WHY I Wrote this book



Why I wrote this book

I wrote this book because I needed to have a story to tell myself about my illness and about the deaths of my parents (they both died shortly after I recovered).

I wrote the book because I needed to understand why doing my best to be a good person, a kind person, a careful person, didn’t protect me from severe illness. And none of what any of us did kept my parents from pain, fear, poverty, helplessness, and lonely deaths.

I wrote this book for my parents and for my children.

I wrote it for all the sick people (especially those dealing with Stills Disease) that I have no other access to. I wanted to say to them—with them, for them—that illness sucks. Being sick is horrible and lonely and boring and usually temporary. (Not always, damn it.)

I wrote the book with the hope that writing it would be useful not just for me but for others. I wrote the book to feel less alone.

I wrote the book because for a long time my illness held me captive in another country. Susan Sontag in her book, Illness as Metaphor, said:

“Illness is the night side of life… Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

From Illness as Metaphor, Farrar, Straus and Giroux, 1977


I wrote the book to identify myself as a former citizen of the night side of life.

I wrote the book because I wanted my time in the night side of life not to feel like an utter waste. I needed to ascribe meaning to it, my own personal meaning.

I wrote the book in order to revisit the memories that rested the most uneasily, the things that stopped me short, broke my heart.

I wrote the book in order to examine my illness through the lens of my life history. I wanted to apply my personal symbols to the story of my illness and my parents’ deaths.

I wrote the book to quiet the many demons who showed up in my dreams when I was in the hospital. I needed to know, understand, and not fear them. I needed to listen to them.

I wrote the book to try to contain the uncontainable.

I wrote the book to remind myself about the importance of surrender. I’m still not good at surrender. In the hospital and during my parents’ final illnesses, I tried to control everything, until I couldn’t do it anymore. I lost my grip, opened my hands, and surrendered. And that was the most freeing.

I wrote the book because I was awed by my own recovery from my illness and deeply saddened by my parents’ difficult final years.

I wrote the book because I had to give a voice to things I sense and still don’t quite understand.

I wrote this book because I love clarity and order, and, after I was ill and then my parents were ill and died, I longed for my world to settle itself back into some sensible, predictable order.

I wrote the book so that I could pretend that everything that happened made sense to me, because I needed it to make sense.

I wrote the book to name the unnamable.

I wrote the book to draw a circle around those hard years and set them aside.

I wrote the book because I wanted to. I wrote it because I had to.

I wrote the book to remember. I wrote the book to forget.

I wrote the book to understand how much I don’t understand.





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