Vicki’s the Cover Girl on Faith Magazine
As you can see above and on the right-hand column, Vicki is the “Cover Girl” on Faith Magazine’s November, 2010, issue. The cover story inside the magazine is a great story about Vicki, informative and entertaining. At the end of this post I have a link to the article’s online version, and to an online video that Faith Magazine recorded the day they took photos for the article. In the video, Vicki candidly talks about the ways FTD has affected her and how she lives her life with the disease. Vicki has dedicated her life to the Church and to communications, as this article and video clearly show.
Vicki and I are so appreciative of Faith Magazine for helping her tell her story – which is not only Vicki’s story, but also the story of many people suffering from this “hidden” disease.
Read the article and watch the video! I’m sure you’ll be glad you did.
Jim Coyle
Faith Magazine cover story about Vicki
Bottom of the Ninth
I’m a fidgety guy. When I have to sit down, my feet start tapping and I look forward to when I can stand up and move around. Even when I’m absorbed by a great play or a film in a theater, I keep changing the positions of my arms and legs. When I give presentations or teach a class, I move around as much as I can (which fortunately is helpful for audience attention). I always need to be doing something. I rarely let myself unwind and relax – really relax.
It’s baseball’s World Series time here in the United States, so the sport is getting more press coverage than usual. Which got me thinking about baseball games I’ve attended – not very many – and how hard it’s been for me to be at the ballpark for seemingly endless games – no time limits, most of the time a relaxed pace compared to most other popular sports. Hard for a fidgety guy like me. A lot like Life, actually.
Even though I don’t know the intricacies of baseball, I know that something interesting, even game-changing, can happen with almost every pitch (and sometimes between pitches). In his Sunday column this week, Pittsburgh Post-Gazette executive editor David M. Shribman included a quote by sportswriter Paul Gallico that describes not only baseball, but Life itself:
The game is as full of surprises as a mystery play. The plot and its ending may be perfectly apparent up to the ninth inning and the last man at bat, and then with a stunning suddenness change entirely and go on to a new ending.
Today is the 50th anniversary of Game 7, the final game of the 1960 World Series, between the New York Yankees and the Pittsburgh Pirates. Shribman’s newspaper column recalled that season and the World Series as an exciting one for people in our area (Pittsburgh, PA, is the closest big city to me). And 50 years ago today, the Pirates’ Bill Mazeroski came to bat in the bottom of the ninth, with the Yankees ahead. Shribman writes:
We remember the late afternoon, late-inning drama. We remember the pitch, we remember the pop of the ball against the bat. We remember the way Yogi Berra watched the ball soar in an Oakland arc over the Forbes Field wall, the way Bill Mazeroski…held his hat on high – a moment of pure surprise, pure joy, pure exuberance captured unforgettably in a Post-Gazette picture…”
Photo by James Kligensmith, Pittsburgh Post-Gazette
As you’ve read here on Vicki’s Voice, for Vicki and other people it appears that their lives are in the “ninth inning” and the “ending may be perfectly apparent” as Gallico wrote about baseball. But how life is lived to the end is not pre-determined. Every day, every moment – like every pitch in baseball – has potential to bring “a moment of pure surprise, pure joy, pure exuberance.” Such moments are treasures to be experienced.
On October 13, 1960, the Pittsburgh Pirates came from behind in the last inning of the final game of the World Series to win the championship over the mighty (then as now) New York Yankees. Shribman ended his column with:
Maz’s home run struck a blow we recall in legend and lore, but it did something more, something far more enduring. It proved a point for his time and ours. It’s never too late.
It’s Jim, Papa. I’m still here.
P.S. Today is my brother Tom’s birthday, and I wish him brotherly Blessings.
Link: David Shribman’s October 10 Pittsburgh Post-Gazette column.
Adding another blog to a WordPress site
Back in February I added a “Jim’s Blog” page to Vicki’s Voice initially to answer some questions people had about setting up a blog. I didn’t want to interrupt the flow of Vicki’s story and writing with general computer talk, so I added the separate page. If you read Jim’s Blog, you’ll see that my new posts have been relatively infrequent, but have included thoughts and links not related to computers but connected to dementia-related material I’ve come across.
Sure I can remember how I set this up in February. Just give me a minute...How about a few more minutes?
“Jim’s Blog” is not exactly a separate blog, but rather a “Page” which shows any post I add to Vicki’s Voice for which I select the “Jim’s Blog” Category when I write the post. Right now, Vicki and I choose from about 5 different Categories we’ve set up.
Setting up the Jim’s Blog Page was relatively straightforward. After logging in to the blog on WordPress, on the Dashboard I selected Pages > Add New. After giving the page a Title, looked at “Page Attributes” on the right hand column and kept (no parent) as the Parent option. I Published the new page and it appeared on the top navigation bar of Vicki’s Voice.
OK. This is as far as I can go now. What I haven’t been able to find is how I set this up the Jim’s Blog Category to post on the “Jim’s Blog” page instead of the main blog. I’ll keep looking and add to this post when I find out, or when someone posts a solution in the Comments to this post. And of course there are likely to be more elegant solutions people are using. We’ll see what response we get.
Jim
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
Vanishing Words
First, let me introduce you to a radio program called Radiolab, produced by WNYC Public Radio in New York City. For well over 50 years, I’ve been fascinated by radio production and the variety of ways to bring stories to life through sound. Radiolab is my favorite radio program, and I usually listen to it at their website or as a podcast I download. I’ll put a link at the end of this post.
Today Radiolab released their latest podcast, shorter than the full-length program. It’s titled “Vanishing Words” and is a fascinating look at words from two different angles: Agatha Christie’s novels, and observations from a study of almost 700 elderly nuns. In both examples, words serve as a window into aging brains…a window that may someday help pinpoint very early warning signs for Alzheimer’s disease and dementia.
You can listen to the podcast by pressing the play Arrow below, then later go to the Radiolab website for more information if you’d like. Wherever you listen, I think you’ll find it’s worth it.
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We’d love to read about your reactions and hope you’ll leave a Comment here. And you can click on the link to visit the Radiolab website at WNYC Public Radio.
Jim Coyle
Photo by: Laineys Repertoire/flickrCC
Interview with Richard Taylor
Richard Taylor is one of the best-known authors and speakers about dementia from a personal perspective. Richard was diagnosed with dementia, probably of the Alzheimer’s type, when he was 58 years old. What he has written and speaks about relates to persons with all types of dementia, not just Alzheimer’s Disease. Through his book Alzheimer’s from the Inside Out
This video highlights Richard sharing a few very important aspects of life with dementia:
Last August, Richard Taylor was interviewed for a Leaders in Eldercare audio podcast by Ryan Malone. I’ve found this interview to be very helpful for people dealing with family members or friends with dementia and for people wanting to understand the effects of these diseases. Be sure to check out the podcast website. Meanwhile, I encourage you to listen to the conversation by pressing the arrow on the player below:
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Jim Coyle
Traveling with the Eyes of God
Henri Nouwen is one of my favorite writers, spiritual or otherwise, a person whose writing, prayers and meditations usually seem as if they’re written just for me. I’ve heard other people say the same thing – it’s as if he speaks right to them. What an incredible God-given gift he has. While Henri is no longer with us, his words and spirit live on. On a recent day, one of Nouwen’s short meditations led me to think about my friends, old and new, who are at different stages of life’s journey.
This photo of my Mom was taken the year before she passed away.
I also remembered something I’ve experienced many times over the past 18 years. The first time was right after my first trip overseas, a wonderful pilgrimage to the Holy Land in 1992. When I got back, I shared about it with my family and friends at home, but felt an emptiness inside when I realized I couldn’t call my Mom and tell her about the trip. Mom had died the year before, and this trip was the first major event in my life since she passed away that I wanted to tell her about but couldn’t. I discovered a new empty space in my heart. In a way, I believe that Mom was with me on that trip and has been watching me since then. Even so, it would have been great to tell her about the trip and hear her voice responding. She was always interested in what her children and grandchildren were doing, and I’m glad she and I became closer during the last few years of her life.
This reflection by Henri Nouwen brought that to mind, and gave me a wonderful perspective on our life journeys:
Travelling – seeing new sights, hearing new music, and meeting new people – is exciting and exhilarating. But when we have no home to return to where someone will ask us, “How was your trip?” we might be less eager to go. Travelling is joyful when we travel with the eyes and ears of those who love us, who want to see our slides and hear our stories.
This is what life is about. It is being sent on a trip by a loving God, who is waiting at home for our return and is eager to watch the slides we took and hear about the friends we made. When we travel with the eyes and ears of the God who sent us, we will see wonderful sights, hear wonderful sounds, meet wonderful people … and be happy to return home.
Let our journeys be all they can be – eyes, ears and hearts wide open!
Godspeed! Jim
One of my sisters and me in China, showing our brother's infamous Ring Trick. Family is such a special gift!
This is so cool! "Seeing the New Dawn" - a sculpture on the Northern Arizona University campus by Jason Lanegan (the sculpture is Jason's, not the campus). The sculpture faces East - where the sun comes up.
Food for the journey - and on the journey - can come from the heart and feed the heart. Fast food, though, usually doesn't satisfy or nourish very well.
See what I found in Ohio!
Vicki's story is one of faith, humor and love in the midst of suffering, and is featured as the Cover Story of the November 2010 issue of Faith Magazine. If you haven't already read it, I hope you'll read the story online and learn more about Vicki as she shows us how to live, no matter what our situation is.
Jim Coyle