There is a feeling that goes along with chronic illness–a feeling that no one, including most chronically ill people, will ever tell you about.
It’s the feeling of I am going to lose my fucking mind. The one of I cannot fathom how I am going to continue like this for another second, let alone for the rest of my life.
I’m no Randy Pausch. And although I admire him, I often suspect that his final, spectacular, inspiring show of bravery was just that–a show. A performance. Professor Pausch did not disappoint. Knowing he had very little time left to shine, he shone as brightly as possible, and much of the YouTube-connected world, in turn, tuned in to bask in the glow.
One of the things that no one ever tells you about being sick is that it’s the healthy people–not the sick ones–who desperately need to maintain the illusion that illness is “manageable,” that “all that matters is a positive attitude,” that people with diseases like cancer, HIV / AIDS, MS, ALS, etc. are “living with” their respective diseases, rather than dying from them.
Over the course of the past year, I have found myself forced into a painful learning of that lesson. I have seen the faces of friends, superiors, and family members crumple like wilted roses and realized in that moment that I have to be the “strong” one, that these people need me to hold them up, to sustain them. What a paradox that the sick, on top of being sick, must also provide strength to the healthy. That the dying have been implicitly assigned the task of assuaging the fears of the living about the act of dying. These rules are unspoken. You learn them as you go along.
I am not the strong one.
Most days I want to fall to my knees and scream until I have no voice left. Or I want to burn the entire world to the ground. The emotions with which I struggle are far too big for me; much of the time, I feel like I cannot physically contain them within my own body. It is all too much to bear.
And yet if you saw me in person you would never know this. I would read the soft flower of your face and know that my unspoken job was to soothe your fears, to explain to you that everything is going to be ok. And those are the words I would speak to you: the gentle lies, the lullabies.
I got only four hours of sleep last night and have been running around since 7AM, so this is just a quick update for now, until I have time to post pics, etc.
1. The MRI took several hours. The radiologist was a rather severe and unpleasant Russian woman.
2. As my new neurologist suspected, I do indeed have 1 lesion on my thoracic spine—however, this is not new, but rather most likely the product of last summer’s massive flare-up. My previous neuros missed this lesion; apparently it’s easy to do, since spinal ones can be tricky to spot on MRI.
3. Including the spinal lesion, I have a total of 8 lesions in my central nervous system—7 of them in my brain.
4. No new lesions have developed since my MRI last July, just over a year ago.
5. The contrast (gadolinium) scans show no enhancing lesions, indicating no “active” inflammation in my central nervous system at this time.
4 and 5 are good. They mean that the chinese hamsters are doing what they are supposed to be doing, and with some degree of effectiveness.
Images of my brain, etc. forthcoming…