Written October 2, 2010  9:14 pm

Anita had a less strenuous day today.  She started the day with a session of Occupational Therapy(OT) in the morning during which she performed some range of motion exercises.  She had a vent weaning session thereafter during which she remained off the ventilator for over five (5) hours.  During the vent weaning session, she again talked with her sons and mother by telephone.  She was quite tired after the vent weaning session and rested for the remainder of the day.

I was able to breathe on my own for more than 5 hours today.  Excellent and exhausting.  Dizzying.  Breathing is hard work.  My weakened diaphragm feels lost under my slumped posture.  I try to sit up straight, but my poor muscle tone won't allow it.

I glimpse my reflection in a polished elevator door.  The power wheelchair is huge, swallowing my emaciated body.  It has become a part of me. A shell I wish I could hide in.  My hair is almost gone and my skin is the color of paste. I am dependent on people and machines for survival.  Despite this I feel an innate drive to fight.  Keep going.  Let go, let God. This too shall pass.  These thoughts roll through my head on a continuous loop.

The days here are hard and exhausting.  The dark is long, but the nights are short, never allowing enough hours to rest.  But I am here.  Hope is here too.  I see it in the determined faces of the patients.  I hear it in the kindness of the therapist's voices.  I feel it in the gentleness of the staff.  And I am surrounded by the support of families, staff and volunteers who roam these halls spreading hope.  Kindness is here and it is not hiding.  Now...for just a little while.