It’s a beautiful August Summer day. I have 2 friends coming to visit today and I am feeling good. Beanni actually used the pee pad. I don’t think it gets much better than this.

Understanding. Comprehension. Apathy. They seem to rule my life and fight with it. My girls came over yesterday, Bep weeding & Tandi getting my groceries. Bep doing my meds. Tandi gathering the bills. And lunch at Relli’s. A good, but long day.

I ache to see my children. Not just for the reason most moms would give, but because I am so afraid of the next phase, where I begin to be apathetic to them, then not know them any more. I don’t want to say that to them, but it niggles in my brain and heart.

I missed Christmas with my family in 2012. Those who know me, know Christmas is my favourite time of the year. I listen to Christmas carols even now. And it is, without a doubt, a high priority family time. From the time I was a baby thru now, my family – parents, then my own, and now the grands – Christmas was a time of laughter, of remembrance, of senses, of all Goode Things.

Last year, I became physically & mentally sick. It lasted for weeks. I could hardly lift my head off the pillow. I had no sensation that it was Advent, Christmas soon to come. I had no feelings, no emotion. Nothing. I had flat-lined. And I knew I was tasting a bitter appetizer of the banquet life had spread before me.

And so, I missed Christmas. I kept to my bed and once I told my family I couldn’t be there, it was out of my head and heart. Fini.

I wish Christmas could be today. I am alive, I feel things. I am sentimental, I easily bruise mentally. I weep, I laugh.

And the Peanut Gringo? My friend is bringing my favourite wine today to celebrate months of us being apart. Ahhh. Pinot Grigio.

Papa? Are you there? It’s me, Vicki

I count things. How many touches on my iPad. How many items I am harvesting on FarmVille 2. How many houses are ready for collection in Megapolis. I just keep counting.

At first I thought it was my way to keep my brain doing simple math. Like, there is a need for 15 bags of feed for the cows on Hay Day. I have 13. I need 2 more.

And I was/am irritated that each time my fingers touch a screen I get sucked into this counting mantra.

I know, somehow, it’s my disease. But that is little comfort as the ritual keeps expanding.

So, Papa, please take each unnecessary keystroke as a prayer for Jim T, Susan & Cindy, Greg & Jim, Sue & Jim, the kids & the grands, LeRoy, Lynn & Randy, Elizabeth & Patrick, Charlie & David, and all my friends, both real & virtual. Let not a digit be wasted. And may my racing brain find rest in you. Whom I love most. Love, Vicki

This week I have been blessed to have my good friend and co-blogger, Jim, here for a visit.

God could not have picked a better time. A few weeks ago we survived my grandson Zack’s wedding along with Greg Friedman, we survived my pup, Beanni, being in an overnight stay.

And life went on. I fully anticipated that our successful trip to the west coast of Michigan would have effects on me. And it did, as expected. 3 weeks of sleep, dullness, waiting for my brain to rewire itself, as – praise God! – it always does. Always a bit worse for wear, but surfacing none-the-the less.

And so it seemed. With few demands on my life or my social skills, just hibernating seemed to be enough.

Until yesterday. Jim made his pilgrimage to see how I was doing, and it appeared pretty much ok. He’s familiar with my morning naps, my right after luch naps. He’s very kewl about such things. Somewhere in that time frame, I had received a call that Rxs were awaiting me.

I came downstairs to say that simple thing. And my mind drew a blank. No, seriously for the first time, a blank. My internal ‘hard drive’ left me years ago. My DVD shortly after that. So to speak these days I rely on my RAM – random access memory – not great but a comfort that of 100 choices as least there I had at least 10 choices of words.

But not that day. It was like I had a simple notepad. And it was blank.

For the very first time since being diagnosed with FTD, I had finally come to the point where there were no words. Nothing.

My brain wanted to tell him I had 2 Rxs at the drug store and I had 2 more to add.

I’m feisty, and when all but grunts came out I pointed to my ipad and he gave it to me. I had barely added ‘I need to add Benedryl and…. one other…’

But before I could finish that short sentence, my body ran head on into a full blown dystonia (uncontrolled body movements). My head wanted to crawl down my spine. My lips wanted leap off my face, taking my tongue with them. My hands curled up like those of the wicked witch of Oz. My eyes wanted to leap out of their sockets. My legs wanted to roll up, as the wicked with of the East’s did when the house landed upon her. My spine wanted my neck to curl down to it’s upper base, and it pulled my head in ways that I didn’t know it could do, but then … my shoulders fought with my head and for hours it was a tug o’war.

Thank God my good friend Jim was here. He shoved pills between my curling lips and clenched teeth, and gave me sips of water.

5 hours later he was at my side, having seen me through 2 more dystonia seizures. I had passed out after the first.

Maybe it’s too dramatic to say he saved my life. But all I know is God had him here at that moment in time. When my brain and voice died.

And I will be grateful forever to have survived with someone at my side.

Papa, thank you for knowing when I would need help and providing someone to sit by, watching what looked like an exorcism, and be there to bring me back, to my reality.

Dying seems so noble. Living despite knowing you are dying brings grace.

Blessings & love, Vicki