Friday, September 14, 2012


I'm Samn Wright (the "n" is silent.  It's a nickname. Think about it) and I'm Erin's primary caretaker these days.  In the spirit of these posts, I'll try not to edit as I write.  Anxiety is weighing heavily on my mind today; I note that it is the main symptom that Erin is exhibiting today.  Erin was on the edge of losing control of her emotions today as she struggled through her symptoms to wrangle with the Welfare bureaucracy, ya know, to get help eating regularly.  It struck me just how deeply this illness rocks the very core of life, down to the basic necessities we usually take for granted. 

It also struck me how much anxiety I'm feeling these days as well.  Erin just upped her dose of antibiotics, according to the prescribed schedule.  This is worrisome because the very drugs that fight the infection build up toxicity in her body from the dying bacteria.  That toxicity has the potential to intensify her symptoms and even kill her if she doesn't stay on top of it.  In other words, getting better means feeling worse.  And feeling worse today means "neuro" problems.

Let me give an example that Erin probably doesn't even remember.  I came home between jobs this afternoon to change clothes, and in that brief time tried to help Erin get a gluten-free lunch together.  Microwave mac 'n' cheese, yum!  But Erin couldn't read the instructions on the box, so I read them to her. 

"Heat for three minutes, stir, then heat for two minutes.  Can you remember that, Eb?"



"Freezer.  This go in freezer."

"Yes, but not now.  Now you're gonna eat it, so...  say it with me, heat for three minutes, stir, then heat for two minutes.  Good, now you say it by yourself."  Conscious of my need to leave for my next job, I put the package in the microwave and set it for three minutes, while listening to her recitation.

"Heat for...wait, what?"

"When this beeps, stir, then heat for two minutes," I sighed.  "Here.  I'll write it down."

 I wrote the remaining instructions on a hot pink sticky pad which I reserve precisely for this kind of occasion.  The doors of the house are dotted with hot pink reminders like, Take Your Key, and Don't Leave Without Shoes And Phone, so when Erin forgets what house she's in and runs for the door, she can get back in or at least be found later.  Of course, by the time I finished writing, the microwave had ticked through two minutes already.  Might as well stay for the other three.

When I finally leave, I'm still anxious that she'll forget how hot the food is and burn herself, or maybe just forget to eat it at all.  When I return I know I'll be anxious about how bad her neuro symptoms have gotten.  And those symptoms may make Erin anxious about what's going to happen to her next, or how she got into this strange house, or who is this strange man who won't let her leave.  Some nights, Erin's anxiety turns to panic and I have to physically restrain her from bolting out the door into the night.  Last night I fell asleep holding Erin down to prevent that very thing.  But, hey, at least one of us slept.

This last summer was very hard.  Erin demonstrated a nightmare circus of neurological problems over a two-month period that strangled at least one very important relationship in my life.  And I'm very anxious that, before the dawn, if things get much darker, one or both of us might break.  But there's nothing for it but to face that fear as it comes. To quote an old adage, "The only way out is through."  And to quote a very wise woman, Mary Anne Radmacher, - "Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow."

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