Photos: My brain as of May 21, 2009

Note to MRI newbies: Scans are always viewed as a mirror image; what appears on the left is really on the right, and vice-versa.

See that empty spot in the left parietal lobe? That's my brain hole. Actually, it's more like a missing layer in my brain.

Are you thinking what I think you're thinking? Yes, I am affected by the missing layer--but it is minor. It is fortunate I am not missing a part of my frontal lobe (which is responsible for reasoning, planning, emotions, and some language skills), occipital lobe (responsible for visual processing), or temporal lobe (responsible for auditory processing, memory, and more speech). I'm glad my brain stem and limbic system are intact (responsible for trillions of autonomous functions we don't even think about).

But I do have epilepsy (a generic term for a seizure disorder). My seizures are controlled by medication I will take twice a day for the rest of my life. I also experience weird sensations associated with the parietal lobe. (This lobe is responsible for movement, balance, the awareness of your body in space, and perception of stimuli.)

How am I affected? Well, after my second surgery I walked with a cane and had to go through physical therapy to re-learn how to balance on my feet. Fortunately, neurons in other parts of my brain wanted to help me and they are currently rewiring themselves to pick up the slack.

The main thing that is different with me is my proprioception. Wikipedia has a great explanation of what this is, but in a nutshell, it is the awareness of where your body exists in space. It is the sense that keeps us from turning around and smacking ourselves into walls or burning our hands when they're close to a fire. Since my left lobe is affected, it is the right side of my body I have "issues" with ... On a daily basis I accidentally kick things with my right foot or run into doorways with my right shoulder. (It probably doesn't help that I'm always running around not looking where I'm going.)

The weirdest thing that happens to me is when I'm "surprised" by my right arm. Yes--when I'm not looking at it my arm can fool me into thinking it isn't a part of my body. When I see it I don't get scared (as in, "OMG, when the zombie appeared on screen I really flipped out!"), it's more like I'm amused that I didn't notice it before. Isn't that weird? I hear this proprioception issue is just a tiny taste if what it feels like to have had a stroke.

One more thing about the scans: If you look close you can see the titanium plate and screws that are used to fasten a piece of bone back into my skull after surgery. You can imagine how convenient it was to have this in place for the second surgery... and how much easier it was to heal!

A special thank you to my neuro-oncology nurse practitioner who got these images for me. Mady, you are the best.