Last fall, I had the great fortune to be introduced to a documentary filmmaker, Kevin Kelley, and director/producer, David Gould, from the University of Iowa. These men currently have a powerful short film being played in film festivals across America. Two Sides of the Moon is a true story dealing with the tragedy of honor crimes.
To fully explain my life’s events, I offered them a paper* explaining why I felt my story could have impact on others. Upon learning my life’s events, they offered me a true gift. They offered me the gift of filming an interview about my experiences. They donated their equipment, knowledge and time to help me share this story. This is the final product they created for me:
Maybe someday it will help lead to a book deal. Maybe someday I will be lucky enough to be invited into a speaking circuit, but as for today…. I consider this video a treasure. Later, as my children grow older, I will share it with them. In their eyes today, I am only a mom who sometimes stumbles as I walk and can never identify their teachers. In the first essay of the school year they described me as a “mom that stays home and cleans and is really good at cooking but likes to clean a lot”. Someday my children will ask why I go and speak for groups of people and why I used a cane and had my head shaved in their early pictures. This video captures the answers I can offer. Most of all though, it leaves them knowing I always had hope. Hope is the strength I will pass on forevermore. Thank you Dave and Kevin for this treasure today I will pass along as a gift tomorrow.
*The paper offered to Mr. Gould:
Some people never forget a face. I will never remember one.
I look into a mirror and see a stranger. My children come to the breakfast table, and I don’t recognize them.
I have prosopagnosia, also known as face blindness. I can see a face, the same as anyone else does. But I have no ability to remember it. To me, the world is a sea of unfamiliar faces.
At 27, I suffered a stroke during surgery to cure my epilepsy. At that point, I lost the ability to recognize people – even those I know best. In addition, I had to relearn how to walk. Fear, uncertainty, sadness and hope filled me as I took my first steps and faced unimaginable obstacles associated with face blindness.
Emotions brought on by prosopagnosia are conflicted, but I find humor. During a trip to the mall, I became annoyed with a woman who was walking too close to me. She followed me step for step. She came too close; I moved away. Several feet later, she brushed against my shoulder. When I reached up to push her away, my hand hit a mirror. I realized that the lady walking too close to me was … me. Another time, I was mad at my husband for an entire day when he sent me a photo of him dining with a woman. It was a picture of us.
Of course, there are painful moments. For months, I watched my daughters rehearse for their dance recital. When the big performance day arrived, all the girls had on make-up, tight ponytails and identical costumes. I could no longer distinguish which girls were mine. After the show, they ran to me, sparkling with excitement and pride, wanting to know how they did. How do you tell your daughters you were never able to identify who they were or watch them perform what they practiced so hard to accomplish? How do you tell your children they are beautiful when they understand you do not remember what they look like? You don’t have the heart to burden your children with these sad realities, but sometimes you can’t help but cry.
I lost the ability to recognize faces, but developed tremendous resilience. My young daughter, just learning to walk, gave me strength as we took our first steps side by side. Her steps were guided by the helping hands of an adult; I was aided by the support of a gait belt. I was once the person leading her, and now I was following her. I did not have time to dwell in bed with pity. I was determined to lead her once again.
I had to start anew, and for that, I am a more patient parent. I will never forget the challenges that came with learning daily skills I took for granted. Getting dressed, washing my hair and tying my shoes seemed impossible. Now, I try to never assume simple tasks young people learn are so simple for them or anyone else.
I gained coping techniques that help me overcome countless challenges. I pay more attention to body language. I observe more details of facial expressions. I take comfort in routines. Questions I have learned to ask offer more information than the faces I can see. Prosopagnosia may take away your ability to recognize faces, but it does not take away your ability to find kindness in strangers or develop lasting, true friendships.
Today I am 36, and I am eager to share my unique story. I have started telling my story to an audience through my blog. I’m looking for a thoughtful, talented writer to help me reach a greater audience with a book. My hope is that others will find it informative, entertaining, and even inspirational. Through anecdotes, we can offer laughter and share tears. Most importantly, we will explore the inner strength derived from hope.
The story will appeal in particular to the 2 percent of the population that suffers from some level of prosopagnosia, because information on coping with a world of strangers is scarce. But the broader message – finding hope in a seemingly hopeless situation – will resonate with anyone with problems, simple or severe.