My name is Esther Klang. I live in Brooklyn, NY, and I am a 30-year-old woman who has faced numerous significant challenges since becoming a quadriplegic with shallow breathing, a tracheostomy, and vocal cord paralysis. This results in me having nonstandard speech and having to rely on a ventilator when I sleep, and when I am not feeling well, which happens a lot. These conditions arose from complications of a brain stem tumor removal surgery just before my 11th birthday. Today, I want to share my story highlighting the importance of communication access for everyone, regardless of their circumstances or physical condition.
My Early Struggles
I was a relatively typical ten-year-old but was clumsy and had a low, raspy voice and poor gross motor skills; I could never jump rope, play ball, or navigate stairs with my feet alternating. This all should’ve been an indicator of the brain tumor that was slowly growing inside me, likely—since birth. One winter morning on Thursday, January 12th, 2006, I collapsed while walking to the school bus stop. I was diagnosed with a tumor in my brain stem, and 12 days later, on Tuesday, January 24th, 2006, I had surgery to remove the tumor. The surgery was supposed to be a routine and uncomplicated one, to my understanding, so I was utterly shocked and disoriented when I awoke from the surgery; I found myself almost entirely paralyzed and unable to speak due to a tube in my throat. This incident left me scared and desperate to understand what was happening to me, but I was unable to vocalize to ask anyone what happened to me, no one bothered to take the time to explain what was happening with me because they thought that I was out of it and wouldn’t understand or remember anything from that time . A few weeks later, after a tracheostomy and a feeding tube were inserted, the child life therapist, who was supposed to be responsible for my emotional well-being during my hospital stay, introduced me to a letter board as a way of communicating. But it wasn’t helpful for me because I couldn’t move my hands to point to the letters I wanted. Moreover, the child life therapist lacked the time and expertise to properly show me, my family, and the medical staff its purpose and how to use it effectively. I get it, AT and AAC were not in her field of expertise. Still, she should’ve reached out to an OT or SLP for guidance on how to help me best access communication.
The medical staff, not my family, did not have the time or the patience to learn how to use the letter board. When I was transferred to the rehabilitation center, the letter board didn’t come along with me, and I wasn’t given a different one, and I was left without any way to communicate. The frustration and despair I experienced at that time was overwhelming, and I still have nightmares about that time. My family and the medical and rehab staff focused on my medical and physical deficits and recovery and didn’t think about the mental, emotional, psychological, and social aspects of my recovery and certainly not about communication. If there is one thing I can tell medical and rehab professionals, the topic of communication may not seem like a priority versus stabilizing and helping the patient regain their physical capabilities, but I am telling you from my personal experience that this is not the case! Failure to establish a (reliable) communication method can lead to severe long term repercussions!
Finding My Voice
For months, I remained unable to speak or make any sound because my tracheostomy had a cuff that was always inflated, which didn’t allow air to escape my airway and prevented me from speaking. This period was extremely lonely and isolating for me. I longed to express my thoughts and feelings, vent my frustrations, ask questions about my condition, and connect with those around me. Finally, after three months, the cuff was deflated, and I was given a Passy-Muir speaking valve that allowed me to talk. The day I said my first sentence was such a happy day for me and one that I will never forget. It was a moment of freedom and empowerment for me. I still vividly remember making my first phone call as an 11-year-old; it meant the world to me.
Nine years after I first got my tracheostomy, I finally had it taken out on Wednesday, February 25th, 2015! For nine glorious months, from February 25th, 2015, until Monday, November 15th, 2015, I had the best time that I had in my life since my surgery in 2006; I felt like a completely different person. I could finally breathe, speak, eat, and drink like everyone else. During those months, I felt like a regular person, engaging in detailed conversations without the frustration of being misunderstood or judged for my voice’s volume, tone, and pitch, and I no longer had a bothersome piece of plastic sticking out of my neck and a tie constantly around my neck. Unfortunately, my happiness was short-lived because I soon became sick and was admitted to the PICU with pneumonia, rhinovirus, and enterovirus. After several unsuccessful BIPAP trials, a tracheostomy was reinserted. I can’t begin to tell you the feelings of sadness and desperation that I experienced at that time. It took me over 3 weeks to agree and give consent for the procedure; even though I knew deep down subconsciously that it was the correct decision for me, I took my time consenting. I wanted to savor every moment that I could be tracheostomy-free because having a tracheostomy piece of plastic in my neck keeping me alive is, to me, like not really living; it’s like I am being kept alive artificially. So, on November 15th, 2015, my life reverted to what it was 9 months ago, and now, almost 10 years later, I am continuing to live with communication struggles. I am still not sure if I made the right decision by consenting to have the tracheostomy reinserted because every day that I am living with a speech disability is an absolute hell! Nevertheless, I’m proud of what I’ve achieved despite having motor and speech disabilities. This decision has been one of the most difficult and complex ones I’ve had to make, and it’s a constant struggle for me to come to terms with it and embrace my situation and just move on with my life.
My Ongoing Challenges
Living with vocal cord paralysis and shallow breathing makes it difficult for me to control my tone and pitch, and sometimes, what I mean to say comes out louder than I intended, so it may seem like I am yelling or shouting at the person. Sometimes, I run out of breath entirely and can’t respond when spoken to, so people think I am ignoring them. People often misinterpret my tone as annoyance, impatience, or anger, leading to misunderstandings. It’s especially painful and frustrating when others finish my sentences for me or overlook my opinions entirely because they don’t have time to hear me out.
My inability to participate in conversations or connect meaningfully with those around me has often left me feeling isolated and lonely. However, I have found solace in social media and online communities. These platforms allow me to communicate at my own pace without being judged for how I sound. In these text-based environments, I feel equal, valued, and heard, and I can fully express my opinions without being rushed or judged by how fast I respond or by my voice’s volume, tone, and pitch.
Lessons Learned
My journey has taught me that access to communication is not a luxury; it is a necessity and a right. Everyone deserves to have their voice heard and their feelings acknowledged, regardless of their medical condition. I hope that by sharing my story, I can inspire others to understand how important communication is and advocate for better communication tools and practices, especially for those with disabilities.
If there is one takeaway from my experience. It’s this: communication is the bridge that connects us and is what makes us human and superior to other mammals.
Let’s ensure the bridge is always open and accessible to everyone.
Esther Klang is a Certified Professional in Accessibility Core Competencies and works as an accessibility tester and advocate. For almost two decades, she has lived with quadriplegia and a speech disability. Passionate about making spaces and communication accessible to all, Esther is a dedicated disability advocate, with a focus on advocating for those with speech disabilities. She strives to educate the public, especially healthcare professionals, on the significance of communication alongside the physical and medical aspects of recovery. Her website https://estherswalkingjourney.co/ details her life experiences and her work with assistive technologies.