In the year I joyfully turned 28, life seemed to align perfectly with my dreams. I got engaged to a wonderful man and proudly completed my doctorate in psychology. Everything I had envisioned for my future was falling into place. However, the day after my 29th birthday, just a month before my wedding, life took an unexpected turn when I received a diagnosis of Amyotrophic Lateral Sclerosis (ALS). This ALS diagnosis story is about how everything changed in an instant.
I had always embraced an active lifestyle. Volleyball, kickboxing, yoga, and soccer were all passions of mine, but running held a special place in my heart. Running was a shared joy with my mom, sister, brother, father, and eventually my fiancé. It was our time to connect with nature, release energy, and appreciate the beauty of God’s creation. In January 2016, this cherished activity began to falter. Running, once effortless, became a struggle. I couldn’t understand the sudden change. It felt as though I had lost control of my own body, my feet striking the ground too heavily, my balance constantly off. Then, the falls started. At first, I could catch myself, but soon, even that became impossible. Dismissive comments like “shake it off” or “it’s all in your head” were frequent, but I knew something was wrong and I couldn’t fix it on my own. My search for answers began with a visit to a foot doctor, a logical starting point as my feet seemed to be the source of the problem.
Around the same time, falls from a standing position became a concern. During my appointment, the foot doctor, upon hearing about these additional falls, recommended a consultation with a physical therapist. Unfortunately, physical therapy, instead of improving my balance, seemed to accelerate my decline. I rapidly progressed from being unable to run to struggling with simply walking. Seeing my lack of progress and increasing difficulties, the physical therapist advised me to schedule an appointment with a neurologist.
My initial meeting with the first neurologist was stark and direct. He conducted a sensory checkup, a procedure that would become routine in subsequent medical consultations. This examination involved testing my reflexes, eye and hand tracking abilities, and sensory perception. During this first assessment, the neurologist used his keys to scratch the bottom of my feet to test sensation. I could feel it, and it was painful. He then produced a safety pin to check my response to a prick, and I recoiled from the table. This encounter was stressful and devoid of hope. Despite the discouraging atmosphere, he scheduled a series of MRIs.
In the following weeks, my strength diminished, my balance deteriorated further, and my impaired walking became increasingly noticeable. My mother accompanied me to all appointments, and after the unsettling first neurologist experience, my sister joined us as well. The number of family members attending appointments drew jokes from several doctors. As psychologists, the three of us understood the importance of having multiple perspectives to accurately process the information being conveyed by medical professionals under stressful circumstances. When doctors joked about my ‘entourage’, I agreed, explaining that I had brought my “team of therapists.” Fortunately, that’s exactly what I had. I believe in the comfort of God, knowing that “my God will supply every need” as Philippians 4:19 states. However, human reminders are also necessary, and for me, these often came from my family. They provided strength, physical support when walking became difficult, and unwavering belief when I felt despair. Later, as I deepened my faith, this comfort expanded to include even more people, but it always began with my family.
As my symptoms worsened rapidly, my family and I sought a neurologist who could offer more availability and responsiveness. In a fortunate turn of events, a family friend connected us with a neurologist friend of hers. Although located further away, this neurologist proved to be more attentive, empathetic, and dedicated to thoroughly explaining each neurological test and its potential implications. Under her care, over a period of six weeks, I underwent an EMG, two spinal taps, and spinal and cerebral tests to rule out an AVM, which included a week-long hospital stay at Columbia University Medical Center. It was there, unexpectedly, when an unfamiliar doctor entered the hospital room I shared with another patient and announced to the room that I had been diagnosed with ALS. This doctor explained bluntly that there was no cure, no treatment, and if the diagnosis was correct, there was no hope. This was a devastating ALS diagnosis story moment.
Throughout this challenging period, we constantly reminded ourselves to “live by faith, not by sight” (2 Corinthians 5:7). On June 20, 2017, my ALS diagnosis was officially confirmed. A highly respected and compassionate expert in the field explained that given my atypical presentation and rapid progression, he anticipated the need for breathing and feeding tubes within three months. He further stated that while most ALS patients live for 2 to 5 years post-diagnosis, he expected my lifespan to be at most a year from that date. He detailed the expected progression: loss of speech, inability to chew and swallow independently, and eventually, respiratory failure.
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“Don’t worry about anything, instead, pray about everything. Tell God what you need, and thank Him for all He has done” (Philippians 4:6-8). Realistically, I need to prioritize conserving energy and managing my daily energy levels. However, my passion for my work as a psychologist remains undiminished by my diagnosis or symptoms. I dedicated years to training for my career, and my enjoyment of it hasn’t changed. I understand that my ability to work may evolve, and the ways I work might need to adapt, but my goal is to continue working as diligently as possible for as long as I can. Jerry West’s quote, “You can’t get much done in life if you only work on the days when you felt good” (Maxwell, J. C, 2011, p.137), deeply resonates with me. Despite frequent fatigue, I recognize that many people experience tiredness. I am often reminded that each day is an opportunity to continue working and to allow myself to be used by God. Therefore, I pray for opportunities and reminders to pray for others, just as I know they are praying for me.
To anyone reading this ALS diagnosis story, my prayer for you is, “May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit” (Romans 15:13). Two renowned medical institutions confirmed my ALS diagnosis. I was given a prognosis of one to five years to live, and I have witnessed my body lose the ability to run, walk, cut food, dress, bathe, and speak as I once did. Adaptation has become a constant, and throughout this journey, we have discovered ways to make a difference. My brother beautifully illustrated this with a radio story: ‘During a snowfall, a school custodian began shoveling the steps. A student in a wheelchair asked when he would shovel the ramp so she could enter school. He replied that he had to do the steps first so most students could get in. She pointed out that if he did the ramp first, everyone could enter.’ True societal change requires understanding that improving things for everyone means including every individual. Sharing our struggles is essential to inspire physical adaptations that address limitations.
My aim is to transform every negative experience into an opportunity to improve systems and advocate for accessibility to be a primary consideration, not an afterthought. In June 2021, it will mark five years since receiving the “death sentence” diagnosis of ALS. Considering that most ALS patients succumb to the disease within 2 to 5 years of diagnosis, reaching this milestone is another blessing amidst my daily miracles. Miraculously, I am still able to type, communicate, and work full-time as a psychologist. Each breath and movement is a daily testament to God’s help. As my paralysis has progressed, significant advancements in ALS research have emerged, fostering my belief that a cure will one day be found. Together, we can continue to raise funds and provide resources to help others function to their fullest potential until that cure becomes a reality.
