Hi everyone!
Here, you will read the story of how I became a quadriplegic.
My name is Esther Klang, and I’m a 29-year-old woman who has been a quadriplegic for the past 18 years. I also have a tracheostomy and use a ventilator at night and when I am not feeling well. I live with my elderly parents and older sister in a single-family house in Brooklyn, NY.
Growing up, I was a clumsy child, had poor gross and fine motor skills, and a low, raspy voice, i.e., I couldn’t throw or catch a ball or navigate stairs with my feet alternating and other minor medical issues. In hindsight, that should’ve been an indicator of the brain tumor that was slowly growing in me, likely since birth. It’s a debate whether it would’ve been better if my brain tumor had been discovered earlier in my life. I certainly think it would’ve been much better for me, but I’m trying not to think about it because these thoughts just lead me down the dangerous rabbit hole of ‘what if.’
Still, I had a relatively typical, carefree childhood growing up until one day when my life as I knew it changed forever, and thus began my 18 years of a never-ending roller coaster journey of my complicated medical saga. My saga includes many extended, lonely hospital and rehabilitation stays, months of chemotherapy, setbacks, heartbreaks, and many sad and challenging moments.
The day that my life changed was on a cold winter day, on January 12, 2006, to be exact, a month before my 11th birthday. I collapsed as I was walking to my bus stop on my way to school in the morning and was taken to the local ER. After having an MRI, I was diagnosed with a brain tumor in my brain stem (the part of the brain that controls all of the body’s vital functions like breathing, swallowing, blood pressure, and temperature regulation) and had surgery two weeks later to try to remove it.
These next few months were the scariest time in my life. I remember being so confused about what was happening to me, and no one bothered to explain what was happening. I was a timid child and felt too intimidated by all the adults who were hovering around me to ask questions. I remember seeing the doctors talking to my parents outside my room and wishing that someone would include me in the conversations.
I firmly believe that hospitals should provide every minor patient with an advocate whose only job is to explain to the child what is happening and what they can expect to happen to them and help them voice their questions, objections, and concerns.
On January 24, 2006, a day that I will never forget, is the day that my life truly changed permanently and irreparably. Of course, the surgery wasn’t supposed to be without some side effects. Still, no one predicted that the surgery would truly leave me with so many life-altering deficits that completely changed every aspect of my life and wasn’t even totally successful; this has been a blessing and a curse at the same time and has enriched my life in so many ways.
It has taught me many important life lessons, the most important being to think carefully before rushing to make a decision. This is especially important when having to make such a life changing decision as having or subjecting your child to major surgery and not to make a decision based purely on emotion. Consider all the possible outcomes that might occur and if you can handle them. I can’t entirely blame my parents because they were overwhelmed and faced with making a difficult decision. They were blindly following the advice of some ill-advised people. Still, I just wish they would’ve involved me in the decision that would change the rest of my life.
When I first awoke from the surgery around 10 hours later, I was almost entirely paralyzed and severely weakened. I couldn’t be extubated and needed a tracheostomy, ventilator, and feeding tube because I couldn’t breathe or swallow on my own. After spending a month in NYU’s PICU battling many infections, I was transferred to Children’s Specialized Hospital in Mountainside, NJ, for rehabilitation; there, I began my six-month-long inpatient rehab stay of trying to gain back some function and mobility. They have since moved to New Brunswick, NJ. I’ve been there too.I’ve been in Mountainside 3 times and in New Brunswick 2 times. I’ve also been in Blythedale Children’s Hospital in Valhalla, NY, for an unbearable two weeks (more of that later). Aside from my many extended hospital stays, I have also experienced a long, bumpy road full of setbacks, infections, chemotherapy, two unsuccessful trach decannulations, and got rid of my feeding tube three times. I took a cocktail of pills for 7 months as a part of an experimental chemotherapy regimen but it didn’t shrink the tumor much.
Today, 18 years after I became a quadriplegic, I am still trying very hard to come to terms with my disability and understand that I can’t change what happened to me, no matter how much I wish. I’m trying to be content, make the best of my situation, and live my life to the fullest.