A road sign one might see describing some of the difficulties of living with prosopagnosia
Over Thanksgiving, I spent some time with family. We had all come out to New York City where part of the family now resides. On this particular trip, there were three incidents of note worth describing regarding my prosopagnosia.
The first situation occurred on an afternoon when most of us spent time ice skating at an outdoor skating rink. It was a fun experience for me, although frustrating at times. I had not been on ice skates in over 20 years, and I didn’t remember that ice skating was as difficult as it seemed on my first experience in the two decades since I had last tried. In that time period, I had undergone surgery on each of my feet, and, as was pointed out to me, I had grown quite a bit. My balance was definitely off, and I could not gain enough momentum to really get going. Twice around the rink practically tethered to the rink walls was as much frustration as I was willing to endure, but I am nonetheless glad that I tried it again.
Glenn skating in New York City
Photograph taken by Jody Drezner Alperin, November, 2012
Exiting the rink, I located one of the people in my group who had not gone skating. I knew where he had set himself down, at a table with a vantage point through some windows where it was possible to watch people skating, so I knew where to find him. I took off my skates and got my shoes back on, and then stared out at the rink through the windows. This is what I saw: I was looking through the lens of a kaleidoscope, watching the people go by as if they were dots, indistinguishable from one to the other, but beautiful as a whole. The dots kept moving, some quickly, some slowly. Occasionally, some dots would fall down. The colorful coats seemed indistinguishable from the hats, which further seemed indistinguishable from the people who were wearing them. As the dots sped by, I found myself mesmerized, just watching them, a blur of colors speeding across my visual field.
When I could bring myself to focus on specific people, a much easier thing for me to do when I was on the ice than when I was off of it, I could tell that there were individual people there, but it was still no easier for me to distinguish one person from another. Lost from this experience was a feeling of connectedness, something I have written about here. It was as if I had walked into a room of a hundred people, but I felt like I was the only person there, a lonely experience I am all too familiar with.
The second situation brought me many of the same feelings, but with a much sharper focus. A large group of us, nearly all of whom were familiar with my prosopagnosia, had decided to go out for a fairly lengthy walk. I was certainly up for a walk, and I definitely enjoy walks, but this was different due to the size of the group I was going with and the overwhelming quantity of people in the vicinity of which we were walking. I generally enjoy the exercise and it seemed like a good opportunity to spend additional time with the family.
Shortly after we left my brother’s house, I became very anxious although I wasn't entirely aware of it at that moment in time. As is typical for me when I travel in a group, I had drawn upon my well-honed survival instincts and refused to let my eyes off of at least one person within my group. About half way through this walk, I realized that the only thing I was paying attention to was where that other person was located within my group. My entire purpose for going on the walk, to get some enjoyment out of the walk, to look around, to actually be with family, was being squandered by my own anxiety at being separated from the group of people I was with and the fear of not being able to reconnect with them because of my prosopagnosia in the event I did get separated. Despite my anxiousness, I was still able to observe that there were always at least three sets of eyes looking out for me. Initially, that did little to qualm my fears. I was still nervous that I would get separated and lost from my group, and the prospect of reconnecting with a group once separated from it is very scary for me. Eventually, using radical acceptance and weighing the evidence available to me, I reasoned that the people I was with would not let me get separated from them. From that point forward, I was able to enjoy the walk a little more. When we got back to my brother’s house, I verbally recapped some of the feelings I had had on the walk with certain family members.
The third incident occurred a day after the incident I just described. There was an outdoor craft fair which two of my cousins were interested in window-shopping, and I was invited to go on another walk with them. This walk was much shorter, and because I was only with two people, I didn't feel anywhere near as anxious as I had the previous day. I really was able to enjoy their company and the different sights and sounds we encountered.
There is always a certain level of anxiety that I walk around with. Most of the time, I find this anxiety manageable, but when it is not, I must reevaluate any coping strategies I have chosen to utilize and determine what, if anything, I could do differently the next time I am presented with a similar situation. I have worked through some of that process in therapy, and I suppose the rest is left up to future experimentation and application of those discussions. None of that, however, is likely to change some of my underlying feelings, particularly my anger and frustration about the unfairness of my needing to work so hard at coming up with future coping strategies. Sometimes, I just want to throw my arms and hands up in the air. “Is it really worth it?” I ask myself. Intellectually, I understand that the answer is a resounding “Yes!” but emotionally, I am never as certain. It is so much easier to be safe, to spend time alone, to not deal with that anxiety that I hate and resent even having to deal with. However, just because it is easy does not mean it would be the best decision for me in the long run. I often find myself straddling the line between “being alone” and “being lonely.” The former is a choice I often enjoy while the latter is a feeling which, if left unchecked, leads down the path of depression, something I have struggled with for the better part of my life.
Depression can be a terrible thing. It can cause a person to believe that difficult situations in life will never change. However, the truth is that such situations can change. I just have to be willing and able to implement strategies to make those kinds of social situations, which tend to make me more depressed, easier for me to handle. Even though I deeply resent the need for coming up with and implementing additional strategies to help me feel less anxious, failing to take the time to do so would only lead me to experience the same kind of feelings when I am next presented with a similar situation.
Every day, living with prosopagnosia presents me with challenges and a variety of feelings associated with those challenges. While it is not easy for me to do, I must remember that I can either let prosopagnosia and the anxiety I experience beat me, or I can take the extra time necessary for me to develop and implement more effective coping strategies which will allow me to function with greater ease and less anxiety. I didn’t ask for these challenges, and I wouldn't wish them on anybody, but I am learning to deal with them. I hope I am a strong enough person to overcome these challenges regardless of how great they may seem to me.
©2012 Glenn Alperin
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Prosopagnosia Road image ©2012 Glenn Alperin
Photograph taken by Jody Drezner Alperin, November, 2012