Waging my own War

I have a rather unsettling story to tell.  It is a story of lost memory, confusion, fear and cruelty.   The only way I know how to get past a traumatic experience is to write it down or to tell someone about it – someone that I can trust completely.

I can never just push a switch like so many can do and just say, “Well, that is in the past and there is nothing that can be done about it”.  I spend hundreds of hours going over and over the event until I can understand it for myself. 

I do not like to talk about other people, although I feel that I have a right to speak about my own experiences.  For this reason, I am not going to mention anyone’s names.   The people involved were  nursing staff, doctors, the police and three others who thought they were doing the right thing.   How wrong they all were.  What I suffered is almost beyond telling so this is just a quick summary of what happened when I went AWOL for those months.

 Today, I understand what happened and yet, there is not one medical professional that knows what happened…let alone cares.  I, like us all, am just a number and that number adds up to money.  Medicine today is about money and sadly, no longer about care.  If I have learned anything from this it is to know that if it is to be, then it is up to me.  Only I know what it is like to live in this body and therefore only I know what it needs to be well.  There is no medication that is a cure all for everyone.  We are all different and react differently to the same drugs.  

The bulb went on and has stayed on since last night.  I found the reason for my short term memory loss and my extreme fear of going into hospital has made me distrust everyone.  It has, however, made me strong enough to be able to tell the medical people what is wrong with me and what they should do instead of putting myself at their mercy. 

But how … how could I have done that when my mind was gone.  How could there have been no other option than to have me sectioned?  I was categorised as psychotic and schizophrenic then taken by the SAPS to Livingstone State Hospital.   Before the state hospital there were three other hospitals that “tried” until my significant others were told they have no option but to have me sectioned.  And that is exactly what happened.  Thank God for the female psychiatrist who saw me at yet another institution.  She asked, “What do you want from me?”  My answer was simple.  “My mind” She recognised that lack of sleep and uncontrolled pain can cause confusion and loss of memory and put me on medications to make me sleep.   It worked!   However true that may be, there had to be something else that triggered that set of circumstances and so I spent those hours trying to understand what happened to my January to May 2016 months.

Someone brought me a book day before yesterday to read.  It is called Proof of Heaven written by a Neurosurgeon’s Journey into the Afterlife (Dr Eben Alexander).  I had not got past the first 10 pages when I jumped onto Google because the similarities with his illness and mine were astounding.   As with me, he was infected with klebsiella pneumoniae although he did not have anything wrong with his immune system.  The klebsiella had entered his cerebrospinal fluid and was literally eating his brain.  In my case, I have  two of the hospital superbugs, klebsiella pneumoniae being one of them.   These bacteria, resistant to antibiotics, are deadly, depending on the strength of the patient’s immune system and the area or organ of the body that it infects.

Scientists from the University of Miami and Columbia University in New York City suggest that there is a link with vascular disease (leukaemia) that worsens memory through this immune pathway (the blood) and those most at risk are the patients that have klebsiella pneumoniae and H pylori.  I have been unfortunate enough to have both of these bacteria colonizing in my stomach and kidneys.  There is a war raging in my body; these bacteria and my own non-existent immune system.   Having Primary and Secondary Immune deficiency necessitates a transfusion of donor immune cells into me every second week.  The war is on between my propped up immune system and these deadly bacteria which cannot be adequately treated with antibiotics while cortisone therapy depletes even those donor cells I receive. 

Why then did not one medical practitioner look further than their noses to see that my own body was the cause of my memory loss?  I kept on telling them, over and over again, that the only thing that was wrong with me was a short term memory loss.  Why did not one of them listen to me and look further to the possibility of these deadly bacteria affecting my memory and simply stamp me as psychotic and schizophrenic? 

I kept on asking them to please give me my IVIG so that it could fight whatever was going wrong, but in their “absolutely never can be wrong” attitude decided that I was too psychotic to lie still enough for the transfusion to take place.   Added to this was their idea that I was having an opiate reaction and that I was hooked on opiates that were making me psychotic.  Not once did anyone think that it was possible that the very bacteria and viruses that I fight in my body every day of my life could have been the cause of my memory loss.  I wrote screeds of stuff on any piece of paper I could find, trying to stay in touch with what day it was, what time it was and what was going on in my life at the time.  It was during this time that I felt so detached from everything around me that I hummed and then sang my tears into prayers.   If you have a mind that is intact, rejoice!  Do not allow it to feel depressed or sad.  There are far too many days that we forget that at the end of it all, it is the mind and your connection to God that is the most important aspect of life.  And with those two things connected and intact, I go to war against the bacteria and viruses that lurk around my body.  It is a fight that I intend to win.