July 14, 2009 Features

TBI: An Insider's Journey

In 2003 at 16 years old, the author experienced traumatic brain injury as the result of a horseback riding accident and was in a coma for three weeks. This article is her story of finding her way back to life—and to her future career as a speech-language pathologist.

June 14, 2003

I miss Red. This new horse's canter feels lopsided, like each stride is a lumpy, half-hearted attempt at finding a natural rhythm. There is no sense of fluidity. I feel like I've been searching for that kind of natural ease in many aspects of my new life in Rhode Island, not just at my new horseback riding stable. Don't get me wrong—since I moved here from North Carolina six months ago, I have accomplished a lot. I have made some really caring friendships, I have made straight As in my classes and I even have a new boyfriend. What else could a 16-year-old girl want?

For the moment, however, I am uncomfortable on top of this bony beast. Can I change horses for the next half-hour?

After her violent fall, Stephanie was rushed to Hasbro Children's Hospital in Providence, where she was placed on life-support for a week and assessed at Level 3 on the Glasgow Coma. Then she was transferred to Massachusetts General Hospital in Boston.

Early July 2003

Wheelchairs and rolling trays ramble down the hallway of the hospital as faint morning light begins to fill my room. I have been awake for hours. My eyes jerk back and forth rapidly as the nystagmus sets in, dragging my consciousness back into this cyclical nightmare. It never ends. Tearing at the zippered netting wrapped around my bed frame, I peer outside at the world around me. Everything looks sterile through this synthetic cage. Gray stains mimic what used to be my life. Dark shadows creep in the depths of my vision as paranoia consumes me. There must be some way to escape it all.

When will it stop staring? Peering up at the netting over my bed, I watch as a large smiley-face balloon in the corner bounces back and forth. Its gold face looms over me with an overdrawn black smile and rainbow hair. My mother put the balloon in my cage to cheer me up. All I can think about is how to escape its menacing grin. The balloon stares down at me every morning, laughing at my pain. I don't like to look at it because it is government propaganda. Conspiring government agents are trying to lure me into their master plan. This hospital houses an underground regime that top FBI agents can't identify. I know the brain injury story is a ploy to divert my attention from their conspiracy. I know their secrets—and am the only one who understands. I feel isolated and alone. My life is empty—the vacancy is consuming me.

My train of thought breaks as the door swings open and a nurse leans over my bed. She gently opens my cage, which zips only from the outside so I cannot let myself out. My nerves are soothed as she says in a velvety Haitian accent, "Good morning, Stephanie! Do you remember my name?" I stare up at her face in wonder. "Mary," she says, smiling. My anxiety melts as she wraps her arms around my frail body to help me out my bed. She is too friendly and warm to be one of Them. Maybe not everyone is out to get me.

Mary moves my wheelchair to the bathroom and comes in with me. My cheeks burn and my eyes sink as I slip off my pajamas. In the mirror I see the deep, empty caves sunken under my eyes. I can't look at myself like this, not with someone else monitoring me.

They never leave me alone. I take showers as seldom as possible for that reason. Their methodology is simple and conniving, masked with kindness. I play along. The ease with which they try to manipulate me is insulting. Whenever I shower, I am first instructed to sit on a plastic shower seat so I don't slip and crack my head on the tiles. Then, nurses stand next to me and close the door. They watch me. They are always watching me. I close my eyes. The water starts to run. I feel like a Holocaust victim, cowering naked in front of others as I breathe gas into my lungs. I am suffocating. When the shower is over I am not only clean, but I am sterile.

Later I go to the schedule board, a large whiteboard with all of the patients' therapy times written on it. Each of us is responsible for writing down our own rehabilitation appointments. Nurses say that it helps develop our damaged short-term memories, but sometimes I feel that the schedule board is a twisted device used to exploit our weaknesses. My fingers burn and clench the pencil as I scan my schedule chart and try to scratch out letters. My right arm is stiff and heavy from being drained of life for so long. I have heard people say that it is recovering from paralysis. Everything is so difficult. All I can do is continue to practice. One part of myself that I retained after my accident is my ambition—I wonder where the rest of me got lost. I roll my wheelchair back down the hall and an inescapable smog of vulnerability weighs down the air around me. The nurses watch as I continue down the hall, but they do not really see me.

I pass the main nurse's station on my left and see a teenage girl propped up in a wheelchair against a blank wall. Her head slumps and a pool of saliva slowly accumulates on her shoulder as her jaw hangs ajar. From the way that her arms lie lifelessly in her lap, I know immediately that she also was once in a coma. She looks up drowsily and scans my body. Her glazed eyes permeate my skin and silently beg me to help her. I can't help her—I can't even unfasten the straps of this wheelchair to help myself.

A couple of minutes—hours?—later, I have no idea where I am going. Everyone around me looks busy, and I am lost. A nurse looks down at me and asks me what is written on the schedule board. I peer at my day's schedule and see "SLP" scribbled in the next box—speech.

I enter the speech pathology room without even knowing why I need to be here. Every time I talk to my parents or a nurse, they act like they do not hear me. I can hear everything that they say but everyone is ignoring me. I feel invisible. The speech-language pathologist tapes a piece of paper to each arm of my wheelchair. The right side has the word "Yes" written in green ink with a smiling face, and the left side has the word "No" written in red ink with a frowning face.

She starts asking me yes-or-no questions: "Do you know where you are?" "Do you know that you had a horseback riding accident?" This seems like a waste of time. I feel foolish tapping the arms of the wheelchair to answer these simple questions. Just as fatigue, boredom, and frustration overtake me, a light bulb flashes in my mind—no one can hear me! I am not talking! I need to move my mouth and use my tongue. Taking a gasping breath, I begin to grasp the communication barrier. This revelation jolts me and places the pieces of this surreal puzzle in order. I have physically forgotten how to talk. I move my tongue around inside my mouth and reacquaint myself with this familiar territory, seeking my liberation.

Later my mother comes over to me, saying wistfully, as if to herself, "Stephanie, when you get better, we'll go to North Carolina and see all your friends." Her voice trails off. I push a timid breath out of my lungs and say weakly, "When I get better?" My mother's eyes light up like a thousand angels. My voice sounds like a stranger to me, but I am on my way.

Speech floods my world. I realize that I need to open my mouth to speak!

Words flow out of me at an unprecedented rate. I remember all of my vocabulary. I can still speak French and Latin. I told my mother what I have felt is ex-tra-ord-in-ary. My shackles are unchained. For so long I have been aching to express myself. I am one step closer to freedom.

After my speech pathology session, I retreat back to my room for a nap and jam my wheelchair between the door and a wall. Despite the day's excitement, fatigue has beaten me down again. My coordination is fading. I am exhausted and weak. Everything is more difficult when I am tired. Stinging tears plead to pour out of me, but I don't cry. I have to be strong to win this fight. A hazy orange glow hangs over Boston as I peer out the window—it seems to radiate a weak light of hope. With a sigh, I climb into my cage. But this time it's different—I know that I will wake up and conquer the enemy. I have to believe.

March 2009

Six years later, I realize I have conquered the enemy, although my adversaries were not what I had originally perceived. For years after my traumatic brain injury in 2003, I had to struggle daily against the lingering effects of my brain damage. My symptoms included extreme paranoia, fatigue, confusion, impulsivity, nystagmus, double vision, indecisiveness, and obsessive-compulsive tendencies. The recovery was agonizing, but I am a stronger person as a result. When I'm asked how I survived the tornado of rehabilitation after emerging from a coma that lasted nearly three weeks, I have a simple answer: love and ambition. The unconditional love of my family, close friends, doctors, and therapists meant everything to me. Ambition, on the other hand, got me through the mental and physical ordeal of rehabilitation. I guess you could say that I had to develop an ambitious love for myself. Despite my frail condition, I had to learn to love myself again, and it was an ambitious task.

In many ways I am grateful for the accident that caused my traumatic brain injury. Having almost lost my life at the age of 16, I now have an exquisite passion for each day I am granted. Every day I express my gratitude and love for life. It is amazing—I can see, feel, and move. I can hear and I can speak. After having overcome all the suffering—the constraints of paralysis and the overwhelming paranoia—I have decided that for the rest of my life, my heart will reside in a joyous, gracious place.

I sincerely believe that without my speech-language pathologist's guidance during inpatient rehabilitation, I would not be where I am today. Lynette Holmes gave me the gift of communication, the greatest gift that could have been given to me. A year after my TBI, I went back to the hospital to see her. I needed to tell her—and show her—what she gave me. I returned to the hospital with a bright smile, having recovered my dreams. During the year after discharge, I earned straight As and university brochures were scattered around my room. My dreams were once again within reach.

I will remember the gift that my SLP gave me every day for the rest of my life. Because of my positive experiences, I have decided to enter the field of speech-language pathology. I graduated from Appalachian State University's Communication Disorders Program with summa cum laude honors, and finished a second degree in French in Martinique.

I hope to use both degrees in practicing humanitarian speech-language pathology in developing countries. I have lived through the miracle of speech-language treatment, and want to ensure that other victims of neurological injuries who live in regions with fewer medical resources are also granted the gift of communication. 

Stephanie Jozefowicz, BS, BA, plans to apply to graduate school in speech-language pathology after completing a year in Senegal on a Rotary Foundation scholarship. This article is based upon her poster session at the 2008 ASHA Convention. She can be reached at sdj6487@hotmail.com. 

cite as: Jozefowicz, S. (2009, July 14). TBI: An Insider's Journey. The ASHA Leader.

Lessons From Stephanie: A Clinical Perspective

by Lynette Holmes

All patients leave a part of themselves with you when they are discharged—you just have to look to see what they are. I tell my graduate students that even though they are the teachers, each patient teaches you something. Once you discover it, use it to improve yourself and to benefit others.

When I think of Stephanie a few lessons come to mind:

  • Don't overlook the smallest thing (facial expression, gesture, or word). "She's not too bad—it seems like she can understand us," my colleagues told me about our newest admit. During our first session it was very apparent that Stephanie was alert, aware of her environment, and able to follow instructions—she just did not talk or initiate. After doing some oral motor exercises ("open your mouth, keep it open, now don't let me close it; stick out your tongue") I asked her to repeat sounds and words after me but no vocalizations emerged. Then I tried some low-tech communication with a yes/no board, which allowed her to answer, fostered some initiation, and lay some memory, but it also started our work on cognitive issues. She immediately understood the premise and used it throughout the session. She should do well, I thought, and shared this with her mother and staff. Imagine my joy and surprise the next day when I heard her talking—not just single words but an entire conversation! She still had some cognitive-linguistic deficits but for now, she was talking—step one.
  • Be empathetic—understand the emotional impact. When I went to her room one day to get her for treatment, she was there with a staff member and her mother. She was crying—she had just realized that this was not a dream but reality. She would refer to it later as the day she "woke up from a dream." She was right—it was around this time she starting laying down consecutive memory. I was impressed because she had such insight into this and used it to her advantage. I remember telling her she needed to write and share her story with others because not everyone was able to do this.
  • Be truthful to prepare, move forward, and succeed. I had to caution Stephanie and her family that even though she looked well physically and was improving cognitively (through new learning and completing some high-level cognitive tasks) she still had deficits. This hurdle would be the hardest because Stephanie was bright and hard-working. Others could look at her and not know that she needed assistance, nor would they understand her need for compensatory strategies and accommodations. Stephanie and others would always need to be diligent so that Stephanie could get what she needed to succeed.
  • Pass it on. The day of her discharge she looked at me and said, "SLP was the one therapy that helped me a lot." She would always refer to our sessions as "SLP" not "speech," which made me smile. I encouraged her to keep in contact. We would communicate periodically, but then we lost touch. One day as I walked down the hall I saw Stephanie and gave her a big hug, and said, "You look good." She humbled me by saying that I inspired her to become a speech-language pathologist. I know she has much to bring to the field.

Years later I am repeating the same refrain. When I see Stephanie she reminds me of the joys and—at times—challenges of the job. It's forever changing, but this is also what keeps me in the field—the diversity, challenges, and rewards. I'm grateful for the lessons Stephanie continues to teach me.

Class is still in session.

Lynette Holmes, MS, CCC-SLP, is a senior clinician at Spaulding Rehabilitation Hospital (Pediatric Unit) in Boston and a clinical instructor in the graduate communication sciences and disorders program at Massachusetts General Institute of Health Professions in Charlestown, Mass. Contact her at LHolmes1@partners.org



  

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