Ok, it is still summer technically, but as we come to the end of the month and look to September it means the start of Autumn, cooler weather and back to school.
For starters, I have started to read Ava Easton's book 'Life after Encephalitis' and the importance that it raises the importance for people to tell their stories of what happened to the, how they coped and manage with the after effects. Some of the key points within it reminded me of my experiences. Why is there such a strong need for people to be vocal about the illness? Ava discusses this, and it is something I meet with every time I discuss the illness - a clear lack of understanding the illness with the vast majority of people never heard of the illness. Together with it is the misconception by some within the medical field to see it as simply an acute illness. This is something that Celia and I had to deal with. Once it is diagnosed as encephalitis, Celia was administered with some anti-viral drugs, given a few days rest and discharged back home. There was little from the staff to offer support or direction, just sent home for us to deal with.
But this is the issue with encephalitis, the issues and problems only begin post acute illness. The brain has been damaged, Acquired Brain Injury, leaving the person with a vast array of issues: personality changes, mood swings, depression, anger, frustration, limited mental abilities - a combination or all or a few. There is no one simple statement to say 'it is this.....' Each and every person is unique and thus the issues they deal with are unique. So the issues that Celia and I had to face will be vastly different from anybody else.
I suspect, it is a combination of the unique issues that people deal with, the lack of knowledge of the illness and the management of the illness that drives many to put pen to paper (or face the PC) to write down what they have done. How they have coped. How families have coped and seen what has happened to their loved ones.
It is something I can relate to.
Meanwhile, the 8th Half has been completed and mid Sept presents the 9th. Thus I am 2/3rds of my way through this challenge.