by Esther Klang

reading time: 4 minutes

The views expressed in this post are those of the author and do not necessarily reflect the views and policies of NWACS. No endorsement by NWACS is implied about any device, manufacturer, resource, or strategy mentioned.

Today, I would like to share my sad story with you. This is the story of how I learned how important it is for everyone to be able to communicate and have access to their phones, tablets, and computers independently. Having independent access is a matter of life and death. Not having access to communication can scar you for life and leave you with feelings of low self-esteem and deep despair. I hope that you will learn something by reading this.

My Story

My name is Esther Klang. I live in Brooklyn, NY. I'm a 29-year-old woman who has been a quadriplegic, has had a tracheostomy, and has been using a ventilator at night for the past 18 years. All this is due to a brain stem tumor removal surgery a few weeks before my 11th birthday. I also have vocal cord paralysis and shallow breathing. This makes it hard for me to speak and be understood by my family, friends, caregivers, and practically anyone else I meet.

When I awoke from surgery, I was almost completely paralyzed. I couldn't speak because I had a tube in my throat to help me breathe. I was scared and wanted to know what was going on with me, but I was unable to speak and ask. A few weeks later, after I got my tracheostomy and g-tube, my child life therapist introduced me to a letter board as a way to communicate. But it was not helpful to me because I couldn't move my hands to point to the letters. Also, she didn't have the knowledge, expertise, or time to really show me how to use it. Or to educate my family and other staff on what its function was or how to be a good communication partner. I was pretty savvy, so I figured out how to use it on my own. 

A few weeks later, I was transferred to rehab, and the hospital's child life therapist took back the communication board. So, I was left without a way to communicate. It was extremely frustrating for me. No one understood the depths of my anguish, frustration, and despair. I guess everyone was too invested in the medical and physical aspects of my recovery. They neglected the social, emotional, mental, and psychological aspects. My new therapists were so busy with the physical part of my recovery and I guess communication wasn't on top of their list. However, I think that if my family or I had spoken up and asked about it, my life now might've been very different. 

My surgery was on January 24. Until mid-April, I was unable to speak because my tracheostomy was cuffed all day. These months were very painful and frustrating for me. I had so much that I wanted to say. I wanted to communicate with the people around me. To express my thoughts and feelings and just vent my frustrations! Finally, after 3 months, they deflated the cuff and gave me a Passy Muir (Speaking) Valve. This allowed me to speak. You can't imagine how I felt on the day I said my first sentence! It was so freeing to finally be able to let out all my pent-up emotions and feelings of the past few months. I clearly remember the first phone call I made. It was short, but it meant a lot to me as an 11-year-old 5th grader. 

9 years ago (starting February 25), I had the best 8 months of my life. I had my tracheostomy removed. For 8-months, I felt like a regular normal person. I was able to talk and participate in detailed conversations without people getting offended. My happiness was short-lived. 8 months later (October 10), I was admitted to the pediatric intensive care unit (PICU). I had RSV and pneumonia and was having several nighttime apneic episodes (stopped breathing). This all resulted in having a tracheostomy reinserted. With my tracheostomy, people don't like the tone of my voice. They think I am yelling at them. Or they get annoyed that it is very hard for me to control my tone and pitch. So, sometimes it seems like I am annoyed, angry, upset, or not interested in the conversation.

Now, I use a variety of tools to help me communicate. These include

• text messaging

• WhatsApp

• emailing

• Google Docs (for longer thoughts)

• Speech Assistant app

• Voiceitt (AI-powered speech recognition software that adapts to non-standard speech)

I am an early adopter of several new assistive technology products, like

• Augmental’s MouthPad

• Wandercraft’s Atalante X exoskeleton

I recently launched my website to share my medical journey and resources that help me.

It is so lonely not to be able to participate in conversations and not communicate with people around you. To have your opinions ignored and overlooked. I love being a part of online communities. I can answer at my own pace, and no one judges the tone of my voice. I feel like I am equal because all the communication is text-based.