Weekend Conversation No.1 (new group)

Marcus
Marcuson Saturday, June 10 2017
5 Comments

I am just wondering if some people are interested in having a ‘weekly conversation’.

 

At the moment, there seems a number of voices going to different directions at the same time.  Maybe, Sunday tonight, the topic for this week is, for example, 'Dealing with motivation' is posted and it will last for one week. People can look forward writing and read their and other’s posts.

 

I know there are a number of sites in regard to strokes or TBI, but I have some concerns about the privacy of FB. I would prefer to use EnableMe rather than share your thoughts to the whole world.

This weekend’s topic would be: ‘Do you think to have a weekly conversation a good way to connect with more people and learn about their stories or journeys?’

 

Just an idea.

 

What do you think?

5 Responses

Hi Marcus

 

Yes I'm in - as a I think that the more we offer, the more inclusive we can be.

 

Great idea :-)

 

Sue

Hi Sue, 

 

I hope we can get a few others to join the group. It would give time for people sit back and think about the topic for the week, write their post, and follow up with answers or questions. 

 

Maybe on Monday, I will post a question or thoughts on the board. I will think about the topic for the first one.

 

And it would be good to have a couple of people to take turn posting the question. 

 

Marcus

 

 

Marcus great idea. I would like to be part of it. Jenny

Hi Jenny, 

 

Thank you for thinking it is a good idea and welcome to the group! 

I was hoping for more people to join the group, as there are more people, there are more conversations, topics, ideas and, more importantly, new online friends who understand the struggle of dealing with their strokes.

 

So, shall I start this weekends conversation? If that is ok, then I send a new post - Weekend Conversation 2 (new).  

 

 

Please check the forum today or during the weekend!

 

 

Marcus 

 

  

 

 

 

 

 

 

 

 

 

 

This is the same post I send to Weekend Conversation 2 (new). 

 

Let's find some interesting, useful, thoughtful, and challenging topics for next weekend. But, first, please keep on sending these posts about Weekend Conversation 2!

 


Conversation 2 - How to explain what is feels like after your stroke to others?

 

How can we explain to other peoples that our brains have changed, mostly in a negative way, and that it is difficult to go back to who we used to be? How do you explain this to people close to you, and those a little further way?

 

Some survivors have physical and/or challenges, and others, like me, have no physical problems, but a number of mental challenges such as aphasia (mid-mild), cognitive fatigue, perception, anxiety, and depression.

 

I know there are many podcasts and post about these problems, but for me, I still find it difficult to explain to colleagues, office workers, and ‘friends’ my brain has changed, or missing parts used to have.

 

Two examples about not ‘getting it’:

 

1.) An intelligent English professor

He was helping me with my reading rehab went I started to struggle to find the word even thought the word/sentence was in front of the page. He stopped, looked at me, and said, ‘Look at the word, and SAY it!’

 

I looked at him and thought, ‘If he can’t understand what is happening, words and alphabet letters disappearing in the air, how can I explain it to an average person?

 

2.) ‘Microsoft Vista’ and my new Brain

 

Last Friday, I had a meeting with my department head, office work head and uni doctor to coming back to work in July. During the meeting, the doctors cautiously asked ‘ Are you better and ready to go back to work?'

 

I found his questions quite disturbing. I am still dealing with the deficits left by the stroke and anxiety, so I realised that another professional, a doctor, doesn’t understand how hard it is to live with a damaged brain.

 

I thought a better way to explain that my brain is like after and 3 years from my stroke, I gave an anecdote: When Microsoft’s new OS Vista was displayed to the computer world, everyone was excited (note: I am a Mac fan). However, Microsoft fans quickly found that it had many faults and flaws. They would update to fix the new problems, but every time they did that two more problems popped up. It looked like a fairground ride, one pops up, hit it, but another one pops up.

 

This is how my brain looks and feels like: Microsoft Vista, full of holes, misconnections, and unplug wires. Of course, I get better and better due to neuroplasticity and non-stop of rehab.

 

Who do you explain and deal with people who don’t understand our challenges?

What do you think?

 

Marcus

 

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