I am trying to become ‘a warrior with a soft heart.’
The Problem of Persistent Pain
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.
The evil of chronic illness is it’s chronicness. That slow drip of disappointment with no end or obvious solution in sight.
It’s the truth – as depressing and unpleasant as it is.
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.
But it’s also unsustainable.
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.
The Impossible Questions
How do we survive these years – decades even – of pain without tearing ourselves apart in the process?
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 answer (as always) is somewhere in between. The answer is found by letting go.
The Teachers
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. We each must find a way to rest within our individual bodies even as they are challenging us – for the sake of our own survival.
“No matter what happens to our bodies in our lifetimes they remain ours.”
– Maggie Nelson
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.
Somewhere the line between our illness and ourselves inevitably gets mixed up – especially with a neurological illness that begins and ends in the brain where our thoughts and sense of self are housed. After days, months, years of illness (there’s that chronic-ness again), anxiety, guilt, and negative thoughts pop up, like they always do in moments of extreme vulnerability.
To thrive with a sick body you must become a warrior with a soft heart.
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.
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.
I’ve since learned from Vidyamala herself how to become a warrior with a soft heart. My favorite mindfulness meditation app InsightTimer, recently released a 10-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. The 10-day course is $4.99 and worth every penny, in my opinion.
Mindfulness is not a gimmick
I know, I know, you’re sick of being told about mindfulness. 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 10-day course on pain come from a place of generosity without condescension. (And without ulterior motives – I’m not being paid to recommend it).
Like Vidyamala, I want to pass along a kernel of what I’ve learned to others experiencing the same life-numbing pain. 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.
Vidyamala taught me how to bring gentleness into my body and mind – even when I’m in pain. She taught me how to notice and appreciate the little pleasures and how to separate my pain from my full, whole self.
She taught me how to rest and take breaks even when I don’t think I need them.
More Resources for Letting Go
Find a Cognitive Behavioral Therapist – Every person with chronic pain can benefit from CBT. (I personally relied on CBT during the darkest of times, and I’m very grateful for it). 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.
Put Pen to Paper – My first dip into mindfulness was through a journal. 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.
Prayer or mantra – The Hail Mary has soothed and comforted me on many bad Migraine nights – even though I haven’t been an active Catholic for a decade. Insight Timer App has hundreds of free mantras and prayers, both denominational and secular.
Meditation is prayer and prayer is meditation. Prayer shifts your focus to words, breath, and the big, magical world within and outside of your body. What’s more healing than that?
Tara Brach – Tara is a spiritual teacher and thinker who offers free lectures and meditations. Her podcast is my Sunday morning gift to myself.
Methods for Living with Pain and Illness – 10-day course led by Vidyamala Buch
Have you tried CBT oil? I am desperate. I would like to get your advice please.
I am currently using raw hemp oil from Endoca.com. I talked to a doctor at UCLA who is studying cannabis for pain and he recommended this company specifically. He told me that CBD can help prevent migraine attacks but won’t likely help an acute attack. I use medical marijuana – CBD + THC – for pain relief, nausea relief, and help with sleep. It takes the edge off but does not get rid of the attack. Good luck – I hope it helps you.
So have you been able to get back to a fairly “normal” lifestyle by now? And if so what are some of the most effective coping skills for the migraines. Thanks..a fellow struggler.
Kind of? I still have chronic pain and chronic migraines. I’m working with a physical therapist to try to undo some of the musculoskeletal triggers/side effects in my neck and shoulders.
I’m also committed to daily mindfulness and meditation. I just feel better when I do it, and the more I learn about the brain and pain, the more I think it’s useful. I’d say my recipe now is:
Mindfulness + quality sleep + magnesium + hydration + nutrition + PT + cannabis + ice packs+ community + advocacy + education.
I’m still pretty hopeful about some of the new meds and devices in the pipeline, but side effects have been ruthless for me again and again. Hang in there, I know how brutal.
Take care,
Angie