Since 2024, I have been undergoing neurological investigations to identify the condition I have, which involves hypersensitivity to sensory stimuli.
I can no longer leave my house, watch videos, or listen to music. My legs give way, and I struggle to support my own body, open my eyes, or speak. My voice has changed completely.
I am currently undergoing rehabilitation, including physical therapy, speech therapy, sensory integration therapy with an occupational therapist, and psychological support to help me navigate this phase of my life.
I spend almost all my time in my bedroom, and I get tired very easily, even from doing simple things.
Throughout the progression of my symptoms and during these more than 18 months of barely leaving my home, I have still found ways to create, connect, and give back.
I folded 1,000 origami Tsurus on my own, and then another 1,000 together with family and friends as part of a fundraising campaign. Half of the money raised went toward my treatment, while the other half was donated to an organization that supports people living with rare diseases.
I also wrote a book and created a song. I cannot listen to the song myself, but a friend has already prepared it for the day when I am able to hear it.
Through Substack, I have made new friends and discovered meaningful connections, even while physically isolated.
This experience has also led me to reflect deeply on life and on how, whether we like it or not, we are social beings. We need connection, belonging, and the feeling that we are part of something bigger than ourselves.
Even when my world has become so small physically, I continue to find ways to create, connect with others, and make meaning out of what I am going through.
