She was a stubborn child, up for a fight with whomever got in her way. Her pout was de rigueur. Her foot stamp was background noise to her life. Of course, she had freckles, and strawberry blonde pigtails. You would be able to recognize her in any family photo. The one with arms crossed, and a deep scowl. But in a heartbeat she could be all sweetness and light, wrapping anyone around her finger.

Yep, she was a piece of work. She now has possessed my body, trying to take over my mind. Even as I write she is having a tantrum in my right butt cheek. It’s hoppin, and jiggling – and if I weren’t burdened with a hind end like an anchor – I bet if I was on the floor, I would be motoring around on the kitchen floor in a circle.

I take some meds, and my free will scolds her to stop. And my rear end begins a samba on the right and a waltz on the left. Today the tremor is not the norm, but this punch-punch, muscle spasm, punch. If it wasn’t my butt, I’d be tempted to look in a mirror, kind of fascinated by the crazy activity, which is visible. In a way, it’s rather funny. But mostly it makes me angry and pissed off, this buttocks dancing.

In a little while my shoulder will take a punch, while trying to be calm with the tremors. Then BANG! The dance moves down to my calves and now the right takes on a ballet foot pose, the other one just wants to curl her toes like a fist.

There are less visible, meaner games she plays with my head. I try to get the energy to go out on the porch and sit in the sun. But my feet choose not to move. My FW (Free Will) says ‘get dressed, grab a jacket and lets go outside’. But my imp doesn’t help me get my team of body and nerve parts out of the bed. “OK, that’s it!! I am going outside!!” Wanna bet? Zzzzzzz.

A year ago I should have been suspicious when my son, ever patient, taught me how to get into his taller than my legs could reach front seat. “Mom! C’mon. This is silly. Watch me.” And he’d get in, get out, in and out. “Just hop and slide into the seat.”

My FW said “hop, c’mon. A momentary, safe hop into the air.” Hop, I said. Nothing. Jump then. Nope. I got in by laying my rear against the side of the seat and pushing with my cane for leverage to get one leg in and then the other. I still cannot hop, nor go from tip toe to heal toe. These feet aren’t made for hopping, and that’s what they can do…

I need to shower, day 1. I can get there turn on the water, then put on the same clothes, turn off the water and walk out. This would go on indefinitely except for my regular appts, where -although exhausting – with my teeth gritted, I follow through. Still pondering, on day 8 here.

I know you cannot understand why a grown woman doesn’t keep herself up. Doesn’t go out of the house. Avoids crowds or ‘busy’ activities. I do not understand either.

(My left calf is doing a undulating belly roll.)

What I do know is that every day is like being in an elevator, with her trying to shut the doors and not let me out, and with all my strength of mind, body & soul, I push, push, push to keep the doors open. Because I know if she wins, I have lost. And I cannot let that happen just yet.

However impaired my life is, it’s what I have.

Great now my temple is twitching. Sigh.

Papa, are you there? It’s me, Vicki

To remember all those 'every day' and those canonized. Blessings on All Saints day to you all.

I think readers will be surprised that along with St. Rita (impossible dreams), St. Francis & Mother Teresa (peace), St. Dymphna & St. Jude (mental illness), Kateri Tekakwitha (Native Americans), Blessed Andre (the marginalized), Mary Magdalene and Mary the mother of Jesus (strong women) and St. Thomas (God bless the doubters), and a number of others the saints I refer to are those that have literally been in my life.

People of generosity, good humor, great laughter, empathic, healthy skepticism, and strong faith are my models. The people I have come to know who share my FTD, new friends and saints. The staff who cared for my son, Peter, for nearly 6 years. Erma Bombeck. Dorothy Day (and maybe Doris, too ;o) My dad and mom. My funny, little grandma, Mimi. People I’ve worked with or admired. John F Kennedy. Great priest & religious friends…

It would be a very long list of people you don’t know. Including some I long ago forgot about, but in some way – maybe not even knowing it – they provided me with nourishment, laughter, handed me hankies for the tears or cried with me. Were friendly as I checked out of store.

Given the last year of thoughts and prayers I have met even more through my neighbors and my parish.

And while anyone who knew my family might raise an eyebrow, when I include my children and my grands. Who bring me delight, worry about me, assist me in a myriad of acts. Even when we disagree.

Being ‘in communion’ with all these saints is affirming that good still exists despite the evil – even the diluted version of bad luck – that is everywhere I go. These saints, both living and dead, are my community that have nurtured me, forming me throughout my life.

With Papa’s loving guidance, I will join them in the very best place. And – Papa, please cover your ears – we will PAAAARTAY for all of eternity!!! What a Kingdom to begin creating right now, eh?

May all the saints in your lives be celebrated, and remember that we all got the same invitation. And may they be my voice to God as I work, sleep and pray.

Mom & Dad, are you listening? It’s me. Vicki

Another of my favorites who I have tried to emulate since a child: St. Therese of Lisieux (sp?) Sorry, Little Flower, no spell check. I have to believe this spiritually strong young woman, must have been overwhelmed with all the holy people who were in her life. And I'm glad of that, for she set the example of turning over each night and day to God, making everyday a prayer, every irritation an occasion to boost up her prayers a notch.

My giggling saints.

Handsome men, elegant lady and all mine!

Because I'm King, that's why! - Maybe that will be on his epitaph... LOL

Proof that we are more than just ordinary people. I like to think the shadows are God's way of reminding us how big our souls are, don't you?

Saint? or Angel? or just our Chloe ... ♥

What an amazing life to have lived with Mom & Dad, the local I Love Lucy story.

I’m struggling thru the disappointment of:

– spending money for a terrific cause, the International Association for Frontotemporal Dementia, and then being too ill when there to attend.

– of not having the opportunity of meeting my friends from the FTDSupportForum.com, when they were mere yards from me

– and knowing in my heart I am diminishing.

But even with my realities, I keep storing empty cans & bottles for next year’s Farmers Market, to fill with flowers from my garden. Even tho’ my garden was accidentally killed in a weed treatment.

I know I withdraw into my coccoon to heal, and lick my wounds, with the hope of feeling better when I wake up. And, surprisingly, some days I do.

Somedays I wake up at the usual time I would if I were still working. The notepad by my bed is filled with ideas for FAITH magazine, or an article, or a thought to create something.

Somedays not only do I wake up, feeling like ‘myself’ but have found myself picking out my clothes for the day, dashing to the shower, and in the middle of putting on my makeup, suddenly realize there is no work, the clothes I picked to wear for the day I could not fit into even if I tried, and the pointy-toed high heels would kill me and possibly injure a passer-by.

Somedays I cannot not find the energy to get up at all. Preferring being stuck in crazy dreams than facing that day’s truth. I am slowly losing who I was, and am painfully acknowledging who I have become.

But today, I got up at 9:30a, wandered around in my flannel nightie (it’s getting cold here), went back for a nap, and then put on yesterday’s clothes and come downstairs.

And then I weep at the gorgeous variety of colours surrounding my home, and I wonder if this will be my last ‘dance’ with October and that this symbol of seasons changing represents my life.

…

And then

Somedays I just have to laugh at the Weeble I’ve become…

Papa? It’s me, Vicki

WHO has the right, aside from Papa, to tell us how long we have to live?! If not the Republicans nor Democrats, then who?

A doctor who skims the notes, flips her hair (but in a perky way) and dismisses all the tests by other Neuro/Psychiatrists as “nonsense”? I think not.

A Cancer specialist who, after reviewing their opinion, says “I’d say 2 – 8 months.”

I love the Cancer Centers of America ads where they look at a woman with a terminal-only cancer, and tell her “when you came in, we didn’t see any expiration date on the bottom of your foot.”

We need more physicians like them, who know attitude overrides all medical statistics.

My mother had lung cancer that had metasticized to her brain. Hopeless, one doctor said. We met with many ‘experts’, but only one said, “Bevvy, there are those who say you have a few months to live. But I see a strong woman, willing to defy both heaven and hell. I’m betting you will have a longer life than that.” And that described my mother.  Determined, love-filled, committed to the those she cared for on a daily basis: the parish priest, the parish office, her husband’s cousin, Wanda; her husband of course, without a doubt her daughter and grandchildren, now without a father; her mother, her best friend Marge, whose husband was battling lung cancer… so many more.

And she did. Because of seizures she left the Subaru in the driveway, and at 7 a.m. she walked to the church, declining a ride. She took in the Mass stipends, washed the clothes, walked to Rochette’s for groceries, vacuumed the rectory, ran to the office, did her work there, walked home with honeyloaf for Dad’s lunch. She didn’t as for anything. In fact she remembered the same walk from Chestnut to Michigan Avenue, to Peninsula, the same route she took as a teenager. She listened to birds, she journaled, she took time to smell the lilacs and the Mock Orange. I never heard her complain. That was in 1982. 1983 came and went.

And one day she took on too much. On Thanksgiving Day, she went to the rectory – with no one knowing – to gather up the laundry. And she fell off the bottom step. Her leg broken, she had a flight of 5 porch steps, and 2 steps and then to drag herself up to un-lock the door. Dad didn’t know where she was, but figured she was working at the rectory. Between stuffing the turkey, we kept calling the rectory, but got the pastor’s answering machine.

We were idiots. Just kept calling, leaving messages. Bev was so independent. Finally, worried, I retraced her steps. She was in the lawn, which was frosted. Sobbing. She told me, frost on the steps, she slipped. She had tried pulling herself up the steps, but the pain left her there. Then she took all her strength, pulled herself up, inserted the key, passed out. When she got to the phone, all our messages clogged her ability to reach us.

She figured her best bet was to go back into the yard. And that’s where I found her. Dad had driven by, no sign of her.

We took her to the hospital. She had broken her fibula in 2 places. But that was just enough to awaken the treated cancers, and they ran rampant through her body. By January 28th, her life was fulfilled on this earth. She did it with aplomb, with humor, with grace. And no regrets or recriminations. And she had gone from their 2 mos. guess in 9/81 to 1983. Without the fall, I bet she’d have gone even longer.

Attitude. Brassiness. Balls of steel. My Mom. And I hope I live and die like she did. That would be the best I could hope for.

Love you, Beverly Roseanna Therese Peterson Wells. Could use a little help here. You were only 53, I am an old 61. xxoo

Papa, you listening to us??

She would drink to this! And I with her. I think this was my wedding … aawwwkkk! She knew more than she let on.