oktoberfest children

what my parents had when they were in their twenties was a privilege many of us nowadays cannot even imagine. besides being young, they had suddenly gained almost complete freedom and control over their lives, and the world suddenly opened up for them to a degree they had previously been unaware of, having been brought up in patriarchal families. namely, in the late 1960s, they both left their respective villages in former yugoslavia, and came to live and work in munich, bavaria. both lived in workers' accommodation homes in central munich, and both explored the city, their newly acquired freedom, and their own selves. they hang out with other young people like them, not only from yugoslavia, but from germany, greece, italy, too. they met partners. finally, my parents met each other, got into, from what i can gather, a somewhat turbulent relationship, and, shortly after getting married, produced me. i came to this world in june 1971, which means that I first got into the womb during oktoberfest 1970. a very jolly start.

thirty-five years later, after we have moved away from munich for many years, and when my father had already been gone, i accidentally discovered i had a half-sister by my father, still living in munich. the two of us met a few months after our first ever e-mail contact, and learned many wildly corresponding facts about our lives. the one we hadn't particularly dwelled on was that she was born roughly one year previously, in 1970, which means that oktoberfest 1969 was the time when she entered her own mother's womb. both times, the player was my father.

now, who can judge such young people for getting intoxicated with freedom, with being young and fun-loving, with the festive commotions of a big city. i am so happy that they had the oppportunity to sow their wild oats, which was, unfortunately, not the case with me, since i lived in much more constricted circumstances when i was that age.

their youthful unabandon brought me a sister, which was a beautiful, crazy, and exciting fact to learn. the two of us got to know each other, and retained our contact over the next fifteen years, as long as she was on this earth. sadly, she passed in 2022, just before her fifty-second birthday, at the same age our father died in 1999, and at the same age our father's mother died in 1964. all three of them had the same genetic illness, even though only my sister was diagnosed with it, and all three lived to be the age i am right now: 51. i have this same illness, too, but i think i will have more luck and live a longer life than them, since i am receiving constant medical care. however, that is not the point i wanted to get across. the point is to praise the passion of oktoberfest, to praise youth and love, to praise freedom and fresh new lives, such as that of my sister, and my own. however troubled, however long or short, however successful or just ordinary, a life is a life, a life is a whole world, and I am thankful for oktoberfest and those young people, who gave my sister and myself a present: our own two lives, our own two worlds.

my sister and me in 2006, checking out the camera timer :)

When Genes Go Awry - English Version

Yesterday I received five copies of the English version of my book about living with von Hippel-Lindau syndrome. Someone in the publishing company 'corrected' my grammar in the title, so they put 'goes' after a plural noun, instead of 'go'. I did not have an official proofreader, the text is entirely mine, so I was hoping there would not be too many mistakes in it, but I really did not think the publisher would be so creative to add new ones. The title inside the book is correct. I am not sure what happens next, and how many copies with the mistake have been printed. I still invite people to read my account, the first public talk about the book will take place in Metkovic, Croatia, in late September 2022, the Dubrovnik presentation will follow after that. 

https://despot-infinitus.com/en/product/when-genes-goes-awry/ 

    

von hippel-lindau - when genes go awry

I have just published a book in Croatian about my experiences with von Hippel-Lindau syndrome. It will come out in English, too, by the end of this year.

https://mojaknjizara.hr/proizvod/kad-geni-zaribaju/?fbclid=IwAR0vUrUjmGc9a2nqN3deol9l-zEJEotBAZtEnsZl9x_e9bfzim482U28f5Q

 

balašević i jedanaestogodišnji ja

do prije nekoliko dana, kada me na dijalizi u dubrovniku zatekla vijest o balaševićevoj smrti, nisam ni slutio koliko je bio važan u mom životu, kao neki element koji se uzima zdravo za gotovo, skoro poput dnevne svjetlosti. neizmjernost gubitka shvatimo tek kad tog elementa više nema.

u zadnjih nekoliko dana, slušajući balaševićeve pjesme i priče, bez ikakvog reda se u meni gomilaju sjećanja, emocije, nadahnuća, "gurkaju se laktovima", penju jedni preko drugih, toliko ih mnogo ima. sve one bi, čini mi se, poslužile kao dovoljno veliko more za inspiraciju jednog života. najdirljivije je to što širom ovog bipolarnog balkana, pa i preko njegovih granica, balaševićevo nasljeđe ne krasi samo njegova velika umjetnost već iznad svega njegovo čovjekoljublje. bez ikakvih malignih političkih predznaka, u bosni opet odvanjaju riječi o miru izrečene u opasno doba, u zagrebu se ćirilica piše s ljubavlju, u splitu uz suze pjeva na ekavici, a novi sad i ulica izvjesnog geografa cvijića postaju drago susjedstvo čak i ako nikad nismo zakoračili u taj grad. nama koji smo na ovim prostorima gubili živote, budućnost, gradove,  nadu, i sve to u vrijeme kog se jako dobro sjećam a nemam još ni pedeset, umjetnost koju ne natkriljuje čovjekoljublje baš ništa ne znači. 

iz tog dubokog i širokog mora nadahnuća koje je balašević zatalasao u nebrojenim grudima, a o kome bih samo ja mogao napisati tomove, ograničit ću se na jedno sjećanje. godina je 1982. i imam jedanaest godina. u mjesecu maju, koji je u engleskoj poeziji oduvijek bio sinoniman sa "carpe diem" filozofijom jer najavljuje ljeto, a u našoj bivšoj zemlji bio posvećen "mladosti", na pozornicama u domovima kulture i školskim holovima nije bilo predaha. u nikšiću, gradu u kom sam proveo školske dane, nama osnovcima su "majske smotre" bile kulturno-umjetnička zamjena za gladijatorske borbe, i svi smo hrlili u "malu salu" lokalnog kina gdje su se održavale. bilo je to poput finala eurovizije ili nekog svjetskog prvenstva: kroz godinu bi svaka osnovna škola pripremala nadarene učenike za recitaciju, ples, dramski skeč, pjesmu. na školskim priredbama bi se odlučilo o dva najbolja nastupa koja bi prolazila na finalnu "smotru". pretpostavljam da je na kraju bilo dvanaest najboljih jer je u samom gradu bilo šest osnovnih škola. dvorana bi bila krcata predpubertetskih i pubertetskih lokalno-školskih patriota, glasnih i razularenih, a na pozornici su se smjenjivali plesači, glumci, svirači. moja susjeda sonja je bila u plesnoj grupi koja je igrala uz čolićevu "mađaricu", kozački kazačok koji je pripremala nastavnica matematike iz moje škole, mira janjušević, par puta je pobjeđivao na "smotri" ali, ja najviše pamtim nastup jednog dada iz moje škole, možda je bio u sedmom razredu dok sam ja bio u četvrtom, i gledao sam ga sa strahopoštovanjem, kako nižeosnovci najčešće gledaju višeosnovce. taj dado je, čini mi se, bio zajebant i ne baš dobar đak, ali je odlično pjevao. u krcatom, zagušljivom kinu, punom hormona i kokica, otpjevao je balaševićevu tek izašlu pjesmu "triput sam video tita". dok je pjevao prestale su se žvakati kokice, utihnuli su krici i arlauci, tišina i emocije su se mogle rezati tupim nožem. mene je sve to duboko, duboko dirnulo, bio sam ponosan na svoju školu "mileva lajović lalatović" koju su gradski snobovi smatrali seljačkom, muzika se igrala s mojim nevinim i naivnim emocijama, riječi pjesme su crtale žive slike pred očima, čak se u njima spominjao i nikšić za koji sam mislio da niko van njega nikada nije ni čuo. najnebitniji u svemu tome je bio tito. ja sam netom prije njegove smrti doselio u jugoslaviju iz njemačke pa nisam baš bio uživljen u taj kult, ali moja predadolescentna, nepoznata, snažna bura u grudima koja u tim godinama hvata najdublji korijen čvrsto se uplela u pjesmu o dječačiću koji je zbunjen i opčinjen titovim prolaskom kroz grad, o mladiću koji s gitarom kroz muziku traži svoj izraz, o tuzi koja povezuje različte ljude tadašnje države, a povezanost je kod nas jedini lijek protiv istrebljenja.  

teško je nabrojati balaševićeve pjesme koje ničim izazvane pokrenu u meni vatromete sjećanja i osjećanja, iako nikada u stvari nisam s namjerom "slušao" balaševića kao što jesam na primjer ekv ili janis joplin. "panonskog mornara" sam dobio kao singlicu od strica kad sam tek doselio iz njemačke i dok još nisam dobro ni znao naš jezik, "jesen stiže dunjo moja" je asocijacija na šetnje po gradskom parku i moj prvi, svevišnji walkman, "putuj evropo" je u mračnim godinama objasnila sve ono što sam i sam mislio i osjećao, ali kada bih morao iz njegovog sveukupnog opusa spasiti samo jednu pjesmu mislim da bi to bila "tiput sam video tita", jer ona, poput nekog davnog parfema koji udara direktno na amigdalu, u trenu oživi tu majsku noć punu čarobnih slika, emocija i uzbuđenja jednog jedanaestogodišnjaka.   

 

           

    

sweet lemons.

in the last year i have extensively written about my compromised health, i think more than ever before. one article about a rare inner ear tumour that i had in the past will come out soon, and i have also written a full-length manuscript about life with von hippel-lindau disease, which might get published one day, too. hence, i am more than ready to turn elsewhere and explore other areas of life, but one little thing from my recent hospital experiences came up as a theme for a blog entry, and refused to be discarded. 

in february 2019 i went to the national institutes of health in bethesda, maryland, very close to washington dc, for one more surgery. it was my eighth major operation, and my sixth at the nih. this time i was there for a complete bilateral nephrectomy, which again lasted almost ten hours, but eventually turned out to be successful. however, the surgery is not the theme of this brief text. here i want to write about the people who work at the nih and how i experienced them. 

being discharged from hospital is way more fun than being admitted, even though at discharge i usually feel like a walking slab of wounded meat. but upon admission, which is usually surrounded by some gloom, there was one thing to look forward to. i would get to see the doctors and nurses and other nih staff that i had met in the past, and that had always treated me with respect, warmth, and professionalism. that is something that always lifts up my mood, and that unmistakably proves to be true. this time was no exception. i felt i had many friends at the nih who were really happy to see me and take care of me again.

every time i stay at the nih i also encounter people i had not known before, and many of them turn out to be as nice as everybody else. for the first time last month i met the staff of the tiny dialysis unit at the nih, where i was dialysed three times a week throughout my three-week stay in the usa. despite some minor technical issues that were emerging occasionally, mainly because of the different approaches to dialysis in europe and in the usa, i felt welcome and cozy during my dialysis sessions, and i chattered away with the staff most of the time. they made me feel comfortable and confident. we raised different topics and got to know each other pretty well. when i was leaving i got big, warm hugs from them, and i somehow feel that that was not the end, that we will have a chance to hang out again in the future.

but one detail that took place during my dialysis days is symbolic of the energy that was present there. one day i mentioned to rick, the male nurse, that i liked trader joe's, and that my cousin nat from seattle had recently sent me a package in which there was a bag of trader joe's dried and sweetened lemons, which i immediately got addicted to, finishing the whole thing in two days. then we switched to another topic. lemons were forgotten. at least until my last dialysis session at the nih. that morning rick came to work and brought me a bag of dried lemons. he remembered it when he was in the store. this touched me so much that i did not know how to thank him properly. my words of gratitude could not match how i was feeling inside. the nih proved once more to be full of compassionate, humble, knowledgeable, kind people. if only more medical institutions were like the nih in this respect the world would be a much, much happier place.

in the end, i hope this virtual text reaches out across the pond and says hi to rick, denise, carol, nguyen, lilian, dr. austin, and lets them know how their friendly but professional approach made the whole experience much more bearable for me.

god behind the screen

the book i have been working on for the several past years is about to come out later this summer.

https://www.routledge.com/God-Behind-the-Screen-Literary-Portraits-of-Personality-Disorders-and/Andrijasevic/p/book/9781138339040

Slippers, or what makes me cry

The tears that we so frequently hold back find their oblique routes through unsuspected alleys. They take us by surprise, and they feel good.

I did not cry in so many life situations in which tears would have been a most natural response. When I was little I was terribly ashamed to be seen crying, so I hardly ever did before others. Only in silence, surreptitiously. I don't cry very often now that I am an adult either, but at times tears catch me unawares.

I cried the other day, over an old memory. It resurfaced from the depths of my childhood, from the kindergarten days in the mid-70s. The teacher assigned us a project - we were supposed to make cardboard models of our own slippers - matching our real life slippers in size, shape, and colour. Mine were blue and red, with a zipper at the front. I remember the final result. I wasn't too happy with it. Still, this memory made me cry.

Later on I tried to understand why. I think that one of the reasons is the loss of that child, of that day and age, of that shape of the world. Ubi sunt? As opposed to that sheltered, cherished boy whose greatest worry was to make a cardboard slipper, I now stand disinherited of that peace and that purpose, and I only wonder where - where has it all gone? Stupid, I know. But so real.