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May 22, 2017
A LETTER ABOUT KNOWING WE’RE NOT ALONE

“By telling a story, things don’t control me anymore. It’s in my vernacular; it’s the way I see the world. And I think that’s why our stories ask our questions, our big questions, like, where do we come from — before life, after life? What’s funny in this world, or sacred? And even more importantly, by the asking in front of people and with people, even if we don’t find the answer, by the asking, we know we’re not alone. And I have found that often that’s even more important than the answer.” 

– Kevin Kling

This weekend I remembered the above words from the OnBeing interview with Kevin Kling. I love how things come back to us when we need them most. It’s magical, like Harry Potter or something. Kevin was born with a disabled left arm due to a birth defect, and then in his early 40’s wrecked on his motorcycle, flying off and waking up to a paralyzed right arm. (can you even imagine?) He talks in a raw and powerful way about sharing our stories, how that can bring a deep, important knowing that we’re not alone.

These days I’m experiencing a kind of healing in the telling of my story of pain. In the sharing, asking questions out loud, and writing letters back and forth, deep parts of me feel regenerated. I check my P.O. Box and let out a squeal as I see your envelopes waiting for me. Your words, your stories, your empathy.. they’re all medicinal. It’s not the kind of healing that fixes the pain, it’s more miraculous than that, deep under the surface of things. This kind of healing comes from a basic human hunger being satiated – the act of hearing and being heard. I’m overwhelmed with gratitude for you, dear heart, who choose to enter into this human story in whatever way is best for you.

I open the calendar on my computer and edit it, adding in a stretch of days labeled “pain”, logging my most recent three-day migraine cycle. It’s the easiest way to keep track of these episodes and try to make sense out of senselessness. It’s one small chess move I can make to contain the story of the migraine hell that visits on me. I learned quick that I can’t control the pain, so I moved to the next best thing – controlling the logging of the pain.

I have a lot of help from others who want control over my pain, too. Whether strangers I bump into, family, friends, or people commenting on Instagram, I’ve gotten used to the auto-response from anyone I share my migraine story with. It comes in the form of either “Have you tried _____?” or “You should try _____.” The blanks are filled in with countless suggestions ranging from the clinical to the downright absurd. Sometimes I appreciate the gesture. Other times it’s tiring and difficult to make sense of it all.

So far, in no certain order, here are some of the things people think I should try:

Seeing a neurologist

Seeing a migraine specialist

Getting a CT scan

Having tests done to see if it’s M.S.

Reading any number of books about migraine cures (4 so far)

Seeing a naturopath

Take magnesium baths

Having complex blood work done

Taking high dose magnesium and other supplements

Doing an elimination diet

Going gluten free / sugar free / alcohol free / grain free

Seeing a functional medicine practitioner

essential oils / herbal remedies 

GAPS diet

Whole30

Lessening work and stress load

Praying / fasting / meditating

Getting more sleep

Getting more exercise

Getting less exercise

Myofascial release

Acupuncture

Chiropractic care

X-Ray

NAET treatment

Gua Sha (double dare you to google image pics)

Daith Piercing

The crazy thing is I’ve tried all of the above, save the last few. So far, so (not) good. I ate whole30 for three months straight, WHOLE90! I’ve seen five doctors, none who could pinpoint exactly why this is happening or how to fix it. One doc turned out to be a fraud and scammed us out of more cash than I can admit in public. Another prescribed a daily dose of narcotics, muscle relaxers, and anti-depressants that would render me more useless than I already am. Most recently, a doc prescribed a high daily dose of Vitamin D (10,000 times the daily limit) that gave me toxicity and caused a kidney stone. Luckily this happened on the same week my youngest got lice, the same week he gave me lice, and the same week I spent 4 days in bed with migraines. Perfect.

At this point, when someone suggests I try X,Y, Z I want to throw myself down on the ground and kick and scream like a toddler. I want to say, “You’re kidding, right? I’m a grown woman! I’m smart and intuitive. I’m an obsessive researcher. And newsflash: I’m MISERABLE! You think I haven’t thought of that option? You think I haven’t tried it or at least done my homework?” Then I step back, take a breath and realize these suggestions are grace to me. Whether it’s from a close friend or a stranger, every suggestion is a kind word coming from a heart that longs to see the suffering stop. We both just want it all to go away.

Handing out grace like candy at a parade doesn’t always look like jubilant celebration in the face of yet another “have you tried..?” suggestion. In this season, there are days when grace just looks like a willingness to keep sharing my story, share the pain and the way it’s framing how I see the world right now. It looks like a gentle acceptance of others for whatever their reaction to that story is, and a grateful heart that they want the pain to stop almost as much as I do. As one of my favorite Irishmen said once – we’re all just doing the best we know how most of the time. We are, aren’t we? By sharing and responding, by being messy and giving grace, we know we’re not doing this alone.

Thank you for not letting me do this by myself. No matter what your response, it’s always welcome. Your logical and medical and mystical and spiritual and bonkers suggestions are always welcome. Your letters and packages and “I feel your pain” notes are always welcome. Who knows? You might share the key that unlocks this whole thing. If not, I’ll thank you forever for not letting me feel alone in it.

So keep writing, dear one. Your grace is like medicine to me.

from,

ash parsons

Rhonda Majewski
- Reply

Curious about your word GRACE. Is this the biblical term or your own definition of how to show grace in difficult times. It would really help ( and perhaps you already have) to define too the readers, me being one, how best describes Grace. I am pretty sure I am getting it ,but if the word Grace is only for the biblical minded I wonder if that leaves out many who may not be God fearing in the biblical sense. Please continue your writing.

Thank you,
Rhonda.

Oh Ashley, I am so feeling for you!! I wish I had any sort of grace to give you, the only grace I can give you is one of support and maybe a small bit of sympathy. I myself had daily headaches for years and finally found this past year that a chiropractor’s help was my key. I hope you find something or someone who can help you. Sending love + hang in there. xo

Jen, Thank you so much for these words of empathy and for really feeling it with me and understanding how it is. I am so glad you found the key to unlock the puzzle of your pain, and I am so thankful for your encouraging words. so much grace to you dear!

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