I am finally caving in. It happened again this morning. I often wonder why I think it will be any different. I guess I’m like Charlie Brown with Lucy and the football. I keep expecting that one day, I WILL actually kick darn thing, and she won’t pull it away at the last minute. SUCKER! (yes)
“Just watch this video. it’s really interesting and informative!”
Another well meaning but insensitive holistic “cure“. Sigh.
So here I am, I’ve been reticent to tell any part of my story for fear that something I might say would hurt someone I care about. Therefore, I’ve revised, edited, and rewritten over and over again, and never shared. I realize that others don’t seem to have such compunctions when “advising” me.
So here is part of my edited story. I’m feeling brave.
The conundrum of sight and sound overwhelm me. Sound reverberates though me, pitch and timbre affecting me with varying intensity and result. The booming noises heightened by my state. Alarms and warnings meant to jolt, seem to penetrate my brain, creeping up and down my spine. It discombobulates me, and I begin to feel the terrible aura which foretells that my world will soon start to tremble, twitch, and spiral. I’m not on drugs. I live with migraine, the 3rd most prevalent and 6th most disabling disease in the world, according to the Migraine Research Foundation. Every day, I wonder if I will end up down the rabbit hole again. Lights blind me, rocking my world with nausea, pain, and turmoil. Strobes, do this too. Who knew? Words and worlds collide, and the synapses fail to connect as gibberish replaces intellect. Beauty melts into pain. I don my daily armor to protect me against the day’s onslaught, the combination of disability, agony, and emotional assault. With fortitude and determination, I perform a system check:
What’s working today?
What has only minor malfunction?
What is merely intense but livable pain?
Are systems go?
These questions loom before me every day.
Will I be sidelined today, or can I conquer another day?
The morning ritual. My mantra, affirmation… “Yes! I will make it through another day with a positive attitude and mindset intact.”
Then, my fingers become cold and numb. My phone’s biometric sensor won’t scan. Apparently, my iPhone thinks I’m dead. It’s the silly things that tip the apple cart sometimes. My hands start to tremble. Pain shoots through my bones, and my legs feel like they’re going to explode. The world blurs. I lean forward and the pain surges through my back, neck, and shoulders. My lower back radiates an agonizing reminder of the nerves that tingle through my spine. As I reach down to pull on my shoes, I hear and feel the bones crack, and a searing pain courses through me. I think of master Yoda fighting the dark side with grace and agility and then retrieving his cane and shuffling along. I smile inwardly. The force is strong with me. Though my pain condemns me it does not hobble me. I have hope, faith, and will.
Like a burgeoning game of chance and odds, with the stakes increasing and adapting every day, I live in Groundhog’s Day. I am stuck in this cycle of daily migraine for over 19 years.
It never goes away, nor do those who believe that they have all the right answers and (often ridiculous and insensitive) cures. The day-to-day barrage of people who know and understand without ever really listening. Who judge without compassion and empathy. And those who think they sympathize but are truly evaluating. Perhaps you don’t realize that even the wrong clothes can be tremendously painful, while the right ones can mean survival for another day. Things as innocuous as proper room lighting can mean the difference between incapacitation and ability.
Morning is wrought with pain, exhaustion, and ache. At the same time most people feel renewal, I look heavenward for the fortitude and affirmation to help me persevere through another day with positivity and strength. Loud noises and boisterous activities can be particularly tormenting. I revel in a moment of internal meditation and quiet calm, while coalescing with coffee and morning meds. It helps me re-center, to battle the migrainous monster another day.
I walk among you, but do not show the pain that builds inside me. The throbbing rush and pounding ache. I look like a “normal” person despite my disabling condition, and daily, I crusade against the dreadful monstrous ogre that dwells inside me. Like millions of other people, I am marginalized and disregarded for a misunderstood condition that cruelly attacks and indiscriminately takes prisoner so many innocent. It stigmatizes those who suffer, and relegates them to trivial status. I am but one, who paints this picture in hopes that my average day, can shed light where there is darkness.
I raise my voice for awareness, kindness, and compassion- not pity. I raise my voice for those who are just beginning their journey, for those who have been battling for years, and everyone in between. You are all heroes!
Headaches: They attack your brain and debilitate you from the command center.
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