Vicki's Voice

Archive for July, 2010

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.

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}}}}}

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!!

It’s not over, we’ve just begun!!!

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)

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.

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:

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 …)

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.

Many of us with FTD suffer from strange dreams that are part good, part frightening as we are 1/2 awake and yet, somehow, still asleep. My first post on Facebook was about ‘Trazadone Dreams’ and I recconed it to the ‘Amazing Bubble Plastic’ ballons that we could create as kids. Stinky, maybe lethal, but we were kids and like glass blowers, made these oddities they advertised as balloons, but looked like kidneys, lungs, liver not quite without our twist to make the umbilical cord cease to exist. They kinda sorta floated, but mostly stuck to upolstered furniture or carpeting, where we all stood staring not sure what to do with them. Some stayed for days. Some would deflate into a goober gluey substance that sent our mothers over the edge with glares at the innocent father who succumbed to our darling-ness at the store. Either way, the Amazing, Elastic Bubble Plastic stuck with us, one way or another, for a long time.

So, imagine as you go to sleep you are puffed into that elastic balloon just before sleep, or just before rising. You can’t tell real from dream, nor punch your way out of it. It can magnify your worst real life nightmares, shame laden. Or, it can make you think you are still on the time clock but late and will lose your job. Or, it can be with long since passed siblings, grandparents and parents – where you hope the bubble plastic never breaks. You are at peace, and laughing, and healthy and whole. Somehow, even as a child, you watch your children and grandchildren play, and romp, and roll about the grass. And your Mimi and Pompa, hug you tenderly from behind. And you just want to never come out of that dream. Ever. You are in a canoe, or fly fishing from the bank, or eating Kewpie’s cheeseburgers (plain) with your Dad in Mt. Pleasant, sharing a chocolate malted. And you stand, all 2.5 feet of you, between them in the Merc, and life is bliss…

More and more I am called into that sleep, even with the dangers that could be there. Like sirens beckoning to the seamen, I risk the rocks to find a place of peace. A sense of home.

Papa? Is this a glimpse of what lies ahead, or just me wishing? Avoiding the reality that is awaiting me.

I’m here, Papa Are you listening?

Love, Vicki

The sun rises where I can see her now, on the second floor of my simple bungalow. It’s been almost 2 years since I have seen her from this vantage. I roll and stretch as she taps on my 2nd floor window. At first I panic, thinking ‘omg I am late for work’ and then I glance at the clock radio, somewhat confused, but then reality sets in and says: “Vicki, you are released from that timetable.” And just because no alarm is set, commanding me to work, I still hit the ON button to listen to the news on NPR. I don’t have to fret and worry that no clothes were set out the night before, so I could dash into them after a shower, allowing for time at McDonald’s for a #1, with a large iced tea, extra ice. It’s been so long since I had done that, but it still is ingrained in my daily life ritual.

Sans Mickey D, the day begins gently. “Vicki, would you like to sleep until 8am or whenever your dreams stop?” Most days, with nothing but a virtual ‘snooze’ button, I just stay there. Pausing. Really feeling the wonder of the first dawn, the sounds, the breeze coming thru my window. Sometimes when my body lets me sleep, I slumber to the early morning birds doing roll call. I have a nest of Cardinals on my porch, and wrens who gave up on me ever providing them with the appropriate wreath, who now nest in my hanging baskets, safe in the knowledge there will be not many downpours from my watering can these days.

Lying back, in my ‘big girl’ bed, I lazily watch the lace curtains rise, then fall, then rise again, fluttering, strutting in the early morining breeze. It is like I am watching God breathe, undistracted, intent on breathing life into my body & soul. Like Papa has all the time in the world, to coax me, beckon me to a new day, new life. But I know, if the night has been haunted by those ‘amazing bubble plastic dreams’ of this disease, his soft gentleness will soothe my brow, fluff my hair and coax me back into sleep. And I accept it, gratefully.

Life isn’t always what we expected. Nor is God/Papa. Somehow we work things out, like a waltz, swaying in that morning wake up breeze. It is confusing who leads, but it is better when I just surrender to the music of the birds, close my eyes, his hand resting against my back, and just twirl. Feeling the beat of the earth, rich, motherly, nesting…

Papa? I’m here, always. Waiting for the last dance…