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Living with prosopagnosia.

I'm Friends with Whats-his-face

My friend, is your face really an apple?

I have a pet peeve with English language usage. Most people, when they talk about a "friend" really mean to use the word "acquaintance". Most people have a great quantity of acquaintances in their lives, and relatively few friends.

On an emotional level, an acquaintance holds little value to me. I don't really get to know who they are, and I am not always so forthcoming with my own self disclosure. Still, when it is appropriate, I usually try to find a way to sneak in a brief discussion about prosopagnosia upon first meeting somebody.

Not all people with prosopagnosia feel a need to do this. In fact, people who live with prosopagnosia are pretty varied. I didn't know that in October of 1996 when, at the age of 19, I first put my website online. After all, at that time, I had personally met nobody else who had prosopagnosia, and had communicated with precisely the same number. As far as I knew, there were only 200 such people in the whole world. That is what the medical literature had described up to that point in time. As is often the case over a long period of time, the medical literature turned out to be wrong.

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The advent of the internet facilitated my discovery that the medical literature was incorrect. After taking my web site live, I began to communicate with a sufficient number of people with prosopagnosia to warrant the creation of an email list for managing that communication. Through this process, I developed many friendships online.

In person, however, relatively few people wind up becoming my friends. So little information had been available in the medical literature that I lacked a frame of reference for knowing how prosopagnosia effected different people in different ways, particularly with regard to forming relationships.  Compared to other people with prosopagnosia, my recognition difficulties are on the more severe side.  I have written about how my prosopagnosia makes social networking very difficult for me. However, finding those rare gems who later become friends of mine makes this process worthwhile. 

It can take a long time and be a painstaking process for me to find such people.  In the mean time, I spend a fair bit of time in introspection. Perhaps this is because I tend to spend a lot of time alone, which seems like it would be a direct consequence of having few meaningful relationships in my life.  I long for more friendships.  In addition to the obvious challenge of cultivating relationships with people I can not recognize, there is the added difficulty of friendship requiring both people to initiate and interact with each other.  I have no real understanding of how many potential friendships I may have snubbed or "dishonored" simply by failing to recognize somebody.  I try not to focus on that.  Instead, I try to focus on the friendships I do have, and how important they are to me.

In February of 2011, I read a poem written by Christine McClimans entitled "On the Wings of a Butterfly". That poem about friendship inspired me to write my own Friendship Poem which I would like to share. If you wish to hear and see me reciting this poem, I created a video on youtube where you can do just that.


Friendship Poem
Written by Glenn Alperin © 2011


"Hello, my friend," I say to you.
Each time we meet, it is like new.
Your face is not a memory,
but your face is not what I really see.

Fading, Fading, never clear,
I do not feel your image near,
But that is not what matters most.
Your body could be like a ghost,

but it is not. It is quite real.
Alas, that is not how I feel.
You could be there. Perhaps you're not.
I wouldn't know. My brain can not

see you the way that my eyes can.
I wonder which is better than,
to see the face, to recognize,
or see the heart and soul? It's wise

to look beyond what you can see.
I wish more people would look at me
and not pass judgment on my looks
like judging covers of unread books.

"Hello my friend," I say again,
I hate to say goodbye because
I never know if, or when,
I'll see you, so I pause.

I sigh. I hope. I pray. I see.
Your face is not a memory.
Your thoughts, ideas, are what I hold.
Your image is dark and cold.

Do not despair. You are my light.
I think of you in day and night
For friends are what I hold most dear.
Please come to me and keep me near.

For you, I will do quite the same
as I play the faceless game.
Your image I may not recall.
That surely matters not at all.

And when you go, return you do,
Always telling me it's you,
But thanks for coming back to me
And being there for me to see.

 

©2011, Glenn Alperin

Teaser image courtesy of http://brucemctague.com/tag/rene-magritte

If this blog entry interests you, and you would like to be notified of future blog entries I publish as I publish them, you may join the announcement-only Glenn Alperin Blog Yahoo group.

Glenn Alperin is a writer who has prosopagnosia.

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