MigrainePal — Carl Cincinnato. Remember the Australian guy who hosts the Migraine World Summit? His blog takes a deep dive into Migraine. Keep your eyes open for her full-length cookbook coming soon! MyHopefulBrain — Roni Jones. Roni finds the humor in life. She lives with fibro, Migraine, a few other conditions, and always a boatload of hope. Shoshana is an outstanding patient advocate who brought the Migraine community together with her CGRP facebook group.
Migraine Meanderings is a place for resources, memes, and comfort. The Golden girl of Migraine advocacy, Katie needs little introduction. Despite daily pain, she shows up and speaks up. The Mother of Migraine advocacy, Teri also needs little introduction. Michelle is authentic and kind in everything that she does, including blogging. Follow her on facebook, too, for her live videos and advocacy updates.
Once thunderous, the waves roll sleepily forward and back, tumbling over each other. Like always, the light catches on the water and the sky and the gold flecks in the surf. Little bits of gold hide in plain sight, like proof of holiness or magic. The tide gets real, real low and the birds come to feast.
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The quiet in between where the waves once touched and where they are now is a landscape — a sandscape — complete with canyons, streams, and gifts for hungry willets — clams, crabs, muscles, and sand dollars. I watch a group of plovers, each the size of a ping-pong ball, feast and sing and run. They live for this time when the waves are calm enough to outrun. My memory sweeps the sand with the waves. I remember the skimmers swimming and the plovers running and the sand dollar covered and uncovered and covered again. It means something because it is always there yet never there. Hidden yet on display for anyone brave enough to bend over and look.
Living with a sick body is an opportunity to live within the quiet in between. We are forced to slow down, we are forced to regroup, we are forced to pay attention to the currents of chance and mortality that we would rather ignore. The narrative of modern life is muted for us by the urgent need for survival.
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A drive to succeed is replaced by a study of pain. Our sick bodies feel unnatural, different, worse, and yet they are what we have always known. When we quiet our bodies we can quiet our minds. Entering the space of softness and healing that a sick body requires allows us to enter the quiet in between of our own selves. In between our own thoughts, in between our own breath. With practice, intention, time, we can slow the waves of our own thoughts, emotions, pleasures, and pain. We can truly rest. Mindfulness is, for me, a survival mechanism.
Only when I can separate myself from my pain can I stop blaming and hating myself.
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The part of me that remains unbothered. The part of me that I know will survive this — will survive anything. The part of me that is still speckled in gold, so unwavering and pure that I know it must be holy. Holed up in our beds and sofas, sick in body, we are experts in suffering.
Slowly we can become experts in beauty, too, paying for pearls of wisdom with our uncooperative bodies. If we can learn to sit next to our pain, slow our human thoughts and fears, maybe we can learn to be okay with the unknowns. Maybe we can learn to explore that quiet in between.
Chronic illness will try to break you down — but slowly. Chronic illness will ask you to sacrifice, to change, to adapt — but slowly. Like trying to grasp a handful of sand, the life you thought you had and the life you want to have will slip away grain by grain. Trying to hold on will only wear it down faster. That slow drip of disappointment with no end or obvious solution in sight.
At some point, the energy spent on trying to get better shifts to just trying to get through. For my first three years living with chronic migraine I oscillated wildly between a stubborn drive to fight and win and an exhausted sense of futility and defeat. This rollercoaster of grief and hope is, I think, inevitable. It is exhausting to navigate a turbulent emotional journey while trying to heal and guide your physical self through a world built for the thriving. How do we survive these years — decades even — of pain without tearing ourselves apart in the process?
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How do we balance acceptance of our reality with the urge to fight against it? Do we become a peaceful Buddha or a fierce warrior? The only way we can survive the exhausting paradox of chronic life, body and souls intact, is to rest.
To let go, and rest. Deep, intentional, dedicated, daily rest. Rest in kindness, in openness. Intentional rest is hard. Harder than it sounds. A sick body, a body in pain, is inherently out of sync. In dis-ease. It feels like a war, violent and horrific and unpredictable. Fighting is necessary to an extent, as long as we are fighting the pain and not ourselves. But that line gets blurry in a hurry. To become a warrior with a soft heart — that is the wish and the wisdom of Vidyamala Burch.
A mindful being on her own pain journey, Vidyamala has dedicated her life to helping others learn how to use mindfulness to cope.
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I first heard Vidyamala speak during the Migraine World Summit where she shared how she discovered mindfulness one late, painful night alone in a hospital bed. Her powerful story told in her soothing tone with New Zealand accent has been with me on my own pain journey ever since. My favorite mindfulness meditation app InsightTimer, r ecently released a day course on coping with pain and illness led by Vidyamala Burch.
The app is free and it comes with thousands of free guided meditation tools, including several free tracks by Vidyamala that I use regularly. Suggestions for stress relief and meditation do not always come from an empathetic place. If the chronically ill had a dollar for every time yoga or positive thinking was suggested, we might be able to pay our medical bills. The suggestion for Insight timer App in general and the day course on pain come from a place of generosity without condescension. The course taught me how to practically bring mindfulness into my daily life to avoid some of the feelings of overwhelm, panic, and powerlessness that come with a sick body.
She taught me how to notice and appreciate the little pleasures and how to separate my pain from my full, whole self. If you have issues with sleep, anxiety, or depression on top of chronic migraines, I encourage you even more strongly to see how much a good therapist can help. It is so simple -grab a pen and paper and write. Write without judgment, without a goal, without editing. Let what is inside you flow onto the paper.
The act of writing down your thoughts and feelings releases them, putting them to paper separates them from the whirlwind of your mind. Price, editors. The Walt Whitman Archive. My tongue, every atom of my blood, form'd from this soil, this air,. Born here of parents born here from parents the same, and their parents the same,. Retiring back a while sufficed at what they are, but never forgotten,. Houses and rooms are full of perfumes, the shelves are crowded with perfumes,.
The distillation would intoxicate me also, but I shall not let it. The atmosphere is not a perfume, it has no taste of the distillation, it is odorless,. I will go to the bank by the wood and become undisguised and naked,. Echoes, ripples, buzz'd whispers, love-root, silk-thread, crotch and vine,. My respiration and inspiration, the beating of my heart, the pass- ing of blood and air through my lungs,.
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The sniff of green leaves and dry leaves, and of the shore and dark-color'd sea-rocks, and of hay in the barn,. The sound of the belch'd words of my voice loos'd to the eddies of the wind,.
The play of shine and shade on the trees as the supple boughs wag,. The delight alone or in the rush of the streets, or along the fields and hill-sides,. The feeling of health, the full-noon trill, the song of me rising from bed and meeting the sun.
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