Aug 15

Journal: August 15, 2009 – Foggy

Felt a little ‘foggy’ today. A friend had stopped by, and it was an effort to focus on him. I said “I’m sorry but I am seeing you from a distance. Can barely hear you.” Two hours later I was in the middle of something called “Distonia” facial and body spasms, not unlike a seisure but I am fully aware of everything. The extreme pain, the terror as my eyes convulse closing shut so tightly that once it left my eyes bloodshut. My jaw clenches shut and I cannot speak, then my tongue will push through and extend to the most painful lengths, then my lips curl, nostrils close, and thru all of it I cannot speak, cannot move.

With God’s good grace my daughter, husband and grand-son came by, like if on cue. They took one look at me trapped on the couch, and went into their now experienced mode. Beth massaged my facial muscles, while Keith tried to unknot my feet and calves from their spasm, all the while saying ‘breathe, breathe, it’s not as bad as last time. You know you can do this.” And I tried to implore them with my eyes or grunts, but my hands were curling and my body was trembling. They pushed the pills through my lips, and in a moment of reprieve I could swallow, and then it would begin again, like labor pains but with no positive end except to survive.

After a few hours, they helped me into bed, stayed by my side for the next few hours, cool cloth on my head, and we wept. Wept that I had to burden them with this, and that I was burdened with this.

The next days I would not be able to move, save with cane or walker. Today I still have trembling and pain.

I pray for those who pray for us. And offer my gratitude for all the help that is offering itself to me.

It feels like a volcano errupting in the cornfields. Nothing you would expect. Something you expect will kill you.

Help, I'm in here and cannot get out.

Permanent link to this article: https://vickisvoice.tv/2009/08/journal-august-15-2009-foggy/

Aug 12

After the Farmers Market

Wednesday, August 12, 2009: I am tired beyond belief, and basically my Grands took care of it all. They made the bouquets, they toted and fetched and put up my ‘booth’. It was warm and they said “Mim, just stay home for awhile.”

Then my son, Nick, showed up with his girlfriend, Jessica. And we visited each booth, buying something from all of them, which I hope I will remember to cook. Great sweet corn (13 – the wonderful Baker’s Dozen!! Like from my childhood with Bill X at the IGA – the Black and White market.)

My brain won’t let go of stuffed cabbages, which wears me down. I love to eat. I love to cook, but it is so much harder now. That I pulled off 2 dinners for Ron and Stu and Beth is nothing short of a miracle. Of course, I had to be in bed 2 days to pay for it.

So many things were so easy. Cooking, baking, speeches, manning booths across the country. And now I look at the 3M tiny notes on my mirror. Brush teeth. It moves to the middle mirror after I have done that. Take Shower moves back to the top of the leftmost mirror. Take pills moves from 1 to 2 to 3 and back to 1 for the end of the day.

The most productive thing I do now is moving the notes on the mirror each day. And I was one to level mountains, cross oceans, thriving on challenges and … succeeding. Today, Lord, it is enough to get out of bed, log in to Face Book, plow a virtual farm or two. Not what I thought I would be doing, but – loving you – I know this is important for some reason.

Losing my job. Being hospitalized. Going bankrupt. There is a reason that I don’t know, I am sure. But I embrace and accept the dance of these last days.

Thank you, God, for asking me to dance with you. You are the best. And I will follow you, I promise.

Love, Vicki

He bought sand candy straws for 3 lucky young ladies. And for this old lucky lady, I just smiled, proud of him.

Neighbors - the Kale lady, brought me free bundles each week.

Permanent link to this article: https://vickisvoice.tv/2009/08/after-the-farmers-market/

Aug 10

Journal: August 10, 2009 – Waiting, Wondering

Charlie just came and gave me communion. I haven’t had communion in months, but somehow, he knew. He is a young, dynamic priest in his 70s and he has elected to take me under his wing. He was the founding Editor-in-Chief of Faith Magazine, Lansing. I so needed that balm.

The dr. said it will be a tough row to hoe (what the heck does that mean? btw) We are all waiting to find out what the “last phase of FTD” means, but, alas the appointment for the rest of my life doesn’t happen until 9/29/09. It’s like finding out your have a Stage 4 cancer, and you undergo every test under God, and they say, “oh, come back in a couple of months.” I might only have a couple of months. What about my questions about how I will die with this disease, how my children will cope with that? How about I wander around, totally in apathy, bouncing from room to room trying to know who I am, and they have a drug that will help me focus? And I can’t find out about that for 2 months?? No way. How about the pre-sleep and post-sleep hallucinations? Still 2 months? You tell someone they are dying and then say, “see you in two months”? I don’t think so.

Pray for the hallucinations to stop, and pray I can see the doctor who holds my life in her hands, soon. I will have so much more peace knowing. Dying is a single path, I know. Doesn’t matter how many are there, we walk it alone.

Life changes. You become your parents. You take pills for waking and sleeping, breathing and resting, wrting and reading. Each day is a journey in and of itself.

Permanent link to this article: https://vickisvoice.tv/2009/08/journal-august-10-2009-waiting-wondering/

Aug 09

Journal: August 9, 2009 – Words

Sunday, August 9, 2009: Was sitting by myself, and started to laugh out loud. My crazy speech patterns have been just that, crazy. I owe my existence to a stubborn, creative part of my brain that is helping her shrinking alter-ego. So while I don’t miss math and bill paying too much (oh that brings a big smile to my face) I appreciate the coping skills God has given me.

Once, Nick was driving and I saw a pedestrian dart out. Searching for the word, I blurted out “Hark! Hark! A pedestrain cometh! Do halt!” He said, “you mean ‘stop’?!” Yes, I had meant that but the simple words elude me.

Another time, totally lost in the city of Cincinnati, I called my personal GPS – Greg – and said I didn’t know where I was. “I have no directional plate,” I lamented. “Directional plate?” “Yes, you know a gazeteer.” “You mean a map?” and yes I did, but again it was gone. He then ‘rode with me’ on my cell phone many a time, getting me to my church clients, to my hotel.

Reading has become mystical, too. I was re-reading “The Shack” and suddenly the word hamburger was everywhere. Hamburger? I thought. What the hey? So I closed the book, did other things, came back and there it was again throughout the paragraph. A few days later, my daughters were cleaning out my fridge, and they found 4 or 5 stacks of hamburger, that I kept impulsively buying, to make stuffed cabbage with. So, now I know that whatever is on my mind inserts itself anywhere. To say “I need to plant my hamburger” means I have hamburger on my mind but was intent to plant my flowers. But knowing that gives me a clue of what I want to do, and now, like Nancy Drew, I will write down the clues. There may be yet another way to cope with this.

Have a good hamburger, and God bless!!

Love, Vicki

My gal pals gave me the lazy woman’s way to do stuffed cabbage. In a lasagne pan, layer cabbage, hamburger mixture, tomato sauce and repeat. It sounds so easy I may hamburger it today.

Permanent link to this article: https://vickisvoice.tv/2009/08/journal-august-9-2009-words-2/

Jul 17

Journal: July 17, 2009 – The Diagnosis

I sat before Dr. Bazoki, with Beth, and we conversed like over coffee. “Your mother has an amazingly brilliant mind,” she said. “It may have kept her alive to this point.” Our jaws slung low. “I believe it is Frontal Temporal Dementia – FTD/Picks.” and she said she would eat her hat, if it wasn’t. We sat there stunned. Beth began to weep. “I was so afraid it was Alzheimers,” she said, quaking. “I was so afraid we were all at risk. Thank you! Oh, Thank You!!” and I watched, not here nor there, as she amazed me with her deep grief being relieved.

I had dreamt it too, of course, but no one in our family had Alzheimers, so I cast it away. Pooh. But niggling in my brain was my grandmother and great-grandmother who died of dementia, but – hey – it’s not Alzheimers, right? Oh, not so right.

Watching my daugher weep, I gazed – apart from all this – just watched like a bystander. Surely, this was the better? But no. It is more lethal than anything we’d ever heard of: Parkinsons, ALS, epilepsy and Alheizmers. What the heck?? What the HEY??!!

You need to look at hospice, and assisted care facilities, Dr. Bazocki said. We were already nodding – like Geppeto and his puppets. Uh huh, we said, glassing over. And wear your C-PAP, she said. We thought it was because she had Dr. Quimby’s chart in front of her. But no. Last Friday she said to wear the scary mask to keep my brain alive, nothing to do with sleeping.

So, have I passed along a deadly gene to them that will rear it’s ugly head in their 40’s? I do not know. I only know I could take down mountains, slay anything brought in front of me with my slicing wit, my amazing creativity. And they are dying.

I lost my job, the only job ever fired from, because I could not do it. Oh, I tried. I stayed up 24/7 trying, but I failed. And I was fired. And hospitalized twice. And felt the hand of God had left me in a demented state.

And today, I know I have somethiing called “Frontal Temporal Dementia – PICKS Disease” and last fall I was told I have a slow growing syndrome with my eyes, called Fuch’s Syndrome, where the liquid in my eyes dries up, not unlike my brain, which has been atrophying. The 6 moves in 4 years; the 3 new jobs all of it killiing me softly with their song, killing me softly…

I want to hit something, to rail against the unfairness of it all. Did I not give up my family to serve the Church?!! Did I not give away my nights and my days for pedophiliacs, church slaughters, Terry Schiavo, the late JPII, the new B16? Damn. And for what? I ask myself.

So much to take in. So many roads to take. I think it’s gonna take some time. Maybe all I need is time.

Love,
Vicki

Long lonely nights, with no muse in sight, I sit on the couch waiting for the first light of day. And it comes slowly and it brings bird song, and morning breezes through the window, ruffling the curtains, the hair on my damp forehead. “It will be ok” she says. “It will be ok.” And I trust the dawn, but yet fear the night.

Permanent link to this article: https://vickisvoice.tv/2009/07/journal-july-1-2009-the-diagnosis/