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Charlotte Forster's avatar

So great to hear you and see you—looking beautiful—and moving your arm! This connection you have with people is life saving. Not just for you but for us. It's this caring so deeply for one another, strangers as well as family and friends, that gives meaning and strength and universality.

I was hospitalized long ago with Guillain-Barré, which is a mysterious autoimmune syndrome where the nerves are under attack and the brain stops communicating with the body. Gradually the whole body is paralyzed and things like blood pressure and breathing are affected, speech is slurred, even the muscles of my face froze.

I'm essentially back to normal now, but I remember what it's like to be disconnected from my body. Wondering where I—the real me—was located. As a metaphor, I imagine tapping on a piano key over and over and getting so sound, no feedback. I was already partly dead, already nowhere.

There was a point when I realized that I would likely die and I was panicked by how mundane it was (and therefore how forgettable my life was). But the panic was all internal. I've never shared this with anyone before. There should be drama, an epiphany, MEANING, or just a way for me to give my body the most basic instruction: don't self-destruct. There was an absurdity about losing myself this way, and also a sense of failure or disappointment. Even embarrassment. My terror was matched by a sense of the futility of being afraid. I was being canceled out.

I haven't entirely lost that feeling (death is near/control is an illusion) though I have the luxury of being relatively healthy and able to distract myself now. What feels better than distraction, though, is love, kindness, and sharing ourselves with one another.

Your writing connects me back to myself, and then back out to you and your loving readers, and beyond, to anyone experiencing the human condition. There's a rhythm I'm coming to depend on here. Feeling the terror (rather than avoiding it) and then converting it to love. xx

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Claudia Cevenini's avatar

Dear Hanif, after reading your last few desolate and desperate posts, I was paralyzed into not being able to comment. I know how cliches and commonplace reassurances sound to those who are depressed or in pain. When I am face to face with patients in the depths of whatever horrors they are going through I can listen, make my empathy felt through my presence, hold their hands. Life is often unfair and, at times, unbearable with no silver lining. How do I hate those two words - silver lining- some sort of shitty consolation prize. However. You are loved beyond measure by family and friends. You have a loyal partner (indulge me in a bit of patriotism, she is Italian so I believe she is fabulous), your intellect is intact and there is life beyond what you are going through. Please believe there is life. The patients who do best are the ones with something to look forward to: your house, your writing, your London. A few days ago I went for my biannual oncological tests. While I wait for the results, I fall into an all enveloping anxiety, the brunt of which is borne by my husband. He said to me: you know, one day something will happen. We are not special, you and I. It will happen to us. So, in the meantime, live to the best of your abilities. This reminder lifted me up. I am not special but I have this imperfect life. And it is my responsibility to live it.

You will get to where you want to be. Imagine it. Keep taking drugs that make you believe it if that is what you need. Can’t wait for the book. Will buy a stack to give as presents. One last thing. Please eat.

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