The Saga of Sam

The Saga of Sam

A normal schoolday.  At night while doing homework (catching up for last week), you develop what looks like writer's cramp.  By 8:00 P.M., muscle spasms are uncontrollable.  You are frightened.  All of your extremities, feet, legs, hands, arms are cramped.  You and I make another run to the ER.  I had to carry you to the car.  You're scared and I'm scared.  I know all your muscles are cramping and I know your heart is a muscle.  We fly down I-83, holding hands, breathing deeply, trying not to panic.  You are amazing.  You are taking 32 pills a day.  The ER doctor marvels as you recite your medications.  He has seen 18 year olds who can't remember one.  More blood work, more benadryl, no admission.  We come home at 1:00 A.M.  We are now well known at the ER.  The guards no longer stop me.  We pull up the ramp.  The nurses and doctors know us.  Josie is particularly supportive.

At the clinic on Tuesday, Dr. Schwarz adds a muscle relaxer, quinine, for the cramps.  Clearly, your blood chemistry is a delicate balance, and Dr. Schwarz is working overtime to manage it.  Dr. Schwarz made the mistake (just kidding) of letting us read the one text written on Wilson's Disease.  I can't believe she had it, but now I know enough to be dangerous.  There is a real lesson in human nature here.  Mom knew all the clinical issues, found the case most like ours, and quietly realized that that little boy died.  I read everything, found all the positive parts, and waited for the penicillamine to take effect.  I knew the penicillamine would take 3-6 months to work, that livers would regenerate, that full decoppering would take two years.  I ignored the parts on brain damage, renal failure, elephant skin side effects.  Things are not always what they appear to be.  Our minds have a unique way of twisting and turning facts to create fantasy.

By Wednesday, you were back to school, with a muscle spasm here or there, but generally coping well.  Granny had given us a weekend in Lancaster at Willow Valley for Christmas.  It was planned for this weekend.  Your blood test on Friday (April 22) was OK, so we left for a much needed weekend of relaxation; one of Dr. Schwarz's best prescriptions.