The Vitiligo Project

In 2015 I’ve had the pleasure of studying in Portugal for six months. Typical – where else would I apply than the sunniest country in Europe... My skin is of course a dedicated enemy of the Sun which often leads to heated arguments between my patches and I. My ex always used to promise to take me to the North Pole on our honeymoon so I definitely wouldn’t get burnt.
On a beautiful summer day in Lisbon we were drinking ginjinha with my friend Ágó: it’s the best portuguese drink there is, although I initially hated it. We were planning a bike excursion with a small company of friends. It was shaping up to be a longer camping trip down South with tents and all. We were just checking out different camping sites on the map when Ágó remarked:
„We’re going to get beautiful chocolate brown by the end.”
„Yeah, you sure will be. As for me, I’ll have to go in a space suit.”
„All right, all right. We’ll be chocolate brown but you can still be stracciatella.”

I was shopping in the mall one day. As it was the Summer, I had short summery clothes on making it clearly visible to everyone that yes, I had patches on my skin. The man walking behind me noticed them too. He came up really close and began the following, almost ceremonial courtship:
„Honey, what are those white spots on ya?”
(...)
„Hey, little girl! What are those white spots on ya?”
(...)
„Go fuck yourself, you spotty bitch.”
I had never heard such a consistently structures monologue before.

I was dancing at a festival when I noticed something repeatedly touching my leg. After I’d felt it a couple of times I glanced down and saw a tattood old gent with long, white hair crawling on all fours. He had the feathers of a small chicken scattered over his clothes and hair. He was staring at my shin like it was one of Shiva’s many arms. He wasnt’t touching it deliberately and looked like he merely wanted to soak up its aura. At first I had no idea what to make of the experience, after all it was – truth be told – a hippie festival so I simply let the old gentleman do what my shin was driving him to do; for all I knew it could have been the most intriguing thing for him in the world. Nevertheless, the thought that someone on the ground was actively bewitching my shin still made me a bit uneasy. I don’t know whether it was my wide eyes or swiftly pumping veins running rings around the 150 bpm music that did it, but he eventually looked up at me. I demanded an explanation with a rather natural gesture. He started speaking shortly and said he knew the solution to the patches of white skin on my leg. „No western chemicals, bullshit doctors or therapy either,” said the old man, „the miracle cure grows in India and I can send it to you.” It only has to be cooked in 73.4 degrees celsius hot water, cooled down on top of a pig’s frozen scapula in the middle of a glade and then smeared on myself. During our long conversation I kept noticing spooky or slightly odd phrases like „I’ve been watching you for days”, „I’m a shaman”, „I live in the jungle in India”, „here’s my card” and „friend me on Facebook”. Needless to say, I’d love to see the vines in the middle of the jungle where the wifi router is dangling from. Words followed words but at this point I was already anticipating the final one in our little chat. Before I left he said he lived round the corner on the right, next to some bushes in the festival and I was free to call on him there any time to get his contact info. I thanked him politely and we had no more words for each other. I never went looking for the bushes and I still have my patches. At least this way I’ll never have to have another little chat with local authorities about why a giant box of haystack has been mailed to me.

My boyfriend and I were lying down in each other’s lap, chatting. He was looking at my patches while we caressed one another. He traced the edges of my patches with his fingers eager to discover shapes in them and kept asking me about vitiligo. It was a perfect moment, the famous pink cloud was hanging above everything around us. There was mauve colored candyfloss, a unicorn eating grass in the background and doves cooing above us. We were just lying there smiling tenderly at each other, deeply in love.
„My dear Juluska! What will I do if you’ll no longer be here and I’ll crave women with not one but at least two or even three different skin colours?” My lover said to me.
„Come on, silly! I’m still 22 you know, I’m not gonna die yet. We have our whole life ahead of us.” I replied smiling.
„I didn’t mean that... I meant if I break up with you.”
The smile was wiped off of my face and I looked around again. In the heavy fog I could hardly make out the curly haired hog drenched in mud near us as it was digging for food in the dung, grunting happily when he found something delicious. A dusty, forsaken spiderweb was dangling in the corner like a curtain and I got shit on by that bloody pigeon as well.

In the final year of university everyone starts enjoying every activity that should really not be taking up their time – I was no different when I asked Ábel to come over and talk a bit. Soon after he had arrived and settled down comfortably he pinned me down with a question, I probably don’t even have to say what it was. In that final year nobody likes to hear the inquiry: „How’s your thesis coming along?” Ábel of course couldn’t have known that in those days I had two different reactions to this question. The first involved me jumping up like King Kong and shouting at the top of my lungs for everyone to leave me alone, the second consisted of breaking down in hysterical tears and producing symptoms reminiscent of an epileptic fit. However, because it was Ábel in front of me I managed to control myself this time and told him the three sentences about my thesis that I was really certain of at that point, briefly that it was going to be about vitiligo. Ábel didn’t add much to my topic as it is not one people can talk infinitely about, not even me. He simply said:
„So you’re writing about the faulty ones, then.”

On a beautiful sunny Summer day – the sort that makes you wonder whether your skin is going to melt off of your body and if all the liquid inside you will suddenly turn to dust – I got on tram 56. Although it fortunately hadn’t burst into flames yet, the air conditioning units did not seem to work its wonders: it turned out they were still kept in warehouses waiting to fulfill their destiny and ease the agony of a thousand people covered in sweat. I sat down on a seat with the coloured covers (I still think they chose these multi-coloured covers for all the public transport vehicles so that any stain could be passed off as part of the pattern). Be that as it may, I still don’t get why they included the colour blue; to my knowledge there are very few Na’vi people walking the streets here from the movie Avatar. Sitting down in my sleeveless shirt and rather short skirt I passed the time by gazing out the window half-expecting to see Armageddon or a dolphin leaping up from the Danube. A friend of mine from elementary school, Dani still claims he caught a dolphin on the Danube when he was a kid, but I think he was only fibbing. It was at this point, lost in wonder that I noticed a reflection of a face in the window, a pair of eyes that looked very much like they were looking curiously in my direction. Forgetting quickly about Armageddon and the dolphins I wanted to be certain about my theory that the woman on the opposite seat was looking at me; now I was quite curious about what might have drawn her attention. I looked up slowly, cautiously and quietly in order not to get her alarmed. I knew very well that if my intention was predicted, my little experiment would be over and I would have to dismiss the case without solid evidence. Luckily for me, the woman was quite shameless and still looked inquisitively at my skin. I could almost feel her gaze tracing every single patch on my skin, formed due to my lazy melanomas. I decided to return her gaze. I looked deeply in her eyes with an angry face but I still couldn’t engage her full attention. Finally the turning point arrived. The woman seemed suddenly frightened of my angry look but I was not going to let her off now. I smiled; there was a sign of relief and relaxation on her face and I could almost hear great big rocks falling onto the floor of the 56 tram. With a fixed and gentle smile I kindly offered to give her my plastic surgeon’s number. Be it shame or simple confusion this clearly made her uncomfortable again; she got up from her dirty, coloured seat at once and settled down in another one. Relieved, I could now turn back to the window peacefully to wonder whether I’d see dolphins or Armageddon that day.

Some years ago we organised a little get-together on 20th August (The foundation of the Hungarian state by Saint Stephen, celebrated as a National Day in Hungary) in Városliget. There were still shady trees there and we met in the garden of our old school. We were planning to leave for home sometime in the early evening hours before dusk; at that time I did not yet know that the single most disastrous catastrophe was lurking around the corner, waiting for me. After a couple of beers I merrily got on my bike to visit my sister up on Naphegy and probably watch the fireworks from there. I first got suspicious on Andrássy street that this probably won’t be the smoothest bicycle trip ever – large mobs of people were blocking my way everywhere and I could already see mirages of roadblocks with my mind’s eye. The hot summer air kept licking my body from every direction and I became more exhausted by the minute as I had no water. Unfortunately, I didn’t even have a lock to pop my bike down somewhere and get a bottle from a nearby shop. I had no idea at this point that in mere minutes I’ll be fighting for my life. I rolled down to Margit híd where my fears were confirmed. A friendly policeman told me I won’t be able to cross there right then; he said I could probably still cross the Lánchíd if I was quick enough but that was scheduled to be blocked soon as well. Using up my last strength I went to Erzsébet híd where the mob was packed even more tightly then anywhere else – considering all the other bridges had been closed this wasn’t surprising at all. My body was completely dry, yet I was still trying to make my way through the crowd at times on the sidewalk and at times on the road. I was feeling like I was only advancing one single meter per minute. As time went on, this became more and more of a problem as my body was completely drained; I was shaking a bit and I was becoming dizzy. My nerves were like a bunch of 30 Nm long, very tightly vowen strings with some strands even snapping off making my nervous system most similar to a fur necktie for tiny ants. I only wished for a bench in the shade and a big glass of water but my wish did not yet come true. I was still standing at the bridgehead on the Pest side in direct sunlight when I heard something behind me that got even more on my nerves. „Why is the skin of that redheaded girl so disgusting?” – I heard someone say. The tiny nerve strings I mentioned earlier snapped into a million little pieces, enough for an entire army of ants to watch the fireworks wearing tiny fur neckties. Acting on an impulse I started yelling „you fuckin’ son of a bitch” before even turning around spitting enormous jets of negative energy everywhere – the kind of conversation starter you won’t really be able to navigate back to calmer chit-chat even if you tried. By the time my angry gaze fell on the culprit (or culprits to be precise) I realised the question was asked by a small girl of about 5 years old wearing long blonde pigtails. She was asking her mother about me. Her parents must have taught her that it was never embarrassing to ask questions, a sentiment I now managed to destroy with one single violent exclamation. Suddenly everyone got frightened, the mother started apologising with her daughter breaking down in tears beside her. I simply said „sorry” and rode off.
It finally took me two hours to get to Naphegy from Városliget. I was completely dry and almost blind with exhaustion. I sat down on a bench in the shade with a glass of water in my hand and went through the events of the day in my head. I just sat there shaking my head with my mouth drawn sadly to one side.

When it comes to skin problems I’m one of those people who’re always fighting windmills. Sometimes it gets burned by the sun requiring extra care, at other times it develops rashes that need attention or becomes sore and needs to be calmed. These would all be alright if proper medical help would also be readily available, but sadly medical diagnoses these days tend to focus only on whether the problem is caused by an autoimmune disease or some psychosomatic disorder. Translated into normal human talk, these medical speeches would sound something like this: „How on earth should I know what these things on you are?!”
In the winter of 2016 my face was once again looking like I had been making out with a hedgehog while my legs were more like scurfy pigskin trotters both to the eyes and to the touch. It was at this point I decided to stop the home-cure stategy reading women’s magazines – it was time to go to a real dermatologist. Since my sister only said nice things about the doctor she’d been to lately I decided to give him a chance too. I hastily arranged an appointment with uncle Miki – I called him „uncle” as he was close to eighty and had probably seen more throughout his career than he would have wanted to.
The furniture of his office was around the same age as uncle Miki himself. Only the yellow spotlight usually used on construction sites, now standing on a tripod, would have had to be thrown out for a completely authentic atmosphere, although he might have been keeping it specifically to burn his patients’ eyes out – an activity he seemed to enjoy very much as it made the boring hours of his workday fly by faster. He sat me down or rather up as the faux leather examination chair with its frame glazed in bone white paint was so high I had to get on my tiptoes to reach it. On my right I could see the other part of the duo, the examination bed with similarly white footprints on it showing clearly where the patient’s feet shoud go. I hurriedly turned my head the other way where I spotted a small desk full of sterilised medical tools. To maintain their disinfected state they were all wrapped in tinfoil familiar to the brand in every kitchen within the country. Only a washbasin and a slab of cement could have made the atmosphere more authentic.
The doctor seemed very thorough. He examined the areas of skin in question with a great deal of different lenses and appeared to think long and hard about them before finally revealing the names of the diseases I was up against. On my face I had perioral dermatitis while my legs were plagued by something called lichen ruber planus. Uncle Miki then lectured me briefly about the diseases pointing out casually that neither can be cured, only treated and the available treatments are themselves fall more in the category of ’experiment’ than being actual remedies. By this time, of course, I was considering going outside with a bag on my head and I honestly did not care about what half-cure and how much of it the doctor prescribed – I just wanted to get rid of the evil that plagued my face. Uncle Miki wrote the prescriptions by heart in almost calligraphic letters and handed them to me.
As I was struggling to get out of the examination chair obviously designed for giants the doctor brought up the topic of vitiligo. I smiled and confirmed I had a natural pigment deficiency which I had already accepted as to my knowledge it still had no known cure. He nodded enthusiastically and said how great this all was, but soon after he changed his tune completely. Uncle Miki – who by the way is not the sort of person one can easily interrupt – started asking me if I knew about the superb cosmetic products available that could cover such patches of skin not just on the face but on the whole body. My affirmative answer did not seem to distract him one bit as he continued to recommend the products suggesting my ugly patches would all be covered up nicely if I used them. At this point we entered into a minor argument; I explained how I’m quite happy with my patches, an idea he did not seem to believe for some reason. The situation started to become genuinely uncomfortable. I was afraid he’ll soon tie me down and apply some make up as patches like mine in his idea should never ever be seen. In the end I fortunately managed to convince him that I do not need any of this as I live quite happily and at peace with my patches in a rather extraordinary symbiosis. He fell silent for a moment but by the time I got my coat on his lips started moving again. Although I half-expected to hear the simple „Get well, goodbye” routine uncle Miki reignited the topic and once again advised me to use one of the aforementioned cosmetic products as I can’t ever know when I’m going to appear on TV or when a date is going to fall in my lap out of the blue.
My enthusiasm going in the doctor’s office had turned to complete dismay by the time I finally left. I felt uneasy on the street and this time not because of the prioral dermatitis on my face but because of my patchy skin.