Positive Expectant Faith or Magical Thinking?

By: Loolwa Khazzoom, Founder, Dancing with Pain

December 10th, 2008 • Patient AdvocacyPrint Print

Where is the line between positive expectant faith and magical thinking? I have done my best to stay positive and focused on my mom’s ability to heal.  But I also want to face the possibility that she may not come back as her full self.

My mom continues to fluctuate between lucid and deranged, sometimes in the same sentence. I miss her as if she were dead, despite the fact that I talk to her every day — morning, afternoon, and night.  With rare exceptions (that last a few minutes to half an hour at most), the woman I’m speaking with is not exactly my mother, but rather, is bits and pieces of her — a childlike version who needs to keep conversations to the basics about eating, pooping, taking medication, and getting up out of bed.

Last night and this morning, my mom’s mental state seemed to have deteriorated. She could barely form words at all, much less a string of words that made sense. Very concerned, I asked to speak again with a neurology doctor.

This particular doctor (I’m frequently given a different representative of the same team) informed me that my mother has brain damage on the left side of her head, some or all of which “may be permanent damage.”  The injury to her head, he continued, was “the scary kind of injury,” the kind that often kills or permanently alters the person injured.

It has been over three weeks, and this is the first time I have received this information, despite speaking with doctors daily about my mother’s condition.  On the one hand, his prognosis made me cry.  On the other hand, I felt relieved to finally understand what the hell was going on.  Brain damage.  Of course.  Now it all makes sense — her inability to form words, her incessant confusion, her nightmarish delusions, her struggle to remember things that happened a long time ago or just a few minutes ago.

Fortunately for the artist in her, the right side of her brain is just fine.

Regardless, what do I do with this information?  I have not quite allowed myself to process my own feelings about everything that has transpired, because I’ve been so consumed with taking care of my mom. But last night, I woke up with a panic attack.  I reached for the phone — to call my mom, as I always do when I get these attacks in the middle of the night.

Amidst my feeling that I was about to collapse and go unconscious, I had the sinking realization that there was no one to call. After pacing back and forth, trying to calm down my system, I stopped clutching the phone and put it back on the hook. I couldn’t sleep the rest of the night.

Then today, when I was pleased with myself for finishing a challenging grant proposal on Jewish multiculturalism, the person I wanted to call was my mom. She would have been so proud of me. I tried calling her, actually, but I think I totally stressed her out just talking about the possibility of talking about it. She grasped at words like “You’re…splitting…me in…half.” Oops.

I’m feeling the need to sit with my sadness and grief, to allow for the possibility that my mom won’t get much better than this. I’m feeling exhausted from putting forth a constant stream of positive energy and belief that she will totally heal. But does my sitting with the negative possibility undermine healing forces coming her way? Will I unconsciously transmit discouraging vibes when I speak with her? How exactly does all this work?

I think I need an affirmation book about healing from illness. If I keep reading someone else’s affirmations, perhaps it will boost my own ability to continue believing. For now, I’m feeling that my own source of inspiration and strength is depleted. Maybe I just need to stop being the cheerleader for a little while and start being the daughter who is grieving about this tragic turn of events.


Marie December 12th, 2008

I highly, highly, highly recommend the book “My Stroke of Insight”, written by a brain scientist who had a stroke, and her ability to access the left side of her brain. It will give you hope and ideas for helping your mom.

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