Day 5- The Faces of Guillain Barre: Mary's Story

Thursday, May 5, 2016 0 Comments
The Demon that is GBS

Way back in 1992, my husband had retired from the Air Force and we moved from Colorado to East Texas.  My daughters were 15 and 13. We helped my daddy on his farm and overdid our exercising.  We joked about having Guillain-BarreMy oldest daughter answered, “Guillain-Barre” for every question she didn’t know the answer to when I was helping her learn biology.
I am a nurse, had taken care of several GBS patients in ICU.  I saw them and their families trying to make the best of a very bad situation and used humor to get through hard days.  Little did I know at the time, this would come back full force, 20 years later.

I am a mother of a GBS patient.  She lives in Austin, I live in Denver. She called me one day.
Her: I don’t feel right.
Me: probably just a low level virus
Her: My legs are weak.  
Me: did you overdo your workout?
Her: My arms are heavy. 
Me:  have you been sick?
Her: The left side of my face is paralyzed. 
Me: Bell’s palsy – probably have a virus…but in my head I was shrieking – Oh, God, she has MS (multiple sclerosis), ALS (atrophic lateral sclerosis), Guillain-Barre, West Nile Virus (80% mortality rate)…Oh, God…OH, GOD…OH, GOD….NONE OF THIS IS GOOD!  MANY COMPLICATIONS, SHE COULD DIE……..OH. GOD.
Her: I feel like there is something in the back of my throat that I can’t swallow.  
Me:  How is your breathing? 
Her: I feel like I can’t catch my breath.
Me: You need to see someone, a neurologist preferably.  Something is going on and could be very serious, like MS, GBS, ALS…see someone TODAY and DON’T TAKE NO FOR AN ANSWER.  Go to the ER if you have to. Sadly, she had to fight to get care as her family doctor told her he couldn’t help her. No referral.  No concern.  My God! What do people do who cannot advocate for themselves or don’t have a medical advocate?  Her advocate, me, was 1500 miles away. I could only press upon her and her husband how important it was to get care NOW.  As I waited for my flight to leave Denver, I prayed as I had never prayed before, nor since.

I have been a registered nurse for forty (40) years.  I have worked in ICU, ED, and Surgery.  I have seen horrific things that happen to people and have done horrific things to people to help them.  The human condition is fraught with crisis prevention.  We are all just one step, one heartbeat, one wrong turn away from irrevocable changes in our lives.  I have seen this so many times.  Truly, the night she told me they had diagnosed her with GBS and they were testing for West Nile Virus, I nearly died myself.  For the first time in my life I felt a mind numbing panic well up.  I didn’t panic when I had her and her twin sister prematurely.  I didn’t panic when my father was critically ill and was close to death a number of times a few years ago.  I didn’t panic when my mother was diagnosed with Alzheimer’s. I didn’t panic when my 90 year old mother had a heart attack, which was her ultimate demise.  I didn’t panic through all of our children’s high school and college trials and tribulations.  I.  Don’t. Panic.  I am very good in a crisis. 
But the thought of losing my sweet, kind, beautiful, smart, caring, wonderful, compassionate, thoughtful, fun-loving daughter made me panic for the first time in my life.  And just about did me in. She is better now, three years later.  But, her life has changed. No longer is she the “go to” person for her siblings and her peer group.  No longer is her energy limitless, like it had always been. No longer can she tolerate all day of shopping, swimming, cooking for a crowd.  She has learned to accommodate this demon; and will for the rest of her life.  So will I.