1000 portreta

Jean Shenk, (Džin Šenk, 1976) – People with Pre-Existing Conditions are Terrified of the Future/Ljudi sa postojećim bolestima plaše se budućnosti

27 јул , 2017  

In TIME article signed by Alicia Adamczyk on July 26, 2017, journalist is speaking about different portraits of the People with Pre-Existing Conditions. For me using the portraits of the people with Pre-Existing Conditions are crucial from the point of taking attention of public opinion to the point of the fighting to their rights. Just excellent example how portrait could be important. Although I did not do this picture with the Huawei P10 mobile phone, I decided to include as many pictures of other authors who are showing the importance of portraits in the personality and time they lived in.

“In a two-bedroom apartment in Bethlehem, Pennsylvania, 41-year-old Jean Shenk flips through photos of her travels to Prague, Vienna, and Delhi. She shows off souvenirs she picked up in the Netherlands and the Dominican Republic, as well as places closer to home, like New Orleans

Moments later, she brings out four keepsakes from a much different journey: three pacemakers and a piece of Dacron, a polyester fiber that her surgeon used to strengthen her aorta in multiple heart surgeries.

Shenk was diagnosed at age 8 with Marfan Syndrome, a genetic disorder that compromises the body’s connective tissue, including the eyes, blood vessels, and bones. It affects everyone differently, but in Shenk’s case, the aorta is enlarged to a life-threatening degree. As she described it, she is always at risk of her “heart exploding.”

So far, Shenk has endured two open-heart surgeries and seven other operations, ranging from aortic grafts to pacemaker insertions. Her latest complication, in October 2016, has left her unable to work or travel the world any longer. Even vacuuming her apartment is too physically demanding; the photos and statues decorating her home are bittersweet reminders of a different life.

Between the surgeries, visits to specialists, and prescriptions, Shenk estimates her health insurer has spent well over a million dollars on care related to her condition over the years. She has a six-inch stack of medical bills from the past year alone, including a $55,000 helicopter ride after she was transferred to the hospital of the University of Pennsylvania for emergency surgery. She likens managing her illness to a full-time job, from dealing with insurers and billing agencies, to scheduling appointments, to keeping up-to-date on the latest research. She currently has COBRA coverage through her old employer, but when that runs out she will have to shop on the individual market”.

U članku TIME potpisanog od strane Alicije Adamščik od 26. jula 2017. godine, novinarka govori o različitim portretima ljudi sa prethodnim zdravstvenim stanjima. Za mene je korišćenje portreta ljudi sa prethodnim zdravstvenim stanjima, od presudnog značaja sa stanovišta pažnje javnog mnjenja do potrebe borbe za njihova prava. Ovo je odličan primer koliko portret može biti važan. Iako ja nisam uradio ovu sliku pomoću Huawei P 10 mobilnog telefona odlučio sam da tokom pisanja ubacim što više slika drugih autora koje pokazuju značaj portreta u sagledavanju ličnosti i vremena u kome su živeli.

„U dvosobnom stanu u Betlehemu u Pensilvaniji, 41-godišnja Džin Šenk pokazuje fotografije svojih putovanja u Prag, Beč i Delhi. Pokazuje i suvenire koje je kupila u Holandiji i Dominikanskoj Republici, kao i u mesta bliže kući, poput Nju Orleansa.

Trenutak kasnije, ona donosi četiri predmeta sa mnogo drugačijih putovanja: tri pejsmejkera ​​i komad dakrona, poliesterskog vlakna koje je njen hirurg koristio za jačanje njene aorte tokom više operacija srca.

Kod Šenk je dijagnostifikovan u 8 godini sa Marfanov sindromom, genetski poremećajem koji menja vezivno tkivo tela, uključujući oči, krvne sudove i kosti. To utiče na sve obolele različite, ali u njenom slučaju, aorta se povećava do stepena koji ugrožava život. Ona to opisuje tako da je uvek u opasnosti od „eksplozije srca“.

Do sada je Šenk izdržala dve operacije  na otvorenom srcu i još sedam operacija, od aortnih graftova do ugrađivanja pejsmejkera. Njena poslednja komplikacija, u oktobru 2016. godine, ostavila je nesposobnom da radi ili putuje. Čak i usisavanje stana je previše fizički zahtevno za nju. Fotografije i statue koji joj ukrašavaju svoj dom su gorko-slatki podsetnici drugačijeg života.

Između operacija, posete specijalistima, Šenk procenjuje da je njeno zdravstveno osiguranje potrošilo preko milion dolara za brigu o njenom stanju tokom godina. Ona ima 15 cm debelu fasciklu sa medicinskim računima iz prošle godine, uključujući i vožnju helikopterom od 55.000 dolara nakon što je prebačena u bolnicu Univerziteta u Pensilvaniji zbog hitne operacije. Ona je uspela da uravnoteži svoju bolest sa punim radnim vremenom, posao sa osiguranjem i agencijama za naplatu sa zakazivanjem sastanaka i praćenjem najnovijih istraživanja. Trenutno ima pokriće Kobra osiguranja preko svog starog poslodavca, ali kada to potroši,  moraće da snalazi sa pojedinačnim osiguranjima.“

 


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