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.