Have you, on occasion, experienced a moment when something profound comes alive in a brand new sense? In a “eureka moment” this past week, I had been thinking about how disheartening it is to no longer be able to communicate verbally with Jon, my family, our little mixed-breed terrier, Emma, neighbors, and friends. It wasn’t a pity party—just a genuine grieving for the loss of something so personal and precious. 😢
In my February 9 post “Let’s talk tongue,” an excerpt from PubMed.gov includes:
Loss of communication effectively imprisons
the patient in a state of isolation.
Deeper contemplation of the word “imprisons” brought to mind accounts of people unfairly incarcerated. Having committed no crime worthy of such harsh punishment, their confinement was ordered by hateful, totalitarian regimes. Sometimes their imprisonment culminates in horrific executions. Ultimately, others are released.
A prisoner in isolation is alone in a dark cell. He or she still has their voice but have no one to talk to. In a 180 degree flip-flop, a person with bulbar ALS does have people to talk to but no longer has a voice to communicate.
So what was my eureka moment?
We’re almost there . . .
Grasping a truth, as if it was the first time . . . the same God Who made me, loves me and has graciously communicated with me through the Bible and His unparalleled handiwork in creation.
He HEARS ME even though I cannot audibly talk.
HE KNOWS MY THOUGHTS!
Here are the appropos words of David recorded in Psalm 139:1-4 (Amplified Bible)
O Lord, you have searched me [thoroughly] and have known me. You know my downsitting and my uprising; You understand my thought afar off. You sift and search out my path and my lying down, and You are acquainted with all my ways. For there is not a word in my tongue [still unuttered], but, behold, O Lord, You know it altogether.
What could be more reassuring—
God is listening and understands me
even when I don’t utter one single word!!!
I am not isolated from His presence!
He’s got me firmly in His grip.
He knows what this disease is doing to my body.
He understands my groanings—
even though I cannot utter intelligible words.
God needs no intrepreter.
Amen ❣️
Indeed, God hears our thoughts, and the words unuttered. and we too can feel His presence in our thoughts. I feel my own parents thoughts in my inner dialogues. I can feel your emotions in your sensitive words. Thank Our Lord for the written word and the Internet. Thank Leslie for her desire to share her thoughts and use her suffering for the betterment of all. Our prayerful thoughts soar to her and Jon. Genevieve
Genevieve, thankful all the more for Laura and Jarrod designing my website which is my special gift enabling communication with you and so many other friends.
Losing the ability to communicate verbally is indeed a loss to be grieved, dear Leslie. Thankful that God is encouraging your heart in the midst. Might you qualify for help with an adaptive communication device such as an eye gaze speech generating device? A friend with a special needs daughter who has no speech or purposeful hand movement uses one called a Tobi. A speech therapist works with her on learning to use it. Wondering if something like this would open up new possibilities for communication for you. Hugs to you, my friend!
Thank you, Marilyn, for your keen sensitivity. My understanding—the Tobii Dynavox is helpful for people who, as your friend’s special needs daughter, have lost speech and hand movement. At this juncture, my fingers still work for typing and writing. So grateful for this! There may come a time when the Tobii Dynavox will be needful. The intent of my blog post is to shine a light on the difficulty and accompanying sadness when one can no longer communicate through spoken words in their own voice. The resulting disconnect from loss of speech runs far deeper than I ever realized.
Thank you Leslie, for continuing to enlighten, enrich and amaze all of your friends and family with your touching posts! I am so grateful to follow your journey. Your positive outlook and strong faith are just a couple of reasons that I’m thankful to call you my dear friend!
Stephanie, what a priceless encouragement you are to me. Thank you so much!
Dear Leslie, you are amazing. In the midst of all you and Jon and your family are going through, you have a heart’s desire to enlighten and educate and encourage the rest of us! God bless you; He indeed knows your thoughts and words and heart, even better than you do yourself!!! What an amazing Heavenly Father we have.
❤️❤️❤️
Thank you, Marjy. Only as God gives me strength in my increasingly weakening condition.
God has gifted you with the ability to communicate beautifully and powerfully, through your words. Though not audible, your heart pours itself out onto the keyboard for us to drink in; to both encourage and challenge us. Your words have thrown the roof off the acronym ALS, Leslie. You’ve more than educated us; you’ve personalized it.
I find great peace in knowing that the one the Lord placed in your life on this earth to reflect His deep love for you is your precious Jon. He loves you more and more each day. He, too, can “read” you – through your eyes, your movements, through the experiences you’ve shared together. He can empathize and understand you like no other.
Praying you rest in Jon’s arms as you rest in His.
Love you.
THANK YOU, Katie. Precious friend❣️