You are not your illness!

I always thought I had a healthy relationship with death, I mean after all, we’ve being doing it for centuries and so you’d think we’d have got it right by now. January 2013 and I found myself in hospital with a regular routine search for kidney stones, the pain in my kidneys was excruciating, I was doubled up with pain – ironic in the year I decided to give up drinking! Well after many scans and an op to put a stent in no sign of stones, so they kept me in a few days longer, that’s when things got rapidly worse, first a chest infection, then chest pains and what felt like mini heart attacks, fever, complete loss of energy, sickness and eventually lots of bleeding from every ‘hole’ imaginable! How could this happen from just a minor operation?

Several consultants were called in and it was decided there was nothing to be done and I was taken to ICT and as my wife was told – ‘as close to death as any human can be’ – I remember being told you’ll be lucky if you made it through the night. Funny lying there, helpless, bleeding, lying in my own crap and blood in a freezing side room as they thought I had TB, I felt incredibly calm, if this was it, if this was how the story ended well fine, in any case I didn’t have the energy to fight, the only thing bugging me – it had been under 6 months since Lizzie and I had got married after 10 years of holding off and I remember thinking, I’ve let her down, I took all this time and wasted it, if I get out of here I’m never wasting another day.

A week or two later, I wake up in St.Thomas’ hospital, my dad holding my hand, his complexion vivid silver with bubbles floating around him, somehow I knew I had to catch these bubbles and suck in their contents. Of course I was on morphine and was having the most spectacular trip possible, the blinking lights of the towers of equipment. Somehow they’d managed to contact a specialist who said I think he’s got WG Vasculitis – a very rare and complex blood disease that causes the white and red blood cells and your immune system to attack you and inevitably kill you by blocking all the minor capillary vessels in your vital organs, kidneys, lungs, heart. So rare in fact they call it the 5 consultant disease and many consultants don’t know or can’t spot the symptoms. I was put on an ECMO machine and in an induced coma, this basically is intensive care with machinery taking over all your major functions including breathing, kidneys, heart etc. a complete plasma exchange and blood transfusion.

The following weeks were agony, sticky gunk from my chest – clotted blood and phlegm of a thick gluey consistency having to be hoovered from a pipe down my through and physically pulled out by hand because it was so stuck. Days and weeks of vomititng, dialysis, and not being able to breathe.

I would be lucky to walk again they said, and lucky to make it more than 18 months. I remember them saying we lost you a few times, people have asked what’s it like to die?

I just remember peace, total peace, and not surrender but acceptance. I don’t remember any white lights or tunnels or angels or anything, but that’s because I knew it wasn’t my time, I guess it’s like whe you arrive like I do often on a business trip a few hours early before you can check in your hotel room, you know what it’s like, you can drop your bags off at the lobby but you can’t check in yet!

Fast forward to now, as I sit here typing, seismic changes have happened in my life.

This January, finally my kidneys gave up the ghost and stopped function so now every night I dialyse or 8 hours at home, I chose this way so I could still run my company and work, but it’s not easy, I don’t feel attractive anymore, I have a big belly very morning full of 1.5 litres of dialysis fluid that looks like a big beer belly, I feel ashamed sometimes to go out because I feel like a part of me has been taken away, I can’t exercise, I can’t get a six pack only a barrel yet I choose to feel amazing…

Why is that?

Well I went on Broadband Consciousness (BC for short) run by Richard Wilkins and Liz Ivory my dear, dear friends who have changed so many lives. You see BC works at the level of identity and in short any shit that happens to you is just that – shit that happens to you, it doesn’t mean you’re shit!

All along I have been saying ‘ I am not my illness’ and as a result the way I feel doesn’t have to be governed by the identity of my illness. I go to clinics most weeks and am amazed and saddened at how people particularly middle aged men (like myself) assume the identity of their illness. It is a badge to be worn that gives significance, some people revel in competing with who’s had the worse conditions, pains, medication etc. not conversations I choose to be part of!

You see as men we are conditioned to feel we can’t share our emotions, so sharing illnesses is a great way of saying look how vulnerable I am. I prefer to say sure I’ve got an illness, and yes sometimes I feel down, I feel sorry for myself and I feel frightened, but my greatest fear is not death, it’s not being honest about showing my emotions because if you keep things bottled up someday like a pressure cooker it’s gonna blow. Richard and Liz taught me this and I have taken great inspiration from Richard Crisp – so thanks Richard.

Last few days have been tough, a nasty tumour in my inner nose cartilage, courtesy of vasculitis had to be chopped out and it was too dangerous to put me under so you can imagine the agony and fear! Two or three days of constant bleeding and yes I feel low. Someone once said to me the beginning of depression is when you can’t see your future. Well I can’t see my future and yes death is constantly on my mind, but thanks to BC I have put my past to rest and I can enjoy my present – which means I can enjoy my future. I might not able to see what’s round the corner but I can’t wait to see it!

A consultant once asked me – ‘you are the miracle man, the hospital’s greatest success, how do you do it?’ my answer – ‘that’s easy, No.1 I am not my illness, I am me and No.2 I never think how long I’ve got – in fact – I know how long I’ve got – the rest of my life – and that’s all I need to know.’

You can find more about Broadband consciousness at

Thanks for reading, thank you Richard Crisp for this important and useful forum.

Gentlemen, you are not your illness or the shit you have in your life – its just stuff that happens to you – its’ not who you are!
Lots of love
Jim Wright

By |2017-12-03T21:09:35+00:00December 3rd, 2017|Your Voice|0 Comments

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