The ALS Story

This is a ChatGPT generated summary of my Twitter thread. The original thread can be found here: https://twitter.com/sonnes/status/1474042833535262725

Two years ago, my life took a dramatic turn. After seven successful years at PaGaLGuY, I made a bold decision to join GojekTech, drawn by the promise of Southeast Asia's hypergrowth phase. With my wife and one-year-old son, we packed our bags and moved to Jakarta, ready to embrace the new opportunities that awaited us.

Settling into a new city wasn't without its challenges. My wife's first mission was to find familiar grocery items, and our trips to Singapore became a ritual of stocking up on essentials from Mustafa. Amidst the settling-in process, our son began swimming lessons, my wife took up tennis, and I even achieved my PADI dive certification. However, my attempts at learning tennis were far from successful, and I blamed my clumsiness on overdoing deadlifts and snatches.

Little did I know that the following months would bring unexpected health concerns. It started with some discomfort, leading me to consult doctors, orthopedics, and neurologists. I underwent a series of tests, from ENMG to cervical MRI scans, in search of a diagnosis. The initial suspicions pointed toward spondylosis or even a motor neuron disease, most likely ALS. The spectrum of possibilities was overwhelming, and I couldn't help but hope it was just a pinched nerve.

The uncertainty lingered as we waited for conclusive results. An MRI scan left the radiologist puzzled, unable to provide a definitive diagnosis. We found ourselves back at square one, contemplating our next move. We decided to fly back to Hyderabad, seeking further medical evaluations and putting an end to the relentless search for answers.

November 2019 was marked by a week filled with more tests, including MRIs, PET-CT scans, and countless blood vials. Each moment was filled with apprehension and a sense of urgency. Yet, despite the numerous evaluations, there was still an air of uncertainty surrounding the diagnosis. The neurologist cautiously suggested that ALS was the most likely culprit. The state-of-the-art diagnostic test? Waiting. Waiting to see how the condition progresses. The doctor prepared us for the worst, explaining that I may have only a few years left, at best, and perhaps a little more if luck was on my side.

With these grim prospects, questions began to flood my mind. How much time do I have left? Are there any treatments available? Thoughts ranged from contemplating my legacy to planning the optimal investment strategy to put my young son through college. Amidst this turmoil, I found it difficult to shed tears, but everyone around me seemed to do so.

At some point, I reached a breaking point and said, "FUCK IT!" I made a conscious decision to move forward and live one month at a time, cherishing every precious moment that life had to offer.

The year 2020 brought its own set of challenges. In addition to the ALS scare, I received a diagnosis of Hirayama, which brought its own worries. The world was hit by the COVID-19 pandemic, imposing lockdowns and restrictions. Amidst the chaos, I underwent cervical fusion surgery, hoping to alleviate some of the discomfort. Fortunately, the diagnosis of Hirayama provided a glimmer of hope, as it was not a fatal condition.

But as 2021 rolled in, my speech deteriorated further. Simple tasks became increasingly difficult to perform. Halfway through the year, the neurologist confirmed what I had feared all along: ALS. The ground crumbled beneath me once again, but this time, I refused to let it consume me.

In 2019, I couldn't fathom making it to 35. And yet, here I am, still alive, still mobile, but facing the same diagnosis once more. Despite the challenges