By the ‘Goode Grace of God’ I’ve had almost 6 good days. Many of you know what I mean if you have FTD. Here’s what my prior good days before the symptoms looked like:
- got new accounts, and we celebrated
- rekindled relationships with customers
- did a presentation that brought Catholics back
- taught great people to use technology for ministry and how to respect the intimacy that technology portends
- wrote dozens of marketing plans – or –
- wrote dozens of evangelization ideas
- wrote about the Dignity of Life
- defended the Catholic faith
The few good days I’ve had now are:
- didn’t have to take a nap
- participated in a forum chat on Tues & Fri
- bright when I look at my electric cart
- can plow farms and cook on Cafe World, Facebook
- can make a sandwich
- clean the toilet
Notice a slight change. I did too. In July it will be my 1 year anniversary of my diagnosis of Frontal Temporal Dementia, FTD. Put your hands like you wanted to cover your temples and ears. Then put your hands on the top of your head. Now, picture those spaces deteriorating for no apparent reason.
Recall that from the date of your diagnosis (DX) you have from then to 3 years when your cognizant life ends. But your body – your shell – might continue for years… What do you feel? What would you do in a deformed body, in a mind and behaviour that was never you, being fed by hand or a tube, with your family – loving you, but each time they visit, your mind knows them, but you cannot speak or indicate you know who they are … and then your world closes up and you refuse to open your eyes. You need to feel safe and they suddenly frighten you.
And you can hear your family ask how you’ve been. The nurse, overworked, underpaid but kind, gives them some positive feedback. “She’s doing good today. I think she knew who I was. She ate a little custard, spit out the broccoli, but enjoyed the bread. And when I told her you all were coming, I think she perked up a little.” Which we all know is a lie, but I can’t tell you that. I blink repeatedly. One of you says “does she blink often like that?” and the nurse says “yes, but it’s just a reflex when her eyes are dry. Doesn’t mean anything. But I told you that when I read your letters, I think she knew it was from you.”
Liar, she didn’t read anything from you to me. I do know you, always will, but with no speech and muscles who quiver or tremble all by themselves, you don’t know. And so you listen to her … Your gut is trying to tell you something, but you defer to her. “I work with Alzheimer’s patients all the time. Their movement or signs of recognition are just a reflex. There is nothing there that was once your mother.”
And I watch the 3 of you begin to weep, she hugs you. You kiss my cheek and tell me you love me. Then, hugging one another, whispering, you walk out together. And I pray to God, to take all of me and let me out of this FTD prison. I close my eyes, and a tear slides down my cheek. The nurse pats my shoulder, wipes the tears and says reassuringly, “Vicki. Your children were here and they love you. Now close your eyes and rest. Later I will take you down to Bingo.” And another tear rolls down my cheek.
Papa? Where are you? It’s me, Vicki (blinking hard)