Thursday, July 30, 2009

Facing the Fear of Silence

I wish I could say that I had had an intense, transforming spiritual awakening over these past voiceless days: like Moses & the tablets or Skywalker with Yoda. That speechlessness created a new state of awareness or lifted me up to a higher plane or better state of being. MS may be character shaping; but so far it hasn't turned me into a saint.
It happened suddenly--I was sitting with friends in church--happily singing praise songs to God in my decidedly unpraiseworthy voice when my throat constricted--at first I gasped for air and then coughed and choked. This passed, I drank a sip of water and started to sing again---instantly the same thing happened. I gave up on singing and sat for a few minutes. Everyone around me, my church family who keep a careful watch, were aware that I had two coughing/choking fits. But now, in the middle of service, wasn't the time for me to panic. I could still breath--I just couldn't seem to talk.
Now, four days later, the constriction seems to have eased up a bit. I can whisper in chunks of words. What I hope is a first step towards swallowing, talking, and singing again. I was diagnosed with vocal chord (laryngeal) spasms about 5 years ago The doctor said there was no known cure and I needed to be aware that my throat could suddenly close up so that I couldn't breathe. This tidbit of news followed after me like a shadow from the knife edge of a guillitine blade. I have little episodes every now and then where I cough so hard while choking that I pee my pants. I even throw up when it is intense. But, Sunday's onset brought a completely new reality into my life.
For those of you who know me, my love of talking is central to who I am. How do you boss your son around, or answer the phone, or yell at the dog, or chat with a girlfirend when your vocal chords rebel at the slightest whisper. My son and the dog were probably greatly relieved--for me, my already small enclave on the Lost Island of Secondary Progressive MS shrank noticeably. At one time I managed a research center with over 50 people in my immediate area and hundreds more across the campus as well as family, friends, and the people I chatted with on the bus, at the beauty parlor, and around town. Social interaction gave meaning to my life. When this illness finally eroded my physical abilities to the point that I had to give up the amazing job, active volunteering, driving, and bopping around town; my world reduced to the four walls of my mobile home.
I am learning, the process of acceptance is endless, to find purpose and meaning on this much smaller stage. This blog, the phone, and visitors keep me sane. With the sudden impact of a sonic boom, I lost my voice. How will I eat the sour milk that was poured on my raisin bran. With hands that don't work well, legs that are weak, and deep fatigue--this cloaking silence feels like too much.
Thursday comes with a whisper. I can swallow my pills without chopping or crushing them first. The silence is no where near over-I can only whisper a little and, without warning, my throat will close up and cut off my words and send me into another coughing/choking bender.
The insidious fear monger murmuring in the back of my mind that I might never talk again, I might never share my off-key voice with God, I might never swallow food without a thought. So many unknowns.

1 comment:

Anonymous said...

HELLO SWEET ONE - THANKS FOR YOUR WORDS, EVEN IF WRITTEN, NOT SPOKEN. YOUR WORDS ARE EXPRESSIVE AND HELP ME TO UNDERSTAND AND EMPATHISE and because you write so well they also promote community and therefore do great good in my opinion.
I love you.
M.