Since I’ve joined the wider global community through online networking and blogging, and since speaking at the Alzheimer’s Australia National Fight Dementia campaign rally and appearing on the ABC TV 7.30 Report, I am gathering many new friends, people who have seen my story and want to share this journey on my dementia train. I am not so much flattered as humbled by the love and support offered to me by complete strangers, in fact often support that is far more tangible than I have received from some family and personal friends. My challenge with this being an anonymous face out there is that having dementia means I already feel confused about who you are, especially, for example when asked to be someone’s Friend on Facebook. I guess I had assumed only actual friends would be the ones to request friendship, so have often felt a bit freaked out that I can’t remember who you are! Yes, I know, to assume means to make an ass out of u & me, but it is very disconcerting not to remember you when I think I should.
This Christmas I did not send many cards, but was lucky enough to still receive many from family and friends. It became a challenge as I could not work out who they were from without a lot of extra aids, so if you are a new friend, I’d really appreciate a private message via the blog contact form or via the Facebook email of who you are, how I know you (if I do) and how you found out about me, just so that my memory loss doesn’t stand out quite so much, so it doesn’t slap me around as often! One final comment for today is a question to those who don’t give their real identities on blogs or Facebook or other social networking sites… why not be proud of who you are and what you have to say?
I am a former teacher with a master degree in ed tech and I worry about the safety issues of sharing one’s true identity especially for younger people who may be more trusting. The rule of thumb in my classroom was to never use your real name or reveal where you live. Unfortunately, I have had friends who have had very real and dangerous experiences with people who they met via the Internet. Nonetheless, I feel the benefits of communicating and learning from each other far outweigh the dangers one might be exposed to (and the danger of not communicating).
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Thanks for the titbit of news about yourself, it really helps me feel more connected in a world where I am constantly feeling more disconnected. Also, I can definitely see your point regarding full names and where you live not being posted publicly online. My private email was accidentally uploaded to a website about ways to manage dementia, and unfortunately I continually have had to manage SPAM ever since, even though my email was only ‘up’ for about a week! Having dementia though, means it is difficult not knowing ‘if’ I know you or not, and heightens my own sense of ‘nobodiness’ brought on by this disease. The other side of the coin to your comments are I wonder, what if we never know the real ‘anybody’, and therefore ‘everyone’ is also a possible security and safety threat?
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Well, that’s why I’m a worrywart. 🙂 Nonetheless, I agree we should make an effort to know the people we come across regardless of their capacity in our lives, (hence, I am more trusting than most worrywarts).
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Hello Kate I’m a good friend of Valerie who told me about your blog!!
Good on you!
You are such an inspiration to me thank you for your courage!
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Welcome aboard my train… anyone who is a friend of Valerie’s is also one of mine! Thanks also for your generous words. toot toot…
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