Honored To Have Presented

I took a short time off from blogging to prepare for and attend The Examined Life Conference: Writing, Humanities and the Art of Medicine.  I met many wonderful people on this adventure.  My trip was made even more special by an invitation to speak at a Life Design’s Class and a dormitory.  When I take the opportunity to speak to groups, it always leaves me with a lingering awe over how my message is received the same way by various, completely different communities.  All these events were rewarding in this surprisingly similar way: I had eighteen year-old students and doctors alike wipe their eyes and tell me how much they appreciated the lessons I offered.  On the plane ride home, I read the same reaction through thank you notes people went out of their way to write and deliver.

 

This was the information provided in programs to offer an understanding of why I was there to speak.

Information regarding my presentation.

After the conference registration and welcome, I was in the the first set of presenters.   We went around the room for introductions when, lo-and-behold, I heard a name and recognized the voice of a dear college friend.  She drove four hours to surprise and support me.  Afterwards, we were able to spend a few hours catching up.  What a wonderful surprise!  It was a great gift and a special way to start my three-day conference.

 

Wonderful surprise visitor to my Examined Life Conference presentation

 

My week ended far too quickly.  While listening to other presenters, I learned more about writing and how it can fit into the medical world to heal and help individuals grow.  I met amazing people who had wonderful hearts and strong spirits.  These are people who are destined to make a positive change in the world.  I heard some beautiful poetry and even received one by email.  Thank you, Susanna, for leaving me awed and speechless with your words that truly struck a chord in my memory.  Abbi shared lessons of challenges and growth she built from an unimaginable heroic story.  You are a strong, wonderful woman Abbi.  Heather left me excited to see what she started writing, inspired by what I shared.

 

If I met you and we chatted for a while, thank you for sharing a piece of yourself with me.  I hope I left behind lessons others can grow from as their lives evolve.  I know there were many seeds planted within me this past week.  To the students I met, to the individuals I chatted with from planes to hotels and to all those in between who spent time learning and speaking with me, thank you for a week that left my spirit overflowing with ideas, hope and gratitude.

 

Tara

 

“I’m leaving on a jet plane. Don’t know when I’ll be back again. Oh…I hate to go.” -John Denver

Answers to Life Design Questions Fall 2012 (Part 2)

I have been taking the past few weeks to answer some wonderful questions a group of college students sent to me.  Last week I answered some.  This is the second part to that post.

Does a bad hair day bother you?

You asked me this question after class because I said I do not remember my reflection in the mirror.  I am lucky bad hair days do not bother me now as much as they had in the past.  I don’t spend a lot of time looking in mirrors.  I feel disconnected with the person staring back at me when I look at myself.  I expect to see a twenty-seven year-old face, yet there is someone nearly a decade older!  Anterograde prosopagnosia means my memory has forever locked the earlier image in my mind.   While I am aware of my aging, it always causes some concern and confusion when I see the reflected face.  This becomes my primary concern and focus each time I see myself.  The lingering concern of my altered face provides little room for remembering details like which hair is not laying down right or where its curling too much.

In class you described how your worst nightmare sounded–how did your best dream sound?

My best dream consisted of me hearing happy sounds and feeling gentle touches.  I remember the dream vividly.  I ran!  Running was still a completely unobtainable goal at the time.  I had been in physical therapy for over a year still practicing on how I could walk correctly without the need of any assistive devices.  If I tried to walk fast, I fell over nearly every time.  I could only stand back and watch my children run and play in the yard at home.  I wanted so badly to join them.  I often asked physical therapists if they thought one day I might be able to run again.  I had an EMG to see if it would be possible in the near future.  The doctor’s results frustrated and saddened me.  He said it appeared the muscle needed to allow me to run would probably never redevelop.  I felt I had lost the possibility of running ever again.

In the morning, due to this dream, I was so happy and free when I opened my eyes.  I laid there and laid there trying to find the thoughts that had left me when I woke.  It came back slowly and beautifully.  There had been flowers or something soft touching my legs – at this time my left leg still did not have enough sensation to feel soft touches.  Yet, I felt this soft touch brush against me like in a soft, swaying wheat field.  I had on a long skirt and laughed as it flowed behind me.  I could feel the wind rush against my bare ankles.  My children were there laughing and telling me, “Faster Mommy.  Faster!”  I ran and felt so free.  I felt so lucky and happy and my children laughed along with me.  We laughed and I ran.  That was my happiest dream.  That was my best dream.  I felt as if my damaged leg was working.  I believed my legs could again recognize soft feelings.  I heard laughter, and I knew I would run again one day.

Have you ever considered turning your blog into a book?

I have thought about it.  I would like to first further develop a paper I have been working on for a few years based upon questions a neuroscience research student asked.  This paper continues to grow.  It explains how my condition was acquired and the coping techniques I use for prosopagnosia.

It is thought 2% of the population has face blindness to some degree.  There has been no treatment developed and no hope for a cure.  Unfortunately, I’ve never found a book offering tips to patients on how they can better succeed in various social settings.  My paper explains prosopagnosia and teaches the coping techniques I developed allowing me to better identify strangers.   Once I have assisted this specific population, I may pursue integrating my blog into the paper to create a book.  When that time comes, I have a query letter I would consider mailing potential agents.  The example of this letter can be read in A Treasure for Today and Gift for Tomorrow.

Answers to Life Design Questions Fall 2012 (Part 1)

I was honored to have been invited back to Iowa for the chance to speak with a Life Design class.  These students were very kind, attentive and inquisitive.  They delivered a better response than I could have ever hoped for.  Thank you to everyone who took time to come hear me speak.  My message can only be shared if people take time out of their schedules to come listen to me.

Life Design September 2012. Thanks Ciesco for taking this picture.

Fifty minutes flew by and left many details unsaid.  I requested for anyone not having time to ask their question to please write me.  I was grateful for the inquisitive minds that took time to follow-up.  You see, when I hear questions like the ones asked, it always makes me put more thought into how I proceed through daily life.  Becoming more aware of how I handle situations causes me to be more attentive of positive coping techniques.  It also offers me more insight to questions and answers people may want to hear in the future.  My goal is to educate others.  Questions from students like these help me better achieve this goal.  My success can be partially credited to all of you.

I received enough questions that I have decided to break this into two posts.  This allows me to answer each question as fully as possible.  Any longer than my usual 500 word article and I realize eyes start to glaze over and minds start to wander.  Besides, students already have enough to read.  So, Life Design (Fall 2012) here are answers to some of your thought-provoking questions.

How long do details stay in your mind?  You said you can’t remember faces, but you remember things about people.  For how long?

Besides not remembering pictures and faces,  I have a great memory.  When thinking back to your class, I still remember I saw five guys come in wearing ball caps.  All but one removed them before class started.  The girl in the front quarter of the room near the center had on a very pretty green shirt.  After starting at the shoulder, the sleeves opened and then closed again half way down her upper arm.  The material was light and flowing.  In the back of the room about three aisles down on my right, there was a young man sleeping, or resting with his eyes closed, until I finished my conversation with the senses I had lost.  I was hoping the young lady up top on my left wearing the pink shirt would come down and speak with me.  I wanted to see what color her head band was.  It was sequined with either dark blue or black.  She had very pretty blond hair.  I stated these detail during class except for pointing out the gentleman who did not remove his cap and the one sleeping.  Other than that, ten days have passed and these identifying clues are as clear as the moment you were walking into the room.

Have you ever sat down and compared your life to that of another “face blindness” patient? If so, did you gain understanding from their perceptions?

I think it’s interesting talking to others who have prosopagnosia.  Until I did this multiple times, I never quite understood the different degrees, a spectrum of sorts, of severity in face blindness.  I’ve gained a lot listening to how other people handle various situations.  Yet, my favorite conversations come from speaking to people who recently discovered they have prosopagnosia.  One lady recently met me and wanted to talk more about this condition.   Until she’d seen me on the Today show and then saw a special 60 Minutes, she never knew it was an actual condition.  The relief she felt was obvious and immense.  All those years of feeling and hearing comments made from others that she was “ditzy” or “not paying enough attention” suddenly washed away.  I am fortunate because the Iowa Neurological Patient Registry gave me access to some great researchers who helped me not only put a name to what was going on, but also led me to ways I compensate for abilities I lack.

There is an amazing array of perceptions from both patients and others seeking information of face blindness.  I learn something from both groups.  They tell their story, and I share mine.  Sharing information makes this community, as it does any other, stronger.

How often do you travel and tell your story?

Whenever asked, I’m prepared to head out and speak to groups.  I have three basic speeches I am always prepared to deliver: 1) For a medical staff: Medicine Is More Than a Textbook: Finding a Person in Every Body   2) For prosopagnosia patients: Discovering Clues of Who People Are in a World Filled with Strangers   3) For the general public: The Lessons of Life: Finding Strength in Adversity.

Everything I have gone through was an amazing hands-on learning opportunity for me.  It becomes even more worthwhile when I can share these lessons with others.

Do you ever see yourself moving back to Iowa some day?

I am a Navy wife.  My husband’s career determines where we call home.  We never know where we will be next.  I enjoy this type of life.  Exploring new places and creating new adventures has always been fun for us.  Someday we will be able to settle down and live in one place without the thought of what our new address will be in a few years.  I would love to go back to a city in Iowa some day.  Our families are both there.  It would be nice to be closer to them.  However, I haven’t been in snow for six years now.  I may change my answer about staying in Iowa if I were to visit in the winter.

After stroke, woman lives in ‘a world of strangers’

The following article has been copied, with permission, from Iowa City Press-Citizen.  Josh O’Leary wrote this piece that was originally printed in their paper August 7.  I appreciate the increase of awareness they provided informing readers about prosopagnosia and the Iowa Neurological Patient Registry.  This registry remains a leader in researching neurological conditions that touch everyone in some way.

After stroke, woman lives in ‘a world of strangers’

A disorder has left her unable to recognize faces.

IOWA CITY, IA. — Tara Fall walked out of the salon feeling good about the first new haircut and coloring she’d had since shaving her head for surgery a couple of years earlier.

So good, in fact, that outside the door she smiled at a stranger, who fell into step with her down the concourse of the busy shopping mall. Fall thought it was odd the woman was matching her pace step for step, but she gave the woman another look and smile.

The woman veered closer, and Fall started to feel uneasy. When the woman bumped into her shoulder, Fall wheeled, ready to brush her back. Instead, her hands hit the glass.

The makeover had turned her own reflection into that of a stranger, she realized.

“So I’ve learned to never, ever change my looks drastically,” Fall said, now able to laugh at the story and the many others she tells like it. “Because if I change them drastically, there’s no ability to comprehend who the person is in the mirror.”

Fall, a 37-year-old Monticello native, is one of the 525 people with damage to a specific region of their brains who volunteer as members of the Iowa Neurological Patient Registry, which is coordinated by researchers at the University of Iowa.

Fall has had prosopagnosia, a neurological disorder characterized by the inability to recognize faces, since suffering a stroke during brain surgery to treat her severe epilepsy in 2003. Since then, Fall has made a point to return to Iowa City each year to work with experts at the U of I.

Fall, who now lives with her husband and two children in Menifee, Calif., takes part in the research not with hopes of helping her own cause — there are no treatment options for prosopagnosia, just coping mechanisms — but with the idea that she is helping to advance the scientific knowledge of how our brains work.

“I’m trying to pay it forward,” said Fall, who was in Iowa last week for tests. “I look at what they’re doing, and the progress they make. I’m not so hopeful to think that what I’m doing today will have an impact on my epilepsy or my prosopagnosia, but I see the impact it’s having in other areas, and it’s exciting. … I’m giving something that so many people are going to gain so much from.”

The Iowa Neurological Patient Registry began in 1982, the brainchild of U of I neurology and psychology professor Daniel Tranel and former U of I neurology professors Antonio and Hanna Damasio. It has since become what Tranel believes to be the best patient registry of its kind in the world.

“It’s really provided a unique resource to study neurological problems and neurological diseases and to really give us some strategies to conduct research that hopefully will identify cures and preventions for neurological diseases,” Tranel, the registry’s director, said in a statement.

Nine years ago, Fall, who had suffered from epilepsy since age 13, underwent surgery at University Hospitals in Iowa City to cut away tissue from her temporal lobe with the hope of controlling her seizures, which had become life-threatening.

Fall suffered a stroke during the operation, and when she awoke, the left side of her body was paralyzed, and she had lost most of her eyesight. Through therapy, she regained her body movement, learning to walk again alongside her 1-year-old daughter, who took her first steps the same week Fall did.

“It helped me connect with my kids more,” Fall said of her recovery. “It help me have patience with them more. We learned to walk at the same time. We learn to button our shorts at the same time. And as they grew, I got better at everything, and so did they. It was a rewarding process to develop while my kids were developing.”

Fall’s vision returned to about 50 percent, but she eventually learned she faced another, invisible disability: When she met people she had previously known before her stroke, she was unable to remember what they looked like. Even people she had known for years but had aged or were growing up, her own daughters included, became unrecognizable.

“So my world has basically become a world of strangers,” Fall said.

Fall has learned to rely on other cues to get by, honing her observation skills and recognizing people by studying how they talk, walk and dress.

“If you were to put head shots down here, and one was you, I’d have no clue. If one was me, I’d have no clue,” Fall said. “But I can tell you everything about the way you’re sitting, I can tell you everything about the pen you’re using, about the shirt you have on, the pants you’re wearing, and I can even tell you about your shoes. So it’s not that I’m blind. I can see and remember things. But I’ll give you a million chances to make your first impression with me.”

Today, Fall, a stay-at-home mom, is an advocate for the registry and a public face for prosopagnosia. In recent years she’s appeared on the “Today” show, given talks at the U of I and started a blog about her experiences.

“All in all, I would do every piece of this again if I ever had the opportunity,” Fall said. “I’ve gained so much more, and learned to appreciate and love so much more than anything that was taken away from me.”