ekuqaleni ndizamile ukusebenza kwaye ndibe ngumongi kodwa kwaba ngumsebenzi osisigxina. Ukuxhasa umntu onesifo esiqhubayo kuyabutshintsha ubomi. ” -UDanny