Prosody. If I didn’t know what the word meant, I’d guess that it was a business term, similar to the word, escrow. But it refers to the patterns of stress and intonation that we give to words when we are speaking; it’s the rhythm and beat of how we talk. Prosody is a word that reminds me a bit of melody, or rhapsody; the name one would use to describe the Song of Language. I can’t help but wonder, should I lose my voice entirely, becoming prosody-less – that I’d be falling out of tune, missing the beat; no longer in sync with others.
Kristie Spencer, Associate Professor at the University of Washington’s Department of Speech and Hearing Sciences, used this weighty word when she was addressing her speech-language pathology grad students. The reason I know this is because I was present, having tagged along with my PLS friend, Dave Irvine, who had been invited to speak to Kristie’s class on the challenges of living with dysarthria. I was surprised by my willingness to attend, as speaking in front of an audience is something that I would never choose to do. But I felt compelled to seize the opportunity to speak-up about what it is like to be in the world with only half of a voice.
Dave and I share the same neurologist, and that’s how we initially met. Dave is soft-spoken (even sans PLS), sincere, and has a quiet dignity about him. An activist for the disabled, he is one of the Washington State Ambassadors for the Spastic Paraplegia Foundation. He has been my #1 advocate in promoting this blog, and we have come to rely on each others empathy when the “PLS-blues” come round. Both of us are fortunate in that we are not “victims;” oh, we have our pity-parties, but we’re savvy and seasoned enough to not wallow there for long.
The class was Assessment and Management of Neurologic Motor Speech Disorders; a two-year intensive course, that is part academic, part working clinical rotations in the UW’s Speech and Hearing Clinic. In the course’s second year, students add to their expertise by branching-out to hospitals, rehab centers, schools and private practices in the greater Seattle area. Kudos to Professor Spencer’s acumen in launching such fine people into the medical world; they offered Dave and I insightful, intelligent questions and comments. I named this post “class” because that’s exactly what they had.
At start of class, Kristie gave each of us an amp and a microphone, and we sat, the three of us, facing the students. (Thanks to Dave’s friend, Greg Mathess, for the photos.)
Since Dave had to leave early, he pretty much held center stage and fielded the questions. His voice is more spastic than mine, and I had so much respect for him as he eloquently spoke, through broken words, of the struggles and insights one encounters when they are no longer adept at using the spoken word.
He shared his experience of living with a voice in the process of decline, and what it is like to be glossed-over and discounted by strangers when they are incapable of understanding his words.
Dave left at break-time, and when the doors once again closed for the last half of class, I unleashed Luc for his social fix – which sent him into heaven . . . so many hands to pet him, so many smells, and so much attention. I didn’t see him for the rest of the class; reportedly, he was snugged amid feet and chairs, ensconced in an orb of academic affection. Must admit to the pride I felt when I blew my whistle for him to “Come,” and “Come” he did. That guy is one awesome dog.
Then it was my turn to talk. It was easy, and I thought about that later; why it was so easy being easy, and figured out that those people – students and Kristie – made me feel welcome; made me feel regarded. I was an equal among them, which I rarely feel when in public anymore.
They really listened to me. I talked, and I said a lot:
I told them that our voices are a gateway to the outer world; through them, we have the power to create an image of how we want others to see us.
I told them that when I’m labile, I watch my body cry and am half-frustrated, half-fascinated that it does so – I’m only doing half of the crying; what’s really behind the flood of emotion is a floundering signal beamed from a faulty brain.
I shared that when PLS hit, the image of what I had thought of as the real Me, scattered in the wind, like so much dust. (A lovely woman asked what image I now had of myself; I can’t recall my exact response, other than “a hip person” and “old woman,” which made me feel arrogant and self-deprecating all in a one-sentenced reply).
I shared with them the philosophy that rescues me from the “heavies;” snapping into Zen here-and-now, I remind myself (continually) that life is flux, passing, nothing staying the same, nothing lasting, all impermanence. I’m left with the knowledge that I am not in control of my life, other than how I respond to what is dumped on my path; nothing for it really, other than live in the present.
I even revealed that I’m not easy to live with; my will is strong (ask my husband), and resents outside opinion. But, that gnarly will has been my anchor and might when the moments get rough.
I told them that even though I have an iPad app that is very capable of speaking for me, it will never replace the lilt, or heft and breadth that I’ve been able to weave into words through my voice.
I shared that, were I forced to choose between losing my voice or the ability to use my legs, I’d suffer in deciding which to choose.
It felt so good to speak out, and yet, there’s so much that I didn’t say, that I wished I had:
I wish I had thanked them for their sincere attention; because that attention redeemed me from a sometimes-felt meekness when out in public.
I wish they knew about the times, when my voice is especially weak and feeble – that on hearing it, I feel diminished, and do battle against seeing myself as a person of little consequence; a weak personality.
And I wished that I had mentioned how imperative it is to be fully alive in these bodies of ours; ’cause, at any given moment, we’re gonna die – Life is going to sneak-up and snuff out our flame.
I would have liked to have asked them – as I’m living with a neurological disorder that is in my face, constantly reminding me of my mortality – wouldn’t they think that would be impetus enough for me to “get my act together?” Strangely, that has not been the case, as I continue to live by sloppy attitudes, unkindness towards others, and fawning self-absorption. How many layers have to be stripped away before we become genuinely kind, sincere and open-hearted?
In my late teens – early 20′s, I read a lot of Carlos Castaneda’s, Don Juan series. I even re-read them in my 30′s. Though I no longer want to be a crow, Don Juan’s philosophy has stayed with me: Life is mysterious and unpredictable, and none of us have any time to indulge in petty self-importance and crappy attitudes. None of us.