“Occasionally something reminds you of the darkest times, maybe it’s just a way of making you appreciate how far you have come and how much your character has strengthened as a result of this experience.”
It’s a line that closes the chapter on Gillian in the book, “The Psychic Driving Instructor.” I was driving around today and, just as I was arriving at my next pupil, the radio presenter introduced the next feature which was about Spinal Muscular Atrophy awareness week. If you have read the book you will be familiar with Derek, my older brother who passed before I was born, and Gillian, my sister who passed when I was 9. Both suffered with this muscle wasting illness and left indelible memories for everybody concerned. I came to terms with it a long time ago – so I thought.
The presenter asked what the illness was and the representative explained it is gene related where two people with the same gene come together and can lead to a baby being born with a missing gene. It leads to muscle wasting where the baby cannot use their arms and legs because of poor muscle development and the wasting continues until they become useless and floppy. The neck cannot support the weight of the head and the head flops to the side and has to be supported. The wasting continues and breathing is affected because the muscles are not strong enough to work the diaphragm so the baby loses the ability to support itself and usually doesn’t survive past the first birthday. There are several forms and there are children of all ages who continue to battle but for Derek and Gillian it was terminal.
Bang! From a feeling of being in control I now wanted to run away.
With any trauma there is always the risk of the most innocent thing triggering a response that brings back all those feelings of a time that seemed to be buried in the past, hence the importance of the line from the book. I had to turn it off but the feelings had already returned.
Gillian was a bouncy baby girl, always smiling and gurgling away despite her limited movement and life expectancy. I had always played games with her and I know she has been with me since her passing but the darkness of that time will always be a pivotal part in my life. I checked on the internet and, sure enough, there was information about it on the web. There were photographs of happy looking children listing their achievements and special events, most of which you or I might take for granted. When Gillian was alive there was so little known and it was so rare that it was never easy to explain to people.
We also had a similar experience when our son had neuro blastoma and had chemotherapy as a baby (again it is mentioned in the book). He survived but we came across those who didn’t. The overwhelming feelings that would come from these children were again love, happiness and inspiration. There were dark times, obviously, but while these children were alive there was never any doubt that they were here for a reason and their presence was enough to affect all those around them.
The one factor that always remained constant was love. Whether it was from the parents, the excellent medical staff, or the children themselves, there was always a feeling of love mixed with a sense of injustice that children should have to suffer this way.
It is this injustice I feel again today. The book is about my early spiritual awakening but since it has been written I have seen many examples of how our world and society is littered with injustice. There will be a time when I am old and infirm and unable to run around or even speak with authority but I will still be able to question what doesn’t feel right and try to reveal the truth about our world. While I am able to question for those who are vulnerable in our society then I will do. I am not a politician, or a scientist or a great leader, but I am an awakened soul who can see through the deciept that governs our world and as I see the Western world embark on wars and manipulate the wealth and health of it’s people I will always question and you should, too.
After all, when the cost of Health, Education, and Social Welfare is debated in the public eye and seen as a finite resource, the cost of war on terror/drugs/freedom/democracy (delete as appropriate) is a never ending pot of money that is never discussed.
Today is a dark day when I am personally feeling the injustice of every child who has suffered through serious illness, abuse, war, etc. The currency of a child is love, it is never money. the value of money is impressed on them by society as they grow so my message to humanity is simple:-
Let love be the currency of the new world and let the children show how to use it.