Hi there,
I'm Merl. As an infant I was involved in a motor vehicle accident and knocked my head. Back then there were no brain scans available, so the dr did his examine and basically said 'Bump on the head, bit sore but all OK'. Things were not OK. There were signs things were not OK but they were not identified at the time. I was labelled a hypochondriac. There were behavioural issues over the years, but I was just labelled "A shit of a kid" and I must admit the label certainly fitted. If there was a right way and a wrong way of doing things, I did it ALL the wrong way.
So now we fast forward 20 odd years and I'm driving down the road and the lights went out, I couldn't see. I went and had scans to be told I have a 'nasty' growing in my head. They operated (craniotomy) but due to the positioning of the 'nasty' not all of it could be removed as it was too close to bits I need. So the dr's sent me home saying all was fine, but again things were not fine and 3 months later I was back having further surgery and this time had a shunt inserted.
Post op I pushed myself to rehabilitate and I returned to work, sure things weren't great health wise but I could push myself along. I had to learn to ignore some of the weird sensations (tingles, sweats, HEADACHES!!!) but I managed the best way I could.
Then in 2013 the wheels fell off my little wagon and in that year had 3 surgeries. Since then I have again been trying to rehabilitate myself, without success. Again the dr's say all is fine, but I'd like them to take my pain and manage it for a day, just one day, and see how they would cope. They tell me "we understand pain..." but understanding pain and managing pain are 2 totally different things. This is something I believe they have NO understanding of. So that's my 'personal' brain story.
In addition to 'personal' story/expeiences, I have married into a family with 'brain issues'. Six months prior to my own diagnosis my (now) niece was diagnosed with a benign brain tumour, which was removed successfully, but as a result she developed an aneurysm. She has had 3 additional surgeries on it. Then in '11 my sister in law, my wife's twin sister, passed away after a long battle with brain cancer (glioblastoma) and we all supported her for as long as we possibly could within her home before she was admitted to palliative care.
In my previous employment I worked with people with disabilities. Teaching and supporting them to live an independent lifestyle. Teaching them how to live in the community and look after themselves. The range of disabilities covered everything from acquired brain injuries, intellectual disabilities and physical disabilities. This has given me some truly hands on experience and in some ways a greater understanding of my own present situation, not that this has made things any easier but more that I had 'some' understanding prior. I actually thought I knew all about it HA. But now, being the patient... ....Ohh hell, how little I actually knew. I can now look back at some of the skills my clients have and how they cope and utilise them for myself. In all honesty I think they taught me more than I ever taught them. Never believing that one day I would be the one with the disability.
So, as you can see, through my experiences, I have a many faceted view of the brain as a patient, as a carer, as a skills teacher and as a family member.
The only thing I'd like to add to all this, is that, this is NOT an easy journey for any of us and anybody who tells you it is, has NEVER been there. If we can assist each other along this journey, the better off we could all be.
Merl