Living With Acquired Anterograde Prosopagnosia

I realize I will never again know who I am in current photographs (prosopagnosia) without using broad clues such as background and clothing.  Due to only remembering faces from before (anterograde) my stroke (acquired), I always recognize myself in younger pictures.  However, logically, I will continue to age.  Even if I were to never again change my hair color or style, my face will change.  Aging is inevitable.  There are lines and creases that continuously alter how we appear.  It’s a fact of a life well lived.  

My image as a young woman will always be recognizable when flipping through photo albums.  I identify with these pictures from years gone by.  This image of what I looked like then is frozen in my mind forever.  It is the face I will always expect to see when I catch a glimpse of myself today.  Still, fortunately, I am able to remember the happy thoughts created each and every day.  In the end, these memories are much more beautiful and meaningful than any photograph we could ever take.

 

 

A Secret Passage and Undiscovered Wildlife

This summer I was fortunate to have created many new memories.  I appreciate opportunities I have during the summer to take my children out of city living and expose them to treasures I found as a child in a rural area.  We went camping one night during our summer trip.  My daughters found a path which led to a creek bed behind where we were staying.  Instantly there was a sparkle in their eyes as they noticed stepping stones that had become exposed by the drought.  They felt certain no one else had a chance to see them because the water was previously too high.  They knew, beyond any doubt, this was a passage that had never before been discovered.  In the innocent mind of children, they knew they were stepping into space no one else had been lucky enough yet to find.  This was their “secret passage”.  Now, I don’t mean to ruin your imagination, but this was a common path many had taken before.  Footsteps pushing  into the grass on the other bank let me know someone had recently crossed this dried creek just as we were doing then.  Of course, I let them have their imaginations explode with possibilities.  I let their excitement spread to me and we carried on up the bank to see where this secret passage may lead.  Lucky for us, the magic continued….

We crossed this secret passage, climbed up a small hill and there in front of us was a deer!  My daughters have never discovered a deer on their own before.  They saw one earlier that morning, but it had been a rescue animal confined in an enclosure while its wounds healed.  Yet, this deer was alone in a field not far away.  It became startled and ran away quickly.  This secret passage led them to undiscovered wildlife!  I have seen many deer throughout my life.  I have seen them in fields, eating left over food dropped by combines and leaping too close to cars.  Yet, I am still awed by their beauty and speed as they run from danger.  I was grateful for the excitement and adoration this deer provided my daughters who had never seen one so close.  Their awe was contagious as I again saw this animal’s power and beauty as if for the first time.

Thank you Morgue File for the use of these photos. Mary R. Vogt this is a beautiful picture.

My daughters gave me a gift that day.  They reminded me: Hold onto curiosity, excitement and awe for things never before seen and also those which you were not expecting to see again so soon.  My girls are old enough to know realistically someone had crossed the creek before them.  Yet, they were able to use imagination and see a mystical adventure waiting for them to discover rather than an ordinary path.  Can we all do this with our lives?  Can you do it?  Can you leave the house today, and rather than experience the boredom of yet another path you’ve gone on before  step out and explore what surrounds you as if it is yours alone to claim?  Can you search with the eyes of a child and find new discoveries in an already discovered world?  My daughters allowed me to take a journey with them and once again remember even though someone has seen something a thousand times, to others it is a remarkable sight they have never before seen.

Summer, for some in the world, is ready to say good-bye.  Remember the discoveries that were made.  Hold on to memories created.  I hope you found an undiscovered passage that will offer you great joy and memories to cherish forever.  What special experiences did you celebrate this summer?

Perspective of An Epileptic Growing Up

Middle School

                “I don’t know what’s wrong.  I just feel weird.  It just feels like I am in a commercial I have seen before. I know what’s going on around me.  I know everyone around me.  I have seen them all before.  I just can’t join into their conversations.  I just feel different, and then I count my fingers and pat my face.  Then I am tired.”

“An EEG…with all those cords???  You cannot be serious!  I can’t wear that to school!  Everyone’s going to laugh at me!  24 hours?  But I don’t want to.  Fine!  But, everyone is going to laugh and make fun of me.”

High School

                “Yeah, they’re still happening.  But please, don’t tell anyone.  Everyone already thinks I am weird when they see me count my fingers.”

“I don’t understand.  I felt fine, went to bed, and woke up in the doctor’s office.  How did I get there?  What’s going on with me?  A seizure….  No way!  But aren’t those where people just flop around.  I wasn’t doing that.  Was I???”

“What do you mean I can’t drive?  I just got my license!  Six months?  NO WAY!!  That is so not fair!  Why is this happening?”

College Life

                “What do you mean I can’t sleep in a loft bed in a dorm?  Seriously, I might have a seizure and fall out?  Stop worrying about me.  I mean, I am fine.  It’s no big deal.  I don’t even really notice it until the morning.”

“I know all these last medicines aren’t doing anything for me.  All right, fine but, this one makes me feel horrible.  I feel so groggy.  I feel sick to my stomach.  I feel like I can’t help but get fat.  Come on, why can’t we find one that works!  Why do you make me take medicine that totally is not helping?  They just make me feel worse.”

Early Adulthood

                “Okay, fine I had another seizure last night, but they aren’t that bad.  I just wake up totally sore.  No big deal.  Really.”

“Oh, dear God….  That was ME in this video tape?  Was that really me having a seizure?  No wonder I am so sore.  No wonder everyone has always been so scared.  Wow, I had no idea.  Gosh that looks horrible!”

“What are these red spots around my eyes?  Broken capillaries?  I had always thought I was so lucky having the seizures at night.  Now you are telling me I could have died from my own saliva?  I had no clue.  My seizures are getting worse I know.  Really seizures can kill a person?  Me?  Wow.  Okay, even I am a little scared now.”

“There is no way I am in Iowa!  I went to sleep in Virginia.  Oh my gosh that older girl is so cute!  Who is she?  What?  Seriously!!  She is mine?  How?  What has happened?  Status epilepticus?  Okay, please tell me again?  How did I get here?  How do seizures wipe away memories?”

“No medicine works.  I have a period of amnesia.  Now my short term memory is about gone.  I have to leave notes of whether or not I stepped outside to get the mail or I ran the dishwasher.  I just…I know it’s time.  I need the epilepsy surgery.  No medicine has worked.  I’ll be fine.  Seizures could quite possibly take my life.  The surgery could save it.”

“I remember the petit mal while in surgery.  I remember knowing I was going to have the tonic-clonic.  I remember the seizures. I remember knowing everything was not going to be all right.  I remember the surgery.  A stroke???”

Recent Years

                “The stroke was rough, but well worth it.  No more seizures!  Finally, what more could I want!?!”

Eight years, and no seizures.  I haven’t felt this good completely free of medicines since I was young.  Oh, I feel great!  I am so thankful!”

“Last thing I remember was I was sitting outside on the chair. Are my kids okay?  How and why did my seizures come back?  What can we do?”

“I can’t drive again???  What am I going to do?  How can I get my groceries?  How can I get my kids to the doctors if they get sick????  No one from church is able to take me to the appointments?  Really??  Most of my neighbors forget to ask me before they go to the store.  I guess I will have to ask them again.  I lost my license.  I have lost my independence. I can’t drive.  Six months.”

“Vimpat is amazing!  I have not felt any side effects.  I guess that was a benefit to being medicine free for so long.  They have had time to develop new anti-epilepsy drugs.”

“No, really I am doing great.  Besides that one blip in April, the seizures seem to be gone.  Of course I am still scared.  Nearly nine years seizure free.  Now they are back.  Seizures always have been my disease of waiting.  I will be okay though.  I always am.”

Seizures, Status Epilepticus and Amnesia

Think of it: What would you do if you woke up and a year or more of your memories were missing?  Would it be a gift or a curse?  Most of us have considered at one time or another what it would be like if we could choose to erase some of our memories.  We contemplate whether it would be for the better or worse if some period of our life would be wiped away as if an eraser made it disappear.

As I went to sleep one October night before my brain surgery, I remember having the first seizure.  During the postictal stage of the absence seizure, my fingers did not seem to be all there.  I knew I was not going to recover from this episode.  I knew to prepare my body and alert my husband that something was very wrong.  A tonic-clonic was quickly approaching.  Then there was a long time of nothingness.

I woke up in a hospital room.  After the fog began to lift, I remember requesting the medical staff show me their ID badges.  I wanted to be sure of where I was.  That is when the confusion began to settle in.  In my mind, I fell asleep in our rented townhouse in Virginia.  My husband was stationed in Norfolk.  We had an infant daughter.  She was tiny with curls in her hair.  When I awoke, I was in Iowa.  We owned a house.  We had purchased a new vehicle.  My husband was no longer on a ship but now a Navy recruiter.  Most shockingly though, the baby they brought into my room was no longer my only child.  They also brought in a toddler with curly hair.  The young baby had been born four months before.  She was ours.  My oldest was walking now.  My seizure that night had not ended for hours.  I had gone into status epilepticus.  During these missing hours, my seizures completely wiped away over a year’s worth of memories.

Upon recognizing this, surprisingly enough, I did not set into a frightful panic.  It was more of an amazement and awe that filled me.  I was even slightly humored of my fine taste in our new house, of our nice new van and of our ability to create such beautiful children without my knowledge.

It took a few weeks of tests and changes to my medication before I was finally discharged.  My memory stayed fragile leaving empty periods of time I cannot recall.  To this day, there are many memories I never was able to recover.  Other memories have come back to me.  Yet, sometimes I wonder how genuine those memories are.  I have kept journals off and on for quite some time.  Between rereading those and revisiting pictures many times, I am curious how many memories are really mine and how many were recreated through hope and repetitive learning.

I had to meet our neighbors all over again. I am sure it was as uncomfortable for them as it was for me.  I was previously a familiar, chatty person in their eyes.  Now, they were strangers I had never seen before.  There have been a couple of times a conversation has come up with my family about something negative during that missing time.  I’ve asked not to relearn those memories.  Yes, our struggles do make us who we are at the present time.  But really, if we all could just completely forget some things from our past, would that be so bad?  Some memories are still missing, and I will be grateful if you continue to keep it this way.