Yesterday in therapy, I finally admitted several things that I have fought tooth and nail to cling on to, in desparation to not feel like that I am giving up on things. The first big thing I admitted to, was being disabled. I have always said I was a crip, but that was in a defence mechanism kind of a way. A way to hide the pain and shame that I held onto about it. Yes, I was ashamed of being disabled. And there are many reasons for that:
Reason 1:
Growing up, I was bullied a hell of a lot, I felt different and being different didn't fit in with the psyche of the day. Even though 95% or more of the Australians don't match the sandy/blond hair, blue eyes and tanned skin ideal, they think that they do, or are close to it. When you are born different, or raised in a different country, then you are different and much like many people (I theorize) being different scares people because it shows them that either their god isn't perfect, or that they are mortal and something bad can happen to them, or those that they love. Back in the 1800's freak shows and carnivals were popular. Normal, healthy and proper society would come and ogle at the freaks, the misfits and those who lived on the fringe of society and feel better that they didn't have anything of the like.
Reason 2:
Disabled people are a drain on society and divert funds away from those who deserve them, like politicians and their rich friends. Yup, that is the common view in the UK, where Cameron and his scum like, Jabba the Hutt self Ian Duncan Smith, actively have caused the death of 100,000 people on disability or in the process of claiming it because they were deemed fit to work. Hell they even had people who were in coma, vegetative states or going through cancer treatment deemed fit to work and had their benefits removed. There is a UN probe into this, but they are trying their hardest to scrap the human rights bill so that things like this can't be sent to trial or human rights court. If this happened in a 3rd world country, there would be huge outrcies in the media, armies would be mobilized and the west would be calling for Genocide. Yet, it's okay, it is just cripples who are taking money away from our rich investors and banks, and they have nothing to contribute to society.
Reason 3
Because, I felt that if I were to admit to being disabled, I would no longer feel the urge to continue trying to do as much as possible to keep it from getting worse. I know that I have an early death ahead of me, unless we wake up, get all these new technologies out, and maybe then I can live a longer life. It will most probably be some sort of breathing issue, or my back just collapsing in on itself. I dunno, but I am trying my best to make the most of my time while I am here. I was told several times that I won't be able to walk by my mid 30's at the latest, that I wouldn't be able to do the things I loved etc. Well, I am 42 in June and still moving forward. Sure, there many a day where I want to just roll over and say fuck it, but, I don't let those days get to me as much anymore.
When I finally admitted to being disabled, instead of making me feel bad about myself, it actually spurred me on to find things to do. I have decided I want to get some tests done by doctors and let them use the data and learn as much from me about what I do to maintain myself, and hope that it helps others. I want to get a back-brace made so that it can support the hump and take a lot of pressure off of it when I walk and use stairs. Walking up and down stairs, and walking by itself when I am fatigued, feels like driving in a car where the springs are all rusted out and if you hit a bump too big, or a pothole too deep, you will break the springs and come to a VERY sudden stop. I have also decided that admitting it has freed me up from a lot of stress as well. Except for the last two days, I have done my best to get to bed before 1am and preferrably before 11 or 12, as I now know my body needs an absolute minimum of 9 - 10 hours sleep for me to be able to function when I get out of bed. I think the thing that I have finally accepted, is that if I admit to being disabled, wanting to look after it becomes just that bit more important. And, as a consequence, I feel less embarrassed about asking for it. I also feel more inclined to find active ways to make severe spinal conditions more noticeable than being stuck onto the back shelves. Paralysis rightly gets a lot of funding, but you don't see much in the way of research produced on preventative measures for severe conditions from suffering any long term effects.
So yes, finally admitting to being disabled, has made me a lot more aware of having to look after myself, but, more importantly, it has made me more aware of trying to find the positives in myself and what things I have done to do things more effectively. Right folks and folkettes, too damned tired carry on with writing. Be well and take care. Lots of <3 and best wishes for today and every day, in both yourself an those you love.
17 February 2016
20 January 2016
Photo's Day Today.
So today I went and saw the chiropractor to see the results of my back x-rays. While I guessed that the curve in my spine was and, there were two things that popped up. Firstly, that I have a lumbar scoliosis. I didn't realize that, which explains why turning over in bed is the equivalent of feeling like a child's doll that has the torso and legs move to the point where they can walk forwards and look backwards. So I am going to share them here with you.
Kyphosis
Yes, this is the curvature in my thoracic spine. Up until seeing how bad the spine looks, because, you can't see it clearly through muscle or skin, in the x-ray, I used to get mad when people thought I was an inspiration to them. Now, that I see it, I have to admit that even I am impressed with myself. Nothing like a good old bit of hard facts to make your day.
Neck
Well, this is what my neck looks like. Again, this is why I have a hard time swallowing. It also makes sense as to why I get muscle based headaches.
Lower Back
So, this one was quite interesting. Firstly, I didn't know I had a bit of scoliosis in the lower back. But thankfully, that explains a lot. Also, you can see my right hip which has been replaced. I am facing front on to the x-ray machine in this picture. Also, I think the right side of my pelvis looks a little bit deformed in comparison to the left side.
The most amazing thing out of all this though, hardly any sign of degradation at the moment. Though there is a bit near where the fusion was done that looks a little bit out of order. But that part where there seems to be no fins on the vertebrae, that is where part of my gangrene infection got into the bone and they had to take the rods out.
Well, enjoy!
Yes, this is the curvature in my thoracic spine. Up until seeing how bad the spine looks, because, you can't see it clearly through muscle or skin, in the x-ray, I used to get mad when people thought I was an inspiration to them. Now, that I see it, I have to admit that even I am impressed with myself. Nothing like a good old bit of hard facts to make your day.
Well, this is what my neck looks like. Again, this is why I have a hard time swallowing. It also makes sense as to why I get muscle based headaches.
So, this one was quite interesting. Firstly, I didn't know I had a bit of scoliosis in the lower back. But thankfully, that explains a lot. Also, you can see my right hip which has been replaced. I am facing front on to the x-ray machine in this picture. Also, I think the right side of my pelvis looks a little bit deformed in comparison to the left side.
The most amazing thing out of all this though, hardly any sign of degradation at the moment. Though there is a bit near where the fusion was done that looks a little bit out of order. But that part where there seems to be no fins on the vertebrae, that is where part of my gangrene infection got into the bone and they had to take the rods out.
Well, enjoy!
11 January 2016
Lazarus Has Arisen, And Went To Meet The Starman!
You can't talk Bowie, without talking music, but I am going to let that rest for a few moments. I want to talk Bowie as an actor, and the things I have learned just today that made me love him even more. Firstly, most people reading this should know that I have a form of hyper-kyphosis, giving me a hunched back. Today, I learned that David Bowie, you know music god yada yada yada, also played the leading role in the Elephant Man on Broadway, 157 times. Yes, 157 times, you read that right. So you can just imagine how much more I just became enamoured, which even I didn't know was possible. Also, I thought I had recognized him, but he played in the movie of Twin Peaks, Fire Walk With Me. This was, like, MY favourite television series up there with the X-Files and well, that was pretty much the top two right there. And I always thought, I am sure that is Bowie, and reading a tonne of obits for him today, it affirmed that he was in it. And, you can't talk Bowie, AND Movies, without mentioning Labyrinth. Oh, Bowie Goblin King, how beautiful and radiant you were. And a secret, I was so jealous of that little kid getting fatherly attention from Jareth The Goblin King himself.
But, where it really makes an impact, that reason we all got addicted to Bowie, was music. I listened to just about everything he ever put out, and could not think, for one moment, that he would release an even better album than the 20 odd he did before, but, Bowie being Bowie, just does that doesn't he! And, not only does he do it, he tells us all that he was dying and we were just too amazed by the characters to catch on. Bowie Lazarus, was just about the ultimate character he could play. At worst, I thought it was just his farewell album, telling us that he is going to finish music with a standing ovation kind of show. Well he did, but, to actually die 3 days after the release of your album on the day of your 69th birthday, that was fucking showmanship right there. As Frank Sinatra inferred, Bowie did it his way, right up til the end. And, we the fans, just fell for a beautiful face from the Mr Rogers of Rock. The Grandfather of Contemporary Music and Fashion/Art. The Alien From Mars, He who fell from the sky. Was he being Lazarus, or was he being the Literal take on the Latin meaning of Lucifer, The Light Bearer. Was he showing us something that we all know that will come in the future, and showing us how to take ownership of it, and not let it bring us down all the time?
Mr Bowie, may your energy never dissipate, and continue to share your beauty, love, music and light across the universe. Move on and be that alien and bring your music to another world starved for Ziggy and Lazarus. Thank you for your stay here, I know I will continue to feel that little hole inside from the beautiful lessons that I learned from you. Love from a long time fan. I will miss you. Will leave you all with my favourite song off of his latest album, Blackstar. Very prophetic one would say Lazarus.
05 January 2016
A New Day...
So, today was a very important day for me today. I had a really good therapy session, and finally am starting to see a bit of a turn around. Still a LOT of stuff to get through, but it was also one of the first times, in a very long time, where I have been able to admit that, and actually believe it as fact, not just to make others happy to hear me say something good about myself for once, but I finally admitted, that I have done well with the cards I have been dealt. It hasn't been easy, and as I said, it won't ever be easy as many people have it, as I don't have much to show for my life in the way of houses, cars and all those permanent possessions. But considering the penalty points stacked against me, the fact that I am on both feet, and slowly getting back into fight mode after an horrendous year and a bit, I have, to my own metrics, done well.
Let me share with you something, that has been super hard for me to deal with. Having to quit personal training, was at one point, something that made me question my continued existence. It was for the first time in my life, something that I excelled at, and had verifiable results to prove it, tangibles that I couldn't sweep under the rug as just luck or flukes. It hit me hard. Probably worse than my divorce. Mind you, I didn't have Jamie take me out on the piss either to help with that one, thanks brother, much love to you on that one. But yes, it was the first time I had felt that I had failed, even though I hadn't. It was the second time in my life where my health issues ruined a major life dream. It was the third time that I let myself slip into melancholy and depression to sink, into oblivion. It, and one or two other personal things had just compounded into eachother, and made me loathe myself, spiritually, physically, emotionally and, just in general, hate who I am. Hate is a strong word, but it is true. I hid all this under a guise of not wanting to upset or be a burden to friends and family. My fantastic psychologist has purged me of feeling that I am a burden, that I am more than just a burden on the state, on my family, on the planet. To have these thoughts, over things that you can't change, over the idea that you feel you don't matter, is worse than anything I have ever felt, the bullying, the emotional bullying and other things.
But, the last 3 or 4 days, something deep down, that, reserve core of self, wisdom, bios reset if you will, activated. It made me come to understand that, the root cause was the excruciatingly high standards I set for myself when I was a kid and being bullied. I had to prove I was better than I was being told. And, 30 plus years later, it burnt me out. It, not burned me out, it scuttled me. The quitting training, was the last explosive that sunk the ship beyond salvage, other than for scrap. It was a hard year, a very near final year in regards for being on the edge of giving up and just wasting away. But I hid that, I hid it from everyone because it was a burden, in my mind, that nobody should have to bear. But, then I realized, that firstly, I have been there for so many of you in many ways through the years, not because I expected something in return for it, but because I love you, each one of you who have known me since kindy, primary and high schools. I was there for you because I never wanted you to feel a burden when you weren't, and I didn't apply this to myself. The other reason that made hide it all, was shame. I admit, I fell in the shame to be another disabled person. Fight it as much as I did, with poor taste jokes and sick humour, I honestly felt that I was just another statistic, another glitch in the software of the fabric of humanity. To feel that, isn't because I find other disabled people to be disgusting or anything like that, it is because of the way society has made us feel. It is disgusting, that those who think they have nothing to fear about life because they are perfectly capable of normal function, can put that down on a strata of society, and then manage to call themselves human, is a fucking disgrace, and a stain on the name of humanity. It leaves an exceedingly sour taste in my mouth, that people, have made me feel like this because I ended up a statistic because of the evils of society. It isn't through the fault of my father's service in Nam, or my mother's use of chemicals in farming, it is in this disgusting, perverted need for violence, shortcuts and a short time profit regardless of the long term effects.
These last 4 days have been excruciatingly painful as they have been blissfully enlightening. To understand that my life was based on abstracts of things that I didn't believe in or feel any connection to, was just one of the most horrible things to comprehend. To know that there is this very beautiful being inside, that was bullied, emotionally and physically through school, through random strangers, because I didn't fit the role of perfection that society demands really cut deep. But, because of my finally getting bits and pieces back from when I felt whole, that time of being five and understanding that loving people regardless of gender or race, didn't make me wrong, it made me right, it made me happy. But, when society, is so disassociated from love, that it makes people question love, it shows that we may not have advanced as much as we believe we have. The one thing it did show me, and I am thankful for, is that it showed me, that those people I love, and call friends and family, don't feel burdened by my existence, and would find a void that is hard to replace if it were there. The human mind, can be the most amazing thing, creative, always striving for that next best thing, goal, event or level of consciousness. BUT, and I wish I could make it 1 AU high, in big red letters, it can be the most cruel, horrible, destructive, hateful and just foul thing at the same time. It can lead one part of society, to feel alone, forgotten, belittled, hated and ostracized for nothing more than a genetic malfunction. Society demands perfection, but constantly fails to produce it, and when those "societal failures" come along, if they can't be destroyed, then they need to be moved out of sight, or belittled, because what it does, it shows us two things. It shows us that we are all very much capable of becoming the thing it doesn't like, and it shows us our immortality. Finally, it shows that we can't demand perfection.
Realizing this over the last few days, and on this last point above, decades, made me understand, that I don't have to conform, I refuse conform and I will not be a statistic anymore. And that, I owe to "my friends" both old and new, my psychologist, and most importantly, that part of me that refused to roll over and give up. If it is one thing I can say, is that I am one tenacious bastard, and I will always do my best to be so. So I promise you all this, in future, if I need a shoulder to lean on, or just a pep talk, I will ask. That is my only new year resolution that I will make, because I don't believe in that new year resolution stuff, only because it happened around the new year. I wanted to post this, because I felt that I needed to be honest with everyone. I needed to be honest with myself, and maybe, just because I wanted someone else to see it, in the hope that if it helps them, then, that something beautiful has come out of the ugliness that has been the last year. Love you all so much, and just want to thank you all for being who you all are
Let me share with you something, that has been super hard for me to deal with. Having to quit personal training, was at one point, something that made me question my continued existence. It was for the first time in my life, something that I excelled at, and had verifiable results to prove it, tangibles that I couldn't sweep under the rug as just luck or flukes. It hit me hard. Probably worse than my divorce. Mind you, I didn't have Jamie take me out on the piss either to help with that one, thanks brother, much love to you on that one. But yes, it was the first time I had felt that I had failed, even though I hadn't. It was the second time in my life where my health issues ruined a major life dream. It was the third time that I let myself slip into melancholy and depression to sink, into oblivion. It, and one or two other personal things had just compounded into eachother, and made me loathe myself, spiritually, physically, emotionally and, just in general, hate who I am. Hate is a strong word, but it is true. I hid all this under a guise of not wanting to upset or be a burden to friends and family. My fantastic psychologist has purged me of feeling that I am a burden, that I am more than just a burden on the state, on my family, on the planet. To have these thoughts, over things that you can't change, over the idea that you feel you don't matter, is worse than anything I have ever felt, the bullying, the emotional bullying and other things.
But, the last 3 or 4 days, something deep down, that, reserve core of self, wisdom, bios reset if you will, activated. It made me come to understand that, the root cause was the excruciatingly high standards I set for myself when I was a kid and being bullied. I had to prove I was better than I was being told. And, 30 plus years later, it burnt me out. It, not burned me out, it scuttled me. The quitting training, was the last explosive that sunk the ship beyond salvage, other than for scrap. It was a hard year, a very near final year in regards for being on the edge of giving up and just wasting away. But I hid that, I hid it from everyone because it was a burden, in my mind, that nobody should have to bear. But, then I realized, that firstly, I have been there for so many of you in many ways through the years, not because I expected something in return for it, but because I love you, each one of you who have known me since kindy, primary and high schools. I was there for you because I never wanted you to feel a burden when you weren't, and I didn't apply this to myself. The other reason that made hide it all, was shame. I admit, I fell in the shame to be another disabled person. Fight it as much as I did, with poor taste jokes and sick humour, I honestly felt that I was just another statistic, another glitch in the software of the fabric of humanity. To feel that, isn't because I find other disabled people to be disgusting or anything like that, it is because of the way society has made us feel. It is disgusting, that those who think they have nothing to fear about life because they are perfectly capable of normal function, can put that down on a strata of society, and then manage to call themselves human, is a fucking disgrace, and a stain on the name of humanity. It leaves an exceedingly sour taste in my mouth, that people, have made me feel like this because I ended up a statistic because of the evils of society. It isn't through the fault of my father's service in Nam, or my mother's use of chemicals in farming, it is in this disgusting, perverted need for violence, shortcuts and a short time profit regardless of the long term effects.
These last 4 days have been excruciatingly painful as they have been blissfully enlightening. To understand that my life was based on abstracts of things that I didn't believe in or feel any connection to, was just one of the most horrible things to comprehend. To know that there is this very beautiful being inside, that was bullied, emotionally and physically through school, through random strangers, because I didn't fit the role of perfection that society demands really cut deep. But, because of my finally getting bits and pieces back from when I felt whole, that time of being five and understanding that loving people regardless of gender or race, didn't make me wrong, it made me right, it made me happy. But, when society, is so disassociated from love, that it makes people question love, it shows that we may not have advanced as much as we believe we have. The one thing it did show me, and I am thankful for, is that it showed me, that those people I love, and call friends and family, don't feel burdened by my existence, and would find a void that is hard to replace if it were there. The human mind, can be the most amazing thing, creative, always striving for that next best thing, goal, event or level of consciousness. BUT, and I wish I could make it 1 AU high, in big red letters, it can be the most cruel, horrible, destructive, hateful and just foul thing at the same time. It can lead one part of society, to feel alone, forgotten, belittled, hated and ostracized for nothing more than a genetic malfunction. Society demands perfection, but constantly fails to produce it, and when those "societal failures" come along, if they can't be destroyed, then they need to be moved out of sight, or belittled, because what it does, it shows us two things. It shows us that we are all very much capable of becoming the thing it doesn't like, and it shows us our immortality. Finally, it shows that we can't demand perfection.
Realizing this over the last few days, and on this last point above, decades, made me understand, that I don't have to conform, I refuse conform and I will not be a statistic anymore. And that, I owe to "my friends" both old and new, my psychologist, and most importantly, that part of me that refused to roll over and give up. If it is one thing I can say, is that I am one tenacious bastard, and I will always do my best to be so. So I promise you all this, in future, if I need a shoulder to lean on, or just a pep talk, I will ask. That is my only new year resolution that I will make, because I don't believe in that new year resolution stuff, only because it happened around the new year. I wanted to post this, because I felt that I needed to be honest with everyone. I needed to be honest with myself, and maybe, just because I wanted someone else to see it, in the hope that if it helps them, then, that something beautiful has come out of the ugliness that has been the last year. Love you all so much, and just want to thank you all for being who you all are
03 January 2016
Oh and yeah..
Sorry for a tear jerker new years post, but it beat me to it. Have a good new year folks, and I will promise to try and blog more often!
02 January 2016
I can't take credit for this post...
Well I can for finding it, but, having listened to this song, I just want to sit and burst into tears. It is one of those songs from my youth I never quite understood, but totally loved, and now I understand it, and am just broken to bursting point with the lyrics. Damn you New Order, you wrote the song of my childhood. I just never knew it at the time. <3 you to shreds though, you were always one of my favourite listens.
True Faith
I feel so extraordinary
Something's got a hold on me
I get this feeling i'm in motion
A sudden sense of liberty
I don't care 'cus i'm not there
And i don't care if i'm here tomorrow
Again and again, i've taken too much
Of the things that cost you too much
I used to think that the day would never come
I'd see delight in the shade of the morning sun
My morning sun is the drug that brings me near
To the childhood I lost, replaced by fear
I used to think that the day would never come
That my life would depend on the morning sun
When I was a very small boy
Very small boys talked to me
Now that we've grown up together
They're afraid of what they see
(Note: Interestingly, the original lyrics on this line were: Now they're taking drugs with me)
That's the price that we all pay
Our valued destiny comes to nothing
I can't tell you where we're going
I guess there's just no way of knowing
I used to think that the day would never come
Id see delight in the shade of the morning sun
My morning sun is the drug that brings me near
To the childhood I lost, replaced by fear
I used to think that the day would never come
That my life would depend on the morning sun
I feel so extraordinary
Somethings got a hold on me
I get this feeling i'm in motion
A sudden sense of liberty
The chances are we've gone too far
You took my time and you took my money
Now I feel you've left me standing
In a world that's so demanding
I used to think that the day would never come
I'd see delight in the shade of the morning sun
My morning sun is the drug that brings me near
To the childhood I lost, replaced by fear
I used to think that the day would never come
That my life would depend on the morning sun
I used to think that the day would never come
I'd see delight in the shade of the morning sun
My morning sun is the drug that brings me near
To the childhood I lost, replaced by fear
I used to think that the day would never come
I'd see delight in the shade of the morning sun
Read more: New Order - True Faith Lyrics | MetroLyrics
Damn it, thanks for the water works!
True Faith
I feel so extraordinary
Something's got a hold on me
I get this feeling i'm in motion
A sudden sense of liberty
I don't care 'cus i'm not there
And i don't care if i'm here tomorrow
Again and again, i've taken too much
Of the things that cost you too much
I used to think that the day would never come
I'd see delight in the shade of the morning sun
My morning sun is the drug that brings me near
To the childhood I lost, replaced by fear
I used to think that the day would never come
That my life would depend on the morning sun
When I was a very small boy
Very small boys talked to me
Now that we've grown up together
They're afraid of what they see
(Note: Interestingly, the original lyrics on this line were: Now they're taking drugs with me)
That's the price that we all pay
Our valued destiny comes to nothing
I can't tell you where we're going
I guess there's just no way of knowing
I used to think that the day would never come
Id see delight in the shade of the morning sun
My morning sun is the drug that brings me near
To the childhood I lost, replaced by fear
I used to think that the day would never come
That my life would depend on the morning sun
I feel so extraordinary
Somethings got a hold on me
I get this feeling i'm in motion
A sudden sense of liberty
The chances are we've gone too far
You took my time and you took my money
Now I feel you've left me standing
In a world that's so demanding
I used to think that the day would never come
I'd see delight in the shade of the morning sun
My morning sun is the drug that brings me near
To the childhood I lost, replaced by fear
I used to think that the day would never come
That my life would depend on the morning sun
I used to think that the day would never come
I'd see delight in the shade of the morning sun
My morning sun is the drug that brings me near
To the childhood I lost, replaced by fear
I used to think that the day would never come
I'd see delight in the shade of the morning sun
Read more: New Order - True Faith Lyrics | MetroLyrics
Damn it, thanks for the water works!
25 October 2015
Personal post.
I have a great love of writing thoughts about the things that I see, do and hear of the happenings in the world around me, but what most people don't know, is the depth and level of my internal thoughts and the related writings that come from them.
Of late, much has been happening and it seems that finally my health seems to be stabilizing. Now, that doesn't mean that everything has magically reveresed and I am getting healthier, it just means that my body has again adapted to a new paradigm, or set of instructions/conditions that it has to work in. I liken my body to a car in Cuba, no matter the state of repair or disrepair that mybdy is in, it always seems to try and run in an optimal way for the current phase it is in. This is what is called adaption, and I firmly believe that that is the one things disabled people have a thing with which the world could sure learn about. But, since I am more often than not, not dishonest about what I type, but more, reticent to put the whole of everything up for public consumption.
I have a dislike of being too upfront about my health conditions. Those who know more about me on a personal level, or were there when I have been to doctors or surgeries, have a fair idea of what my life is projected to look like. But those who know me extremely well, know that is something I will continously challenge until I am either hit with an excessive quantity of information that makes me understand that Ineed to slow down, or, my body shuts down to the point where I am in need of an armed guard to keep my from going out too often and doing stupid stuff.|
But, what is the whole situation? Often enough, I can be found counselling friends who are in need of advice ranging from what to go and see at the movies to major life changes and how to help them get through them safely. What a lot of people can't do in return, is counsel me on a lot of things relating to my health, and though they mean well with it will be alright, or other sincerely given platitudes, they can't related to or unerstand the base giant elephant in the room of my health condition, and that is it severity.|
With i think a bit of universal good luck in my very early years, I was introduced to Buddhism and thus over the years, many new and enlightening things from with which to draw from and help improve the quality of my existence. There have been theoretical concepts, that I have spent many years getting my head around, in the hope that I will somehow enlighten myself to how to deal with a degenerative condition, but at the same time, learn how to get the most out of life, within and beyond, the physical limitations of my body. I also periodically research my heatlh condition, and check for any new advances in spinal repair and rejuvination. Much of that information has not changed much in the last 20 years and that is basically, that short of breaking every vertebrae in my spine to remove the curvature and heighten exponentially, the chance of major infection, the other option is transplant, and the techonology for that is not remotely close. Stem cell rejuvination of the spinal cord is an interesting concept, and would work well if there were the possibility that it would remove the curvature, or more affectionately, the hump.
Where this leaves me, is pretty much a sentence of the encroaching and persistent decline of my spine and the semingly forever increasing moments of pain. In truth, my life span is shortened to around 60 years, give or take depending on external factors and the internal fight, which at the moment, is still there. The research I have done, has let me understand that as long as I can keep effective breathing techniques, pain management and focus all in a concerted effort with meditation and understanding, then I should be able to do this well and get some good years out of it. Otherwise, IF I let it slip, then we can bring that life expectancy down to 55. The interesting factor in this, is what keeps me sane knowing this?
This goes back to the earlier mention of an introduction to Buddhism. Again sometimes I can kind of see the universe working in ways that negates chance, but then, it could be that it was chance and it had been listening to my early information of knowing what my life was. The idea tht propels me to live each day, regardless if I am in bed feeling like crap, or out taking beautiful pictures, is the concept of Impermanence. I won't bore you all with philosophical lectures about what it is all about, other than it is a a very effective measure of making sure that each breath I take, is counted as my last, and that each moment the breath is held in my lungs, I have all the power in the world to decide whether or not Iwant to take that next breath. When in that split second of time between breaths, there is this eternal peace of knowing that I have made a personal choice, and that the universe, and my spirit, are in conjunction about the desire to live to take the next breath. When you live in this mode of thinking, all things in life are put into a perspective without wasting any time on redundant and pointless emotions of fear, sadness and stress about knowing that I may not live as long as my friends and other family, but I will also know, that I have lived a fuller life than a lot of people due to not wasting time and energy on those things that have no function other than to detract and displace my happiness and enjoyment of life into other more self destructive pursuits.
I have come to a beautiful level of peace and calm with impermanence. Maybe spending too much time beyond those that are alloted would have made me more lethargic in doing and learning the things that I would want to in life, but at the same time, it has given me that guidance to focus not in the past nor in the future, but to focus on that sweet moment of decision between this moment and the next, and renew my commitment to this for as long as humanly possible.
Of late, much has been happening and it seems that finally my health seems to be stabilizing. Now, that doesn't mean that everything has magically reveresed and I am getting healthier, it just means that my body has again adapted to a new paradigm, or set of instructions/conditions that it has to work in. I liken my body to a car in Cuba, no matter the state of repair or disrepair that mybdy is in, it always seems to try and run in an optimal way for the current phase it is in. This is what is called adaption, and I firmly believe that that is the one things disabled people have a thing with which the world could sure learn about. But, since I am more often than not, not dishonest about what I type, but more, reticent to put the whole of everything up for public consumption.
I have a dislike of being too upfront about my health conditions. Those who know more about me on a personal level, or were there when I have been to doctors or surgeries, have a fair idea of what my life is projected to look like. But those who know me extremely well, know that is something I will continously challenge until I am either hit with an excessive quantity of information that makes me understand that Ineed to slow down, or, my body shuts down to the point where I am in need of an armed guard to keep my from going out too often and doing stupid stuff.|
But, what is the whole situation? Often enough, I can be found counselling friends who are in need of advice ranging from what to go and see at the movies to major life changes and how to help them get through them safely. What a lot of people can't do in return, is counsel me on a lot of things relating to my health, and though they mean well with it will be alright, or other sincerely given platitudes, they can't related to or unerstand the base giant elephant in the room of my health condition, and that is it severity.|
With i think a bit of universal good luck in my very early years, I was introduced to Buddhism and thus over the years, many new and enlightening things from with which to draw from and help improve the quality of my existence. There have been theoretical concepts, that I have spent many years getting my head around, in the hope that I will somehow enlighten myself to how to deal with a degenerative condition, but at the same time, learn how to get the most out of life, within and beyond, the physical limitations of my body. I also periodically research my heatlh condition, and check for any new advances in spinal repair and rejuvination. Much of that information has not changed much in the last 20 years and that is basically, that short of breaking every vertebrae in my spine to remove the curvature and heighten exponentially, the chance of major infection, the other option is transplant, and the techonology for that is not remotely close. Stem cell rejuvination of the spinal cord is an interesting concept, and would work well if there were the possibility that it would remove the curvature, or more affectionately, the hump.
Where this leaves me, is pretty much a sentence of the encroaching and persistent decline of my spine and the semingly forever increasing moments of pain. In truth, my life span is shortened to around 60 years, give or take depending on external factors and the internal fight, which at the moment, is still there. The research I have done, has let me understand that as long as I can keep effective breathing techniques, pain management and focus all in a concerted effort with meditation and understanding, then I should be able to do this well and get some good years out of it. Otherwise, IF I let it slip, then we can bring that life expectancy down to 55. The interesting factor in this, is what keeps me sane knowing this?
This goes back to the earlier mention of an introduction to Buddhism. Again sometimes I can kind of see the universe working in ways that negates chance, but then, it could be that it was chance and it had been listening to my early information of knowing what my life was. The idea tht propels me to live each day, regardless if I am in bed feeling like crap, or out taking beautiful pictures, is the concept of Impermanence. I won't bore you all with philosophical lectures about what it is all about, other than it is a a very effective measure of making sure that each breath I take, is counted as my last, and that each moment the breath is held in my lungs, I have all the power in the world to decide whether or not Iwant to take that next breath. When in that split second of time between breaths, there is this eternal peace of knowing that I have made a personal choice, and that the universe, and my spirit, are in conjunction about the desire to live to take the next breath. When you live in this mode of thinking, all things in life are put into a perspective without wasting any time on redundant and pointless emotions of fear, sadness and stress about knowing that I may not live as long as my friends and other family, but I will also know, that I have lived a fuller life than a lot of people due to not wasting time and energy on those things that have no function other than to detract and displace my happiness and enjoyment of life into other more self destructive pursuits.
I have come to a beautiful level of peace and calm with impermanence. Maybe spending too much time beyond those that are alloted would have made me more lethargic in doing and learning the things that I would want to in life, but at the same time, it has given me that guidance to focus not in the past nor in the future, but to focus on that sweet moment of decision between this moment and the next, and renew my commitment to this for as long as humanly possible.
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