Choked Up in the True Sense
If I had one wish along this amazing journey of living with spasmodic Dysphonia, it would be to shed some light about living with this strange disorder with the general public. I also love to help comfort others as they grapple with their diagnosis and whether or not to endure the "knife in the throat" to have a better voice.
The "SD Diagnosis" is much like menopause. It's a retrospective diagnosis and hard for most of us to pinpoint the time it started. It's similar in its nonlinear roller coaster ride of a range of emotions and feelings. Anger, frustration, tears. Repetitive Nightmare Dreams where you are in danger and can't scream.
I wish I had kept a journal! What I recall is a gradual gravelliness to my voice. I sang in the church choir for 30 years and suddenly, my perfect pitch was gone. I could think the notes (still do!) but could no longer hit them. The cracking, spasm seeped into my normal voice. After a long drawn out workup for reflux, ENT, Primary care shaking their heads, I read Diane Rehm's book, FINDING MY VOICE. There was my AHA moment. I researched, took the train from New Hampshire to Mass General and had my hunch validated with the fiberoptic crystal ball down my gullet. I found that hard to swallow!
Joni Mitchell's song haunts me: "Don't it always seem to go that you don't know what you've got till it's gone. They paved paradise, put in a parking lot." Can't sing the song any longer but I can hum it and whistle it in my head. When I hear young people abusing their voice, screaming loudly, I think, don't take it for granted. It's like hearing a ghost, listening to old home movies. I'm essentially the same person but my voice markedly different as if it belonged to someone else. In silent songs, our souls sing through our hearts. Silence is Golden but we can feel all but Rich.
I'm a Family Nurse Practitioner so I use my voice constantly. My patients tell me I'm a rare gem in our bustling chaotic healthcare system because I honestly listen to them and let them do much of the talking. Perhaps in my own illness, I'm a better healer to self and others.
I am blessed to have a sense of humor. This has made the path much easier. I have long thought of T-shirts as fundraisers for SD to my retorts in my head when well-meaning folks say the wrong things. I'm now numb to the barrage of comments. The anger has turned to laughter and I've learned to laugh at myself lovingly. I'm a tougher bird thanks to SD. I seem to have sprouted a gentler heart at my center. I think before I speak and make sure my words are well-worth the effort it takes to splurt them out on the tough days. Thanks to Botox, many are unaware most of the time that I indeed am the proud owner of a rare voice disorder.
I'm sure others can relate to these comments and could add more lines to our T-shirts:
"No, it doesn't hurt".
"Nope, no cure, but thank God for Botox!"
"Yes, it's very tiring"
"No, I'm not trying to imitate Woody Woodpecker or the RoadRunner"
"No it's not heartburn, but Yes, it can make your heart burn in other ways."
"No, I don't have a cold"
"No, I didn't get it from yelling at my kids"
"No, my family doesn't love it that I can't talk or yell."
"No, I'm not nervous . . . or about to cry. or a smoker. . . or a boozer. . . or having a sex change operation"
"It hurts when you hang up on me when I can't speak loudly enough for you to hear me. Listen Up!"
"No, my favorite perfume isn't SPEAKEASY"
"No, I don't get Botox anywhere else and yes, sometimes I wish my doc had Parkinson's so he'd wiggle his hands and touch up my wrinkles at the same time!"
So now, almost 10 years into the journey, I can "say" SD has transformed me in ways that I could never see coming. It's not all valley, there are indeed some peaks despite the hardships. May you love yourself in the journey and be joyous in the discove.
Personal Experiences
Priscilla Merrill.
