Tag Archives: life

Honesty is not (always) the best policy

You-should

I learned quite some time ago that two (or even more) conflicting emotions cannot coexist at the same time; I didn’t just read it somewhere, I felt it on my own skin. This proved to be true once again in my last ordeal with the upper part of my GI tract – I was horrified of what I was feeling, horrified of the exam necessary to detect any possible problems, and eventually horrified of the worst possible outcome. Essentially, it was even worse than that – I was totally petrified. When you experience such an intense degree of fear, you can’t be either sad or happy or angry at the same time, all else vanishes from your focus. Once the fear subsidies, other emotions can resurface again and take that fear’s front row place. That’s a very powerful tactic for dealing with panic disorder – whenever any other emotion overpowers you, fear retreats and panic is kept at much safer distance.

In my present reality, as soon as I got my biopsy results and figured out that there are some tissue changes, but nothing that much alarming, I felt a tremendous relief. It seemed such a positive thing at that moment, it felt wonderful, even though I still can’t get rid of my stomach issues. It wasn’t long before the relief was replaced by the sensations of grief that come and go, alternate constantly like ebb and flow. Suddenly, it’s something I do or something I say, an item that I hold… memories of my dad keep coming back and sorrow and tears overcome me. Then it gets better, I get distracted, but not for long.

As if it weren’t enough, I have lots of financial issues as well in this truly post-traumatic life, as there is no longer any of the dad’s income. I do receive a very small amount of money for some occasional jobs I do from home, but that’s hardly enough to make things better. This month I worked a lot, as a matter of fact I worked for hours even on the day when I received anesthesia, in spite of the recommendations to relax for the rest of that day. Today I merely asked if there would be any payments in my favor because February came and almost completely went without any income for me at all.

I was just wondering you know, I have bills to pay, it’s quite hard, I said. The reply was – Well, if it’s hard, then go and politely ask the boss to find you some other PROPER (for this woman that means office, not home based) job, because you’re not doing much for the company, you know. No payments this month for you. That’s not fair, I said, I did work a lot this month in spite of having health issues. Health issues? Your health issues are nobody’s concern, we all have issues – so what?

WOW.

My thoughts wandered back to that bed in the GI department and to the moment when the anesthetic was injected. I could have died right there, many things could have gone wrong, I signed the consent. Yet I woke up seemingly undamaged and rushed home to do some important things that could have created serious problems in case I hadn’t waken up. Nobody else has the access to that information, nobody else knows the e-mails and passwords. Nobody there speaks English at this level, which is necessary for dealing with their important papers. Oh yes my dear, you would have had tons of serious concerns if I hadn’t waken up. On the other hand, thinking of how easily the movie of my life was interrupted by that anesthetic and how peaceful and calm that darkness I slipped into was, maybe it would have been much better if I hadn’t waken up at all. This way, I got right back to that same sea of fears, panic, uncertainties, sorrow, pain, not eating, not sleeping, not truly living, having no idea how I will go on from here.

PD is an expensive illness among other things, as I once said. That anesthesia cost what is for me lots of money, but without it I would have never completed the exam and the GI team would have had to deal with stopping a panic attack instead of inspecting my intestines. I worked precisely to earn so that I could prevent the attack, so that I could “bribe” my illness to spare me from its ugliest pits. How wrong I was.

I am used to people being rude and I do know there’s a harsh world out there, but in these circumstances I’m more vulnerable than usual. Also, these poisonous words came from a person who knows me for many years and knows all about my loss. I didn’t ask for pity, sympathy or empathy and I never would, I just wanted some retribution for my work that I duly deserved in my opinion.

It was also recommended to me by her to take some “calming” pills as it’s not normal to be sad that long (5 months is so abnormally long?), and she added that I SHOULD pull myself together and not go around visiting doctors whenever I feel an ache or two.

Calming pills for depression? She has obviously never hard that such medication depress your nervous system even more. Secondly, it’s a very bad choice of words to say to someone who has anxiety to pull oneself together – we so desperately want to, but how do you do that? Shake your head to left and right, button up your shirt and go out to the big bright world magically cured? What are those pieces of me that are scattered away and that have to be reassembled again, pulled together? Has anyone invented a glue for sealing back together the pieces of a “broken” mind? But people still love to pass on psychiatric advice, even without any firsthand or circumstantial knowledge about such issues.

What she doesn’t know is that those as she calls them calming pills have been my companions and life saviors for two long decades even at the best of times, let alone when I held with my both arms a person who was terribly choking and fainting and eventually dying right there in front of me in my arms, and there was nothing I could do to prevent it. An ache or two? I hardly eat for more than three months, I lost even more weight, I live with constant arrhythmias because my swollen stomach irritates my heart, and I have 4 different gastric diagnoses after the endoscopy. It took me one hell of a courage to go back to the GI department, I postponed it as much as I could, because my dad was counting his last pre-palliative days surrounded precisely by such doctors. I went there 3 times, endoscopy included, so much for constant visits… who on Earth would want to go visit their worst nightmare every other day or so?

Conclusion: I shouldn’t have asked for the payment because it wasn’t coming anyway, the only thing I managed was to ruin my day and end up sadly pondering about the future.

I made one resolution – not to discuss ever again how I feel physically or emotionally with any person in my real life (apart from my mother). They will inevitably ask questions, but “fine, thanks” even in the worst of times will do just fine. I’m well aware that such a decision can isolate me even further from my immediate surroundings, but at least it will spare me from any newly inflicted pains or judgements.

What people in situations like mine dislike the most are surely statements beginning with YOU SHOULD…

You should overcome your loss.
You should get better, it’s high time.
You should take pills to calm yourself down and move on… i.e. pop up a benzo and chill out, somebody died, so what? (it’s important that they’re still alive and kicking, why should they care about others?)
You should do something about your life, you know. (Really? I’d never guess…)
You should earn more money immediately.
You should marry, a husband would take care of you.
You should take your father’s place in all the chores he was involved in… etc. etc.

i.e. :

Tanja, you should do something entirely different from what you’re doing right now. You’re wrong about everything you do. YOU SHOULD CHANGE. COMPLETELY.

My message to all of them – Guys, I “appreciate” your constant reminders of my “faults” and I know those shoulds very well myself – but I have my own pace at which I can or cannot do something. I should probably do many things, but sorry guys, I’m unable to at the moment. RESPECT IT. I can’t change to be someone else. I don’t want to be someone else. Maybe I don’t even want to change everything in my life. Maybe I’m just trying to survive and doing my best, that didn’t cross your minds?

If someone thinks that he or she can live my life better than I do, I’m very willing to exchange places. To put that someone temporarily in position to suffer from panic disorder the way I do (happens only to 2% of world population at most), lose one of two closest persons in life to cancer after taking full personal palliative care of that person at home with no real medical means at all, eat just a bite or two here and there, sleep just a couple of hours at night being constantly awaken by burping and arrhythmias, suffer from hypothyroidism with almost inevitable surgery of the thyroid, have very limited means for basic needs in life, work without sense and have no friends in real life, mainly due to PD.

If someone can live such life better than I do (and I think I fight very much every day), I’d truly congratulate them.

No problem anyhow, I’m very used to being alone in what I do and how I feel, it’s nothing new to an only child like me. If that’s a price to pay to be calm, to avoid being honest about what happens to me and how that feels, then for me in this case honesty is definitely not the best policy.

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Lonely, yet not alone

There are always people around me. This is a pretty big town, it’s been that way for as long as I remember it – busy traffic, busy streets, everybody running somewhere and pushing you aside if you fail to keep up their pace. I was part of that pace once, running every day to fulfill that self-destructive personal mission of overachieving in every possible way. I surely pushed aside somebody myself being completely oblivious of that, with my mind obscured by the image of goals I was constantly setting up in front of me. Then I stopped running and started hiding, taken by that false primordial belief that my home is my shelter and that as long as I don’t leave it, nothing bad can happen. Conscious realization is one thing, instincts are something completely different. Unfortunately enough in my case, instincts always won because that’s how nature works. Fighting those instincts is one of the toughest tasks life can impose on you, but it’s not something you can give up on, because giving up on it would mean giving up on yourself. If you choose to live in these conditions, you have to be ready for a rough fight. So I started running once again, this time from all those anxiety provoking situations which is just about everything real life out there away from home consists of. I probably pushed some more people aside in those mad rushes to save myself from the invisible enemy, but those are moments that I surely don’t remember. Runs turned into fast walking and that’s pretty much where the progress stopped, until I had to live the tragic loss of my father. Maybe you thought that all that happened with him made me run again, but that’s not the case. Grief, just like any somewhat more serious body illness slows you down, tames you pace, makes you drag yourself, stop or even sit down and ponder, watching powerlessly the world around you. I guess it’s body’s way of protecting you from losing even those last tiny resources of energy left in your stores. Tears wash out tons of anger and anxiety related chemicals and give you that much needed natural sedation for a moment or two. When you walk slowly like that in the middle of the previously mentioned mad crowd, it’s only then that you really see how much those around don’t even notice your presence, let alone your problems. They push you, hurry you, walk past you, sometimes even address you a couple of bad words if you’re standing in their important way. They are around you, you’re not alone, but somehow you feel lonelier than ever.

It’s not much more different with acquaintances or those considered real life friends. I remember reading somewhere some time ago that the more time passes from the loss you experienced, the less and less frequently people will contact you. At first, your phone usually rings all the time, this person wants to know how it happened, than that person calls who heard from this person, then you inform somebody who cries and informs dozens of others and so on. You repeat the story over and over again, slowly ending up totally exhausted. In the coming days phone still rings, people check up on you. They usually offer help in general, but you usually never ask for anything. By the time you reach approximately two months from the tragic event, you realize that something is not right, that life is dominated by even more silence than usual. You look at the phone and that’s when you get it, it has virtually stopped ringing. Other people had just about enough of all that already old story and turned to other different life battles. They don’t call you, but you end up finding out about what’s going on in their lives – standing on a no man’s land of your own life, you observe other people’s weddings, birthdays, promotions, smiles, gestures of love, expressions of happiness. You can’t participate in all this, nor they need you around if you’re numbed by grief. Sometimes it seems to me that grief is considered a dangerous contagious disease, the further you go away from it or the less you talk about it, the stronger is the illusion that you’ll never catch it. I was walking the other day down the street and the woman who knows me was approaching me, holding her little son by the hand. The moment our eyes met, she gave me some strange look which was a mixture of pity and dislike and moved to the other side of the street, pushing her son to her right, away from me. I overheard her mother asking her why she did it, and she replied that it was because she didn’t know what to say to me. Hello would be just fine, there is no need for anything extra special. A bit more than a week ago there was a wedding we all should have attended as a family. When the word about my dad’s passing away was spread, we didn’t even receive the invitation any more, attending weddings is improper in my circumstances. My mom and me still mustered the strength to prepare and deliver the present all the same because we consider that person important, only to discover today that the present is still lying where we placed it, untouched and unopened. There were around 400 shiny happy people on that wedding, so indeed why should a present from two grief stricken women be taken into consideration on such a crowded event. The same happened with a birthday present I traditionally give every year to a friend – this person didn’t have time even for a small talk with me and didn’t even look at what I brought. I waited all evening with my cell phone in my hand for at least a short text message to know if the gift was liked, but there was none. I’ve always loved giving out presents to people especially when I nail what they truly like, but I guess that right now it’s all about my inability to spread happiness around me. There is this one line from our quite good TV show where a woman begs for love and the man replies: “How can you Sophia make me or anybody else happy, when you are so unhappy yourself?” Whatever the case is, the fact is that I feel lonelier and lonelier every day, sitting alone in my black clothes and with that black sorrow in my heart. Maybe it’s still too soon, the day after tomorrow it will be two months without dad. Or maybe I’ll never truly get used to it. Just like when Dr. Brennan talks with agent Booth at the end of one episode of Bones and asks him – How do you overcome a loss? He replies – You never really overcome it, you just survive.

Technically speaking, I survived. For now. But it feels like standing in the middle of the field, after the war ended. You’re free to do whatever you want, but you have no idea how to live that new life. And you’re very much alone in all that, no matter how many people move around you in that reality.

How important is a PhD title?

Coping with the loss of a very close person who used to be the true pillar of your family can have very unusual implications. I have heard about these things before of course, but it’s only when it hits you personally that you get to know the strangest depths of human nature.

I’m living in a country that has been trying so hard lately to fit into the most advanced values of the contemporary planetary human society, yet it’s still centuries if not millenniums far away from paying true respect to female abilities to do the great majority of things just as well as any man could do. Women still earn up to 30% less than men for performing exactly the same job and are still highly encouraged to think that their only true life purpose is to find a good “opportunity” to marry well, which in turn usually means to stay at home, cook, clean and raise kids, which are all tasks Serbian men in vast majority of cases wouldn’t tackle even if their dear life depended on it.

In the spirit of these cultural values and taking into consideration the fact that my little family consisted of my dad, my mom and me, the attitudes of people who know us changed dramatically after my dad passed away. Life is now about two women only, and the consequences can already be felt. There is that lost sense of security and protection, as though we’re suddenly living life in a house without a roof above our heads. Everybody thinks it’s their duty to give us advice, to remind us of our vulnerability, of our incapability to perform men’s muscle related tasks, and some people are surely trying to take advantage of the situation. One day not so long ago, I was warmly advised to hurry and marry as fast as I can, because I can’t go on without masculine support in my life – basically according to this person I had just about enough of “fooling around” till now, I could have done so as I had the support of both of my parents but as this support is reduced by 50% now, I should urgently do something about it. Besides, your clock is ticking you know, this person added among other things, obviously forgetting that my biological clock is my own business and nobody else’s, but never mind anyway. I’m not really sure how somebody’s father can be replaced by hurrying to marry the first guy that comes along and how this can erase the images of the last month of his life that will haunt me as long as I live (not to mention my ongoing PD issues which are a “wonderful” recommendation for any possible groom-to-be of mine), but from this particular person I wouldn’t expect anything different, so I managed to accept the words and dismiss them as fast as I could.

But hey, these things are like weed, no matter how often you pull it out of the ground, they still grow back. It happened again. This time it came from a person I considered a friend, in the sense that I thought I could lean on her at least to the extent of the fraction of how much she had leaned on me for many long years. She had met a wife of an important person and it turned out that the couple has two sons, both single. Considering both the fact that this woman is not of an advanced age and also the fact that her sons are single in this country, I told her well in advance that it would most probably mean that they are too young for me, and that anyhow I’m clearly not interested in anything arranged in a similar way, now in my situation or never in general. She went on a relatively long trip with this woman and insisted on mentioning this crazy idea to me again on several occasions, even though as it turned out she never ever mentioned to her friend that I existed in the first place. She had to “secure her position” in this important family first, so she had to make sure that I don’t jeopardize it in any possible way. Then all of a sudden she calls me last night to tell me that I shouldn’t have hopes, that she apologizes if she kept me falsely hoping that I would marry soon????!… because you know… both her sons have a… PhD title! Yep, you heard well, a PhD title. OK, just like many other people in this world, and with that?? (much more important would be the fact that they are some 10 years younger than me, but she doesn’t care about the age difference at all). Well you know Tanja, you don’t have a PhD. You’re not at their “level”. Differently speaking, I have nothing to look for in those circles. Besides, they’re very well off as well and travel around the world all the time, they wear just famous brands, they have perfect complexions and great looks… WOW WOW WOW wait a minute, hooold on…. I had to pinch myself to verify if that was just another of my usual nightmares or some badly twisted reality, but very sadly enough it was more real than these words I’m typing right now. Later I was lying in my bed in darkness, staring in emptiness and trying to count how many times exactly she offended me in those descriptions. And what’s even more weird, I still can’t get why. I didn’t ask to marry anybody. I didn’t ask to meat anybody’s friends, no matter if they’re good, bad, handsome, ugly, educated or illiterate. I didn’t ask for anything AT ALL. I don’t give a damn. The only thing I do give a damn about is that I don’t have a father anymore and that I miss him more and more with each day that passes without his return. I didn’t ask for anything, I didn’t express any opinions, I didn’t explain the hardships I found myself in since the dad passed away… and most importantly, I never offended her in any possible way. So what on Earth was all this about??

I don’t have a PhD, that’s a pure fact. I “only” have double Bachelor of Arts degree which I earned after being a student of generation in both my primary and special secondary school for very talented kids. God wasn’t very generous with me in this life and I don’t have much extra special qualities and abilities apart from a few talents, but the only thing I’ve always had in spite of everything were “brains”. Or simply speaking, I’ve had that IQ somewhat above the average and it helped me stand out and recompense for all the other things I lacked and all the health problems I had to face. That head is one pretty big reason why I’m still alive, in spite of the episodes of truly total occasional disability due to a really hard case of PD. And now this woman calls and tells me that I’m not smart and educated enough to be introduced to some people, that I’m simply not at their level. When agoraphobia wasn’t limiting me, I was attending conferences with really important people and translated complicated things in real time. I think I knew really well how to act and talk in front of even famous people in my country and abroad. And now, all of a sudden, I’m unfit for a conversation with her friends because they have a PhD? What kind of friends do they have, just those with the same title? Speaking of that, I failed to inform her that there are postdoctoral studies nowadays as well, so I’m wondering if these guys would be fit for talking with those people who took their education even further…

To sum up… I’m a woman without male protection any more, which is bad by itself. People pity me and take me much less seriously. I’m not educated enough, I’m not rich, I don’t have expensive branded clothes, I don’t travel the world in the first class and visit 7 star hotels, and I don’t have perfect complexion nor I can boast of some drop dead beauty (by the way, I’ve never heard that grief made anybody look particularly nice, shiny and beautiful). All in all, I’m a total loser, unfit for either scientific or rich circles. I don’t belong anywhere. Maybe I’m not even fit to write these lines, as I don’t have a PhD. I’m just curious, if anyone with PhD is reading this, how important is that title to you when it comes to human relationships? And do you occasionally just speak with common mortals like me?

I forgot to mention, the woman who attributed all these “wonderful” qualities to me doesn’t have a PhD herself, which makes me wonder how well fit is she then for making friends with this family. And she can only dream of speaking English the way I do. But that doesn’t matter I suppose, she must be much better person than me for some reason which I’m obviously unable to grasp. Intellectual flaw of mine, I’m afraid.

Childhood memories

As I was going to let the dogs out this evening, I discovered a little girl’s hair ornament imitating a string of multicolored pearls with Hello Kitty decoration lying in the corner of the corridor between our and the neighboring apartment. It must have been the neighbor’s little daughter who lost it, so I picked it up and secured it on the wall right in front of their door so that they could see it first thing tomorrow morning.

Maybe she has already forgotten about it, or maybe she was complaining all evening how she lost it and how much she missed it, children get attached to things which you would never believe they could care for that much. Then when they grow up and search for some favorite special memory from the old days, it often happens that if they find it they end up being disappointed with it, because they remembered it as something extra beautiful or very extra special and charming, only to discover that that long sought charm vanished for good.

This hair ornament triggered one similar memory from my childhood – it was a sunny day and I was playing with a tennis ball on our terrace while my dad and my grandmother took care of me. You surely know how nasty tennis balls are when they bounce really high and mine was no exception – it hit the terrace ceiling and jumped all the way down into the terrace of the neighbors living at the ground floor. I stared in disbelief and some strange misery possessed me as I saw the old lady come into her terrace, take the ball, say something bad about how my intention was to throw things at her head after which she came back inside, slamming the door and shouting that I wouldn’t see that ball ever again. Ok, one simple tennis ball, that should be something easily replaceable, right? That wasn’t the case back then in my country, tennis had been the sport of the noble and rich and it only started having its first appearances in front of the massive audience with the success of few older sportsmen, Monica Seles being the most famous among them in the times when I was growing up. We had only that one tennis ball in the house, and I received it as a present, along with one of those ancient wooden heavy racquets I literally adored. First my grandma and then my dad went down there to ask for the ball and to explain that I was just a little child who surely didn’t mean any harm to anybody, but she insisted that this small ball could have meant the end of her days. I sadly pondered over my little loss for several days and I was promised to receive another ball soon, when the old lady for some reason changed her mind. She sad she felt pity for me, but that she was still suspicious that the dad or granny could drop down something much heavier and more dangerous on purpose… 🙂 I could have never imagined the two of them being capable of anything similar, but the neighbor trusted no one.

I was out of my mind with happiness when the ball returned and I never used it on the terrace ever again, scared that she could definitely not return it any more. Later I got or bought those nice three ball packs of all sorts of famous brands, there was even one period in which I very happily tried to play tennis almost every day and it made me contented even though I never had any sort of true talent for it, but I always remember that one particular ball from my childhood. On one of those little “training” sessions I was hitting balls right next to the court where a tennis coach held a proper class for some young couple, and I noticed that she had dozens and dozens of balls that she intended to leave behind and dispose of. I approached her and saw that all the balls had the “US open” print on them, so I asked her about them. She said that she coached some juniors who participated even in Grand slams and that these balls were definitely from New York – balls get replaced quite often during matches, especially because they “break” or simply soften from hard hits, so when the event ends they should all end up in waste, but coaches often collect them for the first beginners’ practices. The softer the ball is, the easier it gets to make it bounce over the net – you surely can’t get the precision out of those shots, but you can practice the technique. What I saw in those balls was primarily US open souvenirs, so I asked her if I could have some, knowing that it was highly improbable that I’ll even attend any Grand slam tennis match. She packed an entire bag of balls and handed it over to me, telling me that she really liked my determination and love for the game.

That bag is still in one corner of the living room, behind the door. There is an open space there left after the big wall closet occupied the place intended for it, so what was left served us for many years to keep there bulky memories of various sorts. I don’t know what happened to that first, precious ball. It could be easily there in that bag of Grand slam memories, balls hit maybe even by some old important players as well. If I find it, no matter how long it remained there temporarily forgotten, it will still carry the weight of the past times and bring back the memories of that afternoon and voices of those three people who are no longer among us. The neighbor passed away several years ago, my granny and my dad are together now at that far away cemetery out of the town.

The old lady wanted to destroy that yellow-greenish object, failing to see anything good or important in it. Yes it was just a ball, but that ball makes her as well live even today in my thoughts and in these lines. It also reminds me how much my granny and my dad cared for me and tried to make me happy by helping out to restore happiness in my life in any possible way.

I wish I could talk to them both, even just only one more time. I miss you guys so very much.

The most important thing in life is to – stay alive

Yes, it’s all about good health, overcoming illnesses and staying eventually alive, it’s not a trite phrase by any means. Because when you’re very sick, you can’t do anything. You can’t even just think clearly or grieve as you lie in bed, everything disappears in some surreal painful haze in which you reach the point where you beg to get a bit better so that you could at least suffer properly again.

What brought me to these thoughts? I got sick, again. It was some sort of respiratory infection gone wild probably because of my weakened immune response due to everything that happened in the last 3 months or so. One of the last useful medical tips my dad shared with me shortly before he died was that when your system lacks something and you start running on your body stores of the elements essential for its functioning, you have more or less three months left, unless you replenish your stores. It’s like a car without enough gasoline, reminding you to visit the nearest station and refill your tank. If you fail to do so, you can still cover some decent number of miles till the engine shuts completely down. It’s been almost exactly 3 months since this whole horror started, months of running, carrying, lifting, fetching, fighting, discussing, agonizing, taking care, witnessing the end, arranging funeral, taking care of the grave, respecting memorial dates, facing the places I haven’t seen in more than 7 years, grieving and crying and not sleeping, not eating properly, not stopping at any “gas station” along that mad road. I think that I was anyhow on the verge of collapsing, even without virus / bacteria that dance in the air at this time of the year.

First, there were some horrible chills and fever rising and falling in some desperate attempt of my body to resist the attack. 48 hours later I was in the bed in the middle of the night dreaming while I felt widely awake, I “saw” the “admittance ward” of the realm of the dead and some very nice and helpful deceased people who gathered to welcome me… I saw an entire river of those who passed away moving slowly down some hill, searching for their place. There were some strange ball-like constructions where as they said the most intelligent among them work on various cures and preserving options for the mother Earth, ball shaped rooms filled with some grayish substance necessary for our planet to keep on spinning for many more years. Spooky? Quite right.

Then I somehow semi-consciously snapped out of those melting images and made some effort to move in the bed, which was extremely painful. Next thing I realized was that the place I occupied previously in that bed was so hot that it could start steaming in any minute. I made some further effort to grab the thermometer and it took me a while to grasp that it showed something over 102. Wow. I had such fever only twice before, when I almost died of measles at the age of 7 and once when I was talking nonsense due to some very bad bacterial infection. Admittance ward and preserving mother Earth. That didn’t sound good. No way. Then I snapped back into that strange world, right where I stopped. I went to search for the dad, but they informed me that he was no longer on that “first level”, that he moved further or higher above. I remember that I was unhappy because I wasn’t able to see him, then I snapped back to the reality of my room again, my head seemed even hotter than before.

Next 48 hours were quite delirious, I was moaning, crying, taking pain / fever meds every 6 hours but that was hardly doing anything as I was in terrible pain, every muscle and nerve ending gave its best to produce the strongest pain possible that at some points it seemed that dying would be quite a merciful solution. When I would get very close to dialing ambulance to beg for some painkilling injections, things would get better from meds and so on, till the dawn came out and I dragged myself to bathroom… I opened my mouth, then I reopened it just harder and stared in total disbelief. Tonsils and everything else covered with thick layer of white substance, painful as if I were swallowing knives. And it was Sunday. Doctors covered by insurance don’t work on Sundays, hospitals don’t admit patients with sore throats. There are private labs and private medical care. Money. Ok, let’s apply dad’s teachings and my experience… I took out penicillin based antibiotics once again, broad spectrum, swallowed two pills, there was no time to lose. I could have hit the bacteria, but I could have missed. Equal chances, although it usually works for the infections of the throat. By the evening I mustered strength to drag myself to the lab and pay for the swabs of my throat, just to be sure. If I got it, swabs would be clean, as the antibiotic already got into the system. If not, we would at least see which antibiotic to take. No doctor could do better. I also ordered some blood work, just in case.

It takes some time for the culture from swabs to start growing, so I went on with my antibiotic, feeling totally off and partially on on alternative basis. There was some nasty bleeding from the inflamed nose and throat as well, so yes, ebola came into my mind’s picture as well, but nobody I know went to Africa… can I be sure? Stop being paranoid…
Then I got the result. Swabs clear. Totally perfect. Bloodwork? Iron depleted. Totally depleted. I was running on depleted stores for quite some time as it seems. Did I check the dad’s tumor marker? Oh yes I did. Scared as hell till I saw the result. Totally normal.

Conclusion? Three months of bad eating and nutritional neglect destroyed my immune response and turned a quite usual infection into a life threatening condition. What seemed “just a sore throat” should have been treated in hospital conditions as it had such a dramatic appearance, but in terms of medication, I did a great job. Dad would be proud. I’m sure he would. Hopefully, iron values will rise as well with supplements and hopefully life will continue as always…

Is it bad luck again, halting me one more time this year after I tried to do something productive and meaningful? Is this a permanent state or will this bad period finish ever again? No answer as usual. I just know that health matters very much. You can have everything else in this life, but it loses every meaning and purpose if you lose life. Because if you are not alive and healthy, you can’t even be sad and miserable. It feels as though there is a gap of all these past days in my grief, gap that consists of shock, loss of strength and switched priorities. From being extremely sad and depressed you turn to preserving your own life, no matter how much invaluable it seemed to you in depression.

You simply realize that your life is the only thing you really (though temporarily) HAVE in this world. Nothing else can matter that much.

Hang in there

There is one good, middle aged man in my neighborhood who was born with a certain degree of disability due to which he has numerous health problems. I didn’t even know he existed, nor that he lived just several hundred meters away from me, because only in the block of adjacent buildings where I stay there are more or less 1,000 souls, not to mention that this whole area of the town with these same buildings consists of 13-14 such identical blocks. In reality, we are one entire little town by itself, condensed in not that much vast land area, there are so many people living literally ones on the top of others packed in apartments with mostly insufficient number of square meters yet you rarely know the person living next door, not to mention somebody from a different floor or in a different building within the same block. It wasn’t like that in the past, not even in that not very distant past when we moved in here a bit more than 30 years ago. People cared more about other people and life wasn’t so much about material possession and personal vanity as it is now, I sincerely and dearly miss that country called Yugoslavia I was born in. If I were still living in Yugoslavia (and I’m not, even though I haven’t moved an inch away in these last nearly 4 decades), the man from the beginning of this story would be in much better shape today. He would have completely free health care, some personal income due to his very legitimate disability issues, access to daily meals for people with income problems. He would have some dignity in this life and more people on the block would know he existed and offered some help, because social services would work on his integration in the community.

In his twenties, he used to live in Yugoslavia as well, and his father’s company helped him the best they could by letting him work in the company’s kitchen for their workers. He carried things around and peeled some vegetables, he had some little income and full insurance – those were the best days in his little unfortunate life, days before the world slowly but definitely started tumbling down on him.
Yugoslavia got torn up in pieces, swallowed by its own inhabitants who turned against each others, failing to understand that the consequences of these actions would harm only themselves and no one else. His dad’s company first suffered the beginning of a bad economical crisis. Then his dad passed away, failing to buy off their living space from the state in the midst of that crazy stellar inflation, as we all did and thus literally saved ourselves. His dad’s company eventually had to be restructured in the process of privatization, obligatory in the transition towards capitalism, but nothing prevented bankruptcy from happening. He lost his little job and remained with his mom who inherited his dad’s retirement money, as she didn’t have any income of her own. Life went on while his mom could take care of their lives in every possible sense, but in the end she passed away too several years ago. And this is when life stopped. He remained completely alone, lost, in Serbia now, with no means to live this life and expired ID, hidden among us with no electricity, with unpaid bills and no food for days in a row. He can do some things, but he needs to be told exactly what to do and he has to be partially supervised, which makes it almost impossible for him to find some kind of stable work position in this country. I found about him for the first time when an old lady involved in an organization for saving stray dogs moved in with him to help him out in exchange for the accommodation for her and the dogs she took care of. Things got better for a while, bills got payed again, there was some food on the table every day… but the lady’s age is such that she progressively needed more and more help for herself, and somewhere by the time my dad declined she left the man’s place as it seems for good. Dogs were took over by the organization, the lady was accepted by some relatives and he is alone again, growing older himself and becoming more and more helpless as time goes by. My mom helps him with food as always in these last years as much as she can, but life has hanged for us as well. I remember that in the middle of my worst panic ridden despair when I didn’t go anywhere, I secretly and deeply feared that I would end up like him and it scared me to death. Those fears returned all right with income problems and the shock my dad’s passing away caused in my little life.

I saw him today. I turned round the corner as he was emptying some huge bag of high class garbage into a container, obviously a chore he was asked to do for someone in exchange for an equivalent of a dollar or two, or a sandwich for that day. It was a sad contrast to see him, a man in a clearly very neglected state and torn clothes, throwing away very expensive waste items. My heart sank as I said hello to him, he wouldn’t notice me otherwise as his vision deteriorates heavily as well. He knows about my dad from my mom, so he asked how we were doing. We were standing in front of that container, the sky was heavy and black as the depths of my soul, and this person who’s lived genuine hardships asked me if I was coping, when the right question would be if and how he is coping. I said I was managing, somehow. He looked firmly at me and smiled, saying: “Hey, hang in there. You have to. Got it? HANG IN THERE.” Then he waved goodbye and wandered away as I stood in disbelief. Honestly speaking, what does he have to hope for in this world? He is doomed to soon lose even the bed he’s sleeping in when bills accumulate again, this time to the point of no return. He would have all the right to totally give up. This person who has sometimes hard time getting simple things wanted to make sure I got it that I had to hang in there. Ashamed, sad, amazed, humbled, shaken… that’s how I felt returning to my realistically really modest home, I have no idea how it feels to be wealthy or even just well off. I looked around me and thought… what would he give to exchange places with me and have my life, with all its hardships? Probably everything. It would be for him as if somebody had taken stars of the sky and spread them in front of his feet. Or it would equal touching that distant sky above us. He would be extremely happy. And I’m so miserable.

How is it possible for people to differ so much in the same circumstances? No matter what, if somebody like him tells you to hang in there, then you really have to do it. Such messages can’t be ignored.

Battles are inside

It’s not the first time that I feel this strange distinction between the storm going on in my inner world and the serenity of the reality that surrounds me. Things in life are very plain if you manage to see them for what they really are, objectively, detaching yourself from the emotions you attribute to them. No matter how hard we try to run, fight, push, pull, squeeze, beg, drive ourselves crazy in some desperate attempt to change the course of imminent things,life blankly follows its own rules. And life’s rules are much bigger and stronger than that small dose of electrical energy that’s pulsating in our bodies while we’re still technically alive. Substantially speaking, life is simple. Life doesn’t divide things in good and bad, it doesn’t judge or analyze, it never gets happy or sad over its own actions. There are processes that have to be carried out from the beginning to the end, and life infallibly fulfills that mission. It does the work, but it doesn’t care about it. It’s us people who care, not life. This realization is one of crucial moments in dealing with panic disorder, that split second when you realize that you’re having all sorts of scary thoughts, panicking, drowning in a glass of water… over actually nothing. Nothing is going on that makes you feel that way, it’s just how you feel about something you want to do or situations ahead of you. Plainly put, it’s not life, it’s you. Understanding this can make the difference between suffering a full blown panic attack and halting it when it made only half of the damage. After some hard practice, it can truly work.

When it comes to real life events, it’s a lot harder, even though the principles are almost exactly the same. My dad got sick at some point in time. When exactly and how, we’ll never know. His cells grew and divided for many long years without particular problems. Or if there were problems, his body had ways or means to fix these mistakes. And on he went this way till some day when some big, irreparable mistake happened. Cells continued to grow and divide, healthy ones in their usual way, unhealthy ones in some fast, vicious, mistaken way. This process continued as he was living his life calmly and peacefully, oblivious of what was going on inside. When he got the symptoms, it was already too late. What we witnessed was only the last phase of that for a good reason called malignant process. Bad cells grew right through the most important clusters of good cells and ended my dad’s life, dying instantly in the battle they so triumphantly won. And then there was silence. Simple, bad, dead silence. It happened, it had its course and then it was finished, life did its job. All the rest – all my physical and mental struggle, all the images that still come back in horrific flashbacks day and night, all the tears, all the sorrow, all the questions (why this, why him, why us…), all that denial, anger, bargaining, depression and occasional painful acceptance, those are all just human created extensions of this story. The story ended more than a month ago and I’m still shaken inside and it’s still shaking every thing in my life, I’m still struggling and drowning in that small glass of water… but there is nothing in my reality OF TODAY that’s provoking this. The only difference between this situation and a panic attack situation is that I have a reason for my feelings, while panic has no foundations in reality. There surely is a reason, but it’s already sealed as a past event. I can’t change a thing about that reason. I can’t travel back in time and change things that haunt me as being something that I could have perhaps done differently. I can’t escape to future either to run away from the intensity of this recent loss. The only thing I have is now, this present moment. And as nothing bad is going on right now (at least nothing I’m aware of), it turns out that I shouldn’t be so shaken. People who manage to put this truth into action are on a good road to mastering that Zen’s full embracing of the reality in the present moment. There is nothing bad about holding onto this truth, it can only spare you from all that pain that actually serves no other purpose than to harm the person experiencing it. Yet it’s so hard to make this detachment. Is it guilt, the feeling that you’ll forget the person you loved very much if you no longer experience pain? Or perhaps the failure to put this into action is some sign of emotional immaturity or instability? I don’t know the answer. What I know though is that I’m still very much battling with myself, paradoxically still fighting against a finished illness, worrying constantly, reliving the details and painfully looking for the exact thing that went wrong in the first place. I do the chores of the day, I suffer, I live, I suffer, I sleep, I wake up and I suffer again. And none of this ongoing agony is real now, there is stillness of an autumn night outside, occasionally interrupted by rain and blows of wind against the windows. There are no battles out there, not any more, battles are all inside. But there is a huge step between understanding and implementing this.

It’s all life

Something crossed my mind tonight as I was washing the black shirt I wear a lot these days. I’ve been wearing only black things since dad passed away, but not really or only because it is the tradition in my country – this is how I feel and this is what the mind naturally chooses to do, it’s somehow that the brain becomes color resistant in grief – at least this is the best I can describe it with words. It totally is not me though to wear only black, so I had to buy some shirts, the one I was washing being one of them. My mind wandered off in this process to the phone conversation I had had earlier in the evening – I wasn’t feeling well at all in the first place when the phone rang, and there was this person calling with lots of shiny and glittering details about going on a luxurious holiday. Not a word about me, my life, my feelings, if and how I’m coping. Just about how great the place is, how much it costs, how special the accommodation will be… I sort of couldn’t grasp why I had to endure listening to all that boasting in this period of my life, with or without the situation with my dad I’m miles away from such a lifestyle and people involved in that story. Then as I was wrenching the shirt, I suddenly realized how firmly black its color is and how different life is for every one of us in any given moment – somebody is embarking on a high style journey, somebody is as we say wrapped up in black, somebody out there is being born at that very instant, somebody is celebrating a birthday or an anniversary. Somebody is getting married or divorced, somebody is sick or dying, somebody is being buried. It has always fascinated me how so many different things could be going on in the exact same fraction of time on this planet. Good, great, bad and horrible things, all together. And it is all life.

Farewell dear daddy (1936-2014)

tata

We fought that horrible battle all right, me, my dad and my mom, all alone. It is only today that I mustered some strength to come here and say something, make myself heard. I’ve never experienced something that much dreadful in my life and no matter what anybody can tell you about cancer and how brutal it is, it is only when you see it firsthand taking away one of the closest persons you have in front of your very powerless eyes – which I don’t wish on the worst person in this world – that you can truly understand why it is considered so hellish. It was cancer all right. And of all the damn cancers in this world, the worst and the deadliest one. Pancreatic cancer. We have two ultrasound results, several X ray images, gastroscopy results and the CT scan, but there are no biopsies to be dead certain, although it fits the description perfectly. There was no time. Time was leaking through those tiny space between our fingers too fast for anything to be done. The metastatic lesions were first discovered on August 23rd which was an incredible shock for me. Today, after downpours and downpours of tears I am in much greater shock knowing that my father lived only 20 days after his diagnose. He passed away on September 12th in such a terrible way, suffering from pains and in some inexplicable agony, on my very hands. I did manage to beg the ambulance to arrive and he took his last breaths in their presence, attached to the ECG, which showed flatter and flatter line, till everything got hushed up and ended in surreal silence. That silence still haunts me whenever I move around the house, it is as if I need something massive like an entire mountain to fill the emptiness that is left behind him.

There is no peace, there is no comfort, there is no resolution. We didn’t get a proper chance to try to offer him any sort of cure, even though there is almost no cure for pancreatic cancer, even when discovered early on, let alone at this stage. It’s the most ominous cancer of all not only because of its astonishing aggressiveness, but because in the majority of cases it doesn’t give you hardly any proper warning till it metastasized. Till it’s too late, for everything and everybody. We didn’t get a proper chance to say a real goodbye to one another because all of us, dad included, didn’t believe first at the diagnose, then at the possibility that it could take him away at such horrendous speed. It is just as bad as it can get when cancer is involved, but even pancreatic cancer usually gives you several weeks or several months if not a year or two… to finish some unresolved issues, to express wishes, to give instructions to those that will stay behind you. We weren’t that lucky. There is a very slim chance to get hit by a lightning or win a huge lottery prize, but such things still strike. We hit the jackpot when it comes to bad luck in life… or it was simply as one doctor said that my dad was such a strong and tough man that he carried out the cancer story oblivious of it till its end on his two feet, which is very unusual and quite remarkable. Considering all his other lab results and the fact that he never really lay in bed for more than a couple of days with a flu in spite of the diabetes he very successfully fought with for 22 years, he could have lived for another 15 years at least as they say. Maybe, maybe not. Many times doctors actually don’t have a clue. What remains incredible is that my dad on August 9th worked strenuously in his garden, drove the car and carried home kilos and kilos of tomatoes, feeling just slightly more tired than usual. A month later, we had to organize his funeral.

Preparing the funeral was honestly a story by itself… Funerals are digitally organized in such an incredible manner in a rotten country where my dad was admitted to a hospital which is in completely brutal state – old beds with mattresses falling apart, no pillows for everybody, no blankets, no clean bed sheets for as long as you stay in hospital, cockroaches dancing around rooms, and on the top of this mountain of misery, a horror story contrast – blond, young female doctor, perfect style and makeup, pretentious, lacking any sort of empathy or human emotions, but obviously pretty rich. That woman could easily buy full equipment for those miserable 5 beds in that sad men’s endocrinology room and not even feel any budget difference, yet she was much more interested in kicking my father out of the hospital when it was confirmed that he was a palliative, i.e. lost case. This person who filled my father to the fullest with insulin to clear his ketoacidosis in order to discharge him as fast as possible probably never heard that insulin is among other things a growth hormone, and that such a speedy flush out of keton bodies is not recommendable at all with cancer patients because it simply speeds the tumor growth, yet she still had a nerve to verbally confront me. I just wanted my dad to have a proper care, I was quite aware that hospital sucks in many ways, but still it is a place where he could get full time IV fluids, injections of pain medication and TPN as towards the end he ate and drank less and less. She shouted at me in front of him that “he can’t live in hospital, you know!”, to which I replied moving to a safe distance from him – and you, with all your “medical knowledge” are trying to say that he will live? Here, at home, or at any other place? Live? The following day when she discharged him, I told her that talking that way and with such a tone of voice in front of a dying patient is not ok at all, and that she shouldn’t work with people. I’m not ashamed of what I said, because it’s a pure fact. My father was dying. I could have flipped, shouted, cried, fainted in front of her, yet I was always very quiet and polite, holding all the horror and grief inside. Even if I were impolite, she as a medical worker should have understood it, but it was clear enough that she had no compassion at all. For Christ’s sake, my dad, my one and only dad was dying. Then something very painful happened – her expensive mobile phone rang and she answered it even though it was a private call with these words – oh hello daddy, did you finish the paperwork? It was as if she stabbed me right into my pancreas. I was counting last days with my dad, while she treated me like hell and spoke to her dad with whom she had indefinite time at her disposal. God forgive me, but I wished her all the worst in my mind many times. I still can’t understand how such a person can be a doctor. She told me that I should be grateful instead. Grateful? Of what? Of megadoses of insulin that contributed to speeding his death? Of prescribing a patient who barely ate 22 i.u. of morning insulin on the day 5 in hospital due to which he entered hypoglycemic coma and his blood glucose was immeasurable, they barely managed to bring him back to life? Of injecting him 18 i.u. of insulin on the day he left hospital so that on that very evening we noticed huge sweating and measured glucose at 2.4, due to which we loaded him with all sugar he could eat (he hasn’t eaten that much sugar in last 22 years)? Of not instructing me how to use insulin pen and telling a nurse to do it, who failed to inform me that a loaded pen isn’t supposed to be kept in a fridge and that his insulin type was a mixture, which means you have to strongly shake it before injecting it so that it can resuspend? Of letting me stand while she spoke about his death, sitting in her chair with her back turned to me, staring at her computer? Of not giving me any blood values so that I could compare values from before entering the hospital and his progress? All in all, I should be grateful to her for doing her job, being such a lousy doctor at the same time? Ironically, my dad was a doctor, too. If she had no compassion for a human being, she could at least have had understanding for a colleague who used to wear that same white coat up to 13 years ago when he retired. No way, that was too much to ask I suppose. She said she never saw something like that – “something like that” was a person, my dad. I believe her. She is most probably younger than me, so her experience is really “huge”. Plus there is one massive point she missed in this whole story – she most certainly isn’t and probably never will be an oncologist, if she were one she would see much worse tumor marker values every day all right. In the end she told me that I had a bad attitude and to get lost… I don’t have words for your attitude, I replied and then I obeyed the “getting lost” part… while I was shutting the door, she cynically shouted “goodbye and have a pleasant day”! I opened the door again and said PLEASANT? I mean, my life is falling apart, my mind is falling apart, my family is falling apart and I’m taking a dying patient home where I don’t have a private nurse, IVs and everything else he can’t take by mouth, and she says have a pleasant day? May things get this pleasant in your life, I said, and slammed her door.

Slamming her door meant opening door to hell itself in our modest home – there was no way to afford private care, dad was trying to convince us that he was managing, he fought to eat, drink, take meds, but every day he went rapidly downhill, one day was like an entire month for some other pancreatic cancer patient. I constantly measured his sugar levels and gave him only half the amount of prescribed insulin when needed… we changed diapers, we moved him up and down as he was constantly in pain and choking, in spite of the largest doses of opioids he could take. His stomach was filled with fluid this darling doctor and all other doctors in town refused to drain to give him a little bit of relief. On the last evening I sealed a morphine patch on him, but he didn’t live long enough for it to start working.

Then I had to survive the ambulance pronouncing death, but with their death certificate he couldn’t be buried. We had to call a medical examiner to come, inspect the body and allow the funeral. Medical examiner’s office immediately informed private undertakers who called from a hidden number so that we couldn’t know who made the connection, because that’s illegal. It’s our right to chose the funeral organization and they tried to impose the people who give them percentage. Horrific. We shook them off successfully, but had to be in the room where the medical examiner examined the “body” in our presence. For me, it was daddy. Daddy sleeping. I still couldn’t grasp what happened. Then we had a visit from a legal undertaker… I’ve never seen such an efficiency. I was still in shock an disbelief when this man put an iPad in front of me and told me to choose a coffin, equipment, cross, etc. “Just flip the pages and when you find something you like, press the upper left corner to see the price…” Something I like??? What was he talking about… When my grandmother was buried 17 years ago, there were printed catalogs and my parents took care of everything. I’ve never buried anybody in my life. Now, all of a sudden, it all felt on my shoulders, hardly 2 hours after his death. Everything was digitally arranged, one click her, one click there, receipts, pay this, pay that, every step of that funeral had some price. Abominable, as it was happening in a country where patients lie in cockroach infested hospitals and where a retired medical doctor with perfectly good medical insurance couldn’t “live” in hospital, being a dying case. Then my mother ran to the bank and I was all alone and shaking when the coffin arrived. Three strong scary men and a tiny one, who was supposed to dress my dad. And I was alone. I have PD, you remember? My hands were shaking out of control, yet I helped with everything. Mom returned on time, but she couldn’t bear to go out as they were carrying the coffin out of the building. I went with them, alone again. I watched them put the coffin into their vehicle and I had to make sure they fastened the proper lid onto it. And to wave a final goodbye forever, completely alone.

That night I got sick with flu. Exactly 7 days earlier I went to my dad’s GP to get a whole bag of meds with which I was supposed to carry out that battle with cancer at home, and there was a girl who said she had a fever and sore throat. Great, I thought, but then I forgot completely about it. It turned out that the virus didn’t forget me. By the end of the next evening I was sad like hell, had a fever of 101 and horrible pains in each and every muscle of my body. I cried because of what happened and how it happened, I cried of despair, anger, fear, of physical pain… but one thing kept me still in one peace. “If dad could endure what he endured, I have to survive this as well and put myself onto my feet in two days to be at that funeral”. He dealt bravely with cancer pain, so there is no way I could fall apart. No way. Funeral… even the very idea of it was terrible, because of the event itself, but also because as he didn’t express any precise wish, I wanted him to lie together with my granny. That graveyard is TOTALLY out of my comfort zone. Out of town. I’ve never been there in these last 7 years. It was out of question. And now I had to go there and not go crazy in front of those who were to attend the funeral. Quite a mission… I fell apart a bit when we reached the grave and when I saw the grandma’s tombstone and her picture, everybody thought it was just because of dad, only me and my mom knew what it meant underneath. I brought this picture of my dad with me to leave it on his grave, this is how I want to remember him. I took this picture with my camera, with my own hands and I brought it as my last personal gift for him. He was a man who loved life and his garden more than anything, always smiling, always pushing ahead, always walking around, always fixing something, things, people, animals… but he couldn’t fix cancer. I don’t want to remember that defenseless, weak, thin man he turned into and the scenes of dying, because by that time, my dad, the person who he really was had already left me.

I don’t know if he can hear me now, but there are so many things I’d still have to tell him and I didn’t have time for it. I wish he could return for one night only so that I could tell him how much I loved him and how much I miss him. How sad I am that he left this world knowing that nothing is safe or secured in my life, unable to be proud of me in any way. I would need him to speak just one more time, to tell me that he wasn’t totally disappointed with me. PD destroyed everything, I fought the best I could, but I needed some more time. I’m sorry daddy, but I was unfortunately born the way I am. I can only promise that I’ll try to continue to fight somehow to make things better, but I can’t promise that I’ll succeed. I wish there were less emptiness around me. I wish you were still here… Damn it, I miss you so much, why did you have to go, and in such a dreadful way.. 😦

Rest in peace dear daddy… and wait for me up there somewhere. Your sufferings ended, and mine will some day as well. I watched the movie about Frida Kahlo the other night again, she was a famous Mexican painter who had many health problems and eventually died in horrible pains. The movie ends with her words – “I hope the exit is joyful, and I hope never to return.” My daddy repeated in his last two or three days how horrible life is and begged to die as soon as possible. It was terribly hard to listen to this, but I understand him. Psychologically, I’ve been carrying around so much pain for many years and I’ve felt so well the cruelties of life on my very skin. Somebody said – You don’t have to get killed to lose your life. I’m still here, but I lost my life many years ago. Now I lost my dad as well. I have no idea how I will deal with what future still has to bring for me, but I just hope that my little family will be together again some day, in some better place. No pain, no fear, no grief, no separation. Daddy, don’t abandon me completely, I beg you. Wait for me.

Battle for life

I wanted to write something, but I have no idea how a post like this is supposed to be written. There are no right words, there is no comfort, there are no answers. Just tons of tears and a profound sense of sorrow, deep like some hell pit and the smell of hospital disinfectants that haunt my days and nights wherever I move. I am afraid to type these words, but I have to – my father is most probably dying.

What appeared to be just a battle to get him out of diabetes induced state that went widely out of control and progressed to ketoacidosis, eventually turned into an ominous discovery of cancerous lesions in his abdomen. We still haven’t found the big one, THE ONE responsible for these lesions as he is still too weak for further aggressive testing, but doctors think that considering the general state of his health that this might not even be important, that it would be just a name to put on the type of cancer he has. For these doctors my dad is not the person I know everything about, he’s just a cancer case. They left me, mentally not very stable person, standing on my two feet while they were telling me these words that sounded so unreal and out of place and put on me the pressure of choice to decide how much of what they think so far I will tell him. If anybody out there knows the way how to lie to a retired medical doctor about his state of health, please tell me how to do it. He knows too much about medicine and suspects quite enough to be fooled around, yet I still have to give him a grain of hope so that he continues to battle for his life. In order to do it, I’d need some hope myself. I need to be strong. Have you ever seen a strong PD sufferer? Till several days ago, I hardly and rarely went further than around my building. All of a sudden, I’m needed – to figure things out, make appointments, find ways how to put him into a hospital in a tragically poor country with one of the worst medical mafias in the world, be the one to whom doctors speak, run around to buy medication and other things he needs, and that’s precisely what I’m totally unfit for in the first place. I’m somehow doing all this and falling apart, but it seems to me that such situations simply numb you to the point that you can process them without going crazy for good. I was managing my PD battles precisely because I developed mechanisms of convincing myself hard that all that dreadful anxiety was not real, that it was bogus, that it can’t harm me. Anxiety and dread I’m feeling now is not much different from what I’m used to, but this time it’s not bogus. Now it’s very real and I can’t do anything about it, which in turn scares me to death. This realization alternates with derealization all the time. What is going to happen? How will he handle it? How much time do we have left? What has happened and how? How are such things processed and survived? How will i survive all this? And of all diseases out there, why cancer?

My dad has been a support in my life in different ways and now life is going to get abnormally tough, change drastically for worse, especially because PD makes me disabled in many ways and I don’t have help. Everything loses meaning and importance. When I think of my recent digital battles, I fell like screaming – how could I’ve been so stupid to get worked up for something that seems like a complete nonsense now? All those things that miss in my life due to PD now seem way much bigger and worse. Who’s gonna give me a hand when my time comes? I don’t have anybody apart from my mom and dad… I would give my stupid PD limited life this very instant to extend his much more meaningful one if things could work that way. What’s life’s purpose anyway and why for some people it has to end in terrible suffering?

I’ve said many times that whenever I start something meaningful for myself in these last years, the moment I try to do something at least a bit beautiful, I somehow get drastically punished for some reason. I took the camera out all right, but what am I supposed to do with it now? I started blogging and found some very precious joys in this special community – I didn’t get many followers but I did make here a couple of very special friendships, big hugs and so many special thanks especially to Judy, Jim and Tammy – I love you guys, your amazing blogs inspired me to start doing something artistic again and your wonderful comments gave me strength not to abandon my newly developed blogging path. I don’t know how to blog now and if I can still do it, if I’m not here it’s because I’m doing really bad, not because I forgot you or this tiny blogging space of mine.

Life’s been very cruel on me, I need those closed fists of mine now more than ever. What’s more, I’ll hate my birthday now for as long as I live, it was on August 16th that my dad took the results of his first analyses and completely forgot about me and my birthday. My only wish while I blew my two tiny cake candles was for him to get better again, but it seems that such wishes never come true. I tried to stay positive in the following days till we got him into the hospital, I wanted to show you my first zinnias’ photos because I knew that later I wouldn’t have strength for it. Or better said, I still hoped that he just needed to be switched to insulin and that things would get better. I’m desperately searching for some grain of hope now, against all odds. It seems that these are the only battles I was born for, those against all odds.

Dear God, please help me, I beg you. Now it’s all in your hands.