Blogs: Voices in Online Communities

In terms of “Internet Time,” Blogs are among the senior citizens of the Web. The term “weblog” – later shortened to “blog” – was coined in 1997 as a way to describe some forms of online diaries or journals through which people shared about their lives, interests, and so on. Since 2002, over 133,000,000 blogs have been indexed by the web service Technorati.

Blogs come in many, many styles, and cover, well, just about every topic we could think of. Blogs come in different sizes too, one of the latest big trends being “micro-blogging” – posting short updates through sites such as Facebook and Twitter. And if I’m not near a computer, I can even use my mobile phone to find out what I’m doing.

Facebook Status update

Checking in from the real world

A Twitter Tweet

Individuals and groups have used oral communication, print, audio, video, and now online “virtual” tools to communicate with one another. But the old tools don’t disappear. They’re ready to give us different ways to reach and interact with other people.

When I found out last summer that my friend Vicki Wells Bedard had been diagnosed with something called Frontotemporal Dementia, or FTD, I drove the few hours to her home for a visit. We talked of many things, including, obviously, including FTD. Vicki mentioned two books she read soon after her diagnosis that helped her better understand what this disease is and how it’s likely to affect her. (These books are “Still Alice” and “Dancing with Dementia”.) When I got home, I ordered the books and read them right away. These and other books I’ve read since then have helped me understand to an extent what Vicki and other people with dementia are going through. (There’s a list of these and other related books under Resources at the Vicki’s Voice blog (vickisvoice.tv).

One of the other things Vicki said that stuck with me was that she wanted to communicate with other people who had FTD to find out what they were experiencing, but she hadn’t found anyone. Vicki talked to people at the organizations dealing with FTD and was told most people with this and other dementias aren’t diagnosed until the disease has advanced significantly enough that they can no longer communicate effectively with others. Knowing there had to be other persons with FTD that could still communicate, I joined Vicki in the search. During the Fall and early Winter we each found out about a few blogs and Facebook pages by persons with FTD and other dementias and excitedly shared each discovery with one another.

Who we’ve found are people telling their personal stories about the struggles and occasional triumphs of living lives radically changed forever by the terminal diseases of dementia. And even though everyone was geographically separated, we became friends and members of a small community of people sharing their very important stories – and themselves – through blogs and other means of online expression. For most of our lives, this kind of communication and community support was impossible.

Bruce Bane

As I mentioned earlier, blogs come in all styles, reflecting the “voice” of the person behind the words and pictures present in many blogs. So far, we have about a dozen blogs by persons with dementia listed in the right-hand column of Vicki’s Voice, and they each have a different style, a different voice. Let me share a couple of examples. One of the first persons with dementia we “met” online is Bruce Bane. Like Vicki, Bruce had been posting his writings on Facebook and has since started an outside blog, “Living with Dementia: reflections on how dementia affects my life and relationships.” In most of his early posts, Bruce shared his thoughts and reflections in a poetic form, sharing his story very poignantly and powerfully. Here’s a recent post, “Who Am I Becoming”:

If life is the process of becoming who we are meant to be
And then being who we are (no more, no less),
What does that mean for me?
Gradually it feels like I’m becoming less of who I am
This thing called dementia is draining me of myself
So I wonder, “Who am I becoming?”
When all is said and done will there be nothing left of me?
Or will there still be a spark that others can point to and say,
“Yes, that’s Bruce. I’d know him anywhere.”
In response I might nod, or wink, or smile and point a finger at you, as if to say,
“I know you.”
And in that moment we will both know this:
It is the life we share that has the final say, not dementia.

Another person we’ve met online writes under the name SoulfulSilkee in a blog titled “I am dying.” The posts include accounts of her health, information about people and organizations working on FTD, and resources she finds helpful. Here’s an example from a couple of months ago:

Hi Everyone,

I have had a lot going on and I wasn’t able to post last month but I am back and hope to write three posts this week.  Most of you don’t know I like to visit second life now and again, lately it has been again and again lol.  Right now, I am in a virtual world at a writer’s camp out site. Nothing like writing in the woods.  Today they are having an all day writer’s marathon.  I don’t think I will be able to stay for eight hours but I hope to use the time to get out these posts.  Anyone who is on Second Life, my avatar’s name is Eppie Shoreman.  Any of you who are on SL or plan to be on SL, there is a support group for chronic pain at “The Centering Place” on Second Life.  Contact me for details.

The last blog I’ll mention now is “Vicki’s Voice.” Not only is Vicki a very good friend, she’s one of the best writers I’ve ever come across. The pictures she paints with words take me to different places and times, and almost always include smiles, chuckles – and sometimes outright laughter. She also brings us into her life coping with the changes brought about by her dementia. But don’t take my word for it. Why not do these two things right now:

1. Use the ShareThis button below to share what you’ve just read. I need the exposure 🙂
2. Then use the “Home” button at the top of this page to read Vicki’s posts. I think you’ll be glad you did.

Later, visit some of the Other Personal Stories links on the right side of the page to read and hear more Voices from our Online FTD Community. And as always, we’d love to read your comments anywhere on our website.

Jim Coyle