I am writing this essay on Lydia’s behalf because she is not capable of writing an essay herself. But I discussed this self-portrait with her to try to discover what she was feeling when she created it. Lydia loves to express herself through art and dance and art class is her favorite subject.

In this picture, Lydia is very happy because she is imagining that she can use her special powers to control her seizures. The eyes are black and purple, “like in the TV series, Heros, where their eyes turn color when they use their special powers.”

I also believe that the dark eyes might represent the darkness that she experiences when she loses consciousness. In this picture, Lydia is also showing off her red nail polish, and the red shirt and pants are her school colors (note the name of her school in pencil).

Lydia has tuberous sclerosis and has had seizures nearly every day for the past 14 (out of her 15) years. She wakes up nearly every morning to a couple of seizures and also sometimes has them during the day. Lately, she has experienced seizures that come with no warning and make her fall down, sometimes causing her to hurt herself. She has to wear a helmet much of the time. She also has “cluster” seizures every few days, where intervention is required to stop them or they would continue indefinitely. The many overnight video EEGs that she has had also show that she has lots of spikes during the night.

We have tried everything possible, including nearly 20 anti-seizure medications, the VNS, and many tests to see if she is a candidate for brain surgery (which she is not). We are now 4 months into the low glucose diet for seizures and it appears to be helping just a little. Lydia has been wonderful about eating the right foods and not eating the high-carb foods that she likes so much. She understands how important this is in trying to control the seizures that currently disturb her life.

I am amazed at her courage, through all the many tests and hospitalizations, and now the new challenge to her self-control. I am also amazed at her positive attitude and her eagerness to run, dance, swim, and do most everything that others do, despite the fact that she might fall at any time. She is the most courageous kid that I have ever known!

This essay was written by Lydia’s mother to accompany the self-portrait presented here. Lydia won the “Expressions of Courage” contest at her school for her drawing. Dr. Folio is a musician, composer, and Assistant Professor of Music Theory at Temple University.