By Katsuhiro Asagiri
Abstract
This personal account chronicles my unexpected and life-altering battle with Guillain-Barré Syndrome (GBS), contracted during a business trip in September in 2024. After initial misdiagnoses and critical delays due to hospital refusals in Japan, I was ultimately hospitalized and treated through immunotherapy and intensive rehabilitation. The article highlights the essential, yet often underrecognized, role of physical and occupational therapists (PTs and OTs), alongside nurses and doctors, in my recovery journey. It also explores the deeper humanitarian lessons drawn from this experience, including empathy, global health inequality, and the need to protect healthcare access worldwide. With a particular emphasis on the Buddhist concept of “同苦” (dōku in Japanese, or shared suffering), I reflect on the moral and social responsibility to support care infrastructures—especially in conflict zones where such systems are lacking. This story is a tribute to the power of rehabilitation and the quiet heroism of medical professionals.
TOKYO (INPS JAPAN) – In September 2024, I embarked on an international business trip filled with promising encounters and meaningful discussions across Central Asia and Europe. The experience was enriching—marked by hospitality, collaboration, and dynamic cultural exchange. But just as my travels were concluding with covering a three day forum in Paris, everything changed in a single night. JAPANESE
Around 10 p.m. in my hotel room, I felt a sudden burning pain in both thighs and fingertips. Within minutes, the pain climbed up toward my chest. I began to sweat heavily, unable to sleep or lie flat. Alarmed, my colleague Kevin Lin rushed me to an emergency hospital. My oxygen level had dropped to 93 percent. I was hospitalized for three days, put on oxygen, and given a battery of tests. Despite the severity of the symptoms, I was told no life-threatening condition was detected, and I was advised to fly home as soon as possible.
Kevin remained with me throughout. Determined to return home immediately, I purchased a Japan Airline one-way ticket to Tokyo and Kevin accompanied me to Charles de Gaulle Airport, ensuring I boarded my flight safely.Thanks to compassionate Japan Airlines flight attendants who let me stretch my legs, I survived the long flight home. But the worst had only just begun.
Return to Japan: A System Under Stress
After one sleepless night in Tokyo, my condition worsened. The pain intensified; I could hardly stand. On the third day, I called for an ambulance. What followed was a chilling reminder of pandemic-era caution: four hospitals refused to admit me because of my recent travel history abroad. Thankfully, a fifth—Shuwa Hospital—finally accepted me. Their doctors, after careful evaluation, suspected Guillain-Barré Syndrome (GBS), a rare but dangerous autoimmune disorder in which the immune system attacks the nerves.
I was referred to Dokkyo Medical University Hospital, where I was admitted immediately. There, the true scope of my illness became clear. The paralysis wasn’t limited to my legs. It reached my face—I could no longer smile, blink normally, or slurp noodles. I learned that GBS could spread further to the throat and lungs, potentially making swallowing and breathing impossible. Fortunately, that line wasn’t crossed. With early facial rehabilitation by a Speech-Language-Hearing Therapist (ST), I gradually regained facial mobility.
Pain, Posture, and the Paralysis of Daily Life
Despite treatment, I endured constant, excruciating pain—burning sensations that intensified while lying down. Sitting at the edge of the bed offered temporary relief. For three straight weeks, I lived in a reclining wheelchair, night and day. This unnatural posture caused painful swelling of feets, requiring daily massages.
Adding to the ordeal was severe constipation, which began on the night of the first attack in Paris. Despite maximum medication, I didn’t pass a bowel movement for nearly two weeks. These overlapping symptoms pushed my body and spirit to the brink.
Medical intervention—including immunoglobulin and steroid pulse therapies—stabilized my condition. But by then, I had lost 13 kilograms, and my muscles had severely atrophied. I could not walk or stand. My life was now centered on the slow, uncertain road of rehabilitation.
The Quiet Heroes: PTs and OTs
I was transferred to Amakusa Rehabilitation Hospital, part of the Keiaikai medical group, on November 8, to begin the long road to recovery. What followed was nothing short of a miracle made possible by rehabilitation therapy. At Amakusa, I was assigned a doctor, physical therapists (PTs), and occupational therapists (OTs). Each day, I underwent three hours of intensive therapy, focused on rebuilding strength, retraining my muscles, and restoring basic motor functions.
The PTs worked patiently to awaken my paralyzed limbs, guiding me through exercises that began with the simplest motions. The OT helped me regain the ability to move with coordination, maintain balance, and gradually restore independence in daily life.
These therapists weren’t just professionals—they were lifelines. They believed in my recovery even when I couldn’t. Thanks to their work, I gradually regained the ability to stand, then walk, and eventually begin reclaiming my normal life.
On February 7, 2025, I was discharged from the hospital. One month later, I traveled to New York to cover an international conference and resumed my professional duties. While I still rely on a cane and have not fully regained sensation in my hands and feet, I have returned to the field with a renewed sense of purpose and fulfillment—thanks to the unwavering support of my project partner and colleagues.
What GBS Taught Me: Health, Humanity, and Responsibility
As a journalist who covers nuclear abolition and the Sustainable Development Goals (SDGs), I often report on humanitarian crises in places like Ukraine, Sudan, and Yemen. My illness forced me to reexamine those reports—not just as stories to write, but as lives to relate to.
One of the concepts that has always guided my work is a Buddhist term called “Doku (同苦)” that means “to suffer together” or empathic solidarity. This idea—that we grow as people and as a global society when we share in one another’s pain—has taken on even deeper meaning for me now. I often put myself in the shoes of those featured in our reports, I feel how terrifying it must be to face illness or injury without access to care.That’s why I feel devastated when I see humanitarian funding being slashed, especially by major powers like the United States.These are not abstract numbers; they are decisions with human consequences.
I survived because I happened to have access to one of the world’s most advanced healthcare systems. And that makes me even more determined to advocate for equitable global healthcare access.
A Debt of Gratitude
Throughout this journey, I’ve been saved by a network of people who went above and beyond:
- The emergency doctor and nurses in Paris who acted quickly
- Mr. Kevin Lin, who stood by me from the onset and ensured I returned safely to Japan
- The Japan Airlines crew who treated me with compassion
- The ambulance staff in Japan who didn’t give up until a hospital said “yes”
- The medical team at Seiwa Hospital who saw through the fog of uncertainty
- The medical team at Dokkyo Medical University(DMU) Hospital who diagnosed and treated me decisively
- The nurses who endured my sleepless nights, acute pain, and helplessness
- And above all, the STs, PTs, OTs, and nurses at DMU Hospital and Amakusa Rehabilitation Hospital who gave me a second chance at life
Their work rarely makes headlines. But without them, people like me don’t recover.
This is more than a story about surviving GBS. It’s a testament to the quiet miracle of rehabilitation, the humanity of caregivers, and the shared responsibility we all hold to make healing possible—for everyone, everywhere.
Katsuhiro Asagiri is a Tokyo-based journalist and the President of INPS Japan. He coordinates international media projects with likeminded news agencies and journalists that focus on Nuclear Disarmament and Sustainable Development Goals (SDGs) .
INPS Japan