The story of how a person who lost so much to Behçet's disease was saved by Gen Hoshino

I developed Behçet's disease in the autumn of my twenty-seventh year. My life up until then was, to put it bluntly, reckless. A year after I became an independent writer, I was so terrified of losing work that I accepted every job that came my way. I would write manuscripts during the day and different ones at night. I went to bed at 3:00 AM every night. I would wake up at 6:00 AM and write again. Although I was losing weight little by little, I was strangely able to keep going on three hours of sleep a day, and I believed that as long as I had the grit, I could overcome anything.

I wanted to be someone called a genius. If I were, I wouldn't have to struggle. But because I lacked talent, I felt I had to work harder than anyone else. Driven by that anxiety, I found comfort in the fact that I was working more and trying harder than others. I pretended not to notice that my body was screaming in silence. I didn't realize that was the root of everything.

The first sign that something was wrong was when I collapsed at work. As people around me shouted, "Call an ambulance!", I was driven by a sense of duty, thinking, "I have to call an ambulance quickly!", and I woke up. When I opened my eyes, I saw myself looking up at the ceiling, and I finally realized that it was me who had collapsed. I couldn't put strength into my body properly, and I couldn't even stand. I crawled over and collapsed onto the nearest sofa. Then, after resting a little, I went back to work as if it were the most natural thing to do. Although I was told I could go home, a misplaced sense of responsibility blocked me from doing so. I went home, tormented by the regret that I had caused trouble for those around me.

From the next day, I started to feel a small sense of discomfort in my eyes. Black spots appeared in my field of vision, it became harder to recover from fatigue, and I felt a heaviness deep inside my eyes. My body felt unbearably heavy. I thought I would recover if I just rested a little. The SOS signals my body was sending could not overcome the anxiety born from my inferiority complex. But I never imagined that I would lose my sight.

One morning, when I woke up, my vision in both eyes had turned black. I could see the world faintly through the gaps between the black masses. It felt unreal, as if I were in a dream. And so, in a world painted black, I walked to the hospital. Oh, I couldn't see anything. The path that usually took about 15 minutes took me over an hour that time.

I arrived at the hospital safely. When I entered the examination room, the doctor whispered, "I cannot examine you at such a small hospital." They immediately wrote a referral letter, and I headed straight to the university hospital.

In the dim atmosphere that permeated the hospital, my name was called, and I entered the examination room. They took X-rays and drew blood. They shone several lights into my eyes, making me feel sick deep inside. Gradually, I was overcome by such nausea that I couldn't stand, and while feeling like I was going to vomit, I was wheeled around the hospital in a wheelchair. This sense of emptiness at being unable to do anything only fueled my anxiety. I couldn't help but worry about the diagnosis. If the worst happened, I might even have to be hospitalized. After several hours of full-body examinations, when the doctor in the examination room told me, "It is Behçet's disease," the words didn't quite connect in my mind.

Designated intractable disease. Unknown cause. No cure. What kind of disease is Behçet's disease? I was speechless in the face of a disease name I had never heard before. While I was stunned, they talked about future treatment methods, but none of it reached my ears.

None of it felt real. Intractable diseases are things from dramas and movies. Even if I had opportunities to see characters suffering in works of fiction, I never thought I would be on that side. Many dramas born in other worlds are moving. And the end of the story usually involves the protagonist passing away or showing a miraculous recovery. I had seen such stories many times.

Surely, no one ever imagines that they will become the one affected. Until I heard the diagnosis, I also thought they would tell me, "It's because you're working too hard, so you'll get better if you rest a little." Hope immediately turned into despair, and even though it was happening to me, it felt like an alarm ringing far away.

I was finished. From now on, I would have to live with a disease that would never be cured. What could I find joy in to keep living? I couldn't even properly draw the character for "hope," and I felt as if I had been left all alone in the world.

For the first few weeks after the onset, everything in my daily life became impossible. I couldn't see the computer screen. I was afraid to go down the stairs. My joints ached so much I couldn't even get up. Just lying in bed was all I could manage. The feeling of being unable to do anything is terribly cold. Every day, I felt like I was slowly becoming transparent, and I spent my nights unable to stop the tears.

But there were people who supported me. A friend who worried about me and brought me food. A client who transferred money beyond my wages, saying, "Use this for your living and medical expenses." My family who stayed by my side without saying a word. People who encouraged me with messages of concern.

Thanks to those people, I managed to return to society a month and a half after the onset. I couldn't work full-time, but I gradually returned to my daily life.

Even so, at first, I wanted to be cured. I wanted to go back to how I was. I wanted to catch up to the person I was back then. However, the disease didn't subside as I had hoped. Even with injections in my eyes, eye drops, and medication, my physical condition continued to fluctuate like waves, with good days and bad days alternating. The days filled with anxiety and despair made me feel like I wasn't really living.

About a year after developing Behçet's disease, I developed cataracts and glaucoma in my left eye. These were complications from the side effects of the eye injections. I was told that if I didn't have surgery, I would go blind, and an emergency surgery and hospitalization were decided. The surgery was a success, but my symptoms didn't stabilize easily. What was initially planned as a five-day hospital stay ended up lasting about two weeks.

I woke up at a set time and did the same things. I couldn't wash my hair, and I didn't feel like shaving. Attacked by the pain of having my normalcy taken away, and with lights-out time arriving immediately, the fear that I might never be able to leave the hospital grew little by little.

I couldn't vent my weakness to anyone, and I couldn't sleep well at night. In the dim hospital room late at night, I watched YouTube almost every day. That said, since I couldn't see the screen well, I was just playing the audio. I hated myself for having no choice but to cling to that. One day, Gen Hoshino appeared in my YouTube recommendations. "When I had a subarachnoid hemorrhage, I thought, 'I just have to turn this into material.' Otherwise, I wouldn't have been able to cope."

I remember it vaguely, but I'm sure those were the words. The moment I heard them, I thought, 'Oh, I see. So that's what it means to accept it,' and the tension in my shoulders melted away. I decided that I, too, would someday turn this physical condition, this pain, and this anxiety into a funny story. The moment I thought that, I felt as if I had finally accepted the fact that I had an intractable disease in the true sense.

The moment the YouTube video ended, I played Gen Hoshino's 'Why Don't You Play in Hell?' in the dim, late-night hospital room.

Perhaps this world really is hell. But even so, there must be a beauty that can only be found by those who push through it. The feeling after the song finished playing was strangely refreshing. The tears that overflowed were proof that I had accepted hell. Even if this place is hell, I can just turn it into a funny story and overcome the sad memories. While I was thinking about such things, it was already starting to get bright outside.

Five years have passed since that day, and I am gradually reclaiming my daily life. I cannot read text with my left eye, and I have lost most of the field of vision in my right eye. I can no longer play the soccer I loved, and I am still agonizing over whether to return my driver's license. There is much that has been stolen by this intractable disease, and there are days when I get sick of the never-ending life of hospital visits.

Even so, the days go on. Time flows on its own, and life is whittled away little by little. If that's the case, I want to be a person who can look at what is right in front of me, rather than what I have lost.

I wake up in the morning, greet my cat, and prepare food. I work, head to a nearby cafe in the afternoon to work some more, come home, and eat dinner. I take a bath, lounge around a bit, and count the good things from today before falling asleep. It is undoubtedly thanks to Behçet's disease that I learned that such casual moments are not something to be taken for granted.

The sounds that reach my ears. The wind that touches my cheeks. The aroma of cooking. The smiles of the people by my side. It is precisely because I once lost these things that I have come to properly savor them. I think of it as a quiet comeback story. There is no applause or spotlight, but my life has certainly changed. And I feel like I have become a little softer than before.

An intractable disease cannot be cured. Even so, I don't think there is any time to be in despair. There are things I want to do, and people I want to meet. There are words I want to write, and I even have the desire to deliver them to as many people as possible.

Living while holding onto loss as loss was much more flexible and beautiful than I had once thought. I want to enjoy this life as my current self. I want to savor all the joys and sorrows, and die while laughing, asking if this life was just a dream. Because of the onset of this intractable disease, the things I can do may have decreased. But the things I can feel have actually increased. For example, even if this place is hell, that is already enough. No, it is more than enough.