Wednesday, March 28, 2018


migraine moment with my nurse dog. she refuses to leave my side when i am sick.

I’ve talked here, at great length, about the half-lived life. About the missing days that must span years at this point, if strung together. Anyone living with a chronic ailment/illness will have a darkened part—the sliver of living dedicated to the pain, stress, time, questions, research, and moments handed over/hardly ours to begin with. It is stitched in, a shadow learned long ago to break bliss in half. And if you’re like me, it’s been nearly 30 years. There is still surprise and wonderment. There is still woe and hate and that newborn feeling when I finally emerge on other side, relatively pain-free.

Where do the days go that I miss? I go to work on a Monday and my coworker asked if I enjoyed the weather the previous day. I’m honest: no, unfortunately I was out with a migraine all day. This coworker also deals with them, so he knows immediately and nods.

Sometimes I can see glimpses of the sun, hear the birds against the blue, from my lair of manmade darkness and blankets, wet wash rags and garbage can lined with plastic bag. Pillows stacked then scattered, a bottle of Nyquil on the nightstand when I am desperate. No, I will not make it in today. No, I cannot come to your show/cannot see my family/cannot run my errands/cannot do my laundry/fix dinner/kiss/laugh/watch some stupid tv/cannot live, cannot live, cannot live.

Chronic pain takes away. It gives, too. When it's a fairly strong thread throughout your living, you can see something that might even be considered good. Mind you, I wouldn't wish migraines on anyone. But when you feel that something deprives you, over and over again, you learn the true weight of well. On days when I feel [my version] of normal, time feels limitless. I want to savor every minute of functioning--to not only get all the things done that I must, but to extend it into things that I want. The act of reading a book or driving or talking becomes an act of beyond bliss. A breeze feels tremendous. Pain has turned the mundane into neon at times. The good becomes better than most.

Would I have such an understanding and admiration for the dark and the light without this ailment? Would I appreciate lengthy conversations the same? How would self care look? What would my normal be?

After 30 years, I want to see the good. As a part of acceptance, maybe this is required. Silver lining and all that. I think about the days that are gone because of it; I think about how much I've missed and how much I might going forward. I can avoid every trigger and still wake up some mornings all dressed in hell. This is why I don't drink anymore. I'm prone to hangovers without that particular elixir anyway-what's the point?

Too much sleep, too little of it. Too much caffeine, not enough. Red wine, msg, sugar. Flourescents, fermented, specific perfumes and strong cleaners. Hormones. I stick to my tight rope, still get blindsided even with purposeful balance.

I think about what I am when I am in pain. Where do I go/what do I become. There is a transition--animalistic, even. It is an involuntary answer to an unrelenting, baffling pain. I can view all the migraine paintings, read all the descriptions and still not get to the meat of it completely. It is a place where movement is agony. Sleep remains behind some thicket of thorns. The pillow could be cement--it all feels the same. It isn't death but I've wished for it. A cold wash rag becomes my best friend. Eat just to throw up something, instead of heaving empty. I grow completely silent because sound hates me.

Without this hurt, what would I have missed? And, wondered in the same breath:

I've had to say no to many things but, without them, how many times would I have forgotten about yes?

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