Nine Nights

Nine Nights

For the last four nights, I have slept without the constant buzz of the hospital waking me every hour or so. No one has taken my vitals, no roommate has called out in pain, no team of staff has come to infuse me with a stranger’s blood. I am hoping that these last four nights are sticking. Bit by bit, along with every last trace of gooey adhesive left over from incision sites and blood draws, I am sloughing off the hospital from my skin.

On November 16th I had my fifth bowel operation. In the first four recoveries, my timing was outstanding. I rushed to get out of bed, do things for myself, eat the maximum allowable portions to prove that I could get home within three days. This time was different. Right away, I felt so sick. I mistook this feeling for the usual nausea of anaesthetic wearing off. I remained confident in my body’s ability to knit itself back together, in the reliability of my hunger, in my desire to heal if only to bust out of the hospital.

But by the second night I had become critically ill. Somewhere, somehow, my digestive system rebelled (I say somewhere, somehow, because the CT scan revealed very little). I developed what a hospital nutritionist later described to me as ileus. This word, so neat, so Greek, so elegant, could not be further from the actual experience: high fever, massive blood loss, low oxygen, constant vomiting, surgical sites in spasm. Panicked staff everywhere asking each other what was going on. To be honest, I only remember the staff in snippets. A week later, nurses, porters and cleaning staff who I only vaguely recognized stopped by one by one to tell me how much better I looked. They grinned with relief. I pretended to recall our interactions.

In this state, I was only body. A compromised, sick body. I was less afraid of dying than afraid it would never end. And when the nasal gastric (NG) tube started working and the pain meds finally effected peace and sedation in my body, I hovered in an in-between state for many hours. Here, I stretched out new corners in the fabric of my awareness. My cat came to visit (I didn’t tell anyone this detail until I got home). My fever didn’t drop much in the following days but my blood count and oxygen levels stabilized. As long as I had the NG tube suctioning my stomach, I felt mostly ok. And then the order came to remove it and my pain pump on the same day. That was Sunday.

Sunday night every single symptom of ileus came back, except worse. I was in more pain this time and more afraid that this was never going to end. Sunday night and the early hours of Monday morning were the worst medical experiences of my life. Many reasons contributed to this being the case (including the notes I scrawled at dawn two days later that I’m currently turning into a formal complaint about one particularly horrifying pain specialist). And I will no doubt say a lot more very publicly in time. But there is another piece, too. I don’t want to romanticize suffering (either in its horrors or in my stoic endurance) but there is something soothing in this sharpening of focus. Every aspect of my being was focused on the single outcome of survival. Trivial concerns float away and I am solidified, untethered from the usual anxieties of daily life. If I could preserve this particular sensation without having to relive the trauma, I definitely would. And there was a high. This time, after my NG tube was reinserted (horror) and started working (joy) and my pain pump button firmly reinstated in its rightful place between my thumb and forefinger, there had never been a sweeter peace.

This time, staff gingerly peeked around the corner of my bed before approaching, exclaiming things like “You’re smiling!” before reengaging me. This time, we made a plan that we all agreed upon that allowed time for pain management and slowly increasing mobility and cautious consumption of nutrients (first through a picc line, then through my mouth). By the ninth evening I ate a sandwich. It hurt a lot as it stretched my surgically compromised digestive tract but my body was grateful. I processed, digested and slept the sleep that only comes with starch intake.

After nine nights, my fever was gone. My surgery was proclaimed successful. I finally came home.

 

About the author: Julie Devaney is a patient activist living in Toronto. She is the author of My Leaky Body (Goose Lane Editions: 2012) and co-editor of MESS: The Hospital Anthology (Tightrope Books: 2014). My Leaky Body was one of Quill and Quire’s Top Five Non-fiction books of 2012. Julie was named a Woman Health Hero by Best Health Magazine in 2011 and has been profiled on CBC Radio’s White Coat, Black Art and The Current, in Chatelaine and the Toronto Star. Her writing has appeared in The Globe and Mail, Toronto Life and numerous anthologies. Julie has given hundreds of presentations at medical schools, nursing conferences and theatres throughout Canada and in the US and the UK using participatory techniques with patients and professionals to formulate strategies for change and innovation in healthcare. Her work at the University Health Network in Toronto has transformed real patient stories into staff training.
Category: Health Update
  • Tamara November 29, 2016, 6:29 pm

    So glad to hear you’re home. Thank you for sharing your experience with such honesty and openness.

    • Julie November 29, 2016, 6:34 pm

      Thanks so much Tamara!

  • William Shattuck November 29, 2016, 6:50 pm

    Julie
    I salute you…keep up the good fight, but keep some meds or cannabis for pain management.
    Cheers
    Bill

    • Julie November 29, 2016, 7:03 pm

      Definitely! Thanks Bill. Pain management is priority #1.

  • Kate Barker November 29, 2016, 7:30 pm

    Welcome home. You write beautifully about what most people won’t talk about. Hope your recovery is speedy. Let me know when you want a lasagna delivered.

    • Julie November 29, 2016, 7:31 pm

      Yum! I will!

  • Judith Cane November 29, 2016, 7:34 pm

    Wow, I was literally gripping the edge of my seat. What an ordeal! I’m glad you are home and healing.

    • Julie November 29, 2016, 7:43 pm

      Me too, Judith! Thanks!

  • Mel November 29, 2016, 8:50 pm

    ‘. I was less afraid of dying than afraid it would never end.’ Would sum up my 8 month stint 7 years ago. You have described in such accuracy an experience I could of sworn was my own.
    You have survived! Continue to heal and get stronger.
    Thank you for sharing.

    • Julie November 29, 2016, 8:55 pm

      Hi Mel, that sounds terrible. I’m sorry you had that experience and I’m glad I could capture mine in a way you relate to. Wishing you lots of health and strength.

  • Vindra December 3, 2016, 6:54 pm

    Julie,
    I am so glad that you are home and healing. Never knew how seriously ill you were after surgery.
    Best to you and Blair, it must have been so scary for both of you.

    Our love,
    Vindra and Misty

    • Julie December 14, 2016, 8:58 am

      Much love back and we will see you soon xoxo

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