Growing small… a better understanding

I wanted to share this lady’s message. I transcribed one of her pieces from Robin Morgan’s TED talk in 2015. As Karl Robb posted in his blog “A Soft Voice in a Noisy World”…Her gentle cadence and masterful verbiage put her finger on many of the concerns, frustrations, and unknowns in dealing with a most mysterious illness.

. No Signs of Struggle

Growing small requires enormity of will: Just siting still in the doctor’s waiting room watching the future shuffle in and out, watching it stoop; stare at you, while you try not to look. Rare is an exchange: a smile of brief, wry recognition. You are the new kid on the block. Everyone here was you once. You are still learning that growing small requires a largeness of spirit you can’t fit into yet:

Acceptance of irritating help from those who love you; giving way and over, but not up. You’ve swallowed hard, the contents of the “drink me” bottle and felt yourself shrink. Now, familiar furniture looms, floors tilt, and door knobs yield only when wrestled round with both hands. It demands colossal patience, all this growing small:

Your diminished sleep at night, your handwriting, your voice, your height. You are more the incredible shrinking woman than the Buddhist mystic, serene, making do with less. Less is not always more. Yet in this emptying space, space glimmers, becoming visible. Here is a place behind the eyes that some would call diminishment.

It is a place of merciless poetry, a gift of presence previously ignored, drowned in the daily clutter. Here every gesture needs intention, is alive with consciousness. Nothing is automatic.

You can spot it in the provocation of a button, an arm poking at a sleeve, a balancing act at a night-time curb while negotiating the dark. Feats of such modest valor, who would suspect them to be exercises in an intimate, fierce discipline, a metaphysics of being relentlessly aware?

Such understated power here, in these tottering dancers who exert stupendous effort on tasks most view as insignificant. Such quiet beauty here, in these, my soft voiced, stiff-limbed people; such resolve masked by each placid face. There is immensity required in growing small, so bent on such unbending grace.

A voice to be heard!

I went through the LSVT protocol, February of last year. Although the therapist said my hypophonia showed improvement, I admit, I have not been faithful in following thru with the shouting exercises… It makes me very uncomfortable to shout at people. even if they tell me I’m not shouting.

I saw the following post, made by a caregiver, on a community blog today…. and I am really intrigued:

“If for some reason such as dementia (as my husband has) LSVT LOUD isn’t going to work there is an alternative to LSVT LOUD. A device called Speechvive. fairly new about 2 years. It automatically plays a sound in your ear mimicking background noise when you speak causing you to talk louder and clearer without thinking about it. They are working with the VA and have started to get payments from Medicare. They do have a 60 day free trial period. Have excellent customer service. The device is programmed over your computer. May take some adjustments to get the sound level right but no need to remember cues etc. The website is

I think I shall pursue learning about it, just as soon as I have completed my 30 day commitment to participate in a double blind study for a promising approach to break down or dissolve the build-up of the protein (alpha synuclein) in the brain. 🙂