Tears of Recognition

I saw a seizure specialist for the first time today. It was a fiasco getting there. The hospital was completely disorganized, and the right hand did not know what the left was doing. I was sent to three different locations (in two different buildings)-- and had an inquiry by my name placed in two different computers by two different hospital staff people-- before finally being sent to the correct location for the seizure clinic.

The clinic is part of Harvard Medical School. For a good portion of my young adulthood, I wanted to attend Harvard Medical School. Life meanwhile took another direction. It was odd now to be driving past the school as a patient, and to have (presumably) one of its students (a resident perhaps?) conduct my patient interview and physical exam.

After finishing the interview and the exam, this doctor-- who I will call the "interview doctor"-- left the room, and he came back about ten or fifteen minutes later with the doctor to whom I'd originally been referred, who I will call the "recommendations doctor." She made the recommendations for next steps.

Basically, there are two things the "recommendations doctor" would like to do, to get a better understanding of what is happening in my brain. First, she would like to send me home with a portable EEG unit that I will keep on for 48 hours. During this time, it will take intermittent recordings. G. can also turn it on to do a recording if she feels I am spacing out. This provides a panaromic view of the electrical activity in my brain. The EEG I had done a while back was only a snapshot, and although it came back abnormal, provides little information.

The other thing the "recommendations doctor" would like to do is a high resolution MRI. Though the MRI I recently had been done was with contrast dye, giving us a good amount of information, the high resolution MRI will give us even more information.

The "recommendations doctor" explained to me that she is guessing I am having seizures that are impacting a large part of my brain, or indeed the whole thing. My symptoms would be more localized if the seizures were more localized.

When she first came into the room, the "recommendations doctor" asked me some clarifying timeline questions. Since my memory has been impacted in the course of my symptoms, the timeline had been difficult for me in the first place. But basically what I explained to the "interview doctor" was that I don't remember being especially symptomatic until maybe about five years ago. It has gotten slowly but progressively worse since then, and only within the last year or year and and a half was it bad enough that G. was alarmed to the point of forcing my hand so that I would see a doctor.

The clarifying questions were interesting. The "recommendations doctor" was able to use certain periods of time (for example, classes I took in high school) to help me create a better timeline. It was during that conversation when I remembered some experiences in school from early childhood. They may have been early symptoms. Tears began streaming down my face as the memories poured in. For years, those memories were markers of low academic self-esteem. Suddenly, those memories were also transformed into potential markers of a seizure disorder.

I was overcome by the need to apologize to the doctors for my tears. I felt so silly, sitting there in the clinic crying as I remembered little hardships about being a young student. The "recommendations doctor" let me know it was okay to cry. She said, "It seems to me we get a lot of tears around here. I think they are tears of recognition." Indeed.

She said that the seizures can go unnoticed for years and years even if they occur for say, as long as 30 or 45 seconds. She said she felt like intelligence could make up for large chunks of missing time. The brain just does double-time. I guess she was saying I am smart ;-). But this gets challenging as we get older, she explained, because our brains end up doing more multi-tasking as we balance our jobs and our families, and so forth. When we are younger and more focused on something like school, we have more reserves for a brain doing double duty. I don't have that luxury now, which may be why things are progressing and I was finally pushed to see a neurologist. Apparently, this isn't rare.

I had been thinking about my case as a "new(ish) onset" of seizures. Hmmm.

What an interesting day it has been.