Head above water

So recently things have just been plain hard. My spirits were relatively low and I had some pretty rough moments. Last week I flew to Poughkeepsie, NY for a conference. Before going there I had come down with a pretty nasty cold and couldn’t really feel my face because my sinuses wanted to explode. Between the cold, stress of giving my first ever exam to my own class and being totally unprepared for life, I had a lot of up and down moments. I was emotional and in this stage of reevaluating everything in my life. I would stare off to space and think, I never imagined my life, at this stage to look like this. And it wasn’t that I am somehow disappointed. I wasn’t and I’m not. Rather I was just confused. How could I know so much and yet so little? How is it that I just can’t understand? I was grappling with issues of love and commitment, health and sacrifice, reality and expectations, faith and the world. What did I even believe in anymore? I was and really still am confused.

I kept looking down at my hand where I had previously written the word “laugh” and it has washed away. Outwardly I have done a great job keeping up with the laughing and the smiling and the jokes but the veneer is beginning to fade. I just want my head to stop hurting. My new word is “Fearless” and it is on the necklace I have had around my neck since before I knew all I had to be fearless in the face of. I look down at it often, I hold it between my thumb and forefinger. I hope that I can channel that idea. I’ve been through much worse than this. I can do this. I know I can. But I am angry a lot and all of the other problems in my life, from minor to major now seem magnified. They somehow seem urgent to me. I have a bucket list to get to while I am still somewhat able. So I console myself with the notion that at least if I am all janky and messed up, looking like Quasimodo later, I can get a service dog to cart my lopsided ass around town. That’s a good silver lining right?

I think part of the problem is that I have no control. The things I thought I knew are not universal truths, they are constructions. I don’t KNOW anything. And the stuff that hurts most (physically that is) I can’t do anything about. I can’t get to the other side of my skull and pull Herbert out. He isn’t a scab I can pick at or anything I can see but I can sure as hell feel him. I want him gone. I want my life back. I want my truth back. I have to stop sometimes and realize that even the non physical stuff, the life learning things, I really don’t control those either… what the heck can I control?

I was sitting on the plane coming home from what was largely a disappointing conference and the stress of being away, not having all my right foods to eat, my painful cold, and sheer exhaustion. I leaned my head back in the chair and tried to close my eyes (I had wanted to read but the plane was enforcing sleep by turning EVERY light off). I finally lulled myself into some semblance of a sleep. I woke suddenly, awaken by my own crying. I felt like I was being attacked, every fiber, ever nerve, every last bit of the right side of my body was in violent pain. This can’t be real, I thought. So I just closed my eyes again. Had I not been aware of Herbert and his desire to attack me I would have thought something very serious was happening. A fleeting thought passed through my mind, that maybe I should ground the plane, I didn’t know if I could withstand this. But what would they do? No one can fix this. I buried my head in my hands and hoped the ride would end soon. And it did. Soon enough I was recovering and running across a new airport. The Detroit airport, which has a strange underground funhouse hallway with lights and creepy music, that is really not conducive to my condition… I finally begin to feel the pain alleviate and then my flight is called, I climb aboard, leaned back in my chair and there it was. It was back. Dammit! Excruciating doesn’t even describe it. My vision was blurred, my hands were trembling, my whole body was tingling. I was definitely afraid. I had to be fearless. I held my head in my hands and realized the positioning of my head impacted the pain. It was like with the increased pressure of being sick and being on a plane, the position of my head either really pissed Herbert off or made it so he could climb into his freshly cleaned sheets and take a nap, and get off my back for a while. So I stayed, hunched forward in my chair, the closest to fetal position you can get on a plane, and waited it out. It was like I was staring Herbert in the face and saying, “You give up, because I won’t! Stand down! Stand down!” Eventually, he did. I win this one, asshole.

I have had to give in to my utter mediocrity. I am not able to do what I was before, not because I can’t physically, but because navigating these emotional places takes a lot of time. It is exhausting. It is frustrating and it manifests itself in EVERYTHING. Even my bad hair days are a time of emotional devastation. Take for example this:

I mean who wouldn’t sink into a deep depression. I look in the mirror and I see this:

and it took so much combing and teasing to get to something as simple as this:

So what does my BAD HAIR DAY (or BAD HAIR YEAR 2012) have to do with my emotional state? Well, when the best you can do is just keep your head above water and your legs are tired from treading so long, and your head aches and your arms can’t splash anymore, every last thing counts. Every last moment matters. Every little challenge seems so big and yet so small and so you struggle to say, why can I not even handle this? This hairdo? Why does it matter? It shouldn’t, but it does. It’s that last little bit of weight that tries to drag you down and you can’t let it. So you look to your friends, as John Mayer says “Then the circle of your friends Will defend the silver lining.” And they do, whether it is Jason telling me endless jokes, making me smile all day long and proving his love in the funniest of ways, or my best friends text messages or funny ims, or little surprises on my doorstep. You see that silver lining and it pushes you back up. It’s like life’s flotation device. And it helps you keep your head above water. Way, way above water.

Tomorrow I go to AZ to meet with Dr. Spetzler. I am pretty excited and am hopeful he can fit me in for surgery during the holidays. Friday I will go back to Dr. Elliot to hear from the results of his gamma conference and see what the consensus of doctors said about my case, I have been putting this appointment off for a while. Then it will be serious decision time.

I hum this to myself sometimes to remind me that despite it all, we are here to share joy with each other and that is what I will do for you, if you keep helping me see how. “Pain throws your heart to the ground Love turns the whole thing around No, it won’t all go the way it should But I know the heart of life is good.” Thanks John Mayer, despite your weird racist rant and your strange public love life, your words give me comfort.

Peace and love – Samira

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