Unseen Suffering
When I was diagnosed with Parkinson’s disease [1] and lost the ability to move my body as I wished, I was shocked by how unaware I had been of the suffering caused by illnesses that fill this world and the lack of understanding towards them. The purpose of this article is to convey the shock I experienced, to speak on behalf of those who cannot express their own suffering, and to seek a path to relief from such suffering.
The Modern Sisyphus
Before undergoing deep brain stimulation surgery [2], I was taking L-dopa [3] pills for my Parkinson’s disease, and the effects would wear off during sleep, making every morning a struggle. When I woke up, it would take me a full minute to move my own hand just two inches. Even so, I had to take my medication, forcing my body to move, which caused excruciating pain throughout my body as if it were falling apart. The tremors caused by this disease often led me to spill my medication on the floor. Moreover, every morning, my body became increasingly difficult to move. I was overwhelmed by intense anxiety and despair, wondering what would become of my life in this pitch-black darkness. It was truly an ordeal akin to the myth of Sisyphus [4].
I had never considered how difficult it was to repeat this every morning. Such experiences were not described in any psychology or medical literature. I keenly felt that modern science was completely oblivious to the existential suffering of human beings.
Life is a One-Way Street
However, upon reflection, it made sense. It’s fundamentally impossible for a patient whose symptoms have progressed to such an extent to recover. The mere fact that I can report such an experience is an unbelievable stroke of luck. When I realized this, I was genuinely astonished.
What was even more shocking to me was that my experience was not unique at all. In fact, countless people are going through similar experiences. However, most of these individuals are unable to express their experiences in their own words.
Surrounded
The elderly woman in the following story is one such person. After my surgery, while I was walking around the ward for rehabilitation, I noticed an elderly woman in a wheelchair in a patient room from the hallway. What caught my eye was that her upper body was completely bent and frozen in mid-air. It seemed that she had become immobile while trying to return her toothbrush to the shelf in her room.
From my own experience, I immediately recognized that she was a patient with severe Parkinson’s disease. Due to the lack of dopamine [5], her core muscles, such as her abdominal and back muscles [6], were not functioning, and it was evident that her upper body was unsupported. I also intuitively understood that she was in tremendous pain and suffering. Becoming immobile in the middle of a movement like this is extremely dangerous. Without maintaining posture, there’s a risk of losing balance and sustaining serious injuries. However, Parkinson’s disease makes maintaining posture a conscious effort accompanied by immense suffering.
Thinking that this situation couldn’t continue, I returned her toothbrush to the shelf. Then, she said, “Water…” I brought a pitcher to her mouth, and she slowly drank the water. Just imagining how long she had been suffering in that state made me dizzy.
A Mountain of Garbage
Afterward, concerned about her, I would occasionally check on her. One day, when I went to her room, an unbelievable sight unfolded before my eyes. Her room was located across the hallway from the nurses’ station. A mountain of medical waste bags was piled up at the exit of her room. The bags were visible from inside the room.
If I were a patient in that room, I would have immediately asked them to be removed. However, perhaps due to difficulty communicating, the bags remained there until the next morning. I thought this was terrible. Coincidentally, an acquaintance of mine worked as a staff member at the hospital. I contacted them and arranged for the garbage bags to be removed.
A Small Revenge
Even then, my anger hadn’t subsided. However, at that time, we were in the midst of the sixth wave of the COVID-19 pandemic. The ward staff seemed extremely busy dealing with the situation. I couldn’t blame them.
In the end, I left the ward and went to the hospital shop. There, I bought beautiful dried roses and brought them to her room. I remember saying something like, “Someone is watching. Please don’t give up.” I wanted to do something special for her.
That day, as usual, there was almost no reaction. But the next day, when I went to check on her, she turned her supposedly immobile body towards me. Furthermore, she clearly said, “Thank you.” I was astonished.
Sound Observer
The English translation of “Kannon” or “Kanzeon Bosatsu” is “Sound Observer.” This is a very profound translation. I once heard that Kannon is a benevolent being who surveys the world, always listening to the suffering of sentient beings and their cries for help. There is also a famous anecdote about how Shakyamuni, upon leaving his birthplace and witnessing illness, old age, death, and the unbearable suffering that accompanies them for the first time, decided to renounce the world. It was through my encounter with this patient that I truly understood the meaning of these anecdotes. Through this experience, I grasped the weight of the words “Sentient beings are boundless, I vow to liberate them all” [7].
We Need to be Seen
The late poet, Mr. Tomihiro Hoshino, suffered a spinal cord injury in an accident, leaving him unable to move his body from the neck down. In his first book, “Love, from the Deepest Abyss,” there is a very striking passage:
The suffering of not being able to forgive others,
Even when I myself am not righteous,
Far surpassed the suffering of
Not being able to move my hands and feet.
Following his example, I would like to say:
The suffering of not being understood by others,
Even when I don’t understand them myself,
Far surpassed the suffering of
Not being able to move my hands and feet.
I once heard that each of the countless hands of the Thousand-Armed Kannon holds something necessary for each person in need of salvation. Indeed, for us humans, who are social animals, there is no path to salvation other than empathy for each other’s suffering and actions based on that empathy. I am writing this post now to give voice to the voiceless. What can you do?
Notes
- Parkinson’s disease: A progressive neurodegenerative disease in which nerve cells in the brain gradually degenerate, causing motor dysfunction.
- L-dopa: A substance used to treat Parkinson’s disease that is converted into dopamine in the brain.
- Deep brain stimulation: A surgical procedure to improve the symptoms of Parkinson’s disease by implanting electrodes in specific areas of the brain and delivering electrical stimulation.
- The myth of Sisyphus: A Greek myth in which Sisyphus is eternally punished by having to roll a large rock up a hill, only for it to roll back down each time he nears the top. It is used as a symbol of endless, futile labor.
- Dopamine: A substance that acts as a neurotransmitter in the brain. In Parkinson’s disease, a lack of dopamine causes motor dysfunction.
- Core: The muscle group that forms the central part of the torso.
- Sentient beings are boundless, I vow to liberate them all: A Buddhist phrase meaning, “I vow to save all limitless sentient beings.” It represents the vow of the Bodhisattva Kannon.