Most of the posts here on the main page of Vicki’s Voice are written by Vicki herself. Once in a while, though, I jump in to share something about Vicki that helps tell her story, helping you know Vicki better. As Vicki and I have each written earlier, the main reason for starting this blog is to help connect people, especially persons affected by dementia and other neurological diseases, and support one another in what can be incredibly difficult times. Through her writing, comments and other interaction with people through Vicki’s Voice and Facebook, Vicki shares herself with others, and with generous doses of wit, honesty and wisdom, helps many of us reflect on our own lives and in some cases open interior doors that may have been closed for a very long time.
On Facebook yesterday, in the midst of several days in which she hasn’t been able to speak, Vicki asked for prayers that her voice would return – even for 15 minutes – so she could record an important acceptance speech in case she can’t speak aloud at an upcoming conference. Since reading that request, many of us have been praying for Vicki’s audible voice to return and leaving comments to let Vicki know we were praying for her. Among those comments is one from a Facebook friend, Hope Grace, that expresses so well what Vicki is doing for other people through her life and her communication. I feel it’s important for Vicki, for me, and for all of us to read this. I doubt that Vicki would post this here, so I’m glad I have a “key” to the front door and can share it with you, with, of course, Hope Grace’s permission:
Some of my random thoughts about Vicki and her voice:
Vicki teaches me. She may find that traditional English language words fail from time to time, but her spirit voice shouts – perhaps her version of her “inside voice” – chock full of all the loudness, the gregariousness, the excitement of her outside voice, and we train the ears of our soul to hear it. What’s in Vicki’s spirit voice? Right now…perhaps some fear of the future. Fear that those entrusted with her care will not be authentic, will not speak the truth, will put on a fabricated show with certain enhancements, as if to get the ratings up. Fear that no one will hear. Fear that only the perception of the words of the others speaking on her behalf will now become the persona of Vicki rather than Vicki’s own voice speaking on her own behalf. Fear that her lived truth will not be heard. Fear that this creative, compassionate, fully-alive, brilliant, animated, energetic, accomplished woman who has used her written and spoken voice to transform and to cause change will be voiceless. Never. Perhaps simply shifting from outside voice to inside voice when she needs to. Voiceless? Never.
Vicki (and I only know of her through Facebook) is a leaper…free falling…leaping, risking, being vulnerable, saying YES, taking her own private, creative thoughts and ideas and leaping out into the unknown of sharing them with others. She never knows what their response will be, but this courageous woman always takes the leap, nonetheless, knowing that it is better to leap and risk and trust. Vicki is NEVER lukewarm. She stands for something. Even if she has fears, she risks. She connects. She shares. And oh, look at the work she has done. Looking to the years ahead now…one day unable to vocalize with her outside voice, maybe. Gasp. One day unable to type and express her outside voice through print, maybe. Gasp. One day unable to make a sandwich, even one with atypical fixins, maybe. Gasp. Going between outside and inside voice – it’s okay, it’s okay.
“In the arms of Papa” she writes frequently. Inside voice or outside voice – she speaks authentically. She speaks the truth. Always the truth. Does she actually “see” the arms of Papa the way she can see a six foot banana? I don’t know for sure, but probably not. But are the arms of Papa there? I learn from Vicki’s faith. Vicki spoke it. Vicki lives it. Vicki trusts it. Vicki goes forth and doesn’t wuss out. Despite any secret fears, Vicki leaps. Lookout baby, here she comes. It’s a free fall, but she leaps. She trusts. Vicki teaches me that leaping is where it’s at. And so I study and observe carefully, hoping to do as Vicki does. One day, if she finds she is only able to speak with her inside voice, I believe she will fully leap into the arms of her Papa with a big bright smile, a twinkly wink, a compassionate, playful, authentically encouraging “Neener, neener, neener” – looking back and nudging along those of us who have yet to leap.
Thank you, thank you, thank you, Vicki. 🙂
Hope Grace
And our deepest thanks to you, Hope Grace, for putting into words what so many of us feel and experience. God bless you.
Jim Coyle
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Hope Grace, you have expressed so well what many of us have experienced because of Vicki’s openness in sharing her journey with us, right from the beginning in the airport. Thank you for taking the time to post these in Facebook and thank you, Jim, for having the foresight to post this in Vicki’s Voice and give it a more permanent home.
Before meeting Vicki I had never even heard of Frontotemporal Dementia but in becoming friends with her it has been given a significance that I would not have acquired otherwise.
And yes, Papa is there, for whatever life brings to each one of us.
very kind of you Jim, to post about Vicki. I am so sorry that she is having trouble speaking and she is always in my prayers.
I can feel your prayers washing over me. I am speachless at your kindness and generosity. All is in Papa’s hands. Keep reminding me, Hope Grace, July, Bro Jer, and Jim. thank you, and blessings …
Jim Coyle w/ example of effects person can have through #socialmedia http://bit.ly/db2CgR Vicki's Voice #dementia #communication
I posted it RT @VickisVoiceTV: ex. of effects person can have thru #socialmedia http://bit.ly/db2CgR Vicki's Voice #dementia #communication