My headaches increased in severity around mid March. Given that that was about the beginning of the implosion of my personal life, aside from a few calls to the doctors on call and visits to health forums online I chalked it up to stress. The headaches were substantially less frightening with Jason at the ready to rescue me if need be.
Now, when one hits when I wake up alone in my house, I curl up with my face in the pillow, legs firmly underneath me in an awkward child’s pose, and I rock back and forth while I quietly cry and breathe relief in as I breathe the pain out. It’s rare for me to get a headache that hurts so bad that tears seem to make it feel better. The constant pain often rears its ugly head in a nasty fashion, as though to warn me away from complacency, A few weeks ago my pain reached a 9 out of 10, 10 being unbearable. I called my local neurosurgeon and the doctor on call in AZ and told them about my pain, the neck tension and throbbing, the way the pain radiates through my face, the metallic bloody taste that refuses to leave the back of my throat. The doctor on call in AZ recognized there was little of consequence he could do for me in the moment so he calmly and quite kindly told me to grin and bear it. In so many words of course.
My doctor in Colorado, whom I respect and trust a great deal, though I may not always choose his treatment ordered a CT. After three hours working in the waiting room along side a melodramatic patient tattooed with an out of place giant Sponge Bob on her arm being cooed by her older man fiancé I was called back to see the doctor.
Quite frankly I hoped he’d say it’s all in my head. (Ba dum che!) But he didn’t. He said I’ve sprung a leak! He told me that my mastoid bones were perhaps the cause or perhaps the point at which my skull was reattached to itself. I knew there was a dent right there! He said fancy words like “syndrome of the trephined,” it all sounded delightfully British. Then he told me I had a “great deal” of honeycomb like bones in my skull. I asked what use they were and he told me they were an evolutionary feature. I’m pretty sure he was trying to tell me I am extremely, highly evolved. He even told me I am welcome to believe that if it makes me feel better. It does. Like really. I’m an evolutionary wonder.
Anyway, He went over options (SURGERY!) and said it won’t kill me anytime so I can drag my feet on my decision. It’s not the type of leak that is oozing out my scar, it just moves slowly into my throat. Recognizing it is what i expected should not make me hyperaware of it but it might. I don’t really want surgery though I’m likely not granted a choice in it.
I’ve noticed almost everyone in my family tiptoe around me not wanting to ask or stir up any of my crazy about this. They quietly wonder, act like its no big deal, gently ask me questions,
or fail to acknowledge at all. Or perhaps, like for me, the novelty has worn off and the sheer normalcy of my circumstance has stunned us all into frustrated silence. You see the thing is, I was told it was a good thing that I named Herbert. That I named my enemy, that I was coping. I guess it’s good to know who you’re facing (I imagine him to look like a cross between Nick cage and that weird meme).
But now? I don’t want to name him, or talk about this or name this leak or talk about it. And not just because the only names I can think of for my leak resemble prostitute names (Waterfall, Fountain, Flo). I want it gone, fixed, adjusted. I want my life back, my fitness, my stamina, my pain free days that become rarer and rarer.
Let me however make one thing abundantly clear. I’m pissed and it’s not all that funny anymore (it’s still a little funny – ok we can make it pretty funny but you get it…) but I’m not sad. I don’t need pity or sympathy or empathy or to talk it out. I’m not a poor baby. I don’t elicit a sad frowny face emoticon because its not sad. It’s hard, it’s frustrating, it’s annoying, it’s even fattening, but it’s just not sad. I still, miraculously, take care of myself and my family and friends are abundantly caring. We stand in for each other and I’m grateful to those who know me best, those who surprise me with a key lime pie, coffee, patience, companionship, and those who inspire me with their everyday strength and accomplishments. I’m so proud and inspired by the people in my life. We share stories not to elicit sympathy or pity. Not to aggrandize ourselves and our pursuits but to learn, to share an experience in comradery. To make the skies a bit brighter. I share not because I want to talk about it (though it may help) but because people share with me and it drives me forward and heals them as we move alongside one another.
So Flo and Herbert are hooking up inside my head, and I hate them for it but you know, as I’ve said before, you can’t really hate something that’s a part of you. So life goes on, and I despite my lesser moments, go on with it.
Peace and love -