Penned by Sophia Nicole DeVera Schmitz and Michelle Schmitz, and Robert Schmitz
Robert, my husband, and I had great difficulty accepting my affliction of Amyotrophic Lateral Sclerosis (ALS), colloquially known as “Lou Gehrig’s Disease,” or, in Singapore and the United Kingdom, “Motor Neurone Disease” (MND). Prior to my diagnosis, I was an active woman whose daily exercise regimen included walking up to 14,000 steps a day for shopping, errands, and visiting friends in Singapore.
There are no answers for how one contracts ALS. Currently, 90% to 95% of ALS cases are named “Sporadic,” having no known cause, while the remaining 5-10% of cases are deemed “Familial” or genetic. However, we believe that my ALS was triggered in early July of 2019 when a doctor administered a triple dose of steroids in my left knee and another steroid in the second toe of my left foot — supposedly to mitigate osteoarthritis. Within several weeks, I started limping and losing control of my left side.
The initial diagnosis was “drop foot.” Over the next year, a possible diagnosis of ALS was never mentioned by any of my doctors in either Singapore or in the Philippines, where I also sought a diagnosis. In early November 2019, a panel of interdisciplinary medical specialists at the Philippines General Hospital (PGH) concluded that my drop foot was neurological, not orthopedic.
Nevertheless, we conceded to one more very expensive, in retrospect, non-essential spinal operation here in Singapore. ALS is such a dreadful disease that doctors and ourselves were searching seemingly for an alternative diagnosis.
Despite the misguided diagnosis, I gamely attempted a “recovery” process in early 2020, undergoing aquatic, land, and TCM therapies prescribed for my rehabilitation. At that time, I was able to walk unassisted and I still worked out in the pool. However, after the pandemic struck, Singapore’s first 100-day COVID 19 lockdown prevented me from attempting any kind of prescribed therapeutic exercise: no pools, no gyms, no parks.
Two days after the lockdown was lifted, I collapsed into a heap while walking across our living room. The following afternoon, on 7 July 2020, the neurologist administering the first Electromyography (EMG) — a diagnostic procedure which checks the motor neurons responsible for physical movement — invoked the words “ALS,” a specific form of motor neuron disease. This second opinion was followed by a third opinion involving three full days of in-hospital tests, the results of which all of which strongly suggested — but did not conclude — a diagnosis of “ALS.” When I was diagnosed, I was 71 years old, a somewhat advanced age for this rare disease, which largely affects men between the ages of 40-70, so I had narrowly missed this window. This diagnosis was a surprise; and any sort of prolonged hospital stay seemed rather unusual to me due to my otherwise-picture-perfect health. In the decades prior, I had only spent one night in the hospital — specifically after giving birth to my twin daughters.
Within a very short time, from my initial diagnosis of Motor Neuron Disease (MND) in July and August of 2020, my abilities to function had been stripped away. Within my first six months with officially-diagnosed ALS, I lost my ability to walk. Three months later, I could not stand even with the aid of walkers. By September 2021, I had lost all control of both arms and hands. However, I could still sit up, attempt my physical therapy sessions, and thankfully visit the park.
I am beyond denial and even anger.
My husband tries to apply the adage, “Acceptance doesn't mean resignation”. Meaning: acknowledge an unwelcome fact and embracing a mindset that you define what you can control.
What can I control? First: maintain my quality of life. Second, extend my life without the aid of medication. At my age, hustling between hospitals would be a time- and energy-consuming exercise. No neurologist could convince my husband and me that my life would be extended — with preserving my current of quality of life — given the low efficiency rates of current FDA-approved regiments. Instead --- while I was still able to move-- we preferred spending long afternoons in the East Coast Park after my aquatic, physical, and TCM therapy sessions when the COVID restrictions were lifted.
When losing control of my body was becoming my “new normal,” my health deteriorated yet again. Within three days (74 hours) after receiving the COVID booster shot in October 2021, I was rushed to the ICU with acute pneumonia. Four days later, I faced another hard reality. A tracheostomy would be required to help me breathe. In short, I had a low probability of fully recovering my respiratory functions due to neuron degeneration of my diaphragm/lungs, which meant that there would be no other options for breathing except with a tracheostomy.
With this procedure, a curved hollow plastic tube would be permanently inserted into the trachea in my throat for mechanically assisted breathing via an electric ventilator. In many, if not most cases, a trache can be viewed as a temporary set-back. Given my progression of ALS, I was very quickly losing my ability to swallow, talk, and manually eat — basically, anything involving the tracheal muscles. The insertion of a trache would be required to help me breathe; which meant that this assisted breathing and tube feeding would be with me to the end. It was another battle lost.
One month later, or 41 full days in the ICU, I arrived home on December 2nd, 2021, requiring 24/7 intensive homecare, provided first with nurses, and later followed by trained caregivers and cum domestic helpers. My daughters rushed to Singapore from the United States. One of my daughters, Michelle, is credited for tracking down medical equipment and supplies for home use despite supply chain issues due to the COVID-19 pandemic. My other daughter, Nicole Sophia, left her graduate programme despite a lot of bureaucratic red tape almost a month before her term ended to be by my side.
Before I left Mount Elizabeth Hospital, my husband and our daughters converted the largest room of our flat into my “medical suite.” where I currently spend almost every single hour of my day and night. Due to my progressing paralysis, I have not left this room since my arrival in early December 2021. Instead, I spend my time in stasis, unable to do most things unassisted like eat or drink, cough, or scratch. Instead, I watch TV. The hospital bed is circled by a ventilator, a humidifier, an oxygen concentrator, along with a cough assist, suction machines, and shelves of medical supplies and equipment.
Though I am now locked within a paralyzed body, I can still think and hear as clearly as ever. My family and care team does everything they can to keep me comfortable. No longer able to speak as my paralysis has reached my throat and vocal chords, my caregivers are now my only avenues for communication. Perhaps starting late, perhaps my age, perhaps ALS affecting me so rapidly, or perhaps having to face yet another kind of existential dread, I cannot get the hang of Tobii or other eyegazers. When I need to convey my thoughts, we communicate by acknowledging letters with my eyes via an alphabet chart, similar to Jean-Dominique Bauby and Julian Schnabel‘s story about a paralyzed man in the film and French memoir “The Diving Bell and the Butterfly.”
Locked inside my own body, my main source of company, and entertainment, are my thoughts. My disappointments are largely that I am a burden on my family. Our daughters’ lives have been disrupted. Their worrying about me obviously impedes their promising careers. One of our daughters, Nicole Sophia, is following in my footsteps into Architecture, while her twin sister Michelle is using her microbiology and epidemiology science degrees for mitigating infectious disease to improving healthcare systems. Due to the distance, one or both daughters will travel once, twice, or as many feasible times a year, from Atlanta, Georgia where they reside, to Singapore — a distance of 17,627 km, or a 22-hour flight — away. Robert, who wanted to spend post-retirement in directorship roles related to his restructuring expertise, instead spends nearly all his time with me.
My greatest disappointment is that I cannot enjoy our retirement dreams, our passions of travelling, and spending time with friends and loved ones. I did not expect this rare disease. Most of my grandparents and great-grandparents lived well into their late 80s and 90s.
I am so thankful that my family and friends are trying to keep me in mind over the course of this excruciating physical, emotional, and existential journey.
Beulah De deVera -Schmitz
7 May 2023