Bernie’s Story

Story (told by Bernie):  

I will try keep this on the short version!!

My life has its challenges as does everyone’s. I have wondered what possible purpose someone like me could possibly have in this world. Perhaps the very thing I have spent my life trying to hide could be the key to the answers I seek. I am not sure, all I know is my body is breaking and I am on my knees. My faith is being tested like never before!

My family and the real me

I am in my 40’s and a father of a beautiful little girl -which is a miracle in itself! I have had to move back in with my mother in her annexe which is part of my sister’s property. They are now “technically” my carers! Which I have found very difficult to accept.

I’ve had to stop a potential brilliant career opportunity amongst other things. In short, I am a proud man. So, my pride is almost non-existent due to the path I am now on. I guess it’s now time to allow the real me to step forward and not the self-conscience person I have projected all these years, perhaps by the grace of God, I will find my purpose and find peace.

I have tried my entire life to keep my ‘normal’ day to day life almost separate from my ‘burden’ and with a lot of pressure on myself to keep the burden on the down low and keep up with everyone else despite my issues. “No need to trouble anyone with all that.” In fact, the less folk knew the happier I felt about it. So much so that for a long time even my closest friends didn’t know the full gravity of my health issues. I didn’t want to be treated differently. I am lucky that the couple of external signs, that “all is not well with this one”, can only really be noticed by a trained eye. Unfortunately, this is no longer possible as it has total control of everything in my life!

History of my condition

My family were not Christians in any shape or form until my birth that is. I was born with a very complex medical condition now known as (for the medical folk) A complete situs inversus, dextrocardio, cynotic congenital heart disease, single ventricular complex tranperssesion of the great vessels and kartagenes syndrome and bronciastisis. In layman’s terms my organs are on the opposite side to the normal and my heart now on the right is also flipped over. I have a three ventricular heart rather the the normal four and the two main arteries from the heart are swapped around to0.

The kartagenes syndrome well that means the hair in your sinus, that filter the air you breathe, either don’t work or are non-existent. Of course, I have the later. So, I am prone to catch chest infections which over time help develop the bronchiectasis.

My parents were told, children born with complex conditions like this don’t live past 18 months old. I had my first heart surgery at five months old, which had no guarantee, and my chances of survival were never over 30% at best – and that never changed. It was then that my father turned to a window in the hospital and said in a prayer. “If there really is a God up there give me my son and I will serve you.”

I survived much to all the specialists surprise! However it was never going to be plain sailing. I had many procedures in my childhood. By 13 years of age I had had three heart surgeries and many ear surgeries. All the while having my life expectancy predictions adjusted – every time I passed the specialist age prediction my body would fail – meaning that the age I wouldn’t live to was moved, such as “he won’t see three or five, nine, fifteen, he won’t get to 18 years of age and he’ll never see his 21st birthday.”

 

Me as a young adult

All the while my body defied medical science as all they could do was try to treat the symptoms and hope it helped a bit. God was keeping me alive for what I do not know. Being a typical bloke, I lead a ‘push the limits’ type life and had car accidents and motorcycle collisions some which should have killed me, but I always got out unscathed. Even though the vehicle was a right off I was fine.

After my 21st birthday I kind of went off the rails and tested just what my body could cope with. I worked hard and partied even harder. I did get ill, I had pneumonia twice and both times lost the use of my legs and had to learn to walk again. However, I still continuously tempted death. I had drifted far from my Christian upbringing until one morning something was different.

 

 

 

My wife and daughter

After tests and a meeting with my heart specialist I was told I had one year left to live. My partner and I

moved up to my family for support and to start my palliative care. This was 2012 and I got so weak and ill at one stage the Hospice were preparing my family for the end. But not this time sunshine, my health did a 180% turn and I walked out of the Hospice got strong, got back to work and ran a small courier depot for a while and my, now wife, and I moved into our own place.

Then my daughter came along. I couldn’t have children….apparently, I was continuously told this, like my supposed demise. So, when my wife, said she was pregnant I asked who the father was! She is mine. Unfortunately, my wife and I later separated as we were far better friends and worked well together to raise our daughter. I also found my dream job and life was starting to look promising.

My career and the pandemic

A few years ago, things changed – my body slowed again and my family advised I should move from my now bachelor pad to my mum’s for support. I had to accept that I couldn’t honestly start a career with this health issue scaling it’s self up. So I agreed to complete my current sub contract.

However, the pandemic hit and shielding was what I needed to do. Unfortunately, from my entire family – including my daughter, due to this pandemic and my confused body, I had to keep my distance from them. I was now in the category of ‘clinically extremely vulnerable’ according to the stats. I had done this shielding malarkey before, so it wasn’t such a train smash, really, I mean I had had to do a form of shielding after each of my surgeries as a child, for at least a month, in order for my immune system to rebuild. But how wrong I was! Being separated from my child was the hardest part!

Unfortunately, it was during this time that I had a huge heart attack and it was discovered that I had a tumour growing against my heart. Not cancer, but it is inoperable nor could it be biopsied. No one knows where or how it came to exist, but it had killed off part of my heart and it would continue to grow. Yes, it’s a personal ticking time bomb. Not to take anything away from my already complex condition. I mean that’s the granddaddy and this tumour is the new kid on the block.

So back into palliative care and those words I have heard so many times before from medical specialists, “I am sorry, but there’s nothing we can do except keep you comfortable”. Such reassuring words! Now I have had a total of five heart attacks in the last year or so. All of which should have killed me. I have again got so weak and ill that even for the first time in my life I got truly scared that this was it. My daughter would grow up without me and that was the scariest part of it all.

Living with Faith

This time around death’s door opened and again, by the grace of God and much prayer and faith, my body said no – no, this is not our address and I have been getting stronger and I walked out of the Hospice a couple of days after my fourth heart attack.

The road has been tough to get stronger and very long. I know no one on this earth can help me or fix me. Every day is racked with uncertainty. My only hope is God, Jesus and drawing closer to him. I just want to see my child grow and get to a point that I can move into my own place again.

All I have is my faith, my will to live and my story. I am oxygen reliant and on some potent life extending medication to try and keep me as comfortable as possible. When I hear folk say “Oh there’s no God”, well honestly if you’re talking to me or reading my story there is definitely a God because the other option is medical science and they wrote me off many times over and they have no words as to how my body keeps breaking the ‘medical rules’. The only answer I have is God is good!