It is now – what? 8-9 years ago? I cannot remember. I lived in the perfect house blocks away from a job I loved, but would challenge me to the max.
My best friend, Carol, and her grandson, were coming to pick me up for his little league playoffs. I was so excited to go. This move to Florida was to accomplish many things. 1) To move where I could retire and not invade my children 2) to heal from being a workaholic and 3) to finally create a life for myself outside of working, proving, and (sadly) working harder. To not worry my children will have to care for me. And it was supposed to be a good time coming – and much deserved – in this diocese.
I heard the doorbell. Suddenly I broke out in sweat, pouring into my eyes. My heart wanted to jump thru my throat. And I was cemented to the doorway of my bedroom, purse in hand.
Knocking. I went into the bathroom and thought they would think I had forgotten.
Voices, knocking on patio door, windows … Frightened, I hid under my bed, thinking I was going to be hurt if I came out. Dripping with perspiration, wanting to break free and just go to a damned kids ballgame, yet not able to breathe.
When did going to a Little League Game scare me so much that I stayed 2 hours under my bed, soaked in sweat, sobbing?
I heard them leave in their car. And I sobbed more. ‘Papa,’ I breathed, ‘something is wrong with me. Oh, God, help me! What is wrong??’
What was wrong was that the symptoms of my decaying mind were becoming pronounced. And while in St. Pete’s no doctor, nor psychologist nor psychiatrist could tell me anything but that I was over-worked, exhausted, needed socialization.
But what no one could tell me was – these symptoms that had continued to build up over the years, and the story they would tell – unlike symptoms as we know them – was: “It’s too late.” When neurological symptoms show it is telling us what irreversible damage has already happened. Parkinson, MS, ALS, Alsheimers and mine, Frontotemporal Dementia (FTD) or Pick’s or Lewy Body. There is no contrition you can make, no change of lifestyle that will change the path you are on.
Symptoms only tell you how far you have declined with no hope of reversal. No treatment. No cure.
And so, today, I fight with treacherous dreams that wake me up but don’t let me separate reality from fiction. Like tonight. Where, fighting as hard as I could, I could not break free. Standing, still in the web, I heard myself struggling to speak. It was like I’d had a stroke. I knew I was awake, since I was standing up and motioning to Beanni, my pup. But the words struck him odd as well. He didn’t respond but backed away.
And I smacked the air and prayed “God, please PLEASE let me out!” Soon the guttural grunts moved to words. When I recognized words, I kept speaking. Speaking to my dog and to myself, until I was fully awake and in the present. I could taste, smell, touch and speak.
Shaken, I walked downstairs to get some water and use facilities. But I’ve been at this keyboard since 3:40a. It’s now 7:06a and I can just now take a deep breath.
My brain is dying. And if the only harm I do occurs in dreams, I will be grateful. However… I am changing. And I am frightened.
Papa, just hold me. And don’t stop until I come home.
It’s me, Vicki – or, what is left of her.
Please pray for those of us with mental illnesses or dying from dementia. Look beyond our clouded eyes and distorted bodies and faces and try to remember what we were in our best of days. Please?