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.

Desmond Tutu dies

With the death of Tutu today I feel like it's the end of a time when we (humanity) were kinder, gentler and more loving. An age when we believed unity is strength - now SA and the world is divided without an interest in working toward unity. There is an ideological war brewing. A distrust of government, science and institutions. 

In the UK Brexit is still having an effect. In America its Antivax against any government attempts to control the virus. Europe is returning to an age last seen early last century - fascism and believe that cultural purity and Christianity are threatened by migration. Russia is preparing to invade Ukraine and China is threatening to exert its will - militarily, over Taiwan.

Our only hope is that young people will show the way and work together to move us forward to a more caring world. 

#tutu #brexit #youngpeople #humanity

You don't want to know me

You don't want to know me.
See my fight and  my struggle

I am weak seduced by peaceful rest

Know me - before I slip

Before the one way trip

I  want you to know me

 

You don't want to know me

You don't fight to know me

I long for you to see me

Know me - before that day

Instant me, I can't be

Take time to unravel me

 

You don't want to know me

Afraid I may surprise you?

Walk this journey to know me

Connect  with me
See my soul

Remember me

 

 

16 December 2021

 

GOVERNMENT BY CRISIS

 I have been frustrated and disturbed by the UK government under Boris Johnson it is timid and late with decisions, it refuses to be answerable for decisions and shows an appalling lack of regard for citizens.

 

I first heard about Boris when he was a local MP. He came across as a fresh thinker prepared to give straightforward answers. In those days a refreshing change from a stale Conservative party. I realise that he enjoys the image of a maverick that challenges the establishment. In truth he has shown himself to be con artist prepared to conceal and beguile people to keep from confronting the disastrous effect of his policies.

 

On the corona virus he consistently ignored the established ways to keep the virus in control and to save lives. He ignored the example of Asian counties he believed instead in fantasy of past British excellence. Yes Britain has some of the best people in the world for handling this crisis but they looked inward for leadership and Boris with schoolboy optimism and shallow thinking was there blindly leading the way. He failed to make choices that had safety as a priority and ignored the evidence from the rest of the world. Consequently, Britain has one of the worst virus responses. The government are now pointing to the vaccination roll out as a success. This success is not some result of government intervention but due to the hard work and dedication of the NHS.

 

Once again Britain is facing rising infections and hospitalisations. Once again the government are delaying the decision to take precautions. Even minor changes could make a big difference to the infection rate; mask wearing and distancing rules would slow the rate and allow the booster and vaccination process to get ahead. Instead, government delays will result in a deepening of the crisis which forces actions - GOVERNMENT BY CRISIS.

 

Every day I tend to listen to the farming news before 6. For the last months there have been several issues discussed -

• Lack of tankers to pickup milk which than is poured down the drain when no tanker arrives.
• Concerns about the impact of the Australian trade agreement and recently the New Zealand trade agreement.
• Multiple stories about the slaughter of animals in particular pigs, the scheduling of pig maturity is such that there is a few weeks of slack in the scheduling of butchering before the farmers have to destroy the animals, unused.

I heard multiple interviews and discussions about these problems but very little empathy from government. Government seemed to insist that there wasn't really a problem.  As the problems increased in intensity and the simultaneous shortage of hgv drivers resulted in fuel shortages at pumps, government started to lose control of the media story.
 

When it came to the crisis in trained butchers to deal with the processing of pigs, the government made every effort to avoid the issue. Boris even remarked that he couldn't see the problem as the pigs would die anyway. No understanding of the role of government to use its position to help citizens. The farming industry is important for all of us and a little care about the problems could save everyone from the waste of life and effort about to come.

 

It seemed like they were afraid to address the problems because they didn't want to admit that brexit was a factor. Instead they blamed industry for not investing in training and recruitment and made no effort to help; until it became clear that the solution to the problem would take a long time to fix. They said the lack of action was because they wanted to see wages rise - any responsible government would have been proactive and taken proper actions to reduce the impact. GOVERNMENT BY CRISIS.

 

The energy crisis first became an issue when gas prices started to rise. The early crisis was a lack of CO2 which is used by numerous industries but notably in food packing and processing. It is produced by 2 foreign owned companies as a by product from producing fertilizer. With gas prices rising it was uneconomical to continue producing their main product so they stopped production and consequently all the CO2 stopped. Suddenly hundreds of businesses that relied on CO2 had no supply and no backup. After many alarms and requests to government to help the crisis deepened till eventually they were forced to do something to avert looming problems. So a deal was made with the foreign companies to help with the price of gas.
 

This was short sighted and showed once again that this government has a poor understanding of governing. Subsequent to the actions taken and gas prices continuing to rise, many of British core companies began to struggle. Ceramics, glass and steel just to name a few also began to threaten closure. This now was a serious energy crisis. GOVERNMENT BY CRISIS could be avoided if central government stepped away from a rigid free market approach and took measures to control and protect certain shared resources and industry to benefit the population.

 

#borisjohnson #ukgovernment  #crisismanagement #joke #opinion

Trapped

So I a victim of the system, trapped, because of the inability to deal with me and my complexity of disability.

After talking to the Dr yesterday I understood that she agreed to my discharge today but today the Dr says no because of 3 notes on my file unrelated to my original illness and minor in nature.

The worst part is the way I am treated, like a child. They refuse to engage with me, to talk to me. No one asks about my needs what could be my reasons to prioritise going now. Its a simple abuse of power because I can't enforce my rights. So instead I am ignored and now they whisper behind my back with symptomatic murmers. So belittling.

Since the night I arrived I have felt myself getting smaller and smaller.

I won't be home tonight, I don't know when I will be home. 

Hope Drains Away part 2

Since I returned from SA in October 2019, I found that I was not fully recovered.  I was finding it hard to plan anything. I was having days of low blood pressure and my oxygen saturation was not stable.  I was having blackouts in the shower and some days I felt very poorly from the moment I started my day. The days began to blur into a haze and my thoughts started to switch to death. I was disappearing into a pit of dispair.

A succession of leaking urinary sheaths (a condom like device used to capture urine) resulted in a wound in my groin. While this is not a problem a normal person would struggle with, in my situation it's a serious problem. The wound has become a more persistent injury and now is a part of my regular routine and is a constant source of pain.

Lockdown - a word we never used - has now become part of our daily vocabulary. Along with the word came something new, a quieter world and new fears.

I began to realise that I could be victim of this unscrupulous enemy. The contagious nature of this pest seemed to enhance the sense of fear around me. I thought that I should make arrangements for the possibility that I may lose the ability to keep control of my affairs. I have been a very private person with a massive backpack of guilt for all the pain I put my family through. I did some terrible things during a time after my accident; I didn't realise how distorted my world view had become.

So I wrote a letter to Colleen and the children and set out my access to my affairs. After giving a link to this file on the familty WhatsApp I could relax and focus on getting better.

Lockdown week 5 and government insistence that they were following scientific advice and that they were doing their best begins to unravel with news of their incompetent choices. The stuttering start to the lockdown, the hesitant start due to the lure of a simple herd immunity plan with larger loss of life vs the WHO recommended approach of lockdown and "test, test, test". Eventually settling for lockdown without proper testing and tracking. The country hurtled along the Covid disease curve while the hospital death toll climbing into 20 000 range. At this point news of the serious deaths in the care sector exposed the deep running neglect of the care sector and the prejudice against the hard done by people who worked in it.

The testing system has improved and the care system is finally getting tested and also some PPE but now it's a race to setup a track and trace system. This is an obvious failure of planning. Even a basic knowledge of critical path scheduling would know to start recruiting and training the people you need to do the track and trace at the same time as you ramp up the testing program. It seems that our leaders cannot think ahead; so now that the test capacity is up we have started to build a track and trace function.

I could continue to list the mistakes and obviously incompetent decisions of this government who have been beguiled by pseudo intellectual Dominic Cummings; but it is boring and truly hopeless.

Hope has drained away but I have been getting stronger and a brief spell of warm weather has been a ray of hope - maybe I will survive the virus, maybe I will have a tomorrow.

Hope drains away

It's 2020 and lockdown has been our way of life for so many weeks. However, my way of life hasn't changed; I have effectively been locked down for 4 years. Ib have not been able to leave my house for this period except for a a disastrous trip to SA, more about this later. Virtually, not understood fully by those around me I was struggling with depression and a feeling of hopelessness that death was eminent or incredibly close.

I am paralysed from the neck down. In 2016, a long term urinary tract infection started to move around my body. First signs were swelling. Puffy legs, ankles and skin. It was not long before this nasty infection (pseudomonas) started to fill my lungs with fluid. Then one morning I couldn't wake up.

This kicked off a period of instability with my health improving and dropping causing 3 separate stays in ICU. My final stay in ICU lasted for months and as I had weakened so much during this period; I was in no position to argue against the decision to operate and put a tracheotomy into my throat. I finally left ICU with a new care package and a ventilator for overnight use. Life became more difficult and monochrome. I didn't realise it but hope was leaking away and I found myself in a place where I couldn't think beyond surviving each day.

My isolation increased and I found speech became increasingly difficult  I started getting low blood pressure durring the day, as low as 54/49. The biggest low came in September 2019 when I decided to have a trip to SA to see my parents and for my kids to join me for the visit. I picked up an infection on the flight, that nearly ended it. I spent the whole time just barely awake. I used all my tools to keep my chest clear and my exhausted carers were called upon to do the work I needed to keep me out of hospital (I was sure that I wouldn't survive in that case) so between my carers and the local GP we managed to clear it up to allow me to fly home a week after my scheduled date.

to  be continued ...

2017 What just happened?

A reflection...

The year draws to an end and a new year begins. It is the season of peace and goodwill. The last 18 months have felt like the pus pouring from a rotting wound. I have felt bewildered by the hatred and cruelty that seems to be everywhere in the world today. The gap between the super rich and the rest is widening. Racism and hate are brazenly displayed. World leaders are standing by while there is genocide in Burma, people dying of starvation in Yemen, murdering factions in the DRC (Congo) and ongoing suffering in Syria. There is so much separation and division, such violence and hate, that I feel a sense of deep despair. Where is the hope? Where are the leaders that stand up for what is right and good? Where are the leaders willing to  make a difference and speak out for the oppressed and weak?

In the richest country America we see a leader who has only ever known wealth and affluence brazenly displaying prejudice and ignorance. Leading his nation into some dark places.

In the UK we see politicians trying to outdo each other as Brexiteers, making wild claims about the prospects of Britain separated from Europe. Coupled with this a rise in hate crime and nationalism.

In Austria we have seen the rise of a party with roots in Nazi thinking becoming the second largest party and entering government through coalition.

Intolerance is on the increase and is given more license by media and leaders with attitudes and opinions filled with thinking that is based on attitudes of intolerance and racism.  Blaming their problems on others (Muslim, black, immigrants, Mexicans etc.).  Far right groups are given air time and are on the increase (Austrian politics has recently seen a far right group come 2nd in recent elections). Demonization of immigrants, Muslims and foreigners is an increasing trend that is reminiscent of the Nazi campaign against the Jews which started before the 2nd World War, when they were just a minor party.

The destruction of other cultures and people starts with a seemingly good thing, the fight to protect your own culture, people and way of life. This is used to justify blaming another group which quickly descends to dehumanising and justified destruction of this group. Good men and women are drawn into the thinking that it is right to destroy another group if they are evil and threaten your own people. The seeds for genocide are sown by good people twisted into bad thinking.

I feel helpless as I sit in my wheelchair and watch these events unfold. Frustrated by my speech impediment and inability to express my views verbally, I have to write them down. I worry about the world that we have created for our children. A world that seems to lean easily toward hate and division, towards falsehood and misinformation. Where is the hope?

I read a quote once that said "For evil to flourish, good men and women must just do nothing". It is going to take the voices of good people everywhere to speak out in their daily lives against prejudice, dehumanisation, hate speech and division. We all need to be more tolerant, less judgemental and more caring. Working toward a future of hope and common humanity. A world that works toward the common good.

I know that it sounds like "namby pamby, liberal nonsense" but I am not saying that we should just let go of our societal structures and norms, instead we should examine the world around us and stand up for the weak, for the marginalized and for those who need help.

As 2017 shudders to its close and 2018 starts to show, make it your resolve to stand for good when the world around you turns negative.

Do not go gentle…

Lately I feel the effect of the last year of illness. When I ended up in ICU 3 times and spent almost a year in ICU recovering and waiting for care arrangements, I found out that whilst I was sedated; there were considerations about whether to turn off the life support. I realised that the value of my life had become a lot less. Effectively, the question of whether to preserve my life had become a justification. In other words "was there any reason to preserve my life".

When one is weak and vulnerable, the value of your life is diminished. I know that I have a low quality life compared to normal able bodied persons. I don't go out much, I can't ever have a normal relationship, I experience severe periods of loneliness. The list of negatives is indeed long.

Yet, through all of this I love and I am loved. I am still able to do things for others whether advice, guidance or encouragement. I can enjoy the small things a warm fire, a sunny day and beauty in people and things around me.

I fight to keep alive; some weeks it feels like a daily challenge. I am very aware of the fragility of my life. There is a point where I am powerless to make a difference to my health and I have to let it be. On the days when I feel the weakness and my system deteriorates I despair at the tenuous nature of it all.

The words of Dylan Thomas addressed to his dying father replay over and over in my mind; 

Do not go gentle into that good night,

Old age should burn and rave at close of day;

Rage, rage against the dying of the light.

Wrecked

I feel alone, hopeless.
Where do I turn?
My dreams, my hopes have been eroded.
I cling on to the flotsam that remains.
I am sinking, alone.

Carpé Diem

A couple of months ago I spent a week in hospital with an infected gallbladder. I was very ill and in terrible pain. I couldn't move for the pain and food was out of question. I was scanned and probed and the Doctor decided that antibiotics were preferable to surgery. I think this was based on my condition (as a quadraplegic) and the potential impact of surgery. It was 3 days into my stay and on the 2nd set of antibiotics that I began to feel really low. I had a sense of my mortality and all my plans still unfulfilled, suddenly I was aware I didn't want to remain in the hospital, surrounded by strangers. I wanted to be with people I loved.

On this day,  I was asleep. It was 4am and I was struggling. I was too weak to wake myself and the world began to fade; I realised I needed to come back. I was awoken by Debbie after she woke up to find  me lying very still and I wasn't breathing. I was filled with a sense of gratitude, relief and a little afraid.

I decided I needed to get out of the hospital as soon as I could.

This weekend I had with my children and I loved every minute. I won't see them for 3 months and I will miss them.

Every moment of life is for being.... so be a part of every moment.