Coping with a Vocal Disability

The inspiration for the presentation came to me one night in NYC at the Beacon Theatre during a Stevie Nicks concert.  My lifelong best friend took me to this concert knowing I needed a night out, needed to laugh and needed to forget what was plaguing me.   Something strange happened that night; the music brought me a message to share with others that are struggling.  

            In NY Penn Station before getting on our train back to New Jersey I grabbed the only paper that was visibly available, which were retail store advertisements.    During the long train ride home the words and thoughts of this presentation came to me and poured from my mind to the pen to the paper.  This presentation shares thoughts and epiphanies that I experienced as a way to cope with not only my disability but with life in general.   Life is hard; and with added complication it seems near impossible. 

            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 and a few other medical conditions.  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.

The onset of SD was in November of 2008.  The next 3-4 years brought thoughts of suicide, severe depression and withdrawal from life.  At the time of onset I had a near 6 figure job in a hostile work environment with a company I was employed with for almost 15 years, I just starting graduate school and was in a difficult marriage.   

            As the 4 years passed the quality of my voice degraded until I literally could not speak.  The ability to initiate speech was gone.  It was painful to speak both emotionally and physically.  So many times I had questioned God, why did this happen to me.   What was going to become of me, how I was going to support myself.  The simplest task of making a phone call was beyond my ability.  I could not even say hello to a stranger or give a simple greeting or salutation.    This was especially hard for me since I was so extroverted and outgoing.   As if this was not enough my father became very ill and had a series of health events occur that changed his life forever.  I found myself a part time care giver to two elderly parents with hearing loss.    Needless to say I hit a low point. 

            The following is how I coped:

1. I did things that made you feel normal.  Pick an activity that you did before you became injured or disabled.  For me that activity was and still is tennis.  On the tennis courts my disability did not exist.  I could feel that familiar success of hitting winning shots and taking a match or two in my favor.   One thing changed, being non-verbal limited my ability to announce the score, call balls in or out and my favorite, screaming out when I would sail a ball out of bounds or commit and unforced error.  But I was able to adapt and find the familiar joy of playing tennis.   This will make a person with a disability feel more normal.  But remember there is a new normal to acknowledge.
2. Eliminate people in your life that deplete your energy.  This can be easier said than done as some of these life-sucking people may be your caregivers or people you rely on to have your basic needs met.  If the person telling you that you will never be able to overcome and accomplish your goals is disposable, get rid of them.  If that person telling you will never reach your goals and you depend on them, make it clear to them you will not tolerate negative thoughts and negative feelings.  Surround yourself with positive people, positive thoughts and positive feelings.
3. Don’t abandon your faith.   My entire relationship with God and religion changed.  It became clear to me to stop questioning God and to accept what was.  The way I prayed changed, from begging for change and healing to accepting the current state of affairs.  On one particularly bad day I screamed at my mother in my mangled voice, to stop wasting time praying.  She had been praying for literally 75 years and her life still, in my opinion stunk.  I also said if there was a God I would have a voice.  My relationship has changed, I have a greater sense of peace and you will have to find your own peace with God, there is no formula. 
4. Dreaming.  In my dreams I am restored, I can speak with no hesitation, no feeling of being strangled and no spasmodic tremor.  In my heart and mind I am a whole person and have not realized that my ability to speak has been altered.   At first I resented dreaming of my former self now I enjoy the visit with my whole self.   But as your disability progresses and becomes your new normal your mind will catch up with reality as demonstrated by one dream I recently had.  In this dream my mother fell to the floor and was visibly hurt and I could not scream for help or get anyone’s attention.  The mind eventually catches up.
5. 5 stages of grieving.  According to Elisabeth Kubler Ross there are 5 stages of grieving.  Denial, Anger, Bargaining, Depression and Acceptance.  These 5 stages apply any loss such as the death of a loved one, the onset of a terminal illness or the onset of a non-life threatening disability.  The time spent in each stage varies for each person and the progression through the 5 stages is not always a clean and linear progression.  You may think that you are over your anger but then a life challenge that will arise (such as my father’s illness) and you return directly back to anger.   I went through all the stages several times.  And acceptance is not a final destination just a stop along the way.
6. Learn as much as you can about resources to facilitate your independence.  Use the internet, join support groups and do your research.  Keep asking questions and looking for resources.  I was dependent on others to order my food in a restaurant, to order a drink at a bar and to make a simple phone call such as making a salon appointment.    I hated and still hate being dependent others so I found a way not to be dependent.  I use adaptive equipment to make myself heard such as using the notes section on my phone to communicate simple messages and an application that will speak for me in quieter settings.  And do have access to a phone application that will text my phone calls when needed  Do not allow yourself to fall into the role of the victim, fight to be as independent as possible. Maintaining the highest level of independence that is possible for your situation will stave off depression and feelings of hopelessness.  
7. Forget about you and serve others.  As I wallowed in my depression, self-pity and hopelessness I read something or saw a meme on Facebook or got a re-tweet from my brother that said to focus on the needs and care of others when you are depressed.   The day he shared this with me was on a cold a dreary October day, the exact day that my father was having a surgical procedure that ultimately failed.  But as I sat waiting the many hours to hear the procedure was completed I took my brother’s advice to heart.  Instead of focusing on MY problems and MY issues and MY disability and MY despair, I turned my focus to a friend’s wife that had been diagnosed with an aggressive form of ovarian cancer on top of having a double mastectomy.    I thought, well how can I help to comfort this person, what would bring value or meaning to this person in such a dismal time in their life’s.  I got the idea of making a “chemo comfort bag”.  A simple idea that was not new or original, so I spend the day searching the web for ideas on what to include in the gift bag.  My motives were totally selfish, but my actions had the desired outcome of taking MY mind off of MY problems.   So I don’t care if you cannot get yourself a glass of water, there is always some out there worse off than you are.  Find those people and make a difference in their life.
8. Take joy in what you CAN do.  This is a pretty simple statement to make and harder to make happen.  What CAN you still do?  What natural gifts do you still have, can you smile at someone to cheer them up, and can you write a compelling story about your own experience?  But what CAN you still do.   I cannot talk well, but I could write, I could still make people laugh even without a voice and I could still hug people in my life.  What CAN you do to make a difference?  You are not without gifts.
9. No one understands!   Guess what, no one has to understand and no one really cares!  My mom would try to talk to her friends about what I was going through and try to gain some comfort from them.  What she found was they made ignorant remarks not knowing what else to say or in my opinion they are really just uninformed.   After just completing my MBA which took 5 years of attending night classes one of her friends said I should get a job doing data entry.    No one will ever understand what you are going through; they will never know what it is like to lay in bed in the middle of the night in total fear and panic on how you will live the rest of your life
10. After a point stop crying in front of people that love and care for you.  There are a couple reasons for this statement; after a point they get tired of comforting you, it gets old.  It makes them feel uncomfortable as they have run out of comforting words and really are at a loss on how to make you feel better. And lastly no matter how devastating your circumstance is you get an allotted period of time to grieve, then people move on with or without you.
11. Don’t apologize for your disability.  I learned this lesson at work one day.  A kindly woman that I encountered while I was trying to sell our services to saw me struggling and saw how difficult and painful it was for me to speak.  I kept apologizing to her, mostly because it really is disturbing to watch me crank out the words and to listen to me.  She said, my child, you have done nothing wrong there is nothing for you to be sorry about.  Be humble in your disability but don’t offer continued apologies.  You have done nothing wrong. 
12. Pray for acceptance not for the past to return.  This kind of relates back to the bargaining stage of the 5 stages of grieving.  There were so many times when I would pray for my voice to return, as there are a lucky few that have had the condition reverse itself or the just symptoms disappear.  I would pray and try to make deals with God begging for the past state of being to return.   Humans hate change and discomfort even if it to our benefit, as the known, even if it was not perfect is preferred to the unknown. 
13. Don’t be afraid of your own ugliness.  In order to speak I have to really wind it all up to get words out and there is a lot of facial grimacing and my eyes slam shut in an effort to use all of my facial muscles to make the simplest comment.  Ugh-ly.   It would be one thing to lose your voice but another thing to look like a monster when you are trying to talk.  I was very attractive when I was younger and my mind is still not aware that I am now middle aged and do not look like a model any more.  Shhh, don’t tell.  You may grunt, make noise, struggle, and grimace and make all kinds of uncontrollable sounds and movements.   It is what it is.   Move on accept it don’t apologize for it but it is okay to use humor to put others at ease.
14. Living in fear and depression.  Everyone always throws around the saying “life is too short” to the contrary, life is too long to be lived in misery.   The pain of depression can be crippling and lifelong if allowed.   There comes a point in life when you wake up and decide that you tired of feeling horrible and you start to make changes for the better.  Changes that will break the depression, panic and fear of having a future.  
15. Looking at your lose as a gift or a rebirth.  I was always able to write and write well, but when I lost my voice my ability to write became exponentially greater.  I am working on changing my career to accommodate my inability to voice and become a professional writer, looking for every opportunity to write whether it was paid or volunteer.   I surrounded myself with people that I wanted to emulate, read all manner of material to achieve this transformation.  I realized that I was too smart and too driven to ever give in and say my life was over.   
16. 20 years from now what will you be saying about how your let your disability change who you are?
17. Write out your story once then let it go.  Sharing my experience and message is very cathartic and healing.  It has helped me to find meaning and make a positive purposeful use out of my suffering. 

 

           

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