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…

 

It’s a partly sunny Tuesday morning. Don’t be astounded that I know the day and date, it’s the prompt and calendar at the bottom of my computer screen. Truth is I thought it was Monday, or maybe Sunday. In whatever is my RAM – that short term, random access memory – is what guides me.

Going thru a day / night switch where, altho I cannot sleep at night, I don’t want to be up alone in the night. So I say my rosary – the new one, from Sam – and I write to-do notes that won’t get done, for whatever reason. I sort out the cards I will never send to the people I love.

Today is Farmer’s Market day and FTD Support Forum chat day. Bet I will be sound asleep when they come. It’s like it should be winter and I should be hibernating. Broke out of my coccoon yesterday, forced my way out, only to find out my mind was needing to be reclusive. I made one phone call, and my face began distorting, eyes rolling up into my head, eyelids pushing in so hard, maybe to keep my roving eyes inside my head? Speech was distracted by my contorting lips, curling, rolling under, stretching like the Joker, then clamping shut.

I need to let my body define how my hour-glass is set or turned over, half done, to start over again.

My friend on the phone prayed with me during that session. What did he hear? Probably groans as lips curled into my nostrils, or upper and lower jaw fought one another, like arm wrestlers. I don’t know how long it was, but when the meds kicked in, I was melted and exhausted. This time I listened – and basically slept the next 24 hours.

Today, much the same, just exhausted, mind empty of anything except wanting to rest. I will succumb. The mail won’t go out. The meds will be taken. With food. I will stay hydrated.

Wouldn’t it be a hoot that it is only having an ailing TV that could bring all this on? And it could just be that simple. A routine changed, the new big girl bed upstairs, the view from 2 stories up at sleep or upon waking? Who’s to know?

Papa, wake up! It’s me, Vicki

I’d just like to be able to bake 2 pies while the berries and rhubarb are ripe. I forgive you for erasing strawberries and asparagus from my mind, but enough is enough. Jesse, you listening? I need to feel the dough perform at my touch, the glint of the paring knife as it trims and cuts the fruits; the smell of the cinnamon & nutmeg, the fresh lemon’s colour as I squeeze the juice; the art of rolling out and crimping the crusts. The perfume that fills first the oven and then spills out througout the house. The ritual that says “this is life, which I share with you, and you will share with others….”

Love & prayers for my many families, and a special one for Jack Armstrong, my all-American guy, in Sparrow Hospital, who needs a break to go home and raise his grand daughters, whose mother (daughter) and wife have already gone home to God. And for Vivi Inglesias, as she undergoes surgery. Angels will be with you, Vivi.

Love, Vicki

 

Papa, it’s me, Vicki.It is not a good day. I just keep sleeping, and sleeping. Didn’t even hear the garbage trucks (which I delight to hear thru my open window). Dystonia is messing with my face, and FTD is making me stutter, and drag like a fishline on a submerged tree limb. You can’t see what is snagging it, not the trout you were angling for, and you can’t proceed until you either wade over to try to save your magic ‘fly’ or you accept it’s over, and cut the line, add new leader, new fly. And you pray it will become your new ‘old lucky fly’.

No, Papa, what bothers me is really very little. I don’t want to be on the computer, the tv was smote (you’d think the past tense would be smitten, but boy those 2 don’t go together!).

I have a feeling the disease is progressing, removing Annie Oakley from my spirit, Buttermilk tethered, eatin’ oats. My world gets smaller daily.

Just to write to you today took 2 hrs of looking at my turned off computer and the dead TV to muster up a prayer.

So, I ask as I do each day for mercy. I pray for all those afflicted with this disease, for my family, and good friends who, even when we aren’t in contact, I can feel their thoughts and prayers.

“This, too, shall pass.” I know that, what I don’t know is what we are passing into.

Papa, are you listening? It’s me, Vicki, and what is left of her.

Coming out of my addle-brain coccoon. My cycle of life. Today, unlike few days ago, I shouted orders to the old frontal temporal lobes, “We have company coming!!! Wake up. Get me moving. Eat. Shower. Unload dishwasher. It’s me, Vicki, and I am still the Boss!!!” Well, yeah. About as much as a mom is the boss over stubborn 2 year old. ;o)

Of course, the cooperation is exhausting. An hour and a half to shower and wash my hair. Exhausted. Eating. Wiped out. Put garbage on porch for neighbor to take out. Back cries out for medicinal bustier. Stuffed things in bags threw in my room, just in time to sign in for our twice weekly FTDSufferers forum. My respite. My friends. I cannot express how amazing it is to talk to other warriors, defying odds.

My Gary Larson cartoon: If I had Gary Larson in my pocket, I’d like him to picture what appears to be rising up from our conversations about how it feels to not be heard, for professionals and nature want to take our voices, how we are the test mice, we run the maze of appointments, referrals, multiple simultaneous diagnosis. We even, in our dying by degrees, have created a documentary about FTD (Susan Grant) that I keep promoting here. And we are met with indifference, or worse the medical world of politics and agendas.

So, Mr. Larson & Family Circus Bill Keane, we need another of those ‘map’ cartoons showing a day or week in the life of an FTDSufferer. Zigs, zags, obstacles, cliffs, valleys, and dead ends.

And the mascot to represent this is a Guinea Pig in armor with a lance, riding a hippo into battle. I know, a threatening image that strikes terror in my heart even as I type this. LOL. We stand head and shoulders over the lemmings and lab mice.

Sceintists in a lab look at the mice and the guinea pigs, in armor, on hippos and say, “What are we seeing here? A revolt or a new type of guinea pig?”

How long before we can move from Don Quixote to a victory, however small it is? Remember the old adage? How do you eat an elephant? One bite at a time.

But our hunger is fierce, and time is not on our side. But nothing except death will deter us from preventing this from exploding into the harried, busy, stressed, multi-tasking – and unsuspecting – population. As it will, unless someone sacrifices all that they have, knowing that prophets seldom fare well. But when I am with them in our forum, I know we Guinea Pigs put our little paws together and like the football huddles, we shout “GO! FIGHT! WIN!”

And that’s the spot where our mascot leads into battle.

Are you there, Papa? It’s me, Vicki – the one on the hippo who looks a bit like Annie Oakley.

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FTD Support Forum for Sufferers meets on Tuesdays and Fridays at 2:00 Central time. Register, then meet us there.

Learn about Susan Grant’s amazing documentary on her site, FTD the Other Dementia – Planning for Hope

 

This is the 5th time I’ve gone into the kitchen in the last 10 minutes. I get there and don’t know why. I come back, settle on the couch. Feel compelled to go back into the kitchen. Even as I type I know there is something I wanted to do out there. I want to go back again. But I know, for the moment it’s lost, like I am at the moment. And maybe just writing will settle me down, pull my mind back into the moment.

I’m tired, listless, fractured. Checked 5x this a.m. to see if I took my meds. I had, but it took a few more times of checking to satisfy my mind, my very restless mind stuck in a listless body.

I don’t like days like today. Where getting dressed is procrastinated until there’s a knock at the door, hurriedly putting on what I’d left on the floor the night before. Of knowing I might sleep in these clothes and wear them again tomorrow. Like I did as a kid, hating to get up and dressed for school in the dark, cold of a Michigan winter. PJ’s, Catholic school uniform layered on top of them. I know I wasn’t alone doing that, cuz most frigid days the boys had pj bottoms hanging out below their trousers.

But it’s not winter, I am not 7. In fact, it’s a beautiful summer day with soft breezes blowing, grass dappled with shadow and light. I’ve tried to go outside a number of times, but no cooperation coming from my head nor my body.

I hate how my will cannot take control over my mind and body. That no order I demand is even acknowledged. And, as I close this, I know I will have to go back into the kitchen again, scanning everything, trying to settle my FTD brain down.

Love, Vicki & Scarecrow