Dan and Hannah and Spasmodic Dysphonia (Part 1)

Spasmodic dysphonia (SD) is a voice disorder that makes it difficult for those like Hannah with SD to project their voice, to be easily heard.  She speaks softly and has been dealing with her SD for fourteen years.

Over the years, she has adjusted to its limitations and continues to live a full life as wife, mother, Omi, and friend as well as hairstylist to the elderly.   She is the star of my long running online hiking blog.  Working out regularly at the gym, she spends Tuesdays with me and our grandsons, Owen and Max, plays a mean game of Pickleball, and gets together with friends in twos and threes.

In large groups, she literally loses her voice (i.e., her speaking voice and her identity when her voice is not heard).

But when asked by the speech pathologist what she would do if she were to recover her voice, she tears up and enumerates:

Buck O and M and Omi at Wegman

I could read aloud and sing to our grandchildren without getting light-headed and winded in the first couple of minutes. I could talk to them in the backseat of the car – and be heard from the front seat. 

I could really-really enjoy participating (talking as well as listening) in the few large group parties that we have in our home.  We will still have those parties.

I would like to take back responsibility for my own phone calls – and my part of the phone calls when we talk with the kids and friends on the phone. 

I could/would read my own poetry aloud to others – give it my very own voice – rather than have someone else read it for me. 

My husband does things like calling health insurance companies for me.  I’m still not one who likes to spend time on the phone but when I have to, it would be so cool to have a free-flowing conversation where I’m not always concerned about using the least amount of words – sometimes just to “get the conversation over with.”  Or, having to repeat myself regularly or explain what’s “wrong” with my voice. 

BS5 D and H at tunnel

I could have conversations with my hard of hearing friends/customers (many are because of their age) and know they really understood me – and weren’t just smiling as if they understood.  Which, of course is really sweet.

My husband wouldn’t have to regularly ask me to repeat what I’ve said.

I could order over the counter (e.g., at the deli and at the Subway.)

And then serendipity opens a door to a little hope…

One thought on “Dan and Hannah and Spasmodic Dysphonia (Part 1)

  1. Thank you for sharing this glimpse into SD and its impact on Hannah’s life. I never realized how much I take my voice for granted. Hannah carries this burden with grace and I am on the edge of my seat waiting to hear how this all turns out. Fingers crossed…

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