A moment that changed me: a rare condition left me fighting to breathe – and repaired my marriage

I was so short of breath I could spend only an hour a day with my 16-month-old son before having to lie down. But my husband’s love in the face of our crisis helped heal the fissures in our relationship

The ear, nose and throat consultant sits at his computer reviewing the footage of my laryngoscopy – a camera on a wire pushed up my nostril and down my throat. I sit with my hands in my lap. ​​The wait is terrible. I thought I had experienced various forms of “desperate” in my life but now I know what it truly means. If it turns out he can’t help, if he can’t tell me anything, then I will have to continue in this version of hell where tying my shoelaces or walking and talking leaves me gasping, starved for breath. And the hell isn’t even the extreme exhaustion, the incapacitation or the loss of the things I might yet have done as a healthy 40-year-old woman. Hell is knowing I, my body, is letting down my beloved 16-month-old son. I cannot bear it.

Then, the consultant waves me over to his computer. On the screen is a video of my trachea. The film is faintly obscene, my vocal cords pale and pulsating above the fleshy windpipe. Of course, even I know it shouldn’t be fleshy: there should be strong rings of cartilage, but mine is overgrown with scar tissue.

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