04 April 2016

The paraphernalia of chronic illness surround me, rule my day, whether I am able to work and play or whether I am folding myself into blankets and soft cushions, there is a little box of medicines beside my bed that starts the day, there are excel sheets with lab data, folders of pathology reports, letters of discharge, certificates to show to the various agencies that finance my existence and so on.

Not a day without the effort to distinguish between being well and being ill but the boundaries are vague some mornings, I swing back and forth, almost violently at times, my mind wants one thing and my body dictates another.

Why do I continue to write this down, why this constant urge to find more words, another metaphor, a sharper description. Some times, all I want is spitting it out, in disgust and with anger. But on other days, I am simply driven by the need to document, to observe and to report, to myself, to the person I may be in weeks, months, years to come. To find a focus and not allow the impact to fade. 
The impact on body and mind. Before it all gets blurred and I should forget my healthy self completely. To let nothing stop me from being in love with my life. Being attentive, memorizing where I am today so that it all makes sense later. Because I forget easily how complete it all is despite the struggles and the sleepless nights, the exhausted evenings. There is no fight, no challenge, really. It may sound dramatic and impressive to some but no, I am simply alive, I am not fighting anything, there is nothing to win (or to lose). In all its difficulty, being ill has not really changed me, the way only I know myself. Maybe not yet, maybe it's too early. Maybe in the future. But today, I don't care.


  1. Ah- we are humans and some of us humans have a true and real need to document. Perhaps we feel that if we can define, we can understand that which may be impossible to understand but we keep trying and eventually, maybe we can at least come to an understanding of sorts.
    I've never understood the "battle" metaphor for disease. I HATE obituaries that say things like, "After a long and brave battle with..."
    It sets up a situation where we "win" if we are strong enough to overcome the disease and "lose" if we cannot. And let's face it- that's simply ridiculous and is a way to shame the person suffering. This is something I've thought a lot about.
    Keep documenting, dear Sabine. There are those of us out here who read and care. We cannot hold your hand in real life but we can hold it in our hearts.

  2. "In all its difficulty, being ill has not really changed me, the way only I know myself."

    Sending love to you, Sabine, as you live through this one day, still in love with your life. I was thinking of your river, wondering how it looks today.

  3. Do whatever you need to do. Write if it's any comfort, abandon it if it's a chore. Some experiences have words, and some just don't.

  4. I imagine you write because you are an artist, and writing is your medium. I hope the act and your work on these pages give you as much joy as they do to the rest of us. I am new to reading you; the first time I read you was last June after you had a terrible bout and hospital stay and you wrote the elephants in the forest post. http://interimarrangements.blogspot.com/2015/06/elephants-in-forest.html

    I couldn't believe how beautiful it was, how you took something so hard and transformed it into something surreal and lush and beautiful. I figure we all write about and document our lives because we are trying to transcend the mundane. You are just a little more successful at it than many of us.

  5. I think any writer, regardless of health issues, can ask some of the same questions -- why the writing? And when ill health is added to the mix, I can see how documentation might feel even more important. In any event, keep writing and documenting as long as it gives you satisfaction. Some of us process our worlds that way.

  6. We are each one small life out of seven billion lives on this planet, and yet you remind us how important and beautiful and compelling one life is.

  7. After one of the more horrific nights I've had of late with my daughter up seizing all night last night, I wrote it out. I managed to get an essay out of it that packed a punch. I felt drained and released and overjoyed. Keep writing. Your writing is powerful and beautiful for others -- I imagine it is so for you as well.

  8. This is a very fine record, and despite the difference in our circumstances, I do believe I am not alone is seeing my own life through your beautiful meditation on why we write ourselves down.