The day dawned, so beautiful it almost choked me up looking out the window as the sun rose. A perfect day from Papa. I just lay there, the breeze shuffling the sheets, the birds singing. A perfect day…

I’d checked with my kids to see if anything was on the docket for the 4th. I remember the old days when we would gather at Beth’s cottage on a tiny lake, not much more than a large pond. We’d have a bonfire, the kids swam in the lake, we played Euchre or double Solitaire up in the cottage. We’d have burgers & dogs, and later hobo pies over the fire.

Someone always had a stash of Indiana fireworks. Dusk came, and we’d settle in for our own celebration. Then kids tucked into the loft, we’d say Good Night to the 4th of July.

So, for the first time in a long time, I was ready to be with my family. No Bertha Lake exists for us any more, but my kids have a boat in Grand Haven. I wanted more than anything to be there with them.

But they all said they had plans. I hinted that the sister who lived near me and I would love to come over. They said they had friends they were hanging with.

Disappointed, I texted my daughter, who said she was on her way to her sister and brother’s. Just after that they sent photos of themselves on the boat in the beautiful harbor of Lake Michigan.

In that moment it was like lightning struck & split me in two! A rage began in my gut, and spread throughout my body. An anger so hot it scared me. And I was over my head in sadness. and I needed to close FB and get away.

The day continued, bathed in rage, throwing things, cursing, weeping, screaming. It was like someone else was driving me. And then the dystonia started just as fiercely. I almost pressed my emergency button twice. Eventually, exhausted, I fell asleep.

I want to tell my family I’m sorry, but a part of me cannot yet. The embers of my anger are still easy to flare up.

I hope they know it’s not me. It’s the evil on my rotting brain.

I know they have a right to a life without me. Each does the best they can given their lives. But I’m not ready to be without Vicki. I miss her, too.

So, Happy 4th of July weekend. I celebrate, by accident of birth, that I landed in the best country on the face of the earth. I am ashamed of my reactions, but there was/is nothing I can do when the other side of Vicki takes over.

Blessings. Papa, it’s me, Vicki

I will never understand how the brain works. Or, in my case doesn’t.

I still have the intelligence to know how things should be. But I have no control over how to perform the actions to make life normal..

Yesterday was a ‘good day’.

What does that mean to someone with FTD? I had no dystonic seizures (uncontrollable movements, grimacing). It was a rainy day. That meant I slept well and later, had a good nap with no dreams.

A good day begins with “Good morning Papa, Beanni” and ends with a thank you at night.

A good day means I can make something to eat that takes more than 2 minutes. With the help of Uncle Ben’s microwavable rice, a friend who brought me asparagus and Schwan’s Italian beef, I made a dinner.

A good day means, when I check my texts they are all current, and family and friends haven’t been waiting for days for a response.

A good day is laughing, venturing onto my porch, picking up my dirty dishes or laundry. That’s a good day.

Today isn’t. But with the grace of God, tomorrow will be. A good day.

It’s 1:39a. I’m playing games on both my PC and my iPad.

Tomorrow I am hoping (praying) that I can attend our parish healing Mass.

I can’t sleep. I’ve had 3 sessions of dystonia (seizure-like, muscle spasms), and everything points to my past of being unable to go outside my home.

So, I take the drugs and play games wondering if I should just stay up all night or try to get some sleep.

It’s been 4 years since I’ve walked into my parish. They serve me regardless of whether I cross their threshold, nor afford to tithe. Which boggles my mind.

They bring me communion (Eucharist) when I allow it. Socially I am shriveling up. I have a hard time letting people in. A harder time leaving my home. My fortress.

I’ve asked my daughter, Beth, to take me. I’ve invited a dear friend to come with. My Eucharistic Ministers will be there.

I need the fragrance of incense and bees wax. I need the balm of sunlight through the stained glass windows. I need to light a candle for those I love. I need to touch a pew. I need the healing oil Fr. Bob will anoint me with on forehead and palms. I need the forgiveness.

Most of all, I need the hope that a healing Mass provides. To heal, to maintain or to have a happy death with my family around me.

Papa, I’m trying with all my strength to be present tomorrow.

It’s me. Vicki