Rouwende de persoon die ik was voor chronische ziekte

Als ik aan het einde van mijn bed zit, bonkt het me opeens als een ton bakstenen over de borst. Mijn lip trilt, ik kan de bult in mijn keel voelen en ik moet mezelf stoppen voordat de tranen stromen. Ik worstel om mijn sokken aan te trekken en al snel word ik eraan herinnerd dat mijn leven niet is en nooit zal zijn wat het was. Het kostte me een tijdje om het verlies van mijn vroegere zelf te betreuren, en nog langer om te beseffen dat ik het deed. Rouwende.

En net als verdriet, maakt het niet uit hoeveel tijd je helpt genezen, je bent nooit echt verdriet gedaan. Ik heb dierbaren in de loop der jaren verloren, mensen heel speciaal voor mij, en ik denk er elke dag aan terug. Nu de jaren voorbij zijn, doet het niet zoveel pijn om ze te onthouden, na te denken over hen en de mooie herinneringen die ik met hen heb gedeeld. Toch ben ik soms overrompeld. Ik zal de favoriete snoepjes van mijn nana in de winkel zien en ze gaan ophalen en dan lijkt het me als een bliksemschicht. Mijn nana is hier niet meer. Dat is het moment waarop het het meest pijn doet – als je slechts een fractie van een seconde dat verlies vergeet.

Het is een soortgelijk proces met mijn toestand. Nu ik er bijna tien jaar mee bezig ben, is het gemakkelijker geworden om mijn beperkingen te accepteren, maar af en toe verlang ik naar wat ik had. Ik vergeet dat ik beperkingen heb en zodra ik me de dingen herinner die ik niet kan doen … Dat is wanneer het stuk mijn keel raakt en mijn ogen water geven, want het is die hele echte en ruwe pijn helemaal opnieuw. Het is de eerste keer dat we het nieuws horen, het is de pijn en de verwarring en het is hartverscheurend.

Het is een ander soort verdriet. Het voelt bijna als een zelfzuchtige, maar het is er en ik denk dat de meeste mensen met een chronische ziekte ermee worden geconfronteerd. We doorlopen de stadia van verdriet – ontkenning, woede, onderhandelen, depressie en acceptatie – maar het is meestal een oneindige cyclus, net zoals ziekte is.

Alle stadia komen snel achter elkaar: je ontkent je ziekte, je drijft jezelf naar je absolute limiet, en dan voel je zo’n woede als je worstelt om de anderen bij te houden of eenvoudige taken uit te voeren. Daarna volgt het onderhandelen: als ik net gezonder ben, meer heb geoefend, minder onzin eet, meer mediteerde …. Maar wat u ook doet, uw ziekten zullen niet verdwijnen. Het besef hiervan brengt de depressie teweeg, voelt niet goed genoeg, voelt zich nutteloos en hulpeloos tot het uiteindelijk en gelukkig maak je het weer helemaal rond. Elke keer als ik de cyclus doorloop, bereik ik sneller acceptatie en duurt het langer. Dit wil niet zeggen dat ik blij ben met mijn ziekte, maar ik vind het goed. Het is nu een deel van mij en, voor het grootste deel, accepteer ik dat – op dezelfde manier dat ik, terwijl ik mijn grootmoeder met heel mijn hart mis, met haar verlies ben gekomen.

Als ik aan mijn grootmoeder denk en hoeveel ik haar mis, denk ik ook aan hoe blij ik was om haar te kennen, om van haar gehouden te zijn en prachtige herinneringen te hebben die niemand me kan afnemen. Als ik denk aan mijn reumatoïde artritis, moet ik ook de positieve kanten ervan zien. Ik heb meer dan ik verloren heb. Mijn ziekte heeft me veranderd, maar het heeft me niet verminderd. Het heeft me meer empathisch voor anderen gemaakt, me sterker gemaakt, me tot een vechter gemaakt en vooral, het heeft me laten zien hoeveel mijn familie en vrienden van me houden.

Soms zal ik mijn oude lichaam bedroeven en bedroefd zijn over het normale, pijnvrije leven dat ik had kunnen hebben. Maar voor het grootste deel zal ik er zijn om het meeste te halen uit wat ik heb – wat, erover nadenkend, meer dan genoeg is.

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