In the weeks and months after I was diagnosed with prosopagnosia, I agonized over how to tell people. I dreaded and postponed telling anyone outside my immediate family. My therapist urged me to come out. "Choose one friend," he said. "You'll see. It's not going to be a big deal to people."
But I couldn't do it. I knew it was going to be a huge deal. I was going to have to say "I often don't know you, I have been pretending to know you all these years and now I want you to tell me, when we meet, who you are." I couldn't imagine saying those words out loud.
I had lived my whole life compensating (working hard to figure out who was talking to me by attending to voice, context, subject matter), avoiding (skipping faculty meetings and all manner of consortia and festivity at the college where I teach), and hiding (depressions, isolation, workaholism). Now I was just going to march out into the world and tell everyone how hard it was to know them? I was terrified people would reject me. And my diagnosis.
Finally, I started with one friend (a psychology prof at my college) and then another and then an email to my campus community and now, seven years later, I tell everyone I meet right out of the gate. I don't even think about it anymore. Now, there's no drama at all, no fear. It's just a basic thing about me-I have brown hair, I love dogs, I have a vintage twin-set collection; and, I have prosopagnosia.
It took me years of practice to achieve this level of confidence and comfort with telling; it was very hard at first, but each time I told someone, it was a tiny bit easier the next time.
It's turned out to be the best thing that ever happened to me. Ironically, this disorder which isolated me and terrified me and limited my ability to engage meaningfully in the social world, has been the vehicle for deeper connection.
Prosopagnosia has taught me my four most valuable life lessons.
1. Asking for help. We all have brains that are really good at some things and quite disappointing in other areas. We all need help-with names, directions, public speaking, balancing our finances. My social thriving (I want more than survival, much more) depends on my asking, calmly, clearly and plainly-no drama, no apology-for assistance. On a daily basis, I have to ask others for help. Now, when I don't understand something, I always ask for help. This practice has changed my life, my relationships, my teaching. Last week, a student was in my office and I didn't understand the student's need. Instead of leaping to my own conclusion, I know now I'm not getting it. So, I asked more questions. We went very slowly and by the end of the appointment, I realized my first five "solutions" would have been absolutely wrong. I give myself more time to find out, to see, to know. My teaching, my friendships, and my faith life have been enriched dramatically by what I learned from prosopagnosia about simply asking for help in understanding what's before us.
2. Life is lived in uncertainty. I have spent my life in profoundly disorienting uncertainty. Before my diagnosis, I didn't have a label for the swamp of chaos that overtook me on a daily basis. I didn't know what I didn't know-I suspected it was quite a lot. But I have taught myself, these past seven years post diagnosis, how to not freak out in the face of uncertainty. When I don't know something, I'm able to stay calm, look closer, trust. It may be the most valuable life skill I've got.
3. People are amazingly good. I grew up in a house where the outside world wasn't to be trusted. I struggled to trust my own experience, because I made bizarre mistakes, not knowing my own friends' faces. Or my own face. I grew up in a brain and in a home where things were unreliable, changeable, and often impossible to comprehend. But after learning about prosopagnosia, and coming out into the world with it, I have been absolutely overwhelmed by the goodness of people. Almost every single person has stepped in. People offer to help me, always. I feel more connected, thanks to proposagnosia, to my fellow humans than ever before.
4. Growth is possible. When I first started coming out, I couldn't imagine living the entire rest of my life having to tell people this super-weird thing about myself. I was consumed with shame and anxiety when I told people about my condition. But it got so much easier. Now, I have confidence and clarity and peace and happiness. Telling is easy. My friendships are deeper and more authentic. Prosopagnosia has been the means for incredible personal growth for me. I know now how profoundly a person can change and mature, even at (especially at?) midlife. It wasn't easy. It took a long time. But through this disorder, I have gained enormous respect for our stunning potential to remake our lives and to learn how to engage authentically and deeply in the world.
I'm not sure I would have learned these lessons without prosopagnosia. For me, prosopagnosia has been, in all honesty, something of a miracle.
