Did not see it coming?

Having a good chat to someone the other day and, after a few tots of vino, I hear "your a con artist". I was not sure at that point how it was related, so I just resumed the conversation, not sure if it was a conversation any longer, more like words just falling from the gaping hole in my face. A sentence later and I hear again "your a con artist", now I know this person is serious, I sober up suddenly and ask what it actually meant? I was told I was a con artist because I made claims about my disease and the prognosis which are clearly baseless. I ask why they feel this way and I am told it is because I look too well for someone who has a disease with such a poor prognosis. I was never very quick with responses and it usually takes me a day or two to work out what I should have said, which is useless by then. I was pretty cool though considering and like a ferret tried to quickly ascertain what the motive was for the comment and if perhaps I had misinterpreted it. It turns out I was not confused at all and the comment was as serious as a firing squad. It turns out that the disease could all be just a matter of mind 'over matter', all in my head so to speak. I was told that I like to pretend to be sick and do the whole act so well. Last month when I was not feeling too well I battled and complained as men usually do and was told that I moan too much, turned out I had gastritis which had to be treated and after taking the medication I immediately felt a lot better and was back to my normal self. I tried to explain that my approach to the disease is to accept the information to be as true and correct as it is intended for treatment or assistance but not for the purposes of morbidity. I try to continue with my work and as much activity as I can, physically and mentally. I eat as well as I can afford, meditate, and try to find some peace in my art and photography. The assault continued to a point where I was asked to produce a letter from from my specialist that clearly proves or indicates that I was dying from this disease. I humbly had to decline because I had no such letter in my possession, but did offer to introduce other evidence to prove my innocence, which was an envelope filled with my HRCT scans as well as x-rays, lung functions, doctors reports and pathology reports. These are now being sent to their own GP for further investigation regarding my claims. So now I will wait for the Doctors findings. I was asked what I would do if it was discovered that I do not have Usual Interstitial Pneumonia, and that it is actually just all in my mind? My response was that I would be eternally great full and ecstatic to hear such news. I was then asked what I would do if it was discovered that I was wrong about my condition and they were right? .............I did not have an answer for that, as I had never thought of it like that ever....a 'wrong' or 'right'? I have been thinking about this a lot now because I had to try and work out what the motivation was. It would seem that if the disease did not start with the letter 'C' or did not get as much exposure as 'Aids' or if I was not deformed, bleeding, handicapped or broken in some grotesque way, it is not conceivable to accept that it would be too serious and perhaps some simple alternative remedy like sticking a pealed carrot up my ass for week would cure it. (I joke.....) How do sufferers of this degenerative, progressive disease deal with the emotional and mental side affects? I have no explanation as to why this person feels that I have conned them? I have no clue as to what the motive is for saying something like that? What I have realised though is that if the Doctor said you are going to die from a particular disease, then you had better get on with it otherwise you are going to embarrass and inconvenience a lot of people out there. Don't think you can just get better and get away with it. (OK, ok I joke again, but what else am I supposed to do with this strange information)

Sense of humour?

I have just recently discovered that I may be suffering from a fairly new and rare disease called called Humornesia???? It is apparently caused by stress and anxiety which in acute cases the sufferer is unable to recall or remember how to laugh or have a humorous experience. I thought it was just a load of crap until I conducted some of my own intensive research. I first checked out the signs and symptoms which revealed a lot about myself. So here of some of the symptoms, firstly the swollen bottom lip. The bottom lip actually swells to the point where it literally gets so heavy that it begins to get heavy and sag, in some rare cases it gets so heavy that it hangs completely away from the bottom row of teeth leaving them completely exposed. The next one is called "droop" ya it's when the shoulders start to hang much the same as the lip does, only this time the shoulders push down and forward which causes the head to constantly look downward. This may be the reason why the lip hangs forward when all swollen like that. So this covered the most obvious physical symptoms, so here are some other signs which are not always so obvious. The ability to speak coherently is affected drastically, so when prompted for a response from someone, the sufferer may only be able to mumble something like "mm" or "ha" but nothing more. When sufferers are able to speak they can only talk about "themselves" they have no way of feeling any sense of emotion for anyone else other than themselves. It is mostly made up of morbid concepts such as, wanting to die, or just wanting go to sleep for a protracted length of time. There are many other signs and symptoms which are too difficult for me to include here because I think I may be suffering from this disease. There is a cure however. One can receive both medical and therapeutic help, but I prefer the option of complementary care or what they call alternative treatment. The search goes on and eventually I find out how one can get help the "organic" way, the way nature intended. One can contact a qualified therapist and make an appointment which only lasts about 15 minutes, however one needs to allow some time for recovery as it can be quite stressful at first. One is first briefly interviewed by the therapist, then the ankle of either leg gets tethered to a steel hoop anchored into the floor. Then the therapist applies a swift kick to the groin (for men only) The pain apparently runs directly through to ones brain releasing a strong urge to strike back, hence the reason for being tethered to the floor. When one is able to get one's breath back and stand upright, one is confronted with the sight of the therapist rolling on the floor in a fit of laughter. After a little time chemicals are injected by some hormones into the brain like a jolt of electricity which release the laughter response and one begins to join the therapist in laughter and ones sense of humour returns...for the time being at least. Well they do say that the best medicines are not very nice. So I guess the best remedy for sufferers of Humornesia is a swift kick in the nuts. Laughter is the best medicine and if one finds oneself unable to laugh at oneself from time to time then best you go see your therapist or at least let your partner give you a swift kick in the gonads.

It's a brand new Year

Happy new year to all...I spent a lot of time thinking about what would be my new year's resolution for this new and exciting year to come, after all it better be a good one because the world is going to end next year..he he ya right. No seriously I plan to have a good year and wanted to wish for something huge, something that would contribute greatly to my happiness. So I wished for "INSPIRATION" I want to be inspired about something every day. I think that to be inspired is what everyone needs, so I am wishing that for everyone this year. Inspiration makes me feel alive and excited, it energises me and gives a sense of real hope and an urgency to follow things through, I wake up excited to create and produce and to be better and happy.

My new year started off great so I am already feeling that my wish has come true. My brother came all the way from Denmark with his partner and her parents to tour this beautiful country. They stopped over in Cape Town for a few days and gave me a new lens for my camera, how cool is that? When they left my son arrived with his girlfriend and stayed for two weeks......ha ha I have such a good time with him and his girlfriend is tooo cute I tease her a lot but she is so good for it and they seem so happy together, and that's really all I ever want. My son is eighteen and just finished high school.....Didi is still attending school but, they managed to do some work and save for the visit. My son Damian....passed his exams...ye!!!! and can attend varsity if he wishes to further his studies. That's not all......they both gave me money from an anonomous person to use for equipment for my camera..not sure why they wish to stay anonomous? cause it is so hard to say "thank you". So who said wishes can't come true?

I have sent my photos out and they are now hanging in various place, so I am hopeing to get some sales in for them soon. So?....so far so good......The universe is such a wonderful place....hey! that reminds me.........I feel saddened and still surprised to hear how many people still lack "Faith"..Hey guys!!!! it does not matter what you have faith in....just believe that something is watching over you ok.....Sometimes very shitty things happen and one wonders how on earth one will cope or get through the period. If one just hangs on to that rudder and stays the course it will get better, Goodness will find you, have faith and and just believe please....... happiness, goodness and peace will find you if you let it. Don't hide, just keep going and it will all pass. Have a great year and may you all be so inspired this year. Take care of yourself and always be kind.

Cheers to 2011

Risks?

I think I am losing my mind? On Friday 31st December my son will be arriving at Cape Town airport along with his girlfriend to come spend time with me for the holidays, so what's the big deal you ask? Well I have been looking forward to it for a long time and it is one of the main reasons why I worked my ass off on this tiling job. I needed to have money to pay Hilary back for my share of the airfare as well as have food and spending money. I saved R320 in notes and coins in a jar in my sock drawer, I also managed to keep R2000 from the tiling job after paying everyone and also had R1700 in the bank. Not bad I think, will be tight but I can do it. But! But! I still have to pay for my photos which I had developed and need to pay for the mountings. Which means I will have about R400 left and two days to sell enough photos to make up for the money I had just saved for the holiday. Why then did I spend it on my photos? Ha ha I don't know....which is why I think I am going nuts.........what the hell? I just had to get the photos done, just had to, If I did not I will not do it and once again put it off till I have money again which means going back to tiling or building something or slogging away on a construction site like I usually do dreaming of the chance to save enough for the photos...when I have enough something else will come up and I will do the sensible thing and get it sorted out and go back to working on a site to make more money to do the same thing over and over and over again. I never wanted to take a chance regarding my son's visit. I want it to be special and I don't want to have to worry about food etc but I can't sell out again. I have this chance this one chance to do something "I" believe in and can only prey and hope it works out. I did the maths.......I originally had eleven done....and sold five of those on my first presentation @ R380 each. Now I have increased my price to R450 because my cost went up slightly. So Now I have about R400 left in my pocket and 27 photos selling at @R450. In two days I have to sell enough to make the R3700 back which I spent and the rest will be for more stock so they can wait till the visit is over. Everything is possible I guess but if I sell nothing how will I get through the next two weeks or so with R400? Am I nuts or what? Oh well I just have to make this happen, I can be so irresponsible sometimes, or is it unreasonable? or selfish? shit I don't know any more, everything seems to have a grey area now.

Ok deep breaths......note to self "just have faith"

Disease

The past three weeks have been quite an emotional journey for me and so I decided to write about just that. This blog is about my experience associated with this disease, but also about me. Is it narcissistic to write about oneself? Not sure, personally I don't think so. I sometimes think that this disease has made me become, or should I say I allowed myself to become, more self absorbed. I worry about the "woe is me" mentality and also worry about the probability of the disease eventually defining who I am. My first question is this, How is this disease defined? is it a "terminal disease?" or is it a progressive degenerate disease with no known cure?" Will I die from this disease if not by accident and if so when and how long will it take? One might think that this could be a bit indulgent or perhaps too morbid, but how does one cope with day to day activities with the view of medium to long term plans. Sure I can be "in the moment" and enjoy the time that passes each day and even achieve some sense of self-fulfilment and happiness as I would without this disease. However, I surely can't just think about the day alone? surely part of my activity is to be part of creating a future and securing a tomorrow of sorts? This would be practical as well as responsible but, how does one do this without knowing the answers to my previous questions. Yes of course I must continue to contribute and be useful, but to what degree? Ok so here are some reactions I have heard from friends as well as strangers. I have been told that we are all going to die anyway so what's the difference? other than the fact that someone told me what will cause my death, most responded to say that they could be dead before me and so planning the future is something we do automatically no matter, no one can predict what will happen and when. I was also told that I moan too much? This was said to me because I work a full day of very physical work and at the end of the day I really battle with pains, so when was asked how my day was I had to say how I felt. I have also heard that I am a bit moody and not very social. Maybe I am just being too philosophical? but too my mind and considering that my life has changed quite drastically I would not be surprised if people saw me this way. I am not as social as I used to be, neither am I as jovial or spirited as I used to be. I do moan more than I ever have..."if one refers to it as moaning" all of these comments are quite true but not in context of what I am going through. I find myself very much alone, between groups of ignorant through to the hopefuls. I have been told that there will be a cure any day soon so I should not worry, I have been told that the disease is no longer a terminal disease and that with proper management patients have gone on to lead fairly normal healthy lives. I have been told many of the side effects I am going through are perhaps psychosomatic. So if I am unable to be 'hopeful' then I should try 'Ignorance' if I cant do this then it must be a psychological problem for which I can get help......everything at the end of it all is just a veil, not mine, but for anyone that is associated to me. It is easier to deal with daily topics and recognise behaviours in people that are more common and accepting than complicated issues which are full of questions and unknowns. I am a complex person, I do prefer to know 'more' rather than 'less'. I have had the same approach to things all my life and that is because it is what I know and understand, it is how "I" function. Any plans or challenges I am ever faced with are handled in exactly the same manner......I first gather as much information as I can, then I strategies and then put things to action, if the plan does not work I don't change the whole plan but simply parts of it. I will be happy with whatever outcome as long as I have done all of these things to the best of "my" ability. So? how can I plan anything if I don't have a clear idea of what I am dealing with? how can anyone move in any direction if there are simply no sign boards anywhere? I have lived my whole life, well as long as can remember, doing for others, it always gave me a great sense of purpose to serve and provide and to be available for others. Now that I am unable to do this I have found myself more alone than ever. The only way for me to participate in a normal social environment is to become what I am not....well again. I will never be well again.........I can deal with this but I feel it is too difficult for those around me to, and the only reason why I feel this to be true is because I don't have any obvious physical signs of my illness. In fact I still look very healthy and well. This is the paradox..........If the signs were obvious then there would be a natural common understanding and no need for complex mental arithmetic to figure out how to respond or behave. I can function like anyone else out there, I am actually very active but.......and here is a big BUT, I am not well, and this disease is getting the better of me, very slowly but still making it's presence felt. I am reminded of it everyday and I feel it everyday, every time I walk to my car and get inside and have to take a moment to catch my breath, every night I struggle to sleep and battle with pains, every morning when I cough and splutter like a fifty year old beetle starting up in cold weather. Once I get going I am ok for the day. So I have decided to not tell anyone any more about my disease, I have also decided to see a councillor and to somehow find a way to deal with the battle of the mind. I have also decided to do what is right for me and this part is going to be tough. It has taken me two years to find out that unless one has a significant other who will understand and help you through the process there is not going to be another who will champion for you and take up the cause. Perhaps it is just a natural way of separating the sick from those who can still contribute. A heard of buffalo only run a fast as the slowest of the heard when being chased by a predator...and this is because there is no need to do more than what is required. They don't panic, they stick together and they also know that the slowest of the heard will be sacrificed. This is completely natural and this action itself contributes to the herds survival. Perhaps all sickly people who do not have someone to care for them should be able to go to an island somewhere where we can all moan together ha ha. Hey I am joking......but I do need to stop worrying about what people think and just stay away or say nothing about it further. One thing is for sure though...I am not going to pretend to be well so that everyone else can become more comfortable with me .......they need to get over it I think.

Deer in the headlights

That's exactly how I have been feeling recently, I looked into the light and suddenly found myself frozen in my path not knowing where I was going or at what I was supposed to be doing? It's not fear or insecurity but, rather just an emptiness, like slowly slipping into into an abyss, a void or black hole. Every effort I make seems to lose it's structure and start slowly melting like butter on a hot day. I had plans, concrete ones, and then they were shattered, and so I made new plans, based mostly on faith and a belief in the possibility that I might just get a break. These plans began to seem more and more unrealistic and so I regrouped and began to assemble the bits and pieces of what I had left and, like a Lego set created the simplest of ideas that covered everything I could possibly handle. This has also turned into the most fragile of hopes I could imagine. What to do next? I could just stand here and stare into the light and wait for the shot I guess? I know though that I must move but, where? in what direction? what am I running into? Running into things that don't agree is something I would love to avoid for a while. When I arrived in Cape Town I felt so privileged and honoured to be living here. It is the beauty and easy access to everything. There seems to be a wealth of opportunity to explore and ideal for a person in my situation. Art and photography are the interests and activities I want to explore and enjoy more than anything else. I Have taken so many picture and studied and researched so many ways to improve my quality. I had 11 photos developed recently and had them mounted with boarders placed around them so they are prepared for framing. When they were ready I picked them up from the framers and had them in my car with me. I happened to meet with someone I knew and decided to show them. The person bought five of the eleven outright. It covered my cost and made a little profit and still have 6 left to sell. So why can't I just do this full time. Why cant I do what I love to do? Surely doing something one loves to do with passion and talent can survive off it? NO, here I am working 12 hours a day, 6 to 7 days a week on my knees on a construction site, breathing in the dusty chalky air, with echoing loud voices bouncing off the walls interrupted by the piercing, ripping din of grinders, drills and an assortment of power tools. Don't get me wrong please, I sometimes stand back and look at my work and feel a real sense of accomplishment. However, once I have managed to claw my way through the day on pain meds and sheer tenacity, I get home only to have to suffer a night of sleepless restless pain and anguish. It sounds dramatic, but I cannot explain otherwise what this is doing to me. My body aches from my feet to my knuckles in my fingers. I want to get a surgical knife and remove the demon that lives in a little corner of my gut. The nausea is just not enough to be relieved by a good vomiting release, only present enough to feel like you are drifting in a dingy on a gentle swaying swell. I leopard crawl though my bedding the entire night as if I have an enemy standing within meters of the killing zone, sweating and struggling to breath. At 5am I get up and have to first sit on my bed with my feet on the floor, to gather myself and then slowly check if everything will slot into the right position, and then the violent coughing, dry hacking, heaving coughing that makes my eyes and veins in my neck want to explode, white lights jump and spin in my crumpled vision until the lungs have released there precious content. The dark green thick mucus which is obviously from and infection deep within the lungs is almost a relief, because until it is rejected the coughing goes on. Move around a bit, get loose, take a few deep breaths, eat a little, just enough to take my medication but not so that the nausea and stomach will react to. Two Myprodols and off we go. A few more pain tablets through the day to get through the day and once home begin the agonising experience all over again, maybe I won't sweat as much tonight? maybe a shouldn't eat, then I wont feel so nauseas? Perhaps if I get into bed early and just read I will simply nod off and wake up at sunrise? Perhaps? Had to go to hospital today to have a Gastroscopy done. This is a method of inserting a camera down the oesophagus to inspect the inside of the stomach. Not pleasant at all, but does not last long. The result, Gastric reflux disease (G.E.R.D) and Gastritis. Just something more to have to deal with, but hey you would never know if you met me. I will do everything possible to keep it all to myself, I will put on my best tough guy attitude, I don't want you to think that this is going to be a problem, I will do your job for you and try not to let you down. If I just closed my eyes for a while to let my eyes adjust to the dark, perhaps when I open them again I will be able to see the way? but can I afford to take the chance and stand still and be calm for a bit or is there something sinister waiting behind the light?

Ignorance

ignorance is where someone or something is uninformed. This should not be confused with being unintelligent, as one's level of intelligence and level of education or general awareness are not the same. The word "Ignorant" is an adjective describing a person in the state of being unaware. ...

I know this can be quite a touchy topic but, please bare with me. The picture I use as my profile on facebook is a painting I did in the middle of the year, and the theme I chose was"ignorance" You know the old cliché about ostriges with their heads in the sand? They don't actually do that you know, it just looks like it from a distance when they stick their heads in the dugout of there nest to sort the eggs or something like that. It is something we all do, sometimes consciously and sometimes subconsciously, but we all are guilty. I bet there have been times when you answered by saying "oh really? I never knew! when what you really meant was that you did know and it just was not important enough for you to have to deal with and so you called on ignorance to cover your ass. A cop pulls you over for speeding and you say "really? I did not see the sign.........I am not familiar with the area" or some rubbish you quickly had to make up so you did not have to be held accountable...I can go on but, you get the drift. The worst kind of ignorance is the type which you Know but "choose" not to address it"

I have met so many people who have had to go through some terrible trauma in their lives while they were perhaps quite young and it left them scarred to the point that it effects the way they function in the world as adults. Not dealing with the trauma and allowing it to control ones life so negatively is a form of ignorance...if you bury your head in the sand then it will no longer exist, but wait! your ass is exposed and everyone can see it except you. I realised later in my life that my issues were negatively effecting my daily functioning especially with members of society, I felt insecure and vulnerable too often for it to be considered normal. When I had my children I realised that I had to change the existing behaviour and so I went to counceling......oh the other reason why I went was because it was strongly suggested I go..ha ha, I dare not mention from where that wonderful advice came from. It was one of the best things I ever did, I still had to wade through a number of very strange councelors to find the right one but when I did, it took no time at all to see the light. I had to stop pretending that I did not have a problem, stop being so ignorant and deal with whatever I had to to become something better. I choose to know as much as possible now, google helps me a lot with that. If I can't answer I go look it up. Before I get into an argument, I check my facts. What I am trying to say is that it is so much better to deal with things as they occure than to simply ignore them. If one ignores the issue it just hangs around, what's worse is that our immaginations get hold of them and then..oh boy..wait till you hear the end of that version? When one confronts the issue it is never as tragic as one was led to believe, the air seems lighter and clearer and letting go is easy. My Illness shocked me in many ways. I ignored things in my past and buried my head in the sand while my ass was sticking right out there. I put myself at risk and ended up have to pay the dearest price for it. Yes I blame ignorance, ignorance about smoking, about what we eat, about work and worst of all stress. Yes, to my mind stress is the number one killer. We slog through days, ignoring our children, our spouses, our pets......we plot a singular path and travel it everyday till the rut we created is so deep we can't even see out of it any more. We say things like "when I get that then it will be better" when this or that happens then things will change" but what if it does not? did one not realise that ones life is happening right now and yet our sights or vision is set on long distance that everything in the current is out of focus.

Life is terribly fragile and when I sit and look out at all the beauty and chat with my children about their plans then I want to really live a little longer......I feel a desperate need to try and find a way to live as long as I possibly can and then the reality shows the errors of my ignorance. I could expound on this topic but hope you will really start trying to live and recognise where you are right now and be present for yourself and all those that surround you with love. Oh by the very way...My beautiful daughter had her second baby today....a boy this time......I think her husband is going to be well stoked because he is a big boy and maybe just maybe will play for the sharks when he is bigger.

Ok good I am going to try and sleep now...something that does not come that naturally any more because of the cortosone. Take care of yourselves.