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?
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Thank you so much for sharing this. I am glad we had some time together to talk and share a “Timmy’s” when I was on my way home from Cincinnati – it seems so long ago now. You are in my prayers every day and in your sharing this I know more about how to pray.
God loves you and He is holding you through all of this, and you, by sharing this, will bring comfort to others who are going on a similar journey.
And know that you are loved and cared about by many!
Judy (still in North Bay, Ontario)
Good morning Vicki….I just read your story. I feel shaken by it. There is all sorts of terrorism. The worst must be when our own brains betray us. I wish for you to be comforted today. I have no answers. i am so far away from you. I wish I could come by and give you a hug and maybe some laughter.
with Love, Pat (in Sebastopol, Ca)
I have never ever wished or thought about wanting to be God, but today, just today for one minute I do and I would so heal you because you are one that is needed here to help us all save our souls. Instead, I will just pray to Him to wrap his arms around you and let me pretend that that hug is from me. You are so loved by us all.
I always think of you as the beautiful Eliza Doolittle from “My Fair Lady” at Grayling High School. You are an inspiration to so many. I ditto what Sue Schnipke wrote to you on September 2. Love you.
God bless you and keep you Vicki.
Hi Vicki, my name is Joe. I just stumbled upon your blog because I have a huge desire for people in your situation to be healed. I have another good friend who’s wife has the same disease and I have been seeking God for answers. I know that the Bible says to lay hands on the sick and they will recover it also says the prayer of faith will heal the sick, it doesn’t say it might heal the sick but that it will.
I say this to bring you hope, I do know God and I have seen Him heal, His word is truth. I know it may seem light compared to your diagnosis but it still holds the same truth for you and our circumstances. I would like to share a testimony of something that God has shown me. I used to get the flu every year to the point that I could just about put it on my calendar.
I would be hugging the toilet saying “Lord heal me, please take this from me, heal me” and nothing would happen, I would go through the full term just like everyone else. Though this particular year about 15 years ago I was listening to the radio and the person speaking said we are not the sick begging to get healed, we are the healed and the devil is trying to put sickness upon us. So along came the flu a while later, I had all the symptoms nausia, light headed, cold sweats, feeling like I was going to throw up, only this time I remembered those words “we are not the sick begging for healing, we are the healed and the devil is trying to make us sick” So instead of pleading for healing I stood up and said told the devil that I am not receiving what he is trying to put on me, I commanded him to go! Then I started doing jumping jacks though I didn’t feel like it, but by the time I got to ten it was completely gone. As I said this was 15 years ago, since then I have always received healing for myself and my family. The same Spirit that rose Christ from the dead dwells in you and He will quicken (make alive) your mortal body. When Jesus took the stripes He did it for us to be healed. Shouldn’t He get what He paid for?
I write all this in hopes of giving you hope because I genuinely love you and care about you even though we’ve never met. I wil be praying for you Vicki and expecting a miracle. God bless you with all that He has purchased for you on the cross! 🙂