Wednesday, August 24, 2016

#SOL16: Writing to Survive


Rob in the palliative care center, showing me a page in his notebook where he had written 
about his early childhood and the mirrors in his grandmother's home that left him feeling shaky. 
I had brought watercolors with me and we painted that day as he was so anxious.  He needed 
to be taken off the hi-flow oxygen machine in order to come home and he was scared that he 
would not be able to breathe well enough. Painting soothed him far more than the drugs.
In the opening to The Inner Voice of Love, Henri Nouwen says that in midst of great inner turmoil, "writing became part of my struggle for survival" (p. xvi). That resonated so. Although I sent email posts to family and friends during Rob's initial diagnosis in the fall, I rarely posted on my blog. I worried that if I explored how I was truly feeling it might hurt Rob who was also a reader of my blog. In late November I did post (Noli timere) and Rob read where I worried about Devon and it upset him. I felt so badly that my words could add any type of injury. I also was frightened to name what I might not want to know. I still gathered hope about me through those fall months.

By late January though, my need to write, to eek out some meaning and narrate what I could name became paramount. I remember one of the posts I wrote in January that started the writing in earnest. I had been sitting next to Rob's bed as he slept and it was a weekend. One of the truest things that happens in hospitals on weekends is that all who can leave, do.  And only the very sick and those visiting remain. It was twilight I think and the door to Rob's room on the cancer ward was open as it usually was and a sound from the hallway caught my ear. I looked up and connected briefly with a man who was leaving an adjacent room. We quickly turned away from one another. A painful truth we knew was left dangling there like an unwanted visitor and I began to write to explore what that visitor might have to say.

I'm still exploring.


I began writing in earnest that week and by then Rob's hold on reality was weak. He was more often than not heavily drugged with dilaudid in addition to the 200 mcg fentanyl transdermal patch that was changed every 72 hours. Fir weeks after Rob died, I still had reminders through the month of March indicating when I should change the patch. At the rehab center where Rob had spent ten days from mid-January following spinal surgery, the increase in dilaudid to compensate for the increased pain happened largely unabated. This was a reckless place and certainly in hindsight also dangerous for someone as ill as Rob. I remember reminding a nurse to use an alcohol wipe prior to injecting Rob with a blood thinner one afternoon. It was a reminder I should never have had to provide.

Rob's stay there was cut short when he contracted a third staph infection and required better medical care. Until then, he was still writing in his journal and reading each day. The last writings he would compose was a poem very much in the observational manner of William Carlos Williams--certainly a hero to Rob. He wrote it hours after we had eaten breakfast together on a Friday morning and just two days before he would return to the hospital, fevered and incoherent once again from staph. A week after he was readmitted, Devon and I collected the Walter Benjamin books and Rob's other personal belongings from the rehab and the books remain to this day on a shelf in our home. Rob had been reading Benjamin all fall and recorded notes, poems, and records of his fight against the staph infections, the surgeries he underwent, and the scant cancer treatment he experienced in several notebooks in an effort to keep his mind alert and active.  Each drug he took was dutifully recorded throughout October.

By January's end, Rob could no longer read or write, although as the last staph infection faded he did rally a bit and ask that I read to him from a Norse mythology book and Irish doctor had given to him. But my husband was so far removed from the towering intellect he once was. It was then that I felt that no further harm would come to him if I wrote on and posted on this blog and I so needed to do so.

And so I did. Like Nouwen suggests writing became a means for my struggle to survive during these last eight months as I grapple with his illness, his death and my life.  


  1. you've helped here give words to some of my older writings. "eek out some meaning" ~ through reading your posts, I've coming to realize that is what my attempts were many of the times - to narrate and find a key or pearl of wisdom to take with me the rest of my days, other times the writing enabled me to purge the anger within and transform it into something constructive I cold move on with. Thanks again for sharing your journey. We learn, heal and grow from one another

    1. I'm glad the words resonated Jolie and you found them helpful. Thanks for letting me know.

  2. Henri, more than anyone else I read, seemed to have a desperate need to write to seek some path that satisfied his spirit. He seemed to find a home in his L'Arche community in Canada. From that point forward, the desperation in his writing seemed to disappear, and he felt like he had found a comfort. Write on, Mary Ann, write on!!

  3. Morning Mary Ann, today is Tuvia's unveiling and before I found your post I was thinking about how grateful I am that I never had to see Tuvia really losing himself. Your memories of Robs last months makes the Wright of your grieving so much heavier and harder to leave behind. I can never feel sorry for myself.
    Tuvia and I were spared. Thank God we both have writing.
    Thinking of you