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Living with prosopagnosia.

Mourning for My "Lost" Experiences

Letting go of what I never had.

I went to a funeral recently. My grandmother on my father's side, the last of my grandparents, passed away.

A short service was held at the cemetery, and like others who were present, just before and just after the ceremony, I spent some time looking around at the other grave stones. Even among names that were clearly of people in my own family, I had no knowledge of the identities of most of them. I felt a little lost, but this is not a new experience for me. Any time there is a funeral, I feel lost. 

Who are these people? Perhaps I know some of them, but I feel utterly disconnected from them. Names alone provide only an amorphous understanding of who a person is, conditioned upon the fact that one is able to relate the name to one's shared life experiences with others. At times, I feel estranged from my own extended family, both living and dead, all because I can't recognize them because of my prosopagnosia.

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After the service, I spent much time reviewing pictures with people who I didn't recognize or know, including family, friends and others. Many of the pictures included my grandmother. Some pictures included other people. Of those pictures, I knew very few people, none of whom I recognized.

I stared at the pictures as other people told stories of when the pictures were taken and who was in them, sharing their memories of those events. Not everybody knew everybody from the photographs, and I suppose that is some consolation to me, but I am still disturbed at how little I really know of my own family. Who are they?

My grandfather on my mother's side, my Poppa, when he was alive, dedicated a substantial amount of his time toward gathering information related to the family tree. Even when pictures were available, I was far more fascinated by the relationships and the stories of the people than I was by their appearance.

I know it helps other people to see pictures, but when I look at a picture of a person, while I may recognize the emotion being displayed on the person's face some of the time, I feel no emotional connection to the person specifically because of their picture. As the character Diana from A Chorus Line put it, "I feel nothing." As often as not, even when I am told who the person in the picture is, I still feel an emptiness that is very deep.

This very much disturbs me. I want to feel connected to people, and yet, most of the time, as I have previously written, I feel like a friend among strangers, adrift on a raft among a sea of people who somehow miraculously know who I am. I don't even know who I am! Without my hat and my beard, I would walk into full-length mirrors. (I've done it before, having failed to recognize my own reflection.) Not only do I feel disconnected from other people, at times, I feel disconnected from myself.

It's not like dissociation. I have actually had that experience once in my life brought on by something I had observed which must have triggered a memory I had of an event which I had been told about before. It was a very strange experience to be sure, but it is nothing like what I experience any time I go to funerals.

It's almost as if these people were never in my life in the first place, and yet, I know my life would not have been possible without them being there. I very much want to give credit, want to understand, want to know who my family is, and yet, looking at names or pictures, I feel nothing.

From my father's parents, I remember my Grandma's sparkling personality and her magnificent gift with playing piano, and I remember my Grandpa's quiet but determined way of approaching things. From my mother's parents, I remember my Grammy's outspokenness, and I remember my Poppa's whistle and moustache.

Actually, my Poppa was the first person I ever remember recognizing, and I am pretty sure it was because of his moustache. I have much clearer memories of him than I do my other grandparents.

I also have two cousins who I genuinely can't tell apart who have very similar sounding voices. (I'm told that on the phone, I am not the only one who has trouble distinguishing the two of them.) They are first cousins, and I have spent a fair bit of time with them, and I still feel like I don't really know them.

I have an uncle who used to have a beard, and I was warned when he shaved it off. His personality is clear to me still from before, but his face is now completely unrecognizable to me.

Who are these people?

Lately, I have been dealing with some very difficult thoughts and emotions, and through the process of therapy, which I have been engaged in since childhood to various degrees, I am coming to understand that perhaps what I am really doing is mourning a collection of experiences I was never able to have, and for which I was never able to take part in the way that other people did. It is a loss, I have been told, even though it is something I never had.

Similarly, people who are autistic often feel like they are missing things, and often have difficulty even understanding that they are missing social clues and social understanding.  Hubert Cross speaks eloquently about this in his online article, Asperger's Syndrome and Making Sense.  

For a significant portion of my self-discovery process as a person with prosopagnosia, I became very interested in also understanding autism and the autistic spectrum. Although I do not currently believe I am on the autistic spectrum, I came to understand that many of the feelings I have about my experiences in life are similar to those of people on the autistic spectrum. In addition, it turns out that there is a significant overlap between people who have prosopagnosia and people who are on the autistic spectrum.

In an essay entitled "Don't Mourn For Us" written by Jim Sinclair, an autistic man, Jim made the point that it is understandable that parents who had expected to have normal children may spend a great deal of time and energy grieving their discovery that their child is autistic and not what they had expected or hoped for their child to be. However, Jim makes an even stronger point by reminding parents that the world of autism is an amazing, albeit very different, world, and he invites them to come join the autistics in their world. Jim writes:

This is what I think autism societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your understanding. Your world is not very open to us, and we won't make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it--and then do something about it. The tragedy is not that we're here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world?

In my case, it is not my parents who are grieving. I am the one who is grieving, for my own loss of experiences I never had as a child, experiences I never could have had because of my prosopagnosia and the lack of support I received from my peers. I need help and understanding to make social interactions more meaningful to me. I have always needed that help, and have gotten much better at asking for it. Still, it would have been so easy for people who saw me struggling, instead of finding ways to compound my struggles, to have helped me find ways to alleviate them. While this did happen a lot in my family, it rarely, if ever, happened in any positive meaningful interactions I wished to have with my peers. Even now, while I am able to ask for that help in a way I never could as a child, there is no way I can get those "lost" positive experiences back.

The hurt will always be there, I suppose, and perhaps it will lessen over time. Grieving is a process which modern psychology says does not happen in a strictly defined linear manner as once thought. At various points in time in my life, I have grieved for some of the experiences I have gone through. I've had some fantastic people in my life who have been able to show me that it doesn't matter as much what other people think of me as long as I am able to keep a positive attitude regarding how I think of myself.  Having also suffered from depression, that is an additional compounding difficulty in my life.

At the moment, however, I am grieving for what I never had. This is a very different feeling for me. I don't really know or understand how one is supposed to grieve for one's own loss of experiences. I imagine that at some point, most people with disabilities must come to terms with who they are instead of who they could have been, or perhaps who other people wanted them to become.  I thought I had done that a long time ago, but I have been entering a different phase of my life now, one where I am exploring my sexuality.  I think that most people go through this phase of their life in their teenage years, or perhaps their 20s.  At the time of this writing, I am 34 years of age.  I guess that makes me a late bloomer, but I can't help thinking about my past.

The cruel fact is that the past, however oppressive it may have felt, can't be changed. While I can certainly influence the present, and to a greater extent influence the future, I can never get back experiences I never had in the first place, nor can I replace any negative social experiences I did have, no matter how much I wish I could.  I was reminded this past week by somebody who cares a great deal for me that perhaps the experiences I lived through, as traumatic as they have been for me, have contributed greatly to the person I have become, one who cares deeply for other people, particularly those who are struggling with their own issues.  I take a lot of pride in that, but even that does not remove the pain I feel.  It simply allows me to share the pain of others in a way which I hope is empathetic, in a way in which I wish that others could have shared my emotional pain and social losses as a child.  

My pain, too, can be shared, but it is so much more difficult for others to relate to.  Most people take facial recognition for granted.  It is a rare person who tries to understand the depth of loss, the depth of insecurity, and the depth of fear which I live with on a daily basis.  Honestly, I don't expect understanding, but it would be nice if people would try just a little harder to be empathetic toward me.  

Whether I get that support or not, life will go on as it always has. All I can continue to do is put one foot in front of the other. The Chinese philosopher Laozi wrote that "the journey of a thousand miles begins with a single step."  I am certain that this mourning process for me has always been there, but I have never felt it as deeply as I do now. As I trudge through the inner workings and struggles of my own psyche, perhaps I can look at myself and say that, after such a long time of giving up and standing still, I am finally willing to try to walk again. Jim Sinclair put it so nicely when he wrote that the focus should be "not mourning for what never was, but exploration of what is."

I'm not there yet. I find myself wanting to be more at that emotional place. Perhaps I have not yet spent enough time grieving to be able to get there. Hopefully, if I start walking, I will get just a little closer to the end of my thousand mile journey. Even when I finally arrive, there will be journeys beyond that too, and I will have to learn to walk all over again. While I may be overly discouraged now, I know that once I achieve my goals, I will feel an equally significant jubilation. I have felt that before, so I know it is simply a matter of time before I will feel it again. Will that remove the overwhelming sense of loss I feel now? Perhaps temporarily, and probably never completely, but it will allow me to store up enough positive energy to fight through these difficult issues another day. I am always thankful for that opportunity.

 

©2012 Glenn Alperin

Teaser Image ©2012 Glenn Alperin

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Glenn Alperin is a writer who has prosopagnosia.

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