The woman with a lemon-sized hole in her brain
Cole Cohen grew up never knowing why she couldn't understand time or space. She wasn't able to read an analog clock, judge how fast a car was coming down the street, or figure out how long to hug someone.
Doctors repeatedly misdiagnosed and treated her for a number of learning disabilities, including ADD/ADHD and dyslexia. Finally, when she was 26, an occupational therapist suggested Cohen get an MRI.
The results were astounding: she had a hole in her brain the size of a lemon. Filled with spinal and brain fluid, the hole, doctors explained, was where the parietal lobe would have been. That's the part of the brain that controls spatial sense, number comprehension, sensory information and navigation.
As far as Cohen knows, no one else in the world is living with such a large hole in the brain. There is no treatment for what she has, but now at 34, she feels relieved to know what's been causing her a lifetime of mysterious symptoms, and she has found ways to help manage her condition.
Cohen spoke with CBS News about her new memoir, "Head Case: My Brain and Other Wonders," which documents her life before and after her diagnosis.
Q: You weren't accurately diagnosed until you were 26 years old. Tell me a little about your childhood, and what were some of the challenges you faced growing up in school and at home?
A: The first signs that there was something unusual going on started in kindergarten. I was told I have a very unique style of tying shoes. I can tie them but I guess I do it very differently than other people. I still don't see it so it would be hard for me to tell you what it is. I also had a hard time learning how to tell analog time. To this day I still wear a digital watch. I have a really difficult time with math, addition, subtraction. All of these things pointed to a learning disability, so I went to doctors, looking for the learning disability that would fit me. I was tested for dyslexia and ADD. I had all kinds of misdiagnoses.
When I was a teenager, I tried to learn how to drive, but I found it very overwhelming and confusing. I now know that's because I have a hard time judging space and distance, but at the time I didn't realize that was the issue.
Q: Can you describe how you felt when you saw your brain scan and received your diagnosis?
A: It was a shock and it was also a relief. It finally all made sense why I couldn't do math in my head and why I had trouble judging things spatially. So in some ways even though it was very unusual news, it was also very good news because I understand so much more about myself now than if I had never known about it.
Q: In your book, you talk about your experiences shopping for groceries. Could you describe what such everyday activities are like for you?
A: When I go to the grocery store I go to every week, it takes me a long time to find things because I don't have a memory of where things are. My mom would always tell me things like, "Dairy is always in the back of the store and produce is always in the front." But I never noticed that. It's not something I've ever picked up on. When I go grocery shopping, I use the signs and it's as if I'm in a new store every time.
Q: Have you developed coping mechanisms to make everyday activities easier for you?
A: Well, since I was born with this and since I've been living with it for so long, I already have most of the tools for compensating because I've automatically picked up things that have helped me. I tend to wear ballet flats and sneakers, for example, so I can avoid tying shoes. I wear a digital watch. I have a tipping calculator that I use on my cellphone. Little things like that help make my life easier. Since the diagnosis, I also do some brain strengthening exercises on the computer that force me to use the other part of my brain.
Q: How has this condition affected your relationships throughout your life? And did getting the diagnosis impact how you relate to other people?
A: What I used to think of as social anxiety, I now realize is more me trying to figure out spatial relations between two bodies. It's difficult for other people to understand because you can't see it or experience it. You just have to believe me when I'm telling you that I'm not sure when I should cross the street, which if you don't know me and don't know what I have, that seems like a pretty ridiculous thing to say. It's sort of an act of faith in a way I think a lot of relationships are.
Growing up, I took a lot more attention than my sisters, and when we didn't know what it was that I had, it was confusing for them. But with my diagnosis, it definitely helps now to be able to explain. And I think it's helped me to realize that there's a lot going on for everyone and we don't know the whole story. I don't know what you went through today and how you're feeling and even if you were to tell me, I can't be in your body and experience it. So I think it's helped me to have more empathy with people and patience when situations are confusing because I know that I need that patience and empathy from people, as well.
Q: What do you hope to accomplish with your book?
A: I'm most excited to start a conversation about invisible disabilities. I think that's a really broad spectrum. That could mean a lot of different kinds of people. We hear about autism or mental illnesses, and those are kinds of invisible disabilities, but I never thought about brain injury as falling under that category, but it does.
