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.