Paralyzed for 20 years

When I first heard about full body paralysis I didn't see the point of living with such an isolating condition. What would be the point of life without the ability to do anything? I was 16 years old and somehow the subject of being paralyzed in this way had come up and I remember thinking about it afterwards. I didn't really understand what it meant but I didn't believe it would be worth living with. I thought that it would be better to be dead than to live with this condition. With the quality of life so low I was unable to see the point of being alive. What would be the point of not being able to move and what about sex? My 16 year old self had no understanding of the way his life would develop.

Now I am nearly 60 years old and I have been paralyzed for 20 years. I have become the person my 16 year old self could hardly imagine worth staying alive as. I don't move and I have a very weak voice. So I don't do or speak much and there isn't much I can do. I mostly "speak" through my writing but this is very limiting and restricts interactive communication.. What about my 16 year old self, what would he say to me now

Would he tell me just to end it when he realised that life would become very lonely. When he began to see how challenging each day would be, no more lie ins and quick showers, or walking barefoot on the lawn and reading a book under the tree, or plunging into the pool on a hot day. Yes and no more relationships with sex, What about life without a loving relationship - surely that can't be worth living? At 16 sex is always on a boys mind, indeed at 60 sex is always on my mind. At 16 I couldn't imagine a life without sex even though I had never had sex I knew the pleasure that was part of it. I longed for the intimacy that a sexual relationships promised.

What would the 16 year old Julius tell me knowing what my life is now? When he discovers that the intimacy with girls that consumed his thoughts was never going to be, In fact the relationship he had with his own body would cease and instead he would watch other people clean and groom his body. The ache of the longing never leaves and nothing else can replace the loneliness of losing touch with your own body.

I have tried to live with my new life with dignity and I have tried to appreciate the beauty of life. I am alive and what an improbable privilege that is.

Amazing Life

I have had some difficult days and it makes me sad. Sad that I am alone now and even though surrounded by good people - they are not my people. So I have to just keep my thoughts locked up. When I have bad days my bp low and I feel spaced, I don't want to be alone but I can't share.. I find myself alone unable to use my pc and phoning is not an option, so I just have to try to relax.

It's an awful place to be - and I feel afraid sometimes . I just feel that I am not part of anything and I will just slip away in solitude. So after being so loving and giving, I am afraid of being alone at the end. Yet, I know that nobody owes me anything and I am not able to share my life with anyone, so I must accept my place, it is what is is.
Life is a most amazing occurrence, a privilege. I fight for my life, it is amazing to have life.

 

Lifeline

 

So imagine a line running alongside your life, when you are born you emerge from the line and move away from it, when you are young and well you are far from the line but age and illness more you closer to the line. In 2002, 20 years ago, I was far from the line but a motorbike crash put me in a coma and broke my neck; causing me to rapidly move toward the line and flirt with crossing it.

 

For 3 months after the crash, I bumped along the line and I began to wake up to learn I was paralysed. I have done well;  my immobilised body has kept going. For the following 14 years I stayed well away from the line using my remaining physical capacity to the maximum.

 

Then in 2016 I had an infection which drew me back towards the line and it took a lot of my strength to keep above the line. After a long stay in ICU I had an operation to fit me with a tracheostomy I returned home to live with a ventilator overnight and reduced strength. My life was getting closer to the line. I started to be concerned for my time left when in 2019 I began to have periods of very low blood pressure. I felt my life moving toward the line on a daily basis. I decided to get my final will completed.

 

Today I felt myself slipping again as my blood pressure dropped and I felt the pull toward the line. Appreciate your life keep your body healthy and enjoy it.

Wake Up Now

 

The world around you has changed, it has changed fundamentally. We haven't yet come out of the pandemic and now Putin's  war on Ukraine is taking effect. I am sure that you are numb from hearing the bad news and like climate change you just can't be bothered. Maybe you feel powerless and don't know what to do. Maybe you can't be bothered.

 

Our world as in crisis and the only leadership that is affecting us all is the total madness of Putin. In the western world, leaders are not taking on the issues and seem content to shout from the side-lines. So what is the most important issue? We are in the beginning of a global food crisis, triggered by the war in Ukraine, which followed the peak of the on going pandemic within the window for climate change avoidance measures. We are all going to see our world change and change badly for the worse. Millions of people will die. The disastrous effect of war in Ukraine will remove a large contribution of wheat and sunflower oil from the market and continue the rise in fuel prices. This will destabilise my world and  damages your comfortable world. For many people it will be life threatening.

 

So the small mind of Putin, driven by a nostalgic lust for the power of the past has touched us all and now threatens the lives of many people. He will be remembered in history on the same list as Hitler and Stalin; a man who attempted to rekindle the past has destroyed the future for Russia and robbed Russians of the constructive role in building a modern peaceful world.

 

So what is this to you? Why should you care? You should wake up now because the war in Ukraine will effect your life and the lives of everyone on earth. You should be angry at the insult to everything that humans are trying to achieve - peace and hope for the world. You should be upset by this action to destroy a peaceful country on the basis of lies and disinformation. Putin has destroyed his political opposition and suppressed his own people. World leaders have been ineffective and watch while Ukraine defends itself and Russia destroys their cities, just as it did in Syria. Furthermore, Russia has blocked the international access to Ukraine ports, stopping the flow of food to the world.
 

Wake up and protest against this war. Stop Putin's war. Do not stand by and do nothing. Every voice is important to keep the pressure on to keep the light on the issue.

 

Help me to do this. I am only a man, disabled by a broken neck, voiceless but I can write on a pc. Help me to fight for our common humanity - share this or write your own - just do something.

 

Wake up now!

 

Stop Putin's war

 

https://ukraineworld.org/

#putin

#ukrainewar

#stopputinswar

#madman

 

 

 

When you look out the window at the world around you, pause, and contemplate what you see. The world may be just the same as it was a few hundred years ago, trees, soil and sky. Aside from modern structures mostly things haven't changed.. You could go back 200 years or more and see something similar. The most amazing and earth shattering comprehension is how much we now know and understand about our world.

 

We understand how plants grow, how substances are made up of basic atoms and even how atoms are made up of sub-atomic particles. We can look at the faintest objects in the sky and see the earliest light. We now know that there are billions of stars in our galaxy but within the universe there are billions of galaxies just like our own each with billions of stars..

 

When I was a boy transistors, the basic build block of electronics today, were something large enough to hold in your hand. Today our knowledge and and ability allows us to put 100 million transistors onto a tiny chip - the basis of mobile phones.

We now know and understand so much more than ever before. What we see out through the window is a world that science has opened to our eyes. The beauty and wonder is poignant with the understanding of the fragility of it all.

 

This is not the time to be killing and fighting but a time to realise our place in time and space as a special thing for all of us to live in.

Stop Putin's war 

 

Endurance Found

 Some of you will know that I spent 1985 in the Antarctic on a scientific expedition. This was the 26th annual South African Expeedition - SANAE 26.  I had a wonderful time exploring one of the most fascinating parts of planet earth. A few weeks ago I wrote about the search for the wreckage of Endurance captained byone of Antarctica's greatest explorers Sir Ernest Shackleton and I mentioned that they were using the latest ship from the SANAE fleet, SA Aghulas II. On the 10th March 2022 the wreck was found on the sea floor and it was remarkably well preserved. 

The Endurance after over 100 years under the sea

Some of you will know that I spent 1985 in the Antarctic on the SANAE III base which is now buried under the snow. I experienced the full effects of the Antarctic seasons from 24hr daylight  to 24hr dark in the winter.

During the time in a world largely cut-off from the world, except for radio contact, Antarctica begins to seep into your bones and you begin to understand the amazing courage and determination of the earlier explorers. They endured hardships that were unimaginable to a South African boy. They were strong minded and skilful, when it seemed impossible to continue they found a way. Even after their ship sank before their eyes, they found a way to continue; dragging a lifeboat with supplies across the frozen sea t the nearest point of safety and by using the lifeboat to set off to where there was a possibility of finding a rescue. Shackleton was able to lead his men and keep them motivated to stay alive and succeed.

 

Some of the scenery from our 1985 expedition 

Icebergs trapped in the frozen sea

In the blue shadow of an iceberg

The spring sunshine through clouds on the horizon provide a moody light 

Exploring the iceshelf  at-30deg 

Looking back inland with our caravan on sleds ove the bukta

Cry for the age of truth

 I wept today. I wept at the pictures of destruction of Ukraine. I wept at the lies of the Russian government and the suppression of truth. Dictators around the world smile and grow strong when they see how easy it is to suppress truth and subjugate a population. Dictators in  Eritrea  Uganda, North Korea  Zimbabwe and hostile governments like China, Venezuela  and Eritrea are happy to see Russian deception and violence succeed. 

I wept to see a world stand by while the playground bully uses his strength to force his will on others and to cause unnecessary suffering. When will we learn that if we tolerate this, that we will be next?

Putin is Insane

 When the world faces existential issues which threaten our future - selfish, aggressive men in Russia and cowardly, short term, leaders in the west fail the world and destroy our future. The war in Ukraine and the subsequent impact on every aspect of life, will touch the lives of everyone. This pointless destruction and the deliberate killing and detonation of a country will impact food and fuel supply and cause carbon levels in the atmosphere to spin out of control.

We ignored Putin's ranting, the words were all there, his plan has never changed. The world has reacted by standing by and watching, while a country and people are bombed to nothing. We are afraid to antagonise him and have not directly intervened to save lives. So we prove him right we value our own prosperity more than the lives of the Ukrainian people.

We have not learned that you can't stand back when a madman threatens you have to step forward and stop him.

Being Ernest about the Antarctic

On the news tonight they talked about the search for the weck of the Endurance a wooden sailing ship under the command of Ernest Shackleton . Which sank in 1915 crushed by sea ice whilst on an expedition to the South Pole. Needless to say they didn't make it to the Pole but survived by dragging the lifeboats and supplies ove the ice to the closest land.. The ship and the story of Ernest Shackleton are legendary as during the most challenging of circumstances he never lost a man. 

Finding the wreckage would be a boost to the memory and tales of the leadership of a true hero Sir Ernest Shackleton.

The Endurance trapped and crushed by the froze sea

The expedition to find the wreck is being run from the S.A Aghulas II a South African Antarctic supply ship. This is the second generation of Antarctic supply ships. I was on the first S.A. Aghulus in1985 when I was part of the 26th South African expedition to the Antarctic (SANAE26)

Docked against the sea ice.

Loading the ship in Cape Town

The workhorse of the modern Antarctic expedition is helicopter seen here doing a landing

see DailMail article 

 

Musings

 How do you know if you are loved?

the answer lies in behaviour - words don't mean a thing when they are not backed up with actions 

I have come to the conclusion that I am not held in the same regard by my closest as I feel for them. It's quite sobering - you can't confront people about your feelings because if they change you will feel like it is forced and not spontaneous. Everytime you realise that you are not in the place where you thought that you were, you feel the distance grow and suddenly everything becomes clearer all the things that you are not part of and the plans you are not part of. You know that your picture is not present on the devices. You are not seen as worth the effort.

I suppose this can't be helped - I am so difficult to talk to (with my bad speech) my lack of mobility and my paralysis make me a boring person to be with. I know that so I should just got used to it.

I just wanted to be special to someone. I remember as a boy that I dreamed of a day when I could have a relationship of honesty. I thought it would happen for me but I am not the person who has it.

I have been blaming myself for so long that I don't know how to stop.