Jul 28

News from our friend, Bruce Bane

Bruce Bane is kind enough to let me share his thoughts from his own blog, Living With Dementia. We have a small group of us with FTD that apparently don’t know we aren’t supposed to write or speak, or be creative. Here’s some beautiful samples of seeing the world through Bruce’s eyes. Enjoy.

Fair Photography Results

Posted July 27, 2010

Filed under: Reflections |

I went to the fair today and found out that of the 15 pictures I entered 4 won 1st place and 11 won 2nd place. I’m very happy about this. It feels good to be able to do something that is on par with people who don’t have dementia. The first places photos are below and you can see both them and the second place photos on my photo album page.

postman-butterfly1 fair-2010-cello

These are just two samples of his amazing work.

Now here’s his blog about how he came to be there:

I’m doing something this Saturday that I’ve wanted to do for several years – I’m entering some of my photographs in the county fair. It took the encouragement and help of the nurses who work with me, but in the end it’s my project and I feel good about it. Like I said, I’ve wanted to do this for years, but kept putting it off thinking there would always be time. But dementia has made me realize that isn’t true.

I’ve always enjoyed photography. And I’m lucky I can still take pictures because there are other things I can’t do anymore, things I should have enjoyed more when I was able, things I would do if I could. These are things that are lost to me because of dementia. They make up a kind of “could ‘a, would ‘a, should ‘a” list; things I could ‘a, would ‘a, should ‘a done if I’d have known what life had in store for me. Instead, I took my life for granted. And now I know I need to let go of the things on that list, but it’s hard to do. So it’s good to have things like photography, painting and writing that I can hang on to. Being able to do these things help to take away some of the sadness of the “could ‘a, would ‘a, should ‘a” list.

So wish me luck. I can’t deny that I would like to win some award. But even if I don’t, it’s been a fun project and I’ve gotten a lot of affirmation from the people who have helped me. I will post my entries on the photo album page of this blog and on my Facebook page. And if I do win anything, I’ll let you know.

Congratulations, Bruce!! You inspire us, your words are our own, except we can’t find them as beautifully as you can. Love & blessings, Vicki

{{{{{Bruce}}}}}

Permanent link to this article: https://vickisvoice.tv/2010/07/news-from-our-friend-bruce-bane/

Jul 27

Gary Larson, Bill Keane?? I could use you again …

Someone asked what it felt like to have an obnoxious disease and no one seeming to do anything about it

I took the question to my FTD forum – especially Susan, John, Elizabeth, Jan and Linda took it and we all batted the idea around and came up with this.

An army of guinea pigs, with a lance, little helmets, a couple needles hanging off our butt, an IV or 2 on some, riding hippos at great speed, watching the oncoming lemmings run toward the cliff, because someone yells “No cure! No treatment! Terminal!! No studies!! Hopeless!!!”

Guinea Pigs, you’re time is here. Rise up!! (adjusting my own mask, fluffing out my cute Guinea Pig bottom.) Unite!! Susan, set the signal!!

gforce armed with sword

It’s not over, we’ve just begun!!!

Permanent link to this article: https://vickisvoice.tv/2010/07/gary-larson-bill-keane-i-could-use-you-again/

Jul 26

Ramblings

I think you believe I hold some amazing gift that tells & leads me thru each day. I don’t. I have days wrapped like a coccoon. And days I can’t shut up.

But, following my 1 year anniversary of diagnosis, leaving with the advice of “get hold of hospice and find a home” … well (sticking out tongue) I am still here.

Getting new photos of the brain this week, and tests to see how amazing I am at riddles. Which means…

I would love your prayers. And that’s it.

Love, Vicki (kicking Papa)

Permanent link to this article: https://vickisvoice.tv/2010/07/ramblings/

Jul 26

So you’ve had a bad day…

Bad days come in all sizes and shapes, and sometimes you’ve done something so amazingly bad that even though you are the only one in the world who knows what you just did, your face turns scarlet! Yes, you can embarrass you. It’s a fact of life.

One would think – being safely withdrawn from the business world – I’d be pretty safe. And I usually am. Hardly use email; of course Facebook scares the dickens out of my kids. So that’s why I created a Flair! button that says “I embarrass my offspring” with the FB logo. 26,000 people are using that one.

But mostly I’m harmless. But a couple weeks ago, always with best intentions, with a project near and dear to my heart, I opened an email in a different manner, and unbeknowing I sent my comments – about Mel Gibson maybe having FTD of all things – to a list of national leaders. Yup. That was me, and I wanted to pull the covers over my head and just go away.

Who hasn’t said or posted something that we wish we could have taken back? Words at the water cooler, trying to be cool. Or even just listened to something you wished you had just walked away from.

Sometimes, like a day ‘power broking’ – and yes, I have no idea what that means – I screwed up on something (well heck that was expected, at least 4x a day) and just as I was going to berate myself, up popped a new email proposal. I looked at the recipients, looked at the subject, confused I began to read. And it was the outline of our competition listing how they could take over the company I was working with. OMG! To heck with the message, and omg for the sender. And I prayed for them. And I never brought attention to it. It was just a bad day.

If the Apostle’s Creed would allow addendums, where it reads “one, holy, catholic & apostolic” I’d like to add “and by the way everyone messes up.” But you cannot. I’d also add “in conflict” just because it rounds things out, don’t you think?

But on really bad, no-good days, I remember a trip with Sr. Virginia & Fr. Jim as we headed towards Conway (MI) and I was relating – yet again – aother PR faux pas and Jim slowed down on 32 as we entered Petoskey. “Vicki,” he said. “Ever stay at that Holiday Inn?” Well of course we all had; it was the first big commercial hotel, boasting “49.99 a night with a million dollar view!!!”

“See anything odd about it?”

Well yes, all the fancy schmanzy rooms with a balcony faced the parking lot, and on the Bay side it was plain windows, no sliders and uglier furniture (those were the rooms I could afford at the $49.99 a nite.)

So he told me this true story. Holiday Inn had paid more for that location than other exotic locations from around the world. They argued with the Chamber of Commerce. They argued and placated the neighbors. They promised an elegant setting proper for the history of Petoskey, Michigan, and its historic Bayshore area.

Obviously, they won all the arguments. And the ground was broken for this amazing, historical moment of letting Big Commerce into a quiet Northern Michigan conclave.

She's there in all her backwards glory to this day. Yup the cheap seats get the million dollar view. So, how bad was your day, really??? (smiling) Thanks to Fr. Jim Suchowski for the lesson in life. Unfortunately, it keeps serving me well, year after year, day after day. Blessings to you and dear Virginia. Unfortunately for you, I am a product of yours and Bishop Rose's imagination. +++

On the day of the dedication, with all the headquarters honchos there to cut the ribbon, someone asked a question, not too dissimilar to another one by Aesop, 1000s of years ago, about the King and his wardrobe. Jim said the president heard the comment that was already in his head, and asked “Why are all the deluxe rooms with balconcies facing the parking lot and not the view??”

The architect, completely flustered, looked at what he created, looked beyond it to Little Traverse Bay, began blushing, and turned the architechural drawing totally around. He looked at the prints – spot on. The building was amazing in its day. One thing was missing.

Because he never looked up to the Bay, only at his plans that were perfect, he never noticed – not once – that they were upside down.

So, you think you’ve had a bad day? Come to Petoskey and smile …

Love, Vicki

———-

Here’s the perfect song for you:



Permanent link to this article: https://vickisvoice.tv/2010/07/so-youve-had-a-bad-day/

Jul 25

Always look on the bright side of life …

Having started on that happy note, let me say “death sucks” and “fear of death is suckiest” or would that be the more suckier? (feet tapping on floor, impatient…, chewing on virtual pencil, scribbling on a virtual reporter’s pad). Yup. (flipping thru prayer book and watching “Life of Brian”…, tapping). Not my death, mind you. All of it. But as I recall, birthing wasn’t a trip to Jamaica either. So, you are probably wondering where am I rambling off to … (clicking eraser on teeth …)

and when someone's nose makes the sound of a trumpet, a dainty lady curses, a kid picks their nose, anyone who bends over to pick up something and passes gas (me excluded) and all the little humanities that make us so loveable.

No one doubts that I am a devout Christian, even Catholic. Have a medallion on my wall that says it’s true. But anyone who knows me knows I am incorrigible, have an ‘odd’ sense of humour, and – at times – irreverent of, hmmmm, politics, religion, human kind and human unkind. Well, if you know me, then I really don’t have to spell it out. I mean anyone who laughs at the ole “pull my finger” joke, or creates Flair! buttons that say “I still laugh when the ketchup farts!!” doesn’t need much introduction, eh?

So why should my opinion about something so personal, that is either a time to embrace religion and your god, or live it up fast, cuz maybe there isn’t anything else after this mediocre life you’ve lived, matter?

WHAT?! I make one statement, saying “mediocre”, link it to your life, and now you feel upset??!! Isn’t that what we so often say to one another? You mean, yes, you didn’t get that skooter for Christmas, or Calvin Kleins; or you gave away your youth for a husband and children, not to mention your figure, and yes – your husband left you and who would want a washed-out, used up old 30, 40, 50, 60 yr old woman? Or worse. You are stuck with a middle-aged, balding pot-belly hubby and you knew you should have run away with the hair dresser who was so sensitive.

And you men, there you are with this everyday job, never got to learn to fly, lost your struggle to maintain that 6 pack that you had at 21, to one of Bud Lite. Your best years never really happened. Maybe served a time in the service, or married your 2nd choice, or just glad you found anyone at all. Worked day and night, so that you could have time later. The American Dream.

Or maybe your faith has always kept you strong, like a compass, and all turns in the road eventually lined up. And now there’s no beacon, no path, no light at the end of the tunnel. Hell, there’s no tunnel!

Dying sucks because if we are reminded of that EVERYONE is dying, we’d jump out of our skins! In your teens and young adult life, you just laugh out loud at that thought, as you hop on the back of the motorcycle leaving your helmet somewhere else. From then on you just ignore it. Today’s 50 is yesterday’s 30, isn’t it?

Dying sucks because we have to not only justify a mediocre life to ourselves, but actually turn around and come to love it. Love it all. Love it to death.

Dying sucks because so many of us have so many things we wanted or meant to do, were do-able, but life kept us busy. I’m faced with never getting my recipes in order, and bind into a book for my kids. Or make that baby sweater set for each great-grandchild that hasn’t been born yet. Or gather all the loose scraps of envelopes and put them into Outlook as actual addresses. To create the Mother of all Christmas letters to everyone I know, on time, making up for all the years they became Valentine, then Easter greetings, then … nothing.

Dying sucks because I have to wear clean underwear all the time, occasionally bathe & change clothes, keep the house ‘on call’ so that everything I own can either be put in a garbage bag or stuffed in the oven, dishwasher, washer or dryer. Having said that, don’t you DARE look in those places at the post-funeral luncheon.

You know, I do know what is the suckiest? Living, preoccupied with the suckiness of dying. I betcha dying – the real thing – will be a relief, actually. Finally, the messy house, bed head, piles of laundry, unopened bills, the many to-do lists scattered about, the Sunday box of envelopes … they just won’t matter a bit. Maybe my last words to my family will be “Pull my finger.”

You there Papa? It’s me, Vicki

——————————-

I dedicate this song to all those I pray for, to be taken in the manner intended: love, hope, beating the odds, checking off everything on that Bucket List and remembering to laugh. Out loud.



Permanent link to this article: https://vickisvoice.tv/2010/07/always-look-on-the-bright-side-of-life/