Lupus – teorija žlica

Moja najbolja prijateljica i ja bile smo u restoranu i razgovarale. Kao i obično, bilo je vrlo kasno i jele smo krumpiriće s umakom. Kao sve djevojke našeg godišta, provele smo mnogo vremena u restoranu dok smo bile na fakultetu, a većinu vremena provele smo u razgovoru o dečkima, glazbi ili trivijalnim stvarima, koji su se tada činile vrlo važnima. Nikada nismo ozbiljno shvaćale stvari i većinu vremena smo se smijale.

Dok sam otišla uzimati svoj lijek za vrijeme obroka, kao što sam to činila uvijek, prijateljica me je gledala neugodnim pogledom, umjesto da nastavimo razgovor. Zatim me pitala, nakon duže stanke, kako se osjećam kao osoba koja je bolesna i ima Lupus. Bila sam šokirana, ne samo zato što je postavila nepotrebno pitanje, već i zato što sam pretpostavljala da zna sve što je trebala znati o Lupusu. Išla je sa mnom liječniku, vidjela me je kako hodam sa štapom i kako padam u kupaonici. Vidjela me je kako plačem, što još ima znati?

Počela sam brbljatio tabletama i bolovima, ali ona je nastavila sa ispitivanjem i nije se činila zadovoljna mojim odgovorima. Bila sam pomalo iznenađena, jer je bila moja cimerica na fakultetu i prijateljica godinama. Mislila sam da je već poznavala medicinsku definiciju Lupusa. Zatim me pogledala pogledom s kojim se svaka bolesna osoba suoči i dobro joj je poznat, lice čiste znatiželje o nečemu što nitko ne može razumjeti. Pitala je kako se to osjećam, ne fizički, već kako se osjećam biti bolesna osoba.

Dok sam se pokušavala pribrati, pogledavala sam oko stola tražeći pomoć ili barem da nekako nađem vremena za razmišljanje. Pokušavala sam pronaći prave riječi. Kako odgovoriti na pitanje na koje nisam mogla odgovoriti niti samoj sebi? Kako mogu objasniti svaku pojedinost svakoga dana i opisati osjećaje bolesne osobe koja kroz sve to prolazi. Mogla sam samo odustati od teme, okrenuti na šalu kao i obično i promijeniti temu, ali se sjećam da sam pomislila da, ako joj ne pokušam objasniti ovo, kako onda mogu očekivati od nje da to ikad razumije. Ako to ne mogu objasniti mojoj najboljoj prijateljici, kako bih mogla objasniti svoj svijet nekome drugome? Ipak, morala sam barem pokušati.

U tom trenutku rođena je teorija žlice. Brzo sam uhvatila svaku žlicu na stolu, čak sam zgrabila žlice s drugih stolova. Pogledala sam ju u oči i rekla: “Evo, ti imaš Lupus”. Pogledala me pomalo zbunjeno, kao što bi to učinio svatko drugi kad bih mu pružila buket žlica. Hladne metalne žličice zveckale su u mojoj ruci dok sam ih grupirala i gurnula joj u ruke.

Objasnila sam da je razlika između biti bolestan i biti zdrav u donošenju odluka ili u svjesnom razmišljanju o onim stvarima o kojima ostatak svijeta ne mora. Zdravi ljudi imaju luksuz života bez izbora, dar koji većina ljudi smatra zdravo za gotovo.

Većina ljudi započinje dan s neograničenim brojem mogućnosti i energijom da učine sve što žele, posebno mladi. U većini slučajeva, ne moraju se brinuti o posljedicama svojih postupaka. Dakle, za moje objašnjenje, koristila sam žlice da prenesem ovu poruku. Željela sam da nešto zaista drži u rukama, tako da joj onda mogu to oduzeti, jer većina ljudi koji se razbole osjećaju “gubitak” života koji su nekoć znali. Kad bih ja imala kontrolu nad uklanjanjem žlica, tada bi ona znala kako se osjeća osoba nad kojom netko ili nešto drugo, u ovom slučaju Lupus, ima kontrolu.

Zgrabila je žlice s uzbuđenjem. Nije razumjela što radim, ali ona je uvijek raspoložena za zabavu pa je pomislila da opet bacam neku šalu kao što obično činim kad govorim o osjetljivim temama. Nije uopće znala koliko ću postati ozbiljna?

Natjerala sam ju da prebroji žlice. Pitala je zašto, pa sam joj objasnila da, kada si zdrava, očekuješ da ćeš imati neprekidnu opskrbu “žlicama”. Ali, sada kada trebaš planirati svoj dan, moraš točno znati s koliko “žlica” počinješ. To ne jamči da nećeš izgubiti neke na putu, ali barem pomaže da znaš gdje počinješ. Izbrojala je 12 žlica. Nasmijala se i rekla da želi više. Rekla sam joj ne, i odmah sam znala da će ova mala igra upaliti, jer je izgledala tako razočarano, a još nismo ni počeli. Osobno, željela sam imati više “žlica” i već godinama nisam pronašla način kako to ostvariti, zašto bi ona? Također sam joj rekla da uvijek bude svjesna koliko ih ima i da ih nikad ne pusti0 jer nikada ne može zaboraviti da ima Lupus. Natjerala sam ju da zapisuje zadatke njezinog dana, uključujući i najjednostavnije. Kad je ona počela zapisivati dnevne zadatke ili samo zabavne stvari za napraviti, objasnila sam kako će ju svaka aktivnost koštati jednu žlicu. Tim slijedom, kada je za svoj prvi zadatak izabrala pripremu za posao, odmah sam joj oduzela jednu žlicu.

Rekla sam: “Ne, ne možeš samo ustati, moraš otvoriti oči i onda shvatiti da kasniš. Nisi se naspavala dobro noć prije. Moraš puzati iz kreveta, a onda si moraš napraviti nešto za jesti prije nego što učiniš bilo što drugo, jer ako to ne napraviš, ne možeš uzimati lijek, a ako ne uzmeš lijek, možeš mi dati sve svoje žlice za danas i za sutra također. “Brzo sam joj uzela žlicu i onda je shvatila da se još nije ni odjenula. Tuširanje ju je koštalo žlicu, samo za pranje kose i brijanje nogu. Dosezanje visoko i nisko tako rano ujutro moglo bi ju koštati više od jedne žlice, ali mislila sam da ću joj dati popust. Nisam ju htjela odmah uplašiti. Oblačenje ju je koštalo još jedne žlice. Zaustavila sam ju i razbila svaki zadatak na dijelove kako bih joj pokazala kako treba razmotriti svaki mali detalj. Ne možeš jednostavno baciti odjeću na sebe kada si bolesna. Objasnila sam joj da moram vidjeti kakvu odjeću mogu fizički obući, ako me ruke bole taj dan onda odjeća sa gumbimane dolazi u obzir. Ako imam modrice taj dan, moram nositi duge rukave i ako imam groznicu, trebam pulover da ostanem topla i tako dalje. Ako mi ispada kosa, trebam provesti više vremena da izgledam normalno, a onda trebaš računati na još 5 minuta jer se osjećaš loše zbog toga što ti je trebalo 2 sata da to sve to učiniš.

Mislim da je počela shvaćati kad teoretski nije ni krenula na posao, a ostala je na 6 žlica. Tada sam joj objasnila da mora mudro odabrati zadatke ostatak dana, jer jednom kad “žlice” nestanu onda ih više nema. Ponekad možeš posuditi sutrašnje “žlice”, ali zamisli samo kako će sutra biti naporno i teško s manje “žlica”. Također sam joj trebala objasniti da osoba koja je bolesna uvijek živi sa strepnjom da sutra može biti taj dan kada dolazi prehlada ili infekcija ili bilo kojadruga stvar koja bi mogla biti vrlo opasna. Dakle, ne želiš ostati sa malim brojem „žlica“, jer nikad ne znaš kada će ti zaista trebati. Nisam je željela deprimirati, ali morala sam biti realna, a nažalost biti pripremljen za najgore je dio svakodnevnice za mene.

Prošli smo kroz ostatak dana, a polako je počela razumjeti da bi je preskakanje ručka koštalo žlicu, kao i stajanje u vlaku ili čak i ako previše dugo tipka na računalu. Bila je prisiljena birati između opcija i razmišljati o nekim stvarima na drugačiji način. Hipotetski, morala je odlučiti da ne rješava zadatke kako bi mogla večerati.

Kad smo došli do kraja njezinog hipotetskog dana, rekla je da je gladna. Sažela sam joj da mora jesti večeru, ali joj je ostala samo jedna žlica. Ako kuha, ne će imati dovoljno energije za čišćenje lonaca. Ako izađe van na večeru, mogla bi biti preumorna da se sigurno odveze kući. Tada sam joj također objasnila, da nisam željela dodati ovo u igru, ali njoj je u tom trenutku toliko loše, da kuhanje ne dolazi u obzir. Dakle, odlučila je napraviti juhu, bilo je lako. Rekla sam da je samo 7 sati, imaš ostatak večeri slobodno, ali možda završiš s jednom žlicom, tako da možeš raditi nešto zabavno, očistiti stan ili obaviti kućanske poslove, ali ne možeš učiniti sve.

Rijetko ju vidim emocionalnu, pa kad sam ju vidjela uzrujanu, znala sam da polako shvaća. Nisam htjela da moja prijateljica bude uzrujana, ali istodobno sam bila sretna što me konačno netko malo razumije. Imala je suze u očima i tiho je upitala: “Christine, kako to radiš? Doista radiš sve to svaki dan? “. Objasnila sam joj da su neki dani bili gori od drugih, nekim danima imam više žlica, ali nikad ne mogu pobjeći i ne mogu to zaboraviti, uvijek moram razmišljati o tome. Dala sam joj žlicu koju sam držala u rezervi. Jednostavno sam rekla: “Naučila sam živjeti život s dodatnom žlicom u džepu, u rezervi. Moraš uvijek biti spremna “

Teško je, najteža stvar koju sam ikada morala naučiti jest usporiti i ne činiti apsolutno sve. Borim se do ovog dana. Mrzim se osjećati izostavljeno, morala sam odlučiti ostati kod kuće, ili ne učiniti neke stvari koje želim. Htjela sam da ona osjeti tu frustraciju. Htjela sam da razumije, da sve što svatko drugi čini je tako lako, ali za mene je stotinu manjih poslova u jednom. Trebam razmišljati o vremenu, mojoj temperaturi tog dana i planovima cijelog dana prije nego što mogu napasti bilo koju određenu stvar. Drugi ljudi jednostavno mogu raditi stvari, ali ja moram napadati i napraviti plan poput strategije rata. U tom je životnom stilu, razlika između bolesne i zdrave osobe. To je lijepa sposobnost da nemam potrebe razmišljati, nego jednostavno to učiniš. Nedostaje mi sloboda. Nedostaje mi da nikada ne moram računati “žlice”.

Nakon što smo emocionalni i razgovarali još malo o tome, osjetila sam kako je tužna. Možda je napokon shvatila. Možda je shvatila da nikada nije mogla istinski i iskreno reći da me razumije. Ali barem se sada više neće toliko žaliti kad ne mogu izaći na večeru ili kad nikad ne dolazim do nje nego ona uvijek mora voziti do mene. Dala sam joj zagrljaj kad smo izašli iz restorana. Imala sam jednu žlicu u ruci i rekla sam: “Ne brini. Vidim to kao blagoslov. Bila sam prisiljena razmišljati o svemu što radim. Znaš li koliko žlica ljudi svakodnevno bespotrebno troše? Ja nemam mjesta za izgubljeno vrijeme ili izgubljene “žlice” i odlučila sam provesti ovo vrijeme s tobom. “

Od te noći, koristila sam teoriju žlica kako bih objasnila svoj život mnogim ljudima. Zapravo, moja obitelj i prijatelji cijelo vrijeme se koriste žlicama pri objašnjavanju. To je kodna riječ za ono što mogu i ne mogu učiniti. Jednom kad ljudi razumiju teoriju žlice, čini se da me bolje razumiju, ali mislim da i oni žive svoj život malo drugačije. Mislim da se s tom teorijom žlica mogu koristiti svi ljudi koji se nose s nekim oblikom invaliditeta ili bolesti, a ne samo oni koji boluju od Lupusa. Nadam se da oni ne uzimaju stvari zdravo za gotovo i općenito svoj život. Dajem komad sebe, u svakom smislu te riječi, kad činim bilo što. Postala je unutarnja šala. Postala sam poznata kad sam rekla ljudima da se trebaju osjećati posebno kada provodim vrijeme s njima, jer imaju jednu od mojih “žlica”.

Christine Miserandino

2018-03-27T12:38:05+00:00

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