Top 10 things not to say to someone with a brain injury

Thanks Marcus.  I've come across a few interesting comments from friends and sometimes family with regards where I should be in my recovery from stroke in October last year.  Physically I am fine, still  having issues though with aphasia, concentration, memory and fatigue.  I am improving and I have been lucky with the support I've had from my partner and others in  my life.  I realise most people are genuinely concerned and have tried to be supportive, but sometimes they have no idea what's really happening or what it's like just adapting to day to day  activities - some better than others.  I don't think they understand the inconsistencies in improvement when it comes to recovery and the repeated efforts made to reach particular goals (simple or more complex).  Anyway.., my motto is definitely "one day at a time."   It won't' happen overnight.., but it will happen, ;-)  

Hi Belinda, 

It looks like we both have the same 'disability' - aphasia, memory, and fatigue - and both 'walking/talking' stroke survivors. So, nice to meet you!

My family and friends know about my problems and support me in any way they can. Without them, life would be insanely hard. But, only a survivor can understand how difficult it is to deal with cognitive deficits, especially fatigue and sounds. I have an open room - kitchen, dining table and the living room - which is great when we all together, however, I have to leave the room because it is too noisy. Sometimes, they feel that I am not participating in the family, but for me, the noise is too much. I live in Japan so communication is in both Japanese and English ... 

"One day at a time" That is how I live every day - step by step towards my goals. 

Marcus

Yepp.., this whole "social participation" thing was very difficult for me initially.  When I had my stroke, my mother and sister were both visiting from interstate.  I found it very hard (exhausting actually) to keep up with the simplest activities and conversations.  I've always been fairly open with friends and family when it come to health issues if they arise, so they were made aware of where I was at and how I was feeling very early on in the piece.  I did have some issues with other family member attitudes (in-laws), but I've managed to keep my explanations, boundaries and my goals fairly clear for everyone to understand.  Whether some people find it difficult to understand or take my social absences personally is not an issue for me at this stage.  After my family visitors had returned back home, I was able to relax (as much as you can when you're still not with it) and slip into a bit of an insular routine that kept me safe and comfortable.  Emotional lability was something that came up for me - that was very off-putting and made socialising or running chores quite daunting and confronting.  Bursting into tears and feeling an onset of panic and anxiety was (and still is sometimes) something that makes life interesting.  I avoided Christmas gatherings this year after having a meltdown on Christmas Eve with family - too many people, not a familiar environment, intrusive questions, strange noises and expectations of others made that particular event absolute torture.  I still have bad days where I close the door and literally stay inside and concentrate on breathing and just feeling comfortable and safe.  I am a keen nature photographer and I take advantage of every opportunity to gather my "happy snaps" of my feathered friends and various river side scapes.  I'm not sure how long things will remain somewhat uncertain for me future wise, but I do feel like I'm managing things a lot better.  Thanks for listening - take care,   Belinda

Hi Belinda, 

I am also a keen 'photographer' and mtb rider, so I combine the two. I only use my iPhone, but if you are interested and use Instagram, my account name is kochimuz. 

A variety of shots, none of food, parties or family, just what I see and feel during my hikes or rides. 

Marcus

Thank you Marcus, would've loved to see some of your images.  I don't have an Instagram account.  I usually wander on down by the river here in Perth and spend time with either my feathered friends or just take happy snaps of the landscape and river side views.  Keeps me sane.  I've attached an example from today of one of my therapeutic walks by the river.  Take care, Belinda

A nice shot. I would like to take more photos of birds but an iPhone is a little difficult without a longer lens. Another of bnw shots, some are 'dark' and others 'bright'. It all depends on the mood, or the shot will work in dairy/blog/book. 

Love your images Marcus.  I'm a sucker for contrast in light, shadows and reflections.  Inanimate objects are good, architecture and "mini-snaps" of engineering or items from construction jobs work well for me as well.  Basically anything that catches my eye interests me.  Thank you for sharing, take care, Belinda

PS:  My husband works on construction sites putting together hoists for workers and building equipment.  This is just a part of one of the masts sitting on his truck waiting to be erected the next day.