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.

the boon of words

they shut the plastic cage just above your face with a few clicks, then slide you into a narrow tube for about an hour. the noise of the mri goes on continuously. what happens with your head during that hour is partly in your power to control, partly uncontrollable. dozing off, dreams, visions, thoughts. revived scenes from the book you are reading. gratuitous ideas.

in the state of semi-somnambulance while in the mri a few days ago, an unannounced thought came into my mind. 'you should turn everything into sentences, every idea, every vision that arises before your mind's eye.' i was not completely sure what this instruction meant, or where it came from. the essence is probably that i should translate as much of my experience as possible into language. this urge has not been unfamiliar to me. i was eight when i started writing my first diary. but why did the thought crystallize in my mind during this medical examination? as a consolation (for it did feel consoling) or as a reminder that my way in the world is through words?

i wish i was a writer, i wish my words were impeccable. and i do write from time to time, but when my words come out they may sound amputated, banal, strained. i would like to breathe words, to reap words. i would like to give away words as presents. my words should be me, but they are not. they are flimsy bridges, largely unreliable, from which one easily falls into the abyss between essence and expression. maybe the thought that crossed my mind during mri meant that i need to hunt wider and fish deeper for proper words, because they probably do exist hidden at some secret place.

one of the greatest gifts in life is the ability to find the right words. i might keep trying. i might even succeed, but the current reality is that i do desire the right words, but they are still escaping me.

iceland 1986-2016

The world of yesterday is constantly shifting in my mind. Sometimes it feels light years away, and sometimes I have a feeling I am still living in it. Everything is even more complicated when it comes to my relationship with Iceland. I can pinpoint the exact moment in the past when it began, but despite that it seems to have been timeless. Here is how it all began. 

Thirty years ago, when I was fifteen, I came back home from a long day at school, so hungry that I asked my mother to bring me dinner on a tray to the living room. I was leaned back on the couch, with my feet on the coffee table, and while I was eating I causally glanced at the 7.30 news on TV. At the time I had no interest in such things at all. However, at a certain point I was intrigued by the mention of Iceland, a country I had only vaguely heard about in a geography class, a country I knew nothing else about. Presidents Reagan and Gorbachev were meeting there, by a white fireplace (as I remember it), but then the camera switched to show some streets of Reykjavik, its colourful roofs, a mountain in the background that I would later learn is called Esja. That footage pressed a mysterious button somewhere deep down in my mind and soul, for all of a sudden I was struck by what I saw, and I wanted to see and learn more. But in a provincial town in Yugoslavia back in 1986, before the Internet, where was I to learn more about Iceland? And how was I to get in touch with somebody from there? The urge was enormous, I could not help my desire to get in touch with Iceland, I dreamed about it incessantly, and tried to come up with a few strategies of how to get closer to it. 

I did not know a single name of an Icelander, I did not know any street address, and there was nowhere to find such information. No Icelandic embassy in the country. So I decided to make a random telephone call to Iceland, try to explain who I was and why I was calling, and ask for their address so that I could write to them. The man who answered the phone was very kind, and he actually did spell out his full name and address for me. I put it down like this: "Halljajaur Inn, Kringland, some numbers, Reykjavik". Full of elation and hope, I wrote a letter in school English asking them to put me in touch with interested Icelandic pen-friends. Two or three weeks later the letter returned, of course, because neither the name nor the address resembled anything or anyone recognizable in Reykjavik. My disappointment was huge, not just because the letter returned, but also because I had to cross out telephone as a way to stick out with my plan. 

I think a whole year passed without any news about Iceland. I would find an odd, brief article in newspapers about Miss World from Iceland, or some geographical facts in my uncle’s maritime encyclopedias. I treasured it all in my scrap book, but it wasn’t enough. Then my father went to a business trip to Germany and brought back a small Braun electric shaver. I was keen on inspecting the razor, as well as the booklet that came with it. And in that booklet I discovered something that would turn my life around: it included a list of all the services worldwide where the shaver could be taken to be fixed while under warranty. Among them was an address in Reykjavik! The company’s name was Pfaff. As impatiently as ever, I immediately wrote them a letter. The days that ensued were too long. Still, several weeks later I did get a response. That moment was one of the most exciting in my life by that time. The company kindly sent me their badge, and informed me that they had forwarded my letter to one of the popular Icelandic teenage magazines. I felt the world was opening up for me, and I thought I could expect some news very soon. That could have been '87 or '88. I waited, and waited, but nothing was happening for months. I felt I was doomed to failure, and started thinking that what I wanted was impossible to achieve. No new opportunities came into view. I celebrated my 18th birthday in 1989, and went from Montenegro, where I was living, to my native Croatia (at that time both countries still belonged to Yugoslavia), to spend the summer, as I always did. Iceland was a gem hidden from my eyes, but incessantly scintillating within me. Then one day in August my mother telephoned from Montenegro to say that several letters from abroad had arrived for me. I think she mentioned they were from Iceland. Not knowing what they were, but ablaze with the rekindled euphoria, I could not wait for my mum to come to Croatia and bring the letters. When she finally arrived, there were six of them. All were from different young people from Iceland, introducing themselves, some with photographs. ‘Vikan’ had run my add for pen-friends, though with a huge delay. The feelings that those letters evoked were magical. Still, it did take three years for it to happen. I responded to all of the letters, and when I returned home in September more were waiting for me. After a while, I established permanent pen-friendship with four people: Kristin, Katrin, Unnar, and Frida. With some of them I am in contact to this day, and one of them, Kristin, I met several times during my visits to Iceland, and she has become a dear, personal friend. 

The adventures that my love for Iceland has brought to my path are too numerous to cover in one short text. I just wanted to look back at the beginnings and say that Iceland is one of the most constant loves of my life, one that can hardly be described. Thirty years have passed, the world has changed enormously, but some things remain as permanent stars in the sky.