Ready to go home
i returned home with colin and my dad in tow. i had a lotta sleeping and recovering to do, i didn't leave the house, even in the wheelchair and i think both men were trying to be extra gentle around me. after the gamma knife i had three calm and peaceful days, no convulsions at all. i still had vertigo, balance problems, musle weakness (atonic seizure), nausea, earache, headache, blurred vision and musle spasms (myoclonus). i was also suffering from constant pressure and popping in my ears like when you are in an airplane. actually, this was one of my first symptoms and continues today. dr. tai eventually guessed at the cause; "you see the AVM is causing blood to pool in veins which is causing pressure in the brain, your ears popping is some of this pressure releasing", weird. but for three blissful days i had no muscle-tearing, brain-crawling, never-ending, terrifying convulsions. i was so happy, the gamma knife had made a difference. but i was so wrong . . .
on friday, february 16th the convulsions came back with a double whammy. an hour in the morning and two hours in the afternoon. after that things just got worse. i was having convulsions of up to 3 to 4 hours long where my body was alternately shaking so fast i could feel my brain rattling against my skull or my muscles would stiffen so hard that air being forced past my vocal chords would cause me to cry out. these are the typical symptoms of tonic-clonic (epileptic) seizures except i never lost consciousness and mine were much much longer, which i have more correctly decided to call them convulsions. i was also having moments where i would just stare blankly and i couldn't move a muscle (absence seizure). it was the same as before, but worse. more often, more painful, more scary. anything could set them off; noise, light, movement and i felt so horribly nauseous - even my legs felt naeseous! i couldn't watch movies, i couldn't read, i couldn't do ANYTHING. so i would lie in bed with my earplugs in (we have construction sites on both sides of our flat, horribly noisy) and the blanket over my head trying not to move. during all this i could feel the pressure, crawling and pain in my brain. i still do, and i always imagine that it is the heavy, impeded blood trying to flow through my tangled veins.
in my dark hole it was just me and my head. i would replay memories, innocent childhood memories and 'not-so-innocent' university memories. during all of those moments i had had this thing in my head. from the moment i was born the AVM was there, a secret birthmark, a birth defect. all the times i drank too much, played hockey, took drugs, played with the dog, ran around waitressing, kissed boys it had been inside my brain, growing and waiting for the time that it would finally let itself be known. what really confounded me was how oblivious i had been in every moment of my life. of course how could i have known, but the knowledge that i have now has changed the tone and colour of all those memories. the memories are not tainted, just different. now, when i think of myself writing my matric (final high school) exams; while i was straining my brain's cognitive faculties, i also imagine the AVM collecting blood, slowly getting bigger. it's almost like i was always a slightly different person than i imagined. we know so little about how our bodies work and how fragile they can be and we treat them with such disrespect. what else is growing inside my body that i don't know about, something that i will only find when i am 40 . . . it is a bizarre thought, but not one to ponder too much.
then my symptoms began to change. the convulsions began to change, which made everything that much scarier. i had started being able to deal with the familiar convulsion symptoms, but when new ones started i would become hysterical, maybe this change is the one that is going to kill me! basically, every muscle in my body was operating at the whim of my AVM and whatever the hell it was doing to the rest of my brain, i had no way of stopping it. there are no words to describe how you feel when your body is not your own, there is nothing you can do to change what your body is doing, you are basically waiting to see what happens - will i be okay or will i have a stroke? all hope disappears and there seems no end to the suffering. you just have to 'ride it out', whatta ride!
after my dad left on sunday, March 4th i had the unnerving experience of having these convulsions with a stranger. no colin, no dad, no mom, only dina our phillipino helper. i wasn't about to go crazy in front of a stranger, that's what family is for! so i think having her around actually helped me cope with the fear better. i started just closing my eyes, concentrating on my breathing and trying very hard to remain and appear calm, which is what i should have been doing all along.
i think what made the whole experience worse was that i had just gone through the hell of the gamma knife procedure, i was so proud and happy. and yet there were no positive effects to be seen, i felt unbelievably frustrated. i felt i had suffered enough, how could my situation be getting worse?!
