Neurofibromatosis, One Eye, and Learning to Stand Tall
The man who hid his face for twenty years, until his wife told him to own all of it
At eleven years old, Amit Ghose went into surgery to have his left eye removed. He came out of it into a school corridor where a group of boys told him he didn't need a Halloween mask because he already had a permanent one on his face.
Amit lives with neurofibromatosis, a condition that causes tumours to grow on and around his face. For years he hid the left side of it, angling every photograph and every conversation so only one side of him was ever visible. Cricket, played alone against a bin in his garden, became the one place he felt normal, and it was cricket that first shifted how his school saw him.
His father never treated him as different, and that refusal to wrap him in cotton wool became the foundation for everything that followed. Rejection followed Amit into adulthood, through dating apps and arranged marriage proposals, until he met his now-wife Piali. Three days into messaging her, she told him plainly, "I'm not going to marry half of your face. I'm going to marry all of you. So own it."
Quotes
"You have to learn to accept yourself before others can accept you. Love yourself before you can be loved."
This Episode Is About
Amit Ghose talks to Naroop Jhooti about growing up with neurofibromatosis, a condition that led to the removal of his left eye at eleven and years of hiding his face after a schoolyard joke that broke something in him.
The conversation moves from bullying and his father's quiet, unwavering support, to falling in love with his wife Piali after she told him to stop hiding, and into the private grief of an IVF process and a miscarriage he has never spoken about until now.
It ends somewhere most episodes don't, with a man admitting he still doesn't know what to do with the pain.
Who This Episode Is For
- Men living with a visible difference or disability
- Men who grew up feeling excluded or bullied
- Men going through IVF, miscarriage or fertility struggles
- South Asian men carrying family and cultural expectations
- Men who hide pain behind a coping face at work
What You'll Takeaway
- Confidence is built through repetition, not born overnight
- Real acceptance from others starts with accepting yourself first
- A father who treats a condition as normal gives his child permission to do the same
- Men rarely talk about the isolation of an IVF loss
- One sentence from someone who loves you can change your entire identity
- Silence around male grief often looks like just getting on with it
- Small, repeated moments of connection rebuild belonging faster than big gestures
