Wednesday, February 26, 2014

Presence and Absence

Someday I want to talk about other topics like what helps or the interesting research happening with POTS right now but I am still in the middle of the longest rough patch I’ve ever had: two and a half months. This is a place for honesty and this is what I’m living right now. This isn’t bitching. This is what unbridled frustration looks like. I spent last weekend bed-ridden again with horrific GI problems, failure to be upright, and probably should have gone to the ER, again. I called my husband in a panic and told him to come home from work so we could go to the ER. Instead, I drank two bottles of Pedialyte and managed to stay conscious. I have called my doctors because this is not a fluke. I’m ready for this pattern to be over with. Absolutely done with it. I’ve lost 8 lbs. since January and it’s gross. I know I need to be a little more vigilant about my health and make some better choices, but damn that’s hard. I even stopped eating chocolate. My beloved chocolate! I have switched to a stricter diet and I’m taking (drinking) the medicine my GI dr gave me every day even though I hate it. I’m going to get some control back in my life because POTS/dysautonomia has been controlling me every day these last two months. I’m the boss. I make the rules. I’m getting this thing back on track. I refuse to let this become a new normal. I have some appointments coming up and may try a new medication (maybe). I just hope I can communicate what I’m going through—not be a weepy mess—when I talk to my doctors.

I missed another event last weekend. I think I am averaging going to 15% of the events I have been invited to this last year. It makes me desperately sad. I have always tried to be a reliable person in my personal and professional life but I am no longer reliable. I can’t rely on what my body will do even as I write this. It’s pure chaos. 
I’m trying to maintain some perspective that I don’t think most people would be doing what I do every day and going to work dealing with this chaos. I say this with confidence because I’ve spent years training as a chronically ill warrior. I have the battle scars to show I have earned this level of perseverance. I also don’t think my students or anyone I work with would realize how much I am struggling. They would probably just say I look exhausted. Perspective. I have a lot of ranks in looking like I am keeping it together. Someday I want to create a line of makeup for the chronically ill called Perpetually Exhausted. Makeup is sometimes war paint to leave the house and face the world.

Absence. Calling in sick to work. Missing events. The vacant staring from my couch while Harry Potter plays in the background. Absence. But I’m here. I’m here. I just hope that my absence doesn’t imply disengagement or disinterest. I hope no one assumes my absence is purposeful or intentional or that my absence will just be assumed. The view from chronic illness is that so much life is happening around you but you feel like only a small part of it. Time is ticking by and everyone is making plans, building a life, going out into the world. Sometimes I’m motionless as the world is spinning around me. But I am here. I am always here and I am reclaiming the energy for real, actual physical presence. I am coming back to the land of the living. I have the best friends and family. The most amazing husband anyone could dream of. I'll get back to enjoying life with them again. Experiencing and feeling the good times just as intensely as the bad. I’m here.

Musings: Presence and Absence

A particle, a being, a memory, a simple flesh. Conceived in the dust of stars and orchestral supernova. Tapped into the eternal center, a pulsing energy swirling in galaxies that coalesced in the magic of life. To utter these words, to walk a few steps, breathe once in this blink of a memory in the endless motion of time. Smallness in grandeur in the inescapable beauty of movement. The mercy of perpetuity. The cosmic exhale. The gravity to behold


  1. I am having a particularly rough time today, so I went back and read through your posts. It's helping me cope. Thanks for that, and thanks for sharing your struggles, lady.

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