Only those willing to go too far will know how far they can go.

Aria: My solo vocal journey

It has been 23 years since the car accident on a road in Hampton Township, PA. At the age of 16, I was a passenger in a one car accident that caused me to sustain a severe traumatic brain injury (TBI). Due to the level of neurological damage to my brain, I had a post-traumatic seizure at the scene of the accident. I was Life-Flighted to Allegheny General Hospital and was comatose for six weeks. The doctors’ prognosis was that I would be bedridden for life and there was not much chance of any significant recovery and that it was highly unlikely that I would graduate from high school without major assistance.  Higher education, they said, was out of the question.

My brainstem, the delicate neurological component responsible for life sustaining processes, twisted and stretched, causing the right hemisphere of my brain to hit the inside of my skull. The neurological damage created by the TBI resulted in numerous physical impairments, but the most psychologically draining was my inability to speak. This essay recounts my endless journey to reclaim my voice.

The innate ability to communicate thoughts, emotions and simple daily life experiences was taken from me in a matter of seconds. My tongue lay paralyzed in my mouth. I could not talk, eat, or drink. A feeding tube was surgically implanted into my stomach to provide daily nourishment.

A person never consciously thinks about how words are formed and how intricate the process of speaking really is. We unconsciously vocalize thoughts: tongues instinctively move and articulate; vocal cords vibrate with sufficient breath support, combining sounds and syllables, forming words into coherent sentences. My first attempt at speaking, however, wasn’t as effortless. Rational thoughts accumulated in my mind, eventually leading me to verbally express myself, but the only sound I was capable of producing was an incoherent, monotone noise. Only vocalized air, no articulation.

Regardless of whether or not anyone could understand what I was saying, I spoke indifferent to my incoherency. The thoughts in my head were clear. I knew what I was saying. Unfortunately, my audience did not have insight to the thoughts in my mind.

At the Rehabilitation Institute of Pittsburgh (RIP), where I was sent for rehabilitation after my hospitalization, I attended a series of daily therapy sessions, which included speech therapy. My speech therapist was Karen, a young woman who at one time babysat my sister and me. Starting with the fundamentals, Karen demonstrated numerous exercises I was to practice on a regular basis, basic motor functions: how to initiate a swallow to prevent drooling, how to move food around in my mouth and how to pucker my lips, only to name a few. All of which I was initially unable to do. She also showed me how to strengthen my tongue using a tongue depressor, in order to “reteach” my tongue how to move. The goal was to create enough stimuli in the hope of regenerating and reconnecting the neurological pathways that had been damaged by the TBI.

The first time Karen lifted my tongue with a tongue depressor, it only rose a few centimeters, as a piercing tension shot through my tongue. The muscle tone was so excessive that it forcibly resisted the depressor as my tongue pushed the depressor downward. The pain was unendurable because my tongue lay in my mouth like a fat piece of raw meat. Ironically, however, I never really thought about the huge implications losing the ability to speak would have on my life or how it would be a life-long struggle. After the accident, I was removed from myself and my situation.

During one of our speech therapy sessions, Karen placed a mirror in front of me to demonstrate how to do these exercises correctly. As soon as I saw my reflection, I started to cry hysterically. Who was this girl? She had abandoned any remote resemblance to the likeness of the girl I once was. Blue eyes tinted with a glassy haze, skin was deathly pale and the right side of her head had been shaved. I immediately began to cry uncontrollably and was truly disoriented.

I spent the rest of that day crying, although the next day I acted as though nothing had ever happened.

I was like a child. My life had been transformed by something I couldn’t remember. The only physical proof I had that the car accident ever happened was the present life I now found myself living, but unless I wanted to live the rest of my life as a victim, the only option I had was to get better — focusing all my thoughts and energy towards recovery.

Initially, I spent no time dwelling on my losses. I allowed nothing to impede my progress, including grief. This was my only defense. I couldn’t erase time. The accident was behind me. It was a reality. The only alternative I had was to try to reassemble my life the best I could. Unfortunately, my inability to initially grieve over these losses would one day unexpectedly resurface.

Before the feeding tube could be removed, I had to gain enough strength to swallow properly without choking. I had to be eating a specific amount of food per day for five consecutive days. It didn’t matter what I ate — I was overwhelmed with an endless supply of chocolate shakes!

Standing in front of an X-ray machine, I had to swallow a spoonful of liquid barium. The barium was placed on my stationary tongue. I had to pump my tongue back and forth, back and forth for several minutes before I was finally able to initiate a swallow. I began eating the next day.

My first taste of real food in two months was puréed. It looked like baby food, but I didn’t care, as long as I was eating. My taste buds were ecstatic. Slowly progressing from eating puréed food, to soft food (i.e. Jell-O, pudding and ice-cream), I advanced to solid foods. Karen and my mother took turns feeding me, until I could finally eat on my own.

I lived at RIP for four months. Everyday at the Institute seemed to be a continuation of the previous day. Time slipped by; it was lost to me.

When I returned to high school, I started back during the middle of my junior year. At school, one period a day was devoted to continuing speech therapy. During my speech therapy sessions, I continued practicing the tongue exercises I had been given at the Institute. The tension in my tongue lessened, little by little, but the progress was very slow.

My speech therapist in high school, Mary Ann gave me a notebook of exercises to practice daily. I did this “homework” everyday and over time the pain in my tongue lessened until I could raise, still using a tongue depressor, my tongue higher and higher still. With time, I was able to achieve minimal strength and flexibility so I could slightly lift my tongue without the assistance of a tongue depressor. This seemingly meager accomplishment was encouraging. With the assistance provided in school, I began to learn the proper lip movement and tongue placement in order to form vowel and constant sounds, forming words into sentences.

During this time, I spent a lot of time on the road, traveling back and forth from my home in Richland Township, PA (approximately twenty minutes north of Pittsburgh) to the Cleft Palate Center in Oakland, a dental center affiliated with the University of Pittsburgh that specializes in helping to correct speech impairments. I was evaluated by the center and required to undergo a variety of different tests.

One of these evaluative tests is instilled in my memory, the nasoendoscopy. A long tube with a tiny camera attached to its end was stuck up my nostrils. One side at a time, the tube slowly passed through my nasal cavity until it reached the back of my throat, allowing the doctor to view the movement of my pharyngeal flap (the fleshy mechanism in the back of the throat which directs air through the mouth) to accurately assess its degree of mobility in order to establish an appropriate course of action.

The pounding of my heart increased as the tube was inserted and gradually traveled through my already allergy inflamed nasal cavities — the pressure brought tears to my eyes. The doctor asked me to speak, but due to obstruction it was extremely difficult. As I vocalized air, my pharyngeal flap wouldn’t move. I concentrated and willed it to move, but it was useless. No matter how strenuously I focused, no movement could be seen it my pharyngeal flap—it wouldn’t budge.

It was decided that the best course of action would be to try a palatal lift, in hopes that it would stimulate my pharyngeal flap and cause it to involuntarily move. A palatal lift is an oral appliance, which attaches to the teeth and hugs the roof of the mouth like a retainer. The extension on the back of the palatal lift is gradually built up and pushes the pharyngeal flap backwards in order to decrease nasal emissions (i.e. to reduce the nasality in a person’s speech).

The oral appliance did improve the quality of my speech, but a major impediment of wearing the appliance was that it increased the production of saliva in my mouth, making an embarrassing situation even more intolerable. Not only was my involuntary swallow not working, now I had an appliance in my mouth that created even more saliva. Now I had an even greater chance of drooling in public.

* * *

 

There’s an intimate ghost

inside me,

the spirit of my youth

Her image lives in my reflection

I breathe her vitality, but

her soul no longer is mine.

Isolated to only memories of her life,

she exists through me.

Trapped between the solitary walls of my mind,

we share a familiar

dream.

 

* * *

 

A piece of me is

missing, lost

between who I was

and the person

I have become.

Part of me is grieving

for that familiar voice

lost inside of me. Her voice

grows fainter

everyday.

Unsure of where she has gone

my tears have dried cold

hardened in the shadows of yesterday.

 

* * *

During this seemingly stagnant time, I began music therapy at my mother’s insistence. I traveled to Pittsburgh one afternoon a week to practice with my music therapist, Linda Sanders. The TBI had drastically altered my speaking voice. My diaphragm had lost its ability support my breath. It was necessary for me to pause between words in order to acquire enough breath to finish a sentence. All the air escaped through my nose. I always sounded breathless like I had just run a marathon.

Music therapy helped me to reestablish control of my diaphragm. Mrs. Sanders instructed me to “push my stomach out; fill [my] lungs front, back, side to side; keep [my] shoulders down; center [my] body…” using imagery to focus on a point and blow air through puckered lips in sync with a metronome.

The goal was to gradually increase the number of beats the metronome clicked, sustaining my breath until I eventually ran out of air. I found this process to be much more difficult than Mrs. Sanders made it sound.

Also during these hour-long sessions, Mrs. Sanders played the piano, while I sang up and down chromatic scales, sometimes singing an occasional song. Most of the time, my voice was off-key because my soprano singing voice had been replaced with a lower, unrecognizable, monotoned voice.

This noticeable difference in my inability to sing on-key with the piano provoked resentment, causing me to despise my weekly excursions to music therapy. I felt these sessions were useless. The tone and quality of my voice was not improving. Nonetheless, my mother continually dragged me, despite my constant protest.

Through the years, however, I have recognized the insurmountable benefits of music therapy. It has proven to be an extremely vital asset in helping to correct the unnatural monotone quality of my voice. It was one of the most beneficial therapies I have had, helping to recreate my “normal” speaking voice.

After graduating from high school in 1991, I continued my education at West Virginia Wesleyan College, while also working on speech therapy, trying to make the best of my palatal lift. I saw a speech therapist one day a week (although she was difficult to find in the small town of Buckhannon, WV). I even maintained a strict practice regime, diligently practicing everyday — well, almost every day — in addition to the daily academic classes I attended. Continuing to press on, I prayed that one day a better alternative would manifest.

It was during my sophomore year at college that my prayer was answered. Almost three years had passed since the palatal lift had been initially constructed. The constant pressure and resistance of my pharyngeal flap on the palatal lift caused it to break. What seemed at the time to be a great misfortune, turned into a greater opportunity.

The Cleft Palate Center notified Dr. Hurwitz, a plastic, reconstructive and cosmetic surgeon, asking for his opinion for a better alternative to the palatal lift. He suggested we should try a pharyngeal flap surgical procedure. Dr. Hurwitz, reputed as being the “best” surgeon east of the Mississippi, specializing in pharyngeal flap reconstructive surgery agreed to perform the surgery. However, before the surgery could be performed, I had to undergo more tests, including the dreaded nasaloscomy. Despite my apprehension, I managed to persevere, realizing that this might be the life-altering prayer that I had been patiently waiting for.

The surgery was scheduled for the summer of 1993. A simple explanation of this complicated procedure is the pharyngeal flap is lifted backwards and surgically attached to the back of the throat, thereby reducing nasal emissions. Recovery from this surgery was extremely painful. My throat was inflamed and swollen. Initially, the swollen area reduced the amount of escaping air through my nose and my speech greatly improved. However, as time wore on, the swelling lessened and the nasality gradually returned.

While the surgery helped to improve my overall speech intelligibility, in order for a substantial change to occur all my spare time had to be devoted towards increasing the rate and improving the intelligibility of my speech, increasing my determination towards my never-ending struggle for coherency.

I went back to The Cleft Palate Center in June of 1995, for a pharyngeal flap revision. Dr. Hurwitz’s attention was focused on tightening up the pharyngeal flap, making the spaces between it smaller to further reduce nasality. I was very optimistic.

Setting aside time in the mornings, I practiced my speech therapy exercises and I spent the afternoons practicing music therapy. My goal was to attain enough clarity in my speech so a stranger would be able to understand me, without making an obscure face.

However, the combined practicing speech and music therapy only seemed to help for so long and then I felt I had reached a plateau. I felt as though not much else could be done. A year after my second surgery, although my speech was continuing to improve, I felt I had reached an impasse, a feeling of emptiness, wondering what was the purpose? Something was missing inside me. Again, I was lost. I needed to find another option to explore to get me to my goal of speech clarity.

For years my father had been trying to get me to see a chiropractor, believing that it would help in my recovery, both physically and cognitively. I was quite hesitant at first as I did not see the benefit in a spinal/neck manipulation. However, one day while I was living in Chicago and talked with my Aunt Barbara about my fears, she reassured me of its validity. The next week, I scheduled an appointment with a chiropractor. Through reassurance, I was able to go past my fears and it was a life-altering decision. The actual manipulation itself was in-fact and “awwhh” moment. The weekly visits I made (and still make) to the chiropractor not only helped my physical well-being but it also created an inner, mental well-being. It was like with each twist and turn of my neck I could “feel” my brain begin to heal itself. Undoubtedly, to me, chiropractic care has help to improve the quality of my life and I believe it is a life-giving force.

When conventional medicine seems to be at its end, alternative medicine was another beneficial route to for me to pursue. The manipulation of my spine/neck has not only reduced my pain considerably, but it has also given me a greater range of motion and neck turning radius. It was the next logical step that allowed me to move beyond my recover plateau and it has greatly helped to improve the quality of my speech.

The integration of this second surgery; the persistent practicing of my speech exercises combined with a return to music therapy exercises, and the healing effects of chiropractic care, has allowed me to achieve what I have been dreaming of one day attaining – a so called clarity. I have reestablished a so-called “normalcy” in the quality of my speech. Attaining coherency, I thought, would allow everything else to fall in place. Over the past twenty-three years, I have gone beyond most people’s expectations, except my own. .. It has taken a lot of conscious effort, perseverance, determination to get me to where I am today, but that void has been replaced with a passion for life. Don’t get me wrong there are still plenty of days when I speak and my listeners look at me curiously as if I am deaf or cognitively disabled. However, I am now able to look past their reactions and continue on with my life.

I truly believe that things in life happen for a reason, but it’s up to us to realize our purpose. People often tell me that I was faced with a monumental choice, whether to continue living or just give up. Reflecting on it, however, recovery was never a question of deliberate choice. Recovery was just something I had to do. It is something I still continue to work on.

Comments are closed.