keys to your kingdom

car keys.

the ultimate expression of personal freedom in America, the symbol of mobility, ability; an extension of the individual. with a car many things are possible - travel, shopping, hauling, visiting or just plain driving for the pleasure of it. we take cars for granted - if you don't have one you are somehow deficient - and we've largely forgotten how powerful they are.

my wife has a car, a modest vehicle that gets her where she needs to go - work, school, errands, visits with friends and family. it's utility is undeniable. there is a faux-sportiness about it, and the color - blackberry - is quite pleasing to the eye. i know that car backwards and forwards with only one minor detail - i haven't a clue what it is like to drive it.

i have what is termed these days a "seizure disorder", known more widely as "epilepsy", once known as "having fits". my brain does not function correctly, prone to electro-chemical misfiring that renders it chaotic, unusable, dysfunctional. during these neurological meltdowns i may fall to the ground and shake violently, sit in a chair and stare off into space, drooling, or wander panicked around the house sniffing the air for a scent that exists only in my inside-out mind.

the aftermath of these seizures covers a range. at the minimum i am exhausted and confused when i come to or am forced to wake up. my muscles will be sore, my head in the thrall of a serious pounder, speech heavily slurred, thought largely impossible. if i'm really lucky i'll still have the smell of burning wire or insulation in my nose, and the taste of hot metal in my mouth, both by-products of the seizures involving that nonexistent odor. a long period of sleep is required for me to function at even the most rudimentary level.

the permanent effects become more pronounced as the seizures continue. my short term memory is a mess, i'm very forgetful, and while speaking or writing i'll lose words, and i mean lose them so completely i'll have to find another way to speak/write my thought. i'm prone to sudden exhaustion, sleep poorly, and my temper has become short, too short, which is hard on rachel. coupled with my instant forgetfulness, i've started quite a few needless arguments based on the fruits of a faulty memory.

my first seizure occurred when i was 20 years old - not exactly rare, but not that common. as far as i know it was not the direct result of a brain injury, though my left frontal lobe does show two very small areas of scarring. it is not known whether or not this has any relation to the seizures, though the only one caught during eeg monitoring originated from that same lobe. i have been medicated on and off for the last twenty years with no real success. presently, i am at the end of the medication road, taking my current prescription as much to satisfy my neurologist (an excellent doctor - high praise from someone like me) as to control seizures. my longest period without seizures was eighteen months, during which time i was not taking any meds at all. the pace, variety, and severity of the seizures has increased over the years.

the treatments left to me are all invasive, requiring surgical testing to determine my fitness for the procedures themselves. "it's only brain surgery" my doctor cracks in his deadpan way. for the time being i'm unprepared to risk the possible loss of function, which varies wildly depending upon which parts of the brain must be removed. perhaps walking won't be possible, or speech, there may be memory loss, and so forth.

so for the indeterminate future i have to find a way to get along with a brain and body prepared to betray me without a seconds warning. i cannot leave the house by myself. fear of having seizures in public or finding myself appearing stupid because my memory has chosen an inopportune moment to abandon me keeps me at home. so does the sheer danger of walking around by myself and the potentially fatal possibilities of having a seizure while crossing the road or using the stairs, or any of a dozen other scenarios. rachel works and goes to school, so i'm pretty much on my own, essentially house bound.

the immobility may be somewhat alleviated in months to come. i am applying to an organization called Paws With A Cause, a non profit that raises and trains working dogs to aid the disabled and chronically ill. for epileptics there are seizure response dogs which can be trained to respond in a variety of ways depending upon the nature of the seizures the person experiences. this can include staying with me, trying to awaken me, bringing the phone so i can call for help, and monitoring me as i move about the house, or go outside. in the outside world the dog can help me get around, blocking me before i walk into objects, go down stairs, cross the street. once given a command (something i would not be able to do during a seizure) the dog would allow me to proceed. it would also be able to alert strangers to my status, and carry a cell phone pre-programmed with my wife's phone number as well as my meds.

the application process has only begun, and i don't know if i will be approved nor how long it will all take, but this could be my set of keys to the kingdom.

of course, even with the dog at my side, i still won't be able to drive. :)