Because it is painfully rare for me to have a moment completely alone (or it has been for the past five days), I feel compelled to talk to myself through my blog. There is no one demanding my time and attention. My presence isn’t being commanded at any conference sessions. No one is calling my name. I am completely alone, except for the always welcomed presence of Chewy and Magic. And I love it this way.
The past week has been a hyper-paced whirlwind of neurological sessions and statistics. I was in Nashville at an MS conference, completely immersed in disease and disability. My “handlers” maintain a frantic pace of conference coverage, demanding, in many cases, quantity over quality—always more, more, more. More meetings with pharmaceutical reps to secure (and sometimes PLEAD for) funding. More on-camera interviews. More patient advocacy receptions. More attendance of topic-centered sessions. Always more. I have the energy to keep up...at least for now.
But I know that this may not always be so.
This is true for everyone, but seems even more of a sinister statement of fact for me. I attended a session about Mitochondria and their roles in fueling cell energy, and how imperative their work is for MS patients. I still don’t have a firm grasp on the extent of their functionality, but I do know that their performance is integral to my sustained ability to walk. Or think. Or function. Without getting overly technical, shit got real this week.
So, listen. It’s not as though I’ve been in perpetual denial of my MS, per se. I try not to think about it too often because, realistically speaking, what can I do about it? Outside of taking care of myself and dutifully sustaining my disease-modifying therapy of natalizamab infusions, there’s not a damn thing I can do. It is not at all hyperbolic to say that it’s gonna do what it wants, and it can take my abilities at any time. I’ve experienced it with the optic neuritis that I had in 2013, when my eyes couldn’t focus or process color fully. Or in 2008 when I had nauseating vertigo and felt drunk for an entire week. Or at disease onset, when my hand frequently curled into a claw-like position BY ITSELF. Or when I feel like some sadistic motherfucker has a voodoo doll and is constantly stabbing me with rusty nails. Living with MS is like living in a damn funhouse, except that there’s absolutely no “fun” involved...it’s fucking horrifying sometimes. And sometimes ignorance is bliss when it comes to the inner mechanism of disease; sometimes it’s better to just not know, because it’s not as scary that way.
And yeah, I know how lucky I am that I can walk. I’m grateful for the abilities that I have and blah, blah, blah. I don’t take one second of my independence for granted, but the uncertainty is hard sometimes, ya know? I’m also sick of being told by the MS community that I have no credibility because I “look so good”...that I don’t know how it feels to have a disability. What is outwardly visible is like the tip of the iceberg—there’s so much going on under the water, so much that’s invisible. But I know. It’s always there.
So now, in the placid tranquility of my home, where Chewy and Magic are snuggling with me and i’m doing mundane tasks like laundry and article editing, I’m grateful for the quiet. For the peaceful solace that I get from listening to the birds chirp outside my window. For not having to talk to anyone or listen to anyone else talk at me. For the ability to talk to myself via blog post. And especially for the abilities that I have.
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