Even though the onset of my voice disorder was in November of 2008 it took some time for the actual diagnosis to be made. My ability to speak was steadily declining without explanation while each doctor gave their best guess as to what was actually was wrong with my voice. Somehow I was still in denial that there was an actual problem and I was holding out for my voice to return back to normal.
I recall finally receiving the diagnosis of Spasmodic Dysphonia (SD) already knowing it was a non-curable neurological based vocal disorder. I was so overwhelmed with emotion bawling my eyes out and paralyzed by fear as to what the future would hold for me. I was sobbing uncontrollably while it felt like my heart was being ripped from my chest. The definitive word had been passed down that indeed there was a problem and there would be no magical return to the past.
The doctor did make sure to give me the phone number to the local SD support group leader. I will never forget sitting in the parking garage of his office choking on my tears making that first life-saving phone call. Surely my words were incomprehensible to her between my mangled voice and my strangled sobbing. Somehow she was still able to understand what I was saying having been in my shoes years before. I felt like my life was over but the simple act of her understanding gave me a glimmer of hope and the realization that my life was not over just changed.
Thursday, January 8, 2015
The First Few Moments (Part Two)
It was a miraculously beautiful late summer’s day in uptown Manhattan the day I found out I was wrongly diagnosed with Spasmodic Dysphonia. Having been granted the opportunity to meet with one of the east coast’s foremost authorities on voice disorders he declared I was one of the lucky ones having Muscle Tension Dysphonia which is a treatable muscular disorder, I staggered blindly through the streets of the city unable to comprehend this new information. This determination was made quickly with a short conversation and a simple but painful manipulation of my larynx.
Life out on the streets of the city seemed to be passing by at a speed that my mind was not able to grasp. My hearing was altered and the ground seemed to have a spongy quality underneath my feet. There were times that evening when I was so completely dumfounded by the news that I did not have SD I literally sat on a curb and stared blindly at whatever it was that was in front of me. There were even a few strangers that had stopped to ask if I was okay to which I responded, “You could never understand how happy I am”. This news was like having been granted a stay of execution. Several hours had passed by the time I realized the sun had set and I should get safely back to my hotel room.
I sat for an additional few hours in the hotel room trying to comprehend this bizarre turn of events. At that time I did the only thing I could think to do, write poetry! The doctor had manually manipulated my larynx back into its normally seated position which restored my voice. I was filled with disbelief and hesitated to share this new information with the people in my world. I was consumed with a foreboding feeling that somehow this turn of events was too good to be true. This new information was to be protected and guarded until I was sure it was real.
I woke up several times that evening to try out my new voice and stared blankly out to the twinkling lights of the city. I was in shock, disbelief and awe. The first order of events once the sun had risen the next day was to make the requisite phone calls to the people that loved and supported me through this epic battle. Of course Mom was first, I felt though somehow I wanted to warn her not to get too excited as there was a gnawing voice inside of me saying this is not going to last and it was too good to be true. Sadly, six days later my larynx had climbed back up into the learned posture and my voice had broken once again.
Life out on the streets of the city seemed to be passing by at a speed that my mind was not able to grasp. My hearing was altered and the ground seemed to have a spongy quality underneath my feet. There were times that evening when I was so completely dumfounded by the news that I did not have SD I literally sat on a curb and stared blindly at whatever it was that was in front of me. There were even a few strangers that had stopped to ask if I was okay to which I responded, “You could never understand how happy I am”. This news was like having been granted a stay of execution. Several hours had passed by the time I realized the sun had set and I should get safely back to my hotel room.
I sat for an additional few hours in the hotel room trying to comprehend this bizarre turn of events. At that time I did the only thing I could think to do, write poetry! The doctor had manually manipulated my larynx back into its normally seated position which restored my voice. I was filled with disbelief and hesitated to share this new information with the people in my world. I was consumed with a foreboding feeling that somehow this turn of events was too good to be true. This new information was to be protected and guarded until I was sure it was real.
I woke up several times that evening to try out my new voice and stared blankly out to the twinkling lights of the city. I was in shock, disbelief and awe. The first order of events once the sun had risen the next day was to make the requisite phone calls to the people that loved and supported me through this epic battle. Of course Mom was first, I felt though somehow I wanted to warn her not to get too excited as there was a gnawing voice inside of me saying this is not going to last and it was too good to be true. Sadly, six days later my larynx had climbed back up into the learned posture and my voice had broken once again.
911, Please State Your Emergency
“Susan, call 911, your father is having a heart attack, HURRY”! Having picked up the phone then clumsily pressing each number cautiously, the bile was rising in my throat from the sheer fear and panic of how my voice would sound when the 911 operator finally answered the call. With shaking hands hearing the sounds from the other room I tried to dial the numbers correctly this time. Feeling the panic mounting around me from the stress and anxiety inherent to the situation I could feel my throat closing knowing that a clear voice would now be impossible. “Hello, this is 911, please state your emergency”.
Waking up in a cold sweat feeling a full on anxiety attack from the nightmare that just played out in my sleep, a panic set in; how would I manage to make a call to 911 during any emergency? Laying there in the middle of the night, heart pounding in my throat the real fear of being confronted with such a call was suddenly looming large, what WOULD happen, how WOULD I manage in a life or death situation? How do you control your voice when your vocal condition is worsened by stress? How do you get your point across in a potentially life or death situation? How do you manage to communicate when you have no voice at all? These are very real concerns for people with a vocal disorder or for people that have completely lost the ability to speak. The fear of calling 911 for people with a vocal disorder can be paralyzing.
According to one 911 dispatch operator there is no formal training that specifically addresses taking calls from people with vocal disorders. Many times if a voice sounds strange that caller is “misdiagnosed” in a way by the dispatch operator. The best way to avoid this misdiagnosis from occurring is to identify your challenge. “Hello, my name is…, I have a vocal impairment and my emergency is.” If no mention is made of a vocal impairment at the beginning of the call it could be all too easy for an incorrect assumption to be made about the caller’s cognition, cognitive function or even a mistaken assumption about being inebriated.
Remember even in a state of emergency be concise, choose your words carefully. Tripping over unneeded words makes you, the caller more frustrated and increases the level of confusion for the dispatch operator. Take comfort in knowing that even if your words are inaudible or incoherent a police officer will be dispatched to the address associated with the number you are calling from (response times will vary depending on your geographical location). State as clearly as possible if an ambulance is required, making your needs known at the onset is critical to getting the proper help you need in a timely manner.
Calling from a landline will assist emergency personnel by giving your exact location negating the need to painstakingly repeat the address you are calling from, but keep in mind that billing address must be the same as the physical location. This option if available could also decrease your level of anxiety. What do you do if a land line does not exist? Cellular phones work as well but will be routed to the police agency of the nearest cell tower if you are away from home.
Another option to ensure people with a vocal impairment are able to access emergency services is through the use of a relay service as used by people with a hearing impairment. These options include the use of a TTY relay service; this service will automatically let the operator know where to dispatch emergency personnel. Voice Carry Over (VCO) for people who are deaf or hard of hearing who communicate by speaking and lastly a Hearing Carry Over (HCO) relay for people with a speech disability.However, relay services are not widely utilized by those with intermittent voice loss for a variety of reasons but could be a helpful option for those people with any voice loss.
According to 911.gov the use of a teletypewriter text telephone device (TTY) has its limitations as well. The technology is old, it is cumbersome and slow. While modern technological advances have greatly improved the quality of life for people with vocal impairments; texting, instant messaging, video chat and email is currently not compatible with 911 services. As public safety answering points (PSAP) implement Next Generation technology the need to relay messages will no longer be necessary as PSAPs will be able to communicate directly with people with communication impairments through text messaging and video relay. However, there is no information provided giving a timeline for these upgrades and changes.
Hopefully you will never need to access 911 services but if the occasion should ever arise keep the following in mind; stay calm, as that is your best bet to maintain a good voice, if you are living in a situation with the potential for an emergency to arise write a script of what you would tell the dispatch operator and then practice that script. Accessing 911 emergency services does not have to create a sense of panic and fear, understanding how the system works and knowing your options will increase the sense of control and independence you have over a potentially life threatening situation.
Waking up in a cold sweat feeling a full on anxiety attack from the nightmare that just played out in my sleep, a panic set in; how would I manage to make a call to 911 during any emergency? Laying there in the middle of the night, heart pounding in my throat the real fear of being confronted with such a call was suddenly looming large, what WOULD happen, how WOULD I manage in a life or death situation? How do you control your voice when your vocal condition is worsened by stress? How do you get your point across in a potentially life or death situation? How do you manage to communicate when you have no voice at all? These are very real concerns for people with a vocal disorder or for people that have completely lost the ability to speak. The fear of calling 911 for people with a vocal disorder can be paralyzing.
According to one 911 dispatch operator there is no formal training that specifically addresses taking calls from people with vocal disorders. Many times if a voice sounds strange that caller is “misdiagnosed” in a way by the dispatch operator. The best way to avoid this misdiagnosis from occurring is to identify your challenge. “Hello, my name is…, I have a vocal impairment and my emergency is.” If no mention is made of a vocal impairment at the beginning of the call it could be all too easy for an incorrect assumption to be made about the caller’s cognition, cognitive function or even a mistaken assumption about being inebriated.
Remember even in a state of emergency be concise, choose your words carefully. Tripping over unneeded words makes you, the caller more frustrated and increases the level of confusion for the dispatch operator. Take comfort in knowing that even if your words are inaudible or incoherent a police officer will be dispatched to the address associated with the number you are calling from (response times will vary depending on your geographical location). State as clearly as possible if an ambulance is required, making your needs known at the onset is critical to getting the proper help you need in a timely manner.
Calling from a landline will assist emergency personnel by giving your exact location negating the need to painstakingly repeat the address you are calling from, but keep in mind that billing address must be the same as the physical location. This option if available could also decrease your level of anxiety. What do you do if a land line does not exist? Cellular phones work as well but will be routed to the police agency of the nearest cell tower if you are away from home.
Another option to ensure people with a vocal impairment are able to access emergency services is through the use of a relay service as used by people with a hearing impairment. These options include the use of a TTY relay service; this service will automatically let the operator know where to dispatch emergency personnel. Voice Carry Over (VCO) for people who are deaf or hard of hearing who communicate by speaking and lastly a Hearing Carry Over (HCO) relay for people with a speech disability.However, relay services are not widely utilized by those with intermittent voice loss for a variety of reasons but could be a helpful option for those people with any voice loss.
According to 911.gov the use of a teletypewriter text telephone device (TTY) has its limitations as well. The technology is old, it is cumbersome and slow. While modern technological advances have greatly improved the quality of life for people with vocal impairments; texting, instant messaging, video chat and email is currently not compatible with 911 services. As public safety answering points (PSAP) implement Next Generation technology the need to relay messages will no longer be necessary as PSAPs will be able to communicate directly with people with communication impairments through text messaging and video relay. However, there is no information provided giving a timeline for these upgrades and changes.
Hopefully you will never need to access 911 services but if the occasion should ever arise keep the following in mind; stay calm, as that is your best bet to maintain a good voice, if you are living in a situation with the potential for an emergency to arise write a script of what you would tell the dispatch operator and then practice that script. Accessing 911 emergency services does not have to create a sense of panic and fear, understanding how the system works and knowing your options will increase the sense of control and independence you have over a potentially life threatening situation.
Nuance of Voice
Subtle raises up or down give the listener a clue of how to interpret the sound.
Prolonged exasperation of one word can change the meaning from banal to profound.
Voice in its full range of verbal expression conveys joy, love, heart ache and depression.
Nothing can come close to meeting its perfection in an attempt at reproduction.
Voice adds warmth and dimensions to other wise literal translation.
Pitch, tone, volume and fluency all create a euphony that is pleasing to the ear.
Rate and speed can create great anticipation, excitement and intrigue.
A hushed whisper in the heat of the moment can send a tingle down a spine.
Voice can change a statement to a question with a tiny hint of inflection.
One thousand thoughts can be conveyed or implied with the use of just one spoken word.
Many people without thought poise to speak and present their message taking for granted this beautiful instrument in its fullest expression.
Prolonged exasperation of one word can change the meaning from banal to profound.
Voice in its full range of verbal expression conveys joy, love, heart ache and depression.
Nothing can come close to meeting its perfection in an attempt at reproduction.
Voice adds warmth and dimensions to other wise literal translation.
Pitch, tone, volume and fluency all create a euphony that is pleasing to the ear.
Rate and speed can create great anticipation, excitement and intrigue.
A hushed whisper in the heat of the moment can send a tingle down a spine.
Voice can change a statement to a question with a tiny hint of inflection.
One thousand thoughts can be conveyed or implied with the use of just one spoken word.
Many people without thought poise to speak and present their message taking for granted this beautiful instrument in its fullest expression.
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