The Need for Testing by Susan Reagan

       For five long years I was under the impression that I had Spasmodic Dysphonia (SD).  During that time period I learned all there was to know about the disorder; theories regarding the onset, treatment options, surgical options, speech therapy and found out firsthand about the deep psychological damage that profound voice loss can do to the strongest, most confident and educated individual.  The mind twisting effects of voice loss can only truly be understood when you are the one experiencing the loss.  There is not enough empathy from even the kindest person to comprehend what it is like to be voiceless in a speaking world. 

          I surrounded myself with the SD community, joined the National Spasmodic Dysphonia Association and even became a support group leader.  I saw no less than five otolaryngologist, three speech and language pathologists, a neurologist and an endocrinologist.  I received enough Botulinum toxin (Botox) injected into my larynx to freeze countless middle aged faces.  I spent a combined total of several months in the “breathy period” not being able to voice beyond a faint whisper in my ongoing desperate quest to regain some shred of my voice with the use of Botox.  

          With each failed attempt the depression, the anger, fear, panic, despair worsened.  There were hours, days, weeks, months and eventually years of spiraling into a deep situational depression.  By this point I was feeling utterly trapped by my inability to produce voice, I was panicked about how I would live the rest of my life without the ability to speak.  How would I secure meaningful employment that provided a compensatory wage that was equal to my education and professional experience?  How would I make the world aware that I was locked inside screaming to get out?

          At present time there is no definitive diagnostic testing used to determine if SD is indeed the correct diagnosis.  I am not versed in the current research being performed; I can only tell you what it was like to live with the wrong diagnosis for almost 5 years.  There were times during this period that suicide was a serious consideration.   Being a normally sane person and knowing the difference between wanting to be dead and actually devising an exit strategy I struggled to not have thoughts of ending my life.   Thinking of ending my life caused greater mental pain than actually living with my present vocal condition.   One day I made the choice to stop being depressed; I fought to shower and groom myself daily, fought to exercise and fought to live.   

            I am grateful to all of the practitioners that were a part of my journey, as with each encounter I learned more and more about me, my voice and my strength in this never ending search to become whole once again.  If I had ended this search or accepted a fate of being near mute, I would have found a way to survive but would have always been nagged by the, “what ifs”. 

       If there was a definitive diagnostic test to determine if SD is present I would have never had to psychologically suffer so greatly and for such a long time.  If a test existed a true diagnosis could have determined years prior and I could have received the correct treatments.  Several benefits would be created by having a definitive diagnostic test; cost savings for insurance companies, out of pocket savings for the patient and a reduction in the pain and suffering to the patient. 

          This account is written for those that do not have to ability to express themselves as I do, for those that have given up and for those that do not have the will to fight.  I was lucky enough to have the means and the will to keep seeking out answers, to keep asking why I could not speak when others had wild success with the widely accepted treatment, why did I have so much pain in my throat, neck and shoulders when others did not report similar experiences.    If a definitive diagnostic test existed life could have been so much different for me and for so many others.   

 

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.

Vocal Attacker by Susan Reagan

Having what I thought to be a non-curable and in my case non treatable case of spasmodic dysphonia was like having a terminal illness without the luxury of actually dying and being put out of my misery.

For five long years almost every word except for intermittent breaks in voicing, speaking was like regurgitating broken glass feeling pain with every word. With those blades of unforgiving deadly glass; cutting, severing and destroying my past.

The anxiety, the anguish, the madness, the pain, every word, every sentence and every hour of every day. Retreating, falling, recoiling back trying to ease away from my vocal attacker.

The more I wanted to speak the harder I tried the more I tightened up constricting my natural voice and keeping my words locked deep inside. Literally like being bound and gagged frozen in time and frightened to death. Hands choking me and fingers squeezing tight around my neck.

 Too much to comprehend and too much destruction to cope wondering why my voice shut down and was literally broken

Om or OMG! By Susan Reagan

Approximately 5 years ago my life was changed forever with the onset of a rare neurological condition called Spasmodic Dysphonia or SD for short. People with SD have the sensation of being strangled when trying to speak. Each word is a tremendous effort to produce. The disorder comes in three varieties; abductor, adductor and mixed variety. The disorder causes either breathiness or a tightness that is experienced when trying to speak. The exact cause of SD remains unknown to medical researchers but there are some commonalities that sufferers report during the time of onset; such as the presence of some type of infection and a great deal of personal or professional stress. Some refer to the onset of this disorder as the day their voice broke.

The most commonly used treatment to provide people with relief from the physical effects of SD is Botox or Botulin Toxin injected into the larynx. The use of Botox in this condition stops the spams from occurring and in many cases allows the person to speak in a clear and fluent voice. The effects of the injections are only temporary so the procedure needs to be repeated every few months and duration differs from person to person. As you may imagine the injections are very stressful to endure and in many cases range from uncomfortable to painful. But the anxiety associated with getting the injections is even more difficult to deal with than the actual pain. The thought of having long needles going through your neck then through the esophageal cartilage and then into the delicate folds of the larynx would make the toughest person feel uneasy. Many people report taking a mild anti-anxiety medication to achieve a reduction in their anxiety level making it easier to cope with the injection

Not being comfortable with taking an anti-anxiety medication or benzodiazepine I will always opt for the natural alternative. The possible side effects of taking anti-anxiety medication include but are not limited to sleepiness, problems with inhalation and a swelling of the lips and closing of the throat. The natural alternative of choice in this case is yoga which has no known negative side-affects.

The practice of Vinyasa Flow Yoga, which synchronizes breath to movement, has taught me to control the level of anxiety that is experienced during these injections. They otolaryngologist aka ear, nose and throat doctor that treats me for this condition is fully aware and understanding of my thoughts and ideas as they relate to the use of medical intervention. He is respectful of my point of view and allows me the time to focus my breathing and mentally recreate the same level of relaxation as achieved during savasana or corpse pose in my weekly yoga practice. By mentally recreating the same feeling of total relaxation, security, warmth and full body awareness the pain and discomfort of the injections is not even perceived. Therefore a memory of the discomfort is not created which also means there is no recall of the experience. When recalling the experience of being injected the sensation of complete relaxation replaces an otherwise unpleasant experience.

Using yoga to control anxiety is not a quick fix. Attending one yoga class will not provide you with the needed tools and understanding to achieve the needed level of mind control to override pain and discomfort. But rather the ongoing study and practice of yoga which brings a greater awareness of self and surroundings will gradually provide the tools needed to override the pain.

 

Real Life SD, Unemployment by Susan Reagan

It is desperately hard to wake up each day and have no purpose, no job and few prospects.  Searching for a job can be one of the most heartbreaking and demeaning processes a human being can live through.  In a good economy it can take the average person a while to find suitable employment but compound this challenge with a recession and the complications of having a condition like Spasmodic Dysphonia or any vocal limitation and the odds seem insurmountable.   

Making the right connections and securing the right fit, hopefully finding a position that will prove to be long term is the biggest challenge.  In a tough economy we sometimes forget about the more human side of employment such as personal satisfaction, feeling a sense of achievement and having an opportunity for advancement; all while being compensated fairly and not just settling for a paycheck. 

At one point in my search I had become so physically tired when sitting down to send out resumes.  Intellectually I knew the overwhelming sense of depression was temporary but at times it was very hard to overcome.  This sense of depression came from the internal conflict, a cognitive dissonance that was created when applying for jobs that clearly stated “excellent verbal skills required”, knowing that, at times talking on a phone would be near impossible as well as having face-to-face verbal interactions.   Making presentations in front of large groups would be not only painful but aggravating for the listener; the sense of inadequacy can be debilitating.

One of the lessons learned along the way was to stay true to your inherent nature and not try to jam a square peg into a round hole.  My inherent nature is to be very outgoing, extroverted, gregarious and engaging.   Why would I ever think that I would be happy trying to seek long-term meaningful employment outside of the bounds of my natural gifts and persuasions.   The counselor assigned to my case from the Pennsylvania Office of Vocational Rehabilitation had to remind me of that fact.  Her main concern was not only helping me to find a job to pay the bills but to find employment that was inherent to my nature; to find employment that would make me truly happy, offer a sense of satisfaction and fulfillment.  I could never be a person that sits behind a desk with limited human interaction and contact and she reminded me of that fact after only knowing me for a very short period of time.

Her strategy for me is to emphasize my abilities and de-emphasize my inabilities.  Focus on the strengths, experience and education instead of getting mired down into the ever present thought pattern of having vocal limitations.   Not to betray my inherent nature and shrink away from careers paths that are of interest but to rather seek those roles out while making masterful use of adaptive equipment to accomplish the goals of the sought-after position.

The job hunting process has several separate and distinct steps that need to be executed properly.  The first of which is presenting a professional and concise resume that lets potential employers know your accomplishments and achievements, let’s say your resume will leap the first hurdle and make it into human hands.  A potential employer likes what they see while reading your resume and the phone rings; how do you handle this next barrier, YOUR VOICE?  There are several options to manage this hurdle, take control of the interaction times when you know your voice will be at its strongest.  Plan your phone interactions wisely by choosing a place that will have limited or no background noise therefore limiting the amount of strain required to project you voice.  Include a mention in your cover letter about setting up phone interactions via email allowing you to control the interactions to ensure your best voice is present.  

When meeting with a potential employer speak with confidence, conviction and be well studied in your subject matter.   Do not apologize for the condition of your voice; maintain eye contact and a commanding posture with strong body language.  With so many people looking for work these days how can someone with Spasmodic Dysphonia prove they are the right person for the job?  For each person that answers will be different: one way to accomplish this goal is to make sure WHAT you say is more important than HOW you say it.

Yes the job search can be exhausting and depressing at times.  One key way to avoid depression is to always be cresting a wave.  Have several applications out there at any given moment in time; do not rely on one golden opportunity that could disappear in the blink of an eye.   Explore all options with intensity, interest and conviction.   Have persistence, perseverance and utilize all resources that are available to assist you in your job search.   Being unemployed is a temporary state of existence that can seem like an eternity. 

 

Real Life SD: Divorce by Susan Reagan

Contemplating and executing a divorce can be one of the most heart wrenching and difficult things anyone has to live through. Divorce changes lives and can destroy some people while giving a rebirth to others. According to the Holmes and Rahe stress scale divorce is the number two stressor an adult can experience with a value of 75 “Life Change Units”. This life stressor is only preceded by the death of a spouse with a point value of 100 points. Recent medical research indicates that stress affects our health, wellness and our ability to fight disease. Making the decision to file for a divorce is hard for everyone, but add the factor of having a disability into the mix and it becomes exponentially more difficult.

            When any healthy person with all of their physical abilities intact start to plan their exit strategy there are so many things to think about, such as; where to live after the divorce, how to divide the marital assets, can I afford to live on my own, how will the children be affected, what will happen to the pets? Will the results be worth the pain of the experience? One of the most challenging aspects of contemplating a divorce is finding the strength to navigate through the changes that will occur. Humans avoid change and discomfort even if it to our benefit, as the known, even if it is detrimental to our wellbeing is preferred to the unknown.

 People with Spasmodic Dysphonia are not exempt to life’s problems, pulling the SD card does not give you a free pass from dealing with real life issues such as divorce. Having SD makes life more challenging in general and will make living through a potential divorce that much harder. The normal fears of going through a divorce as stated above exist for the person with SD but there are added components and considerations to make. Such as; how will I get Botox injections once I lose my health insurance, who will be my voice when needed, who will support me if I should not be able to work due to my disability. The fears and concerns are real and gripping as we all know life with SD is difficult.

            To stay or not to stay, that is the question. It has been said that life is fleeting and we are here for but a moment. Quite to the contrary, life is too long to be lived in misery. Just because a person suffers with a physical disability does not mean they have to stay in an unhappy marriage. The benefits of having security and surety as opposed to facing the great unknown is a decision that each person will have to make. Each person will have to ask themselves, is the daily dread that one faces when married to the wrong person worth the supposed security. Just because a person has a physical limitation does not mean they have to tolerate a less than optimal situation. Having a disorder like SD will definitely alter your perception of self, it changes the way you relate to others and it can change the choices you make in life. Don’t let SD take away your dignity by making the choice to stay in a bad relationship for fear of having to deal with SD alone

Dear SD by Susan Reagan

 You came to my live almost 5 years ago this coming year. You have wreaked havoc on my existence and almost allowed me to take my own life. I cried with such pain, screamed at God in my mangled voice and begged for a return to what once was. I wondered what my nonexistent future would bring after you destroyed my career. How would I live and get along in the speaking world?  Who would ever love me and find me attractive in any way?  What type of job would I find regardless of my endless number of college degrees?   It’s not bad enough I have you as my friend but the treatments don't help me and the pain of speaking hurts my face, shoulders and neck by the end of each day.  But let me tell you this sweet friend.         I WILL WIN!

 

 You will not win over me. Your destructive power is no match for my spirit and my resilient soul. My will and my strength you won't ever be allowed to change. I am who I am and that will never be altered. I allowed you for a short period of time to change me, make me withdraw and shrink from the world. But I tell you this that was never my style. I will kick your ass and put you in your place. I will fight each day to greet all that I meet with a kind word, smile and a warm heart even if I sound like a monster. I will continue to touch the lives of others through all that I do, teaching and giving to those in need of a boost. I will use all that you taught me about determination and the human will to survive. I will take all those lessons and share them with those that think they cannot live because of what you did.

 

Real Life SD: Dating by Susan Reagan

 How do I look? Gosh, I hope he/she likes me! Wonder if I have bad breath, let me check! Maybe I should change my outfit? I am just not going! What if we have nothing to say? Ugh! I hate dating. You guessed it, add Spasmodic Dysphonia to the mix the anxiety becomes even greater as well as the fear of rejection due to the disorder. One of the key elements that mark SD is having a mind full of words and ideas to express but limited ability to do so clearly through the use of voice. Wanting to speak, to interact and to emotionally connect is so difficult when your voice will not cooperate.

 Putting yourself out there in a dating situation strikes fear in the hearts of many as you could be set up for rejection, judgment and even disappointment. Let’s look at how having SD or any vocal disorder affects our ability to connect with others in the name of romance. For those of us that have a vocal disorder, out sense of self in many cases can become compromised and our self-perception can become skewed. We start to see ourselves not as we truly are but as others view us; which is diminished in some way.

 Most people do not realize how devastating losing your voice is and that it is commonplace to shrink from social settings when this occurs. Being attractive having a great smile and being outgoing is helpful but can only do so much before your voice loss affects your ability to relate to others. In some cases the effort of speaking comes with a good deal of visible straining to force the words out so even with the added perk of being cute a voice disorder could scare a potential suitor away. People react poorly to a garbled voice regardless of what that voice is saying.

 One person reported joining an online dating website in hopes of making a love connection and did not receive any responses due to the mention of the disorder. Once she removed the reference to SD her responses increased. Which leads us to the first question, When do you disclose a vocal disorder when dating in cyber space? How do you know when to broach the topic? It could be off putting to tell someone “I don’t talk on the phone.” And then not go into detail. One of the possible modern day solutions is to just text.

 So how can we overcome these barriers?

 1. Firstly, some good old fashioned positive thinking. If a person with a vocal disorder views themself as being worthy of love and acceptance then others will follow that lead. If we feel unworthy, that is the message we share with the world, and the world will follow that lead as well.

 2. Provide a non-threatening explanation of the disorder. Put your potential date at ease with an opportunity to ask any questions they may lessen the fear of the unknown.

 3. If we perceive our disorder as the end of the world others will follow our lead and feel the same. The key is to be yourself and not let the disorder define you. Being able to manage this task also depends on where you are in the process of acceptance as it relates to the disorder. Trying to date in the early onset of the disorder can be difficult as the natural progression of depression occurs and eventually leads to acceptance.

 The following are some practical tips to dating with a SD.

• Avoid loud bars or restaurants. Pick an environment that will help the communication effort by allowing your date to hear you better.

• If you are comfortable enough to sit up close that will help the situation as well as make the date cozy and intimate.

• Some have offered that having a glass of wine or a cocktail will help to relax the vocal cords making speech less difficult.

• Focus on your ability to be a great listener, which is one of the gifts of SD.   People love to speak about themselves and listening intently to your date is very alluring. This skill could actually lead to a very long and fruitful discussion opening doors to topics that may have been missed.

• Remember dating should be fun. Don’t forget your sense of whimsy and excitement still exists.

 Dating with Spasmodic Dysphonia or any vocal disorder does not have to be a painful ordeal. It is all about your sense of self, your ability to see beyond your vocal disorder and your openness to share with the world. It is easy to get discouraged in dating and the pursuit of love in any condition... Having a vocal disorder should never make a person feel unworthy of experiencing this great joy in life.