We’ve been playing with my seizure drugs since November. It has been difficult. I’ve been on four different drug ventures, each requiring 4-8 weeks of slow adjustment of dosage. The brain is a terribly sensitive little petunia, and although it insists upon this gentle handling, it feels absolutely no need to treat me in kind. I simply gave up on pleasure reading for a few months. It wasn’t until late May that I was willing to try a book, but I made it through The Hairstons: An American Family in Black and White with the wind at my back, and am now thoroughly engrossed in Game of Thrones. I am not back to “normal” yet, but I am as close as I have been since last fall. I’m more hopeful than I’ve been in a long time, and of course that is a good thing.
None of this is so very sad and terrible—this isn’t illness and misery, it is simply frustration. To engage in conversation and not be able to keep up—not because I don’t have anything to say, but because I can’t come up with the words I need quickly enough—is frustrating and makes me feel uneducated and uninformed. Many people have no idea why I point and stammer, and I find myself halfway wishing for a little badge to defend myself. I’m laughing at myself as I say this, but I also get laughed at by the ice cream stand boy when I point at what I want. I memorize what I want before I order, but the least change in the routine sends it away in a puff—I didn’t pre-plan for cone or cup (because obviously I want a cone), so the whole order has turned into pointing and smiling, as all my words are gone.
I seem perfectly well, and by most accounts I am, and so my odd behavior makes me seem simple when it crops up. Those who are around me the most have experienced the sudden (but now familiar) “I need a minute” prelude from me as my language ability crumbles to pieces, then has to rebuild (usually anywhere from ten seconds to a few minutes), and some of you have even been with me when this has happened and never known it. I can’t spell anymore (you are enjoying the powers of Microsoft Word), and I often feel as though I have lost much of what I am supposed to be spending my life gaining. Is that not the point of living? To gain a rich life? I feel as though I am aging in reverse—with the knowledge that if I were to compete with my eight year old self I would rank dismally against both her spelling and IQ tests.
One the other hand: I’m here. I think of a girl I knew in high school who died of brain cancer the year after we graduated. It hit her suddenly: She didn’t go to college; she didn’t have a husband; she never left home. How can I possibly say I haven’t had a rich life, don’t continue to have one? I think of her when I know I am simply feeling sorry for myself. The truth is, I am the luckiest person I know. That is truer than I have words to make anyone believe. Just as a jumping off point, I have Mark.
That is the story of the last half-year of my brain and I trying to get along. It is a relationship that has taken more energy and focus than I would like, but it has not been at the forefront of our lives—not even remotely. Mark and I both like what we do for work, who we spend our days with, and where we live. We have spent time with family and friends on both coasts, and a new baby boy has come into the world in my sister’s house. We have been swimming, and we have been fishing. Summer is here yet again, and my life is bright and illuminating.
Love, -Kristina
