I think people often take stock of how I spend my days and see something lazy or wasteful there. I generally (on a low pain or manageable pain day) wake up, work out, putz around getting ready, go to campus and work as hard as I can, come home and then alternate between periods of rest, work, and watching TV. I don’t particularly like to go out during the week and I mostly just want to be in bed at a reasonable time, get my work done and not get a headache. I enjoy those days, especially when they go just right. The precarious balance of my pain to ability ratio is so fragile, even this long after surgery that a good day is one where I lived out my tasks with radiant energy and a cute outfit on. It’s pretty straight forward.
I recently had a friend passive aggressively tell me I’d been avoiding hanging out. This person poked and prodded to come to a reason. What had been done that left me so hidden away and sad? Ok great, thanks for your assumptions. I’m not hiding, I’m working. I’m not avoiding, I’m prioritizing. For the first time in my life I am putting (at least I’m trying to put) my health and my work first and my true friends, they get it, they love me for who I am and I love them the same way. It’s the ones that emotionally take and take and take and forget to be present to return that, they are the ones that can’t seem to accept that I am invested in my work, invested in my life. The way I’ve chosen to live it. I’m just the sum of my failures and the total of my pain to some people. How could anything mean anything when she’s been through so much? I hear them mutter it, as patronizing advice gets passed down. I try to forget those voices as I hear the ones that genuinely love me and patiently help me through those problems and that pain and the ones that will always be there in the most real way. Then, I feel better about how I spend my busy, busy days.
When I close my eyes the world spins. My skin tingles and I have the sense I may be falling through an endless darkness despite the stability of the mattress under my back. My toes feel weightless and so do my bones but my head feels heavy. It’s the vertigo and if you let it, it carries you away with it, drowning you in the endless peril of falling everywhere and no where all at once. It’s draining, scary at times and just plain exhausting. I recently read a blog post about how fatigue is an often overlooked symptom of acoustic neuroma. So when the sky and ground seem to be falling and the world enters this endless blur I turn on the TV, usually something once seen, familiar enough to comfort me and for me to listen to with closed eyes as I imagine the familiar faces perform in my minds eye. I hear people whisper, how sad she watches so much TV, why not jump in the car? Visit a friend? I do visit my friends, I’m actually quite proud of my relationships with a family of choice that is quite supportive here in Boulder, I hope I am supportive of them too. But this isn’t about that, I watch because I choose to. Get a hobby? You say? I have one! It’s watching TV,silly! I watch because I want to. To carry me away for a moment. To give me a break from the swirling of dissertation ideas and the swirling universe of my brain tumor and vertigo. And in those moments, when I watch or work, or live life on my own terms, I’m not how so many choose to see me: resigned to the world of pain, of sadness and just plain avoiding my life. Instead, I’m a powerful force that managed all there was to manage in the day, and chose to escape with a story, that keeps my mind busy so my body can float away on the tenuous wings of my vertigo.
Peace and love,
For those of us with an “invisible disease” such as a brain tumor, escape is such a wonderful thing.