So every 6 months or so I get all morose and assume I am dying when I have my MRI's and am forced to see the images of my atypical brain and spine splayed across a huge computer screen at NIH. Sometimes I look and want to get upset, but it seems I would be overreacting given the general apathetic professionalism the doctors maintain. "Look, here is your brain, we can't count the tumors so just be careful mmmmkay? If you die, please be sure to let us know so we can replace you immediately. Now time is money, keep it moving." I ask what a spot is and they look at me patronizingly and tell me that is just more edema, don't worry, if it gets too bad we'll shave your head, saw it open and cut everything out. Now buh-bye, oh and make sure the nurse has your current payment information."
I seriously doubt any doctor actually knows the meaning of the word "stable." 3 months ago I had a brain MRI here near home just to check the "possible edema," you know that massive cloud of debris smashing up a huge chunk of my brain? I was told I was stable, I looked at the screen and remarked it did not look stable to me, but was promptly shooed away by a tech and told not to strain myself looking at the pretty pictures. Fast forward to this week at NIH where I was told the edema has now spread to both sides of my brain. This news was delivered with a practiced straight face, and I took it as such that I was meant to simply nod. At this point they tried to put me back on steroids and I started laughing. I told them oh we have done that, repeatedly, different types at different doses. They made me manic and unable to get through the most basic of tasks. Yet here we sit, with more swelling, so no I would rather not continue the crazy medication that is not working at all. I told him the medication I take for my eyes has helped tremendously over the last few months, and not that he had asked but I was able to see much better on it which to me signified less pressure. He nodded his assent and we shook hands and said good bye. At this point he went back to his life of delivering news to patients with an unreadable face, and me to mine in the corner of my couch.
I am home on the same medications I left with, with a most likely shortened prognosis, not that I was offered a prognosis or options beyond steroids. It seems odd to me that while the simplest of tasks can frustrate me to the point I want to cry and can't speak, going through the motions of neurological exams and results feels completely ordinary to me. So the doctor and I have that in common at least.
Wednesday, December 7, 2011
Before my eyes even open I smell the remains of a fire burning out and hear the roar of the sea nearby. Warm water laps at my toes and beneath is something as smooth as silk. I slowly look and see exactly what I expected, a vast expanse of black sand so smooth it cannot stick to the warmest of skin, running along a deep blue ocean without waves as far as I can see. The horizon is lined in pink and a soft sun you can look directly into warms me to the core. A deep breath draws in air, thick and sweet, without a hint of the ash the fire should have caused. The water begins to recede and an empty day settles on my chest. There are no numbers to count or time to pass here, no people who speak and nothing to need. Here I exist and nowhere else does. I remember things from before of course, but they seem of no consequence now. I do not ruminate or miss, I have left everything behind and live in a seclusion so thick that change seems both inevitable and impossible. A sigh escapes my lips and rather then explore all of the things I have seen before I simply lie back down and continue to exist. No dreams disturb me, for there is nothing to desire. No nightmares either, for there is nothing to fear. Each moment lies undefined and every step lacks depth. Finally, I place my finger on my lip and without further thought I bite myself as hard as I can. Warm blood trickles down and I realize I have not seen red since arriving wherever I am. I have not felt pain. Until now. Change has come.