On Memory Loss (and being an advocate)

We read books about it (almost always fiction).  Laugh about it in movies.  See it used as a cheap gimmick in the afternoon soap operas.  How strange it is for me to say with all seriousness, “my husband has amnesia.”

Ben lost his memory in 2004.  Lack of oxygen to his brain caused him to lose at least four years of our lives together.   Unlike amnesia portrayed in movies, Ben never forgot his own identity.  He could remember people … but he couldn’t remember events from the past four years and his brain could not form new memories.  In fact, I had to tell him multiple times that I was seven months pregnant with our third child!

Ben's photos from HTC phone 1019When he came home from the hospital, our five year old daughter was sitting on the couch reading a Frog and Toad book to my dad.  Ben took one look at her and started crying.  “When did she learn to read?” He asked.

Later that day, we were walking slowly outside.  Ben was silent, clearly confused and in pain from so many seizures.  He looked at a car he didn’t recognize in our driveway.  “Whose car is that?” he asked.

“My dad’s,” I answered.  “Oh,” Ben replied.  There was a pause, and then he asked the question I so desperately was hoping wouldn’t come up.  “Did your mom come, too?”

My heart sank with the enormity of loss.  I knew that this would be one of the strangest conversations I ever had.  I prayed that God would help me.  “No,” I said simply.

I could sense that Ben was hurt and confused by her absence.  “Why not?” Ben asked.  “She died two years ago,” I said.  I was calm on the outside, but inside my heart was breaking.

“Oh,” Ben said silently.  He didn’t speak again for the rest of our walk.

***********************

Coming home from the hospital after his seizures was a painful time for us.  The doctor who had been assigned to Ben in the hospital told me that there was no medical reason for Ben to stay in the hospital.

I remember pleading with the doctor. “He can’t remember what happened five minutes ago.  He doesn’t remember that I’m pregnant.  You can’t send him home like this.”

“Your insurance company will not let him stay in the hospital just because he can’t remember things,” the doctor replied tersely.  And with that answer, he walked away.

Oh, how I wish I had been more of an advocate for my husband at that time!  How I wish that I had insisted we be referred to some form of specialist, some form of therapist … anyone who could help us navigate the bizarre circumstances we were experiencing.  All we were told was “find a local neurologist.”  But neurology deals with disease of the central nervous system.  The neurologists we visited were focused on treating Ben’s seizures (with medication).  None of them were trained to help us deal with the behavioral and emotional changes brought on by Ben’s amnesia.

Some trust in chariots and some in horses, but we trust in the name of the Lord our God.

I know it is by God’s design that we were left to fend for ourselves in the bizarre world of retrograde amnesia (what we typically think of when we hear the word amnesia), and anterograde amnesia (loss of ability to form new memories).  But over the years I have learned to be tenacious in doing my own research and advocating for my husband’s health.  I trust God fully.  But I also know that I know my husband better than any doctor, and it is up to me to make sure that he gets the best treatment possible.

If you are living with a family member with a hidden disability, how have you had to advocate for your loved one’s care?  How do you find the balance between trusting God and searching and pushing for what you believe to be true?

~ Nancy

 

 

– See more at: http://chosenfamilies.org/author/prosthetic-memory/page/5/#sthash.fWEqqRin.dpuf

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