You may not know this, but you are celebrating an anniversary with me. I'm not married, but one year ago today, I woke up from a month-long coma, following a double lung transplant. Crazy, I know. Insane. Thank you.
Možda ne znate, ali vi slavite godišnjicu sa mnom. Nisam udata, ali tačno pre godinu dana, probudila sam se iz jednomesečne kome, nakon transplantacije oba plućna krila. Ludo, znam. Neviđeno. Hvala vam.
Six years before that, I was starting my career as an opera singer in Europe, when I was diagnosed with idiopathic pulmonary hypertension -- also known as PH. It happens when there's a thickening in the pulmonary veins, making the right side of the heart work overtime, and causing what I call the reverse-Grinch effect. My heart was three-and-a-half sizes too big. Physical activity becomes very difficult for people with this condition, and usually after two to five years, you die. I went to see this specialist, and she was top-of-the-field and told me I had to stop singing. She said, "Those high notes are going to kill you." While she didn't have any medical evidence to back up her claim that there was a relationship between operatic arias and pulmonary hypertension, she was absolutely emphatic I was singing my own obituary. I was very limited by my condition, physically. But I was not limited when I sang, and as air came up from my lungs, through my vocal cords and passed my lips as sound, it was the closest thing I had ever come to transcendence. And just because of someone's hunch, I wasn't going to give it up.
Šest godina pre toga, započinjala sam karijeru operske pevačice u Evropi, kada mi je dijagnostikovana idiopatska plućna hipertenzija - poznata kao PH. Do toga dolazi kada se javi zadebljanje na plućnim venama, koje čini da desna strana srca preterano radi, što dovodi do, kako ja to zovem, obrnutog Grinč efekta. Moje srce je bilo tri ipo puta veće. Fizička aktivnost postaje vrlo naporna za osobe sa ovim stanjem. I obično posle dve do pet godina, umrete. Otišla sam kod specijaliste, najboljeg u struci, i rekla mi je da moram prestati da pevam. Rekla je: "Ti visoki tonovi će te ubiti." Iako nije imala medicinski dokaz da podupre svoju tvrdju da postoji veza između operskih arija i plućne hipertenzije, bila je u potpunosti sigurna da pevam sebi opelo. Bila sam fizički ograničena zbog svog stanja. Ali ograničenja nije bilo dok sam pevala. I dok se vazduh dizao u mojim plućima, do mojih glasnih žica, prelazeći moje usne kao zvuk, to je momenat kada sam bila najbliže transcendenciji. I nisam htela da odustanem samo zbog nečije sumnje.
Thankfully, I met Reda Girgis, who is dry as toast, but he and his team at Johns Hopkins didn't just want me to survive, they wanted me to live a meaningful life. This meant making trade-offs. I come from Colorado. It's a mile high, and I grew up there with my 10 brothers and sisters and two adoring parents. Well, the altitude exacerbated my symptoms. So I moved to Baltimore to be near my doctors and enrolled in a conservatory nearby. I couldn't walk as much as I used to, so I opted for five-inch heels. And I gave up salt, I went vegan, and I started taking huge doses of sildenafil, also known as Viagra.
Srećom, upoznala sam Rid Girgisa, mršavog kao grana, koji sa svojim timom u Džons Hopkinsu nije želeo da "samo" preživim. Hteli su da živim smislenim životom. To je podrazumevalo pravljenje kompromisa. Ja sam iz Kolorada. Na visini od oko 1.5 km, odrasla sam sa svoje desetoro braće i sestara i dvoje obožavanih roditelja. Pa, visina je pogoršala moje simptome. Tako sam se preselila u Baltimor, da bih bila blizu svojih doktora i uključila se u obližnji konzervatorijum. Nisam mogla da šetam koliko i ranije, pa sam se opredelila za štikle od 13 cm. I odrekla sam se soli, postala vegan i počela da uzimam ogromne doze - sildenafia - poznatog i kao vijagra.
(Laughter)
( smeh )
My father and my grandfather were always looking for the newest thing in alternative or traditional therapies for PH, but after six months, I couldn't walk up a small hill. I couldn't climb a flight of stairs. I could barely stand up without feeling like I was going to faint. I had a heart catheterization, where they measure this internal arterial pulmonary pressure, which is supposed to be between 15 and 20. Mine was 146. I like to do things big, and it meant one thing: there is a big gun treatment for pulmonary hypertension called Flolan, and it's not just a drug; it's a way of life. Doctors insert a catheter into your chest, which is attached to a pump that weighs about four-and-a-half pounds. Every day, 24 hours, that pump is at your side, administering medicine directly to your heart, and it's not a particularly preferable medicine in many senses. This is a list of the side effects: if you eat too much salt, like a peanut butter and jelly sandwich, you'll probably end up in the ICU. If you go through a metal detector, you'll probably die. If you get a bubble in your medicine -- because you have to mix it every morning -- and it stays in there, you probably die. If you run out of medicine, you definitely die.
Moj otac i deda su stalno tražili najnovije stvari iz oblasti alternativne ili klasične terapije za PH, ali posle šest meseci, nisam mogla da se popnem uz malo brdo, ili stepenice, jedva sam stajala bez osećaja da ću se onesvestiti. Imala sam srčani kateter, putem kojeg mere unutračnji arterijski plućni pritisak, koji bi trebalo da se kreće između 15 i 20. Moj je bio 146. Volim da radim stvari naveliko. A to je značilo jednu stvar: postoji tretman velikim pištoljem za plućnu hipertenziju zvan "Flolan". I to nije samo lek, to je način života. Doktori ugrade kateter u vaš grudni koš, koji je povezan sa pumpom teškom oko 2 kilograma. Svakog dana, 24 sata, pumpa stoji pored vas, ubrizgavajući lek direktno u vaše srce. I to nije posebno popularan lek zbog mnogo razloga. Ovo je lista sporednih efekata: ako pojedete previše soli, recimo sendvič sa puterom od kikirikija i džemom, verovatno ćete završiti na intenzivnoj nezi. Ako prođete kroz detektor metala, verovanto ćete umreti. Ako se u vašem leku stvori mehur vazduha - jer lek morate da ga zamešate svakog jutra - i ako tu ostane, verovatno ćete umreti. Ako ostanete bez leka, definitivno umirete.
No one wants to go on Flolan. But when I needed it, it was a godsend. Within a few days, I could walk again. Within a few weeks, I was performing, and in a few months, I debuted at the Kennedy Center. The pump was a little bit problematic when performing, so I'd attach it to my inner thigh with the help of the girdle and an ACE bandage. Literally hundreds of elevator rides were spent with me alone stuffing the pump into my Spanx, hoping the doors wouldn't open unexpectedly. And the tubing coming out of my chest was a nightmare for costume designers. I graduated from graduate school in 2006, and I got a fellowship to go back to Europe. A few days after arriving, I met this wonderful, old conductor who started casting me in all of these roles. And before long, I was commuting between Budapest, Milan and Florence. Though I was attached to this ugly, unwanted, high-maintenance, mechanical pet, my life was kind of like the happy part in an opera -- very complicated, but in a good way.
Niko ne želi da uzima Flolan. Ali kada mi je bio potreban, sam bog ga je poslao. Za par dana, ponovo sam hodala. Za par nedelja sam nastupala. I za par meseci, debitovala sam u Kenedi Centru. Pumpa je smetala prilikom izvođenja, pa bih je zakačila sa unutrašnje strane butine uz pomoć pojasa i elastičnog zavoja. Stotine vožnji liftom je bukvalno potrošeno samo na guranje pumpe u moj donji veš, nadajući se da se vrate neće iznenada otvoriti. A cev koja je izlazila iz mojih grudi bila je noćna mora za dizajnere kostima. Diplomirala sam 2006. i dobila sam stipendiju za povratak u Evropu. Par dana nakon dolaska srela sam jednog divnog starog dirigenta koji je počeo da mi daje mnoge uloge. I ubrzo nakon toga, putovala sam između Budimpešte, Milana i Firence. Iako sam bila vezana za to ružno, neželjeno, zahtevno, mehaničko ljubimče, moj život je bio neka vrsta srećnog dela opere - vrlo komplikovanog, ali na dobar način.
Then in February of 2008, my grandfather passed away. He was a big figure in all of our lives, and we loved him very much. It certainly didn't prepare me for what came next. Seven weeks later, I got a call from my family. My father had been in a catastrophic car accident, and he died. At 24, my death would have been entirely expected. But his -- well, the only way I can articulate how it felt was that it precipitated my medical decline. Against my doctors' and family's wishes, I needed to go back for the funeral. I had to say goodbye in some way, shape or form. But soon I was showing signs of right-heart failure, and I had to return to sea level, doing so knowing that I probably would never see my home again.
Onda u februaru 2008., moj otac je preminuo. On je bio velika figura u našim životima, i mnogo smo ga voleli. To me sigurno nije pripremilo za ono što se sledeće dogodilo. Sedam nedelja kasnije, dobila sam poziv od porodice. Moj otac je imao strašnu saobraćajnu nesreću i umro je. Sa 24 godine, moja smrt bi bila potpuno očekivana. Ali njegova - pa jedini način da opišem kako sam se osećala jeste da je to ubrzalo moju bolest. Uprkos željama mojih doktora i moje porodice, morala sam da odem na sahranu. Morala sam da se oprostim na neki način, bilo koji. Ali ubrzo sam počela da pokazujem znake desne srčane insuficijencije i morala sam da se vratim na nivo mora, znajući da tako verovatno nikada više neću videti svoj dom.
I canceled most of my engagements that summer, but I had one left in Tel Aviv, so I went. After one performance, I could barely drag myself from the stage to the taxicab. I sat down and felt the blood rush down from my face, and in the heat of the desert, I was freezing cold. My fingers started turning blue, and I was like, "What is going on here?" I heard my heart's valves snapping open and closed. The cab stopped, and I pulled my body from it feeling each ounce of weight as I walked to the elevator. I fell through my apartment door and crawled to the bathroom where I found my problem: I had forgotten to mix in the most important part of my medicine. I was dying, and if I didn't mix that stuff up fast, I would never leave that apartment alive. I started mixing, and I felt like everything was going to fall out through one hole or another, but I just kept on going. Finally, with the last bottle in and the last bubble out, I attached the pump to the tubing and lay there hoping it would kick in soon enough. If it didn't, I'd probably see my father sooner than I anticipated. Thankfully, in a few minutes, I saw the signature hive-like rash appear on my legs, which is a side effect of the medication, and I knew I'd be okay.
Otkazala sam većinu svojih aranžmana tog leta, ali sam otišla na onaj u Tel Avivu. Nakon jednog izvođenja, jedva sam se dovukla od bine do taksija. Sela sam i osetila kako mi se krv sjurila niz lice. I u srcu pustinje, smrzavala sam se. Moji prsti su poplaveli, i mislila sam: "Šta se dešava?" Čula sam zaliske svog srca kako se otvaraju i zatvaraju. Taksi se zaustavio, izvukla sam svoje telo iz njega osećajući svaki gram svoje težine dok sam hodala ka liftu. Pala sam kroz vrata svog stana i otpuzala do kupatila gde sam otkrila u čemu je problem: zaboravila sam da umešam najvažniji deo svog leka. Umirala sam. I da nisam brzo pomešala svoj lek, nikada ne bih živa izašla iz svog stana. Počela sam da mešam i osećala sam da će sve da ispadne kroz jednu ili drugu rupu, ali sam samo nastavila. Konačno, kako sam pomešala poslednju boci i izbacila poslednji mehur vazduha povezala sam pumpu sa cevi i legla, u nadi da će me udariti što pre. Da nije, verovatno bih videla svog oca brže nego što sam očekivala. Srećom, za par minuta, Videla sam kako se osip poput košnice pojavljuje na mojim nogama, što je nus pojava uzimanja leka, i znala sam da ću biti u redu.
We're not big on fear in my family, but I was scared. I went back to the States, anticipating I'd return to Europe, but the heart catheterization showed that I wasn't going anywhere further that a flight-for-life from Johns Hopkins Hospital. I performed here and there, but as my condition deteriorated, so did my voice. My doctor wanted me to get on the list for a lung transplant. I didn't. I had two friends who had recently died months after having very challenging surgeries. I knew another young man, though, who had PH who died while waiting for one. I wanted to live. I thought stem cells were a good option, but they hadn't developed to a point where I could take advantage of them yet. I officially took a break from singing, and I went to the Cleveland Clinic to be reevaluated for the third time in five years, for transplant. I was sitting there kind of unenthusiastically talking with the head transplant surgeon, and I asked him if I needed a transplant, what I could do to prepare. He said, "Be happy. A happy patient is a healthy patient." It was like in one verbal swoop he had channeled my thoughts on life and medicine and Confucius. I still didn't want a transplant, but in a month, I was back in the hospital with some severely edemic kankles -- very attractive. And it was right-heart failure.
U mojoj porodici nismo nešto posebno plašljivi, ali bila sam uplašena. Vratila sam se u Sjedinjene Države, nadajući se da ću se vratiti u Evropu, ali srčana kateterizacija je pokazivala da neću ići dalje od leta za život u Džons Hopkins bolnicu. Nastupala sam ponegde, ali kako se moje stanje pogoršavalo tako je i moj glas. Moj doktor je hteo da budem na listi za transplantaciju pluća; ja nisam. Imala sam dvoje prijatelja koji su nedavno umrli, nekoliko meseci nakon vrlo izazovnih operacija. Poznavala sam još jednog mladića, koji je imao PH i umro je čekajući nova pluća. Ja sam htela da živim. Mislila sam da su matične ćelije dobar izbor, ali one nisu bili razvijene do tačke u kojoj bih imala koristi od njih. Zvanično sam pauzirala pevanje i otišla do Klivlend klinike da bi me po treći put za pet godina procenili za transplantaciju. Sedela sam tamo, na neki način bez entuzijazma razgovarala sam sa glavnim hirurgom, i pitala sam ga kako mogu da se pripremim ukoliko mi transplantacija bude potrebna. Rekao je: "Budi srećna. Srećan pacijent je zdrav pacijent." Kao da je u jednom verbalnom napadu usmerio moje misli o životu i lečenju i Konfučiju. I dalje nisam želela transplantaciju, ali za mesec dana, vratila sam se u bolnicu sa vrlo ozbiljnim [nejasno] oteklinama - vrlo privlačno. Bila je u pitanju desna srčana insuficijencija.
I finally decided it was time to take my doctor's advice. It was time for me to go to Cleveland and to start the agonizing wait for a match. But the next morning, while I was still in the hospital, I got a telephone call. It was my doctor in Cleveland, Marie Budev. And they had lungs. It was a match. They were from Texas. And everybody was really happy for me, but me. Because, despite their problems, I had spent my whole life training my lungs, and I was not particularly enthusiastic about giving them up. I flew to Cleveland, and my family rushed there in hopes that they would meet me and say what we knew might be our final goodbye. But organs don't wait, and I went into surgery before I could say goodbye. The last thing I remember was lying on a white blanket, telling my surgeon that I needed to see my mother again, and to please try and save my voice. I fell into this apocalyptic dream world.
Odlučila sam da je konačno vreme da prihvatim savet svoje doktorke. Bilo je vreme da odem u Klivlend i da u agoniji počnem da čekam odgovarajuća pluća. Ali sledećeg jutra, dok sam još bila u bolnici, dobila sam telefonski poziv od moje doktorke iz Klivlenda, Mari Budev. Imali su pluća. Odgovarala su. Bila su iz Teksasa. I svi su bili srećni zbog mene, osim mene. Jer, uprkos njihovim problemima, provela sam čitav život trenirajući svoja pluća, i nisam bila naročito uzbuđena što ću morati da ih se odreknem. Odletela sam u Klivlend. Moja porodica je odjurila tamo sa nadom da će me sresti i reći ono što smo znali da može biti naš oproštaj. Ali organi ne čekaju. I otišla sam na operaciju pre nego što sam se oprostila. Poslednja stvar koje se sećam je kako ležim na belom ćebetu, i govorim svom hirurgu da moram opet videti svoju majku i da proba da sačuva moj glas. Pala sam u apokaliptične snove.
During the thirteen-and-a-half-hour surgery, I flatlined twice, 40 quarts of blood were infused into my body. And in my surgeon's 20-year career, he said it was among the most difficult transplants that he's ever performed. They left my chest open for two weeks. You could see my over-sized heart beating inside of it. I was on a dozen machines that were keeping me alive. An infection ravaged my skin. I had hoped my voice would be saved, but my doctors knew that the breathing tubes going down my throat might have already destroyed it. If they stayed in, there was no way I would ever sing again. So my doctor got the ENT, the top guy at the clinic, to come down and give me surgery to move the tubes around my voice box. He said it would kill me. So my own surgeon performed the procedure in a last-ditch attempt to save my voice.
Tokom operacije duge trinaest i po sati, Dva puta mi je srce stalo, 40 litara krvi je ubrizgano u moje telo. A moj hirurg je rekao da ovu operaciju može da svrsta u najteže transplantacije svoje 20-togodišnje karijere. Grudni koš mi je bio otvoren dve nedelje. Mogli ste videti moje uvećano srce kako kuca u njemu. Bila sam priključena na desetine mašina koje su me održavale u životu. Infekcija je opustošila moju kožu. Nadala sam se da će se moj glas očuvati, ali su doktori znali da su ga cevi za disanje u mom grlu verovatno već uništile. Da su ostale unutra, nikada više ne bih mogla pevati. Moj doktor je otišao do ORL - stručnjaka na klinici - koji je došao i operacijom uklonio cevi oko glasne kutije. Rekao je da bi me to ubilo. Dakle, moj hirurg u poslednjem trenutku obavlja operaciju da spasi moj glas.
Though my mom couldn't say goodbye to me before the surgery, she didn't leave my side in the months of recovery that followed. And if you want an example of perseverance, grit and strength in a beautiful, little package, it is her. One year ago to this very day, I woke up. I was 95 lbs. There were a dozen tubes coming in and out of my body. I couldn't walk, I couldn't talk, I couldn't eat, I couldn't move, I certainly couldn't sing, I couldn't even breathe, but when I looked up and I saw my mother, I couldn't help but smile.
Iako moja mama nije mogla da se oprosti sa mnom pre operacije, nije se odvajala od mene u mesecima oporavka koji su usledili. I ako želite primer istrajnosti, stabilnosti i snage u lepom malom paketu, to je ona. Pre tačno godinu dana, dana, na danačnji dan, probudila sam se. Imala sam 43 kg. Desetine cevi je virilo iz mog tela. Nisam mogla da hodam, da govorim, da jedem ni da se pomeram, a svakako nisam mogla da pevam; nisam čak mogla da dišem, ali kada sam pogledala i videla svoju majku, nisam mogla da se ne nasmejem.
Whether by a Mack truck or by heart failure or faulty lungs, death happens. But life isn't really just about avoiding death, is it? It's about living. Medical conditions don't negate the human condition. And when people are allowed to pursue their passions, doctors will find they have better, happier and healthier patients. My parents were totally stressed out about me going and auditioning and traveling and performing all over the place, but they knew that it was much better for me to do that than be preoccupied with my own mortality all of the time. And I'm so grateful they did.
Bez obzira da li je u piranju udar kamiona, srčana insuficijencija, ili loša pluća, smrt se događa. Ali život se ne vrti oko izbegavanja smrti, zar ne? Život je da se živi. Zdravstvena stanja ne poriču ljudsko stanje. I kada je ljudima dozvoljeno da slede svoju strast, doktori će shvatiti da imaju bolje, srećnije i zdravije pacijente. Moji roditelji su bili izbezumljeni mojim audicijama, putovanjima i koncertima širom sveta, ali su znali da je za mene mnogo bolje da to radim, nego da sve vreme budem zaokupljena svojom smrti. I na tome sam im mnogo zahvalna.
This past summer, when I was running and singing and dancing and playing with my nieces and my nephews and my brothers and my sisters and my mother and my grandmother in the Colorado Rockies, I couldn't help but think of that doctor who told me that I couldn't sing. And I wanted to tell her, and I want to tell you, we need to stop letting disease divorce us from our dreams. When we do, we will find that patients don't just survive; we thrive. And some of us might even sing.
Prošlog leta, kada sam trčala i pevala, plesala i igrala se sa svojim nećacima i svojom braćom i sestrama i svojom majkom i bakom u Kolorado Rokis, nisam mogla da prestanem da mislim na doktorku koja mi je rekla da neću moći da pevam. I htela sam da joj kažem i želim vama da kažem, ne smemo dozvoliti da nas bolest više razdvaja od naših snova. Kada to učinimo, shvatićemo da pacijenti ne samo da preživljavaju, već i napreduju. I neki od nas će možda i pevati.
(Applause) [Singing: French]
( aplauz ) [Peva: francuski]
Thank you. (Applause) Thank you. And I'd like to thank my pianist, Monica Lee. (Applause) Thank you so much. Thank you.
Hvala vam. ( aplauz ) Hvala vam. Hvala mojoj pijanistkinji, Moniki Li. ( aplauz ) Mnogo vam hvala. Hvala vam.