They started when I was ten years old. The pain was like a branding iron through my neck into my skull. No escape. Initially doctors said children can't get headaches while I curled into a ball and tried not to exist. No physical cause like a knife or a steel trap to remove. No healing that signifies the end of suffering. My father gave me imitrex from his prescription. Sometimes I could understand why he was mostly emotionless. Emotions are a luxury you can't afford when pain controls your nerves. By the time I hit my twenties I'd become adept at appearing functional while feeling sharp, white hot waves of torment and nausea. You quietly excuse yourself to vomit. Drink two pots of coffee. Eat Tylenol, ibuprofen, naproxen like you own stock. You count the good days when there's no pressure or pain carving out your skull. There is no escape. You contemplate whether it's really worth it to live. Why do you have to survive like this? Who thought it was a good idea to genetically reproduce when this relentless genetically induced torture lies like a dragon in your nerves?
The neurologist wasn't surprised to meet me. He'd treated most of my father's side of the family, generations even. He went through the motions, tests, and MRI finally. In black and grey my brain looked like a wrinkly brain, perhaps to a knowledgeable eye there were things to see. He offered drugs. Drugs to hide symptoms, drugs to wear out other systems or make them reduce function. My brain goes too fast, it's constantly on and taking things in, anticipating threats, obstacles, stressors, and trying to find an escape before the next time the Dragon bites. The neurologist explained how my family has a flaw. The trigmental nerve is supposed to run parallel to the blood vessels going into my brain instead they circle each other like two enemies hell bent on destroying each other.
Instead of his pills I chose to learn self hypnosis to try to master my body. Some days I win. Some weeks are pain free like a reprieve for a dying convict only to wake because hot angry lightening is reverberating through my skull. In those moments I think of what a burden I am, how much I love my friends, how thinking of them distracts away from the agony.
Logic goes out the window, spoken words are torrential rain pounding into my ears without meaning just pressure. I have to form words and thoughts carefully, move like I'm going to explode as sometimes motor skills drop to the level of someone who's drunk. Hours pass, ebbing and crescendoes in the pain are unpredictable. I can look normal, sound normal and get by through it. I can't always recall things clearly afterwards as the focus it takes to function takes up the space memory would occupy. Normally my memories would be like a library, each area different books with pictures to recall specific facts, experiences, or trivia instead for the five to six days of pain there is chaos. One episode left me with a memory of pain, a cabin at a camp, uncomfortable bunk bed, and being asked repeatedly "what causes them?" Like being in Guantanamo and being questioned, all I could say was "strawberries can cause them." Strawberries have never caused any of my headaches. I've been allergy tested. Not allergy related. Chiropractors help sometimes to reduce the long endless stretches of furious nerves and muscle rioting. I remember many years where I had less than one good day in ten, good years where I have a hundred good days out of three hundred sixty five.
Your priorities are different when you live with Pain over your head and in it. You live for the good moments, savor the good feelings and moments. You capture them, wrestle them into your grasp and break apart obstacles for the priceless moments of beauty, kindness, and love. You listen to birds, crickets, waterfalls and rivers. You don't care about looks, makeup, perfume, fashion. You don't like wasting the good moments with pettiness or conflict. There is enough conflict in your head.
You rationalize, you beg your own mind for reprieve, you try barter. You try. You try. You end up having to stop taking NSAIDs because they've wrecked your digestive tract. You stop caring about laws when you find hash and cannabis with high CBD content cut the pain down to where it isn't a demon you contend with for control. The world doesn't look two dimensional, sounds stop being too loud and knife edged. Hypersensitivity in hearing, touch, vision drop back to human levels. My mind always wants to understand why I can only have negative impact hypersensitivity, shouldn't I get some compensation? There is none. Genetics does not care. It is relentless. It's written in my bones and blood. A myofascial dentist who practiced for over thirty years said I was the only true case of migraines he had ever encountered. There is a point where you can touch an end of the trignental nerve above your upper gun line. When he touched mine I flew out of the chair. Electrical shock lashed through my brain. I choked, gasped and shrieked. He apologized and had his aide get ice. Temporary cure: put ice on your neck or upper gumline in front of your molars. In about twenty minutes the pain will decrease. It may or may not go away, it may lie low until you think it's gone only to rise up just as wicked as before. A lot of things get labeled migraine because of symptoms. It's a catchall for headaches on one side of the head. I've blacked out before. I fight them sometimes. I forget that makes them worse. I have a hard time conceding to squiggly blood vessels and nerves with no IQ of their own. Nothing more humiliating than to lose to your own thoughtless tissue. Might as well have defective tattooed on your forehead.
When you live with Pain, you have a hard time connecting with others fully. You feel for others and you try to reduce their pain, you know you can handle it and you don't wish it on anyone else.
You shut off sensations in your body and learn to ignore them until they hit the wall.
A friend once asked why anyone would choose to live in pain. It's not a choice. It is. Choosing not to live would be admitting I'm not as strong as my genes. Many days I wish I wasn't born, I'm grateful for the good moments without pain but there's always the lurking enemy waiting for stress, muscle pain, nerve flares to give it the tools to overtake me again.
Emotions play across like shadows on the ground, not like ocean waves. They have little depth but stark appearances. It's hard to feel beyond the hot biting Dragon curled around your spine, knowing there's no song to put the beast to sleep.
This week I've started accupuncture at a sliding scale community clinic, Nadia is kind and gentle. She plans on using a technique called cupping to draw the coils of the dragons tail out. When I travel, she's encouraged me to continue treatment as it's likely five or six sessions may be needed. My friend Tama does accupuncture and said they've had many cases like mine, where they've pinned the proverbial Dragon down. I'm done wanting it dead, it's a part of me, I want it to heal. If they can do this it will be the best gift I've ever been given. I'm thirty nine. I've suffered for twenty nine years. I'd have done less time and had less pain if I were in solitary confinement for capital crimes. My only crime was being born.
I run through my days, drinking sunsets and friendship. I pause smelling roses, Ben gay, and Dragon balm. I feel the Sun, the warm hugs and the touch of friends as they endlessly try to work the muscles out. I memorize the flowers, the antics of squirrels, the soft playful nuzzling from my cat. I wrap my hands around life I draw it around me like a silk scarf in the breeze. I try to laugh. I challenge constantly, hoping the next hurdle will make me well enough to heal the Dragon and put it to rest for once and always.
That's what life is like with chronic pain.
Forty hour weeks aren't possible. Desk jobs aren't realistic. You do what you can when you can at a hundred percent. You can bluff your way through a few hours, even days. You can survive. That's it sometimes.
If you have someone with chronic pain in your life. Share the beautiful moments. Offer massage, hugs, laughter. Take them places that draw them beyond their hurt. Give them foods that distract and nourish them. Give them memories worth fighting for. Forgive them and understand why they don't always talk about it. We don't want pity. It doesn't help. Don't treat us like we're glass. We're diamonds. We cut. We may cut you, lashing out at our inner demons. I apologize. I may be elusive. Distant. I'm facing monsters you can't see in my smile.