Whatever It Takes

Guilt implies ill intent.  Doesn’t it?  Don’t you usually feel guilty when you’ve done something you knew you shouldn’t have, but went ahead anyway?  Since words mean so much to me, I’ve decided to run with this, and change my thinking about letting Cory walk to the store that day, which ultimately resulted in her death.

Should I feel guilty?  Did I let her go knowing I shouldn’t?  No, and no. 

I didn’t think twice about letting her go.  It was a second on my mind, two at the most.  This angers me to no end, because there were so many other decisions for her during her illness that I spent weeks deliberating over. 

Here was one:

  During Cory’s sophomore year in high school, she began to display some concerning behaviors of extreme anxiety, fear, agitation, hostility, confusion, and breaks from reality.  She eventually shared she had been hearing voices for most of a year.

During the next year, her mental health deteriorated to the point she was uncomfortable in public, couldn’t sleep, stopped bathing, and became completely disconnected from reality.  She at times believed “agents” were after her, she had killed some of them, her food was being tampered with, and she was under constant surveillance.    Her affect had become completely flat.  At the worst point, a team of psychiatrists recommended Electro Convulsive Treatments (ECT) to bring her out of her deep and relentless psychosis. 

Whether or not to have Cory undergo ECT was one of the hardest decisions I’ve ever had to make.  I researched the procedure in several different ways.  I asked countless questions of my daughter’s mental health professionals.  I read everything on the topic I could get my hands on and spent many sleepless nights on the internet.

ECT, formally known as shock treatment, has a bad reputation in large part due to the media’s portrayal of its use in prior decades.   Many advances over the years have dramatically increased the safety of the procedure and lessened the amount and severity of side effects.  Research shows that long term memory loss and decline in cognitive functioning are not typical side effects.  The most common side effect is short term memory loss, particularly the days before, during, and after treatments.

 Dr. Z was kind enough to provide (with the patient’s permission) the contact information of a woman who had been undergoing maintenance ECT for several years.  I had the opportunity to ask questions and gain the perspective of someone who had actually gone through the procedure.

  I also asked close friends and family members for their opinions, which were widely varied.  Some were too afraid of the procedure to consider the benefits, while others felt it was certainly worth a try. 

 I did some comparison by asking her psychiatrist to rate outcomes of all possible alternatives, including doing nothing.  He stated to continue experimenting with medication would likely be a long process during which a lot of damage to her brain could take place.  He believed that doing nothing would be very dangerous; she was losing brain matter every day she remained in this psychotic state.  He urged me to articulate my worst fear, which was that she would lose some of her long term memories or cognitive functioning.  He encouraged me to compare those worst case scenarios with the inevitable decline of daily functioning that continued psychosis would bring.  He warned me that if she went into full blown schizophrenia, memory loss would be the least of our concerns.

  I then asked Dr. Z what he would do if it were his daughter.  He replied without hesitation that he would begin ECT as soon as possible, before any more ground was lost.  He went further by saying if he knew that sometime in his life he would develop Schizoaffective Disorder, he would travel to the nearest tattoo parlor and have “Give me ECT” tattooed across his chest.

When pressed for his advice, my kind and introspective father shared the following words of wisdom, “Nikki, what we’ve got to remember is that she is suffering terribly.  If this thing they want to try may help her and we think to the best of our knowledge it won’t hurt her, we’ve got to try to help her.  She has no quality of life right now.  No one should have to live with that kind of fear.”  He paused, and then added, “Everything in life is a risk.  It’s whether or not you intend for her to be harmed that matters.  We never know when it’s our time.  People die in car accidents everyday.  She could die crossing the street.  If we think this could help her, I think it’s worth a try.”

  That was the final perspective I needed.  I found a quiet place, stopped the tennis match in my head, and put myself in my daughter’s shoes.  What would it feel like to have intrusive voices interrupting my thoughts and conversations with others?  What would it feel like to be afraid in my own home almost all the time?  What would it be like to be so caught up in delusions that I couldn’t care for myself or tolerate being around other people?  What would I want someone to do for me?  As I considered these questions, Cory's miserable face rose in my mind, tear-stained, eyes wide, with one request, one need above any other, "Mom, please just make the voices stop."

 My daughter received  6 rounds of ECT in the next 2 weeks.  By the third treatment, the voices had stopped and the agents were gone.  She was brighter and happier than I had seen her in over two years.  She had no side effects other than the expected short term memory loss.  And frankly, her memories from those days weren't something she'd want to remember in the first place.

ECT was not a cure.  The voices, delusions, and mood episodes returned within a couple of months, but never as severe as before her treatments.  I had made the best decision I knew to make at the time, with all the information I had.  I could live with that. 

 Now why can't I do the same about letting her go the the store?  I'm gonna reread this a few times, and really, really try to get there.