Hospital gowns and colorful socks
In October 2019, I was flying home from Tokyo with the weight of the world on my shoulders. It had not been an easy trip. At the time, I worked in tech and was there to handle some interpersonal issues in our Japan office. During the trip, I felt a few painful electric shocks on my face. At first, I had no idea what was going on. I was under a lot of stress and was sure that this was the cause. I hoped it would go away, but it didn’t. By the end of my trip and on my flight home, I was terrified I was having an aneurysm. I made it through the flight with minor incidents and went straight home to see my kids. However, the next day the shocks returned, prompting me to rush to the emergency room. Once I described my symptoms, I was immediately sent for a CT scan. There I waited, clad in colorful socks and a hospital gown — a look I would become familiar with over the next three years.
During that visit, they found nothing except some issues around my sinuses. The doctor suggested I take Claritin and, if there was no improvement, to see a dentist because a tooth might be causing the shocking sensations on the right side of my face. The pain persisted, so I visited my dentist. She confirmed my teeth were fine and suggested I might have something called Trigeminal Neuralgia. I had never heard of it, but my quick online research introduced me to its alarming nickname: “The Suicide Disease.” She advised me to consult a neurologist to determine if it was indeed Trigeminal Neuralgia.
This posed a significant inconvenience. I was swamped at work, with hardly any time even for restroom breaks, let alone more doctor’s appointments. But the relentless pain drove me to see a neurologist in November 2019, who confirmed my diagnosis. My neurologist wasn’t particularly empathetic; he was brusque and young, presenting facts without much warmth. He prescribed anti-seizure medications, and when I asked if I’d need them indefinitely, he replied, “likely yes.” Trigeminal Neuralgia can go into remission, but it often returns with a vengeance — like a relentless antagonist in an action movie. I familiarized myself with the side effects, such as brain fog and fatigue, but concluded they were preferable to the torturous jolts of pain I was experiencing.
A friend suggested I find a support community on Reddit. This became a lifeline for me. While my family and friends were supportive, they couldn’t truly comprehend the agony this rare disease subjected me to. For a while, I managed. But as a pandemic unfolded and my medication’s efficacy waned, I had to adapt: turning off my camera during meetings, hiding my pain-stricken face during conversations, and fighting back tears. It felt like I was the sole actor in a tragic play, while everyone else misinterpreted the plot.
Ironically, the pandemic brought me some relief. Being remote meant I could suffer in silence, not needing to meet anyone in person. My dosage was increased, which exacerbated the side effects. My balance suffered, and brain fog became so intense that even everyday words eluded me. The agony drove me to consult a neurosurgeon about surgical options. There were three:
- A non-invasive injection to temporarily numb the nerve.
- Radiation to burn the nerve, which might regrow but has had success for some.
- Brain surgery to place foam between the compressed blood vessel and the nerve, purportedly curing the issue, but requiring ICU recovery.
After much contemplation, I chose the third option and took a three-month medical leave.
Recovery was challenging, but my family and friends were incredibly supportive. Despite some initial post-op shocks, they eventually ceased, and I began tapering off the medication. But just as I neared the end of my medication regimen, the shocks returned. Both my neurologist and neurosurgeon had few encouraging words. The latter suggested the nerve damage might be more extensive than anticipated and could take years to heal. So, I was back on medication — this time, even more than before.
Summer of 2021 arrived. With the world reopening, I began to socialize but hid my pain. Though my friends were supportive, I didn’t want to be a constant source of concern. The fear of experiencing a pain attack in public made me increasingly reclusive.
The subsequent year was a blur of pain, pretense, and isolation. Then, my tech company initiated layoffs, affecting me. Though I received another job offer three weeks later, I was paralyzed with indecision. Should I accept the role, given my debilitating condition? My situation worsened: the medication became ineffective, and I found myself bedridden frequently. It was time to revisit surgical options. I turned down the job offer.
After another MRI, a new compression was discovered. Dr. Sen, one of the US’s leading neurosurgeons and someone recommended to me earlier, took my case. We proceeded with a second brain surgery, which proved more challenging than the first. Despite initial success, complications arose: an infection necessitated another operation. I battled a staph infection, underwent antibiotic treatment which damaged my liver, and faced numerous challenges. But eventually, I began to recover. Today, despite some lingering effects like numbness and a noticeable dip in my skull from a removed metal plate, I feel like my old self again — grateful, joyful, and full of life. If this journey brought some baggage, I’m willing to carry it.