Tag: migraine

permission to be

Amy Clark1 Comment

In 2017, I had what I nostalgically refer to as the “Year of Fitness”.  It was an unexpected glimmer of good health in the midst of what has been an otherwise less than great 10-year struggle with chronic illness. I spent nearly every moment of those days of oasis attempting to prove to my body the goodness it was in fact capable of…hoping to jump the health rut I had been stuck in and to carve a new and better path. And it worked…for a while.

I worked out twice a day, pushing limits and building a strength I didn’t know I could possess. I was up before the sun and filled with purpose to make the healthy days count because they’d proven themselves inconstant in the past. I fueled my body with the healthiest foods, meal prepping with intention and care. My brain worked effortlessly and in ways that made me feel confident and clever—that made me feel able and like myself. I actively engaged my curiosity to learn more about education and the world and my role and responsibility in both. I wrote with ease in those days, challenging myself to write more and to explore where that work could carry me. I went to conferences. I traveled. I read. I enjoyed my family. And over time, I fell into new habits of mind that did not begin with calculating the risk of vertigo, migraine, or other maladies. My gratitude for the richness of those days honestly never faded, but my fear for their cessation did. I grew comfortable.

It was a good year. Like, a really good year.

I haven’t come close to a health streak that since. But I never gave up fighting to find my way back—even if “back” was a shade of what that year was for me. 

And then Long Covid signed its name to my chronic illness roster and where once I would have fought, particularly when it came to writing, I now acquiesced. My brain didn’t (and still doesn’t) work the same; my writing didn’t sound the way it had; the work felt impossible. And instead of persevering as I would have in the past, I quit. I walked away from the one thing that has carried me through all the other things in this life. I was too exhausted to fight for it, but more than that, sitting down to write had become such a confrontational act. In writing, I had to face with certainty how different things had become, and I had to sit with knowing how much no one knew about the possibility for future wellness. In writing, I had to work through the anger and frustration and sadness I felt about all of it, and that too strength I just didn’t possess. In writing, I had to face my own embarrassment about how hard it was to put words together at all, let alone in a way that felt familiar.

I am a resilient human who fights for others with perseverance and who, until this moment had also fought for herself. 

But you know, I am not a confrontational person. And I walked away.

Over these last few years, I have not been able to see this departure as an opportunity for a clean slate or a fresh writing start. I didn’t recognize the moment as one to further shape my voice or even to redefine it in a way that respected who I was becoming. In part because I really wasn’t ready to accept that reality. I didn’t want to be a part of the adventure that is transformation because I was so actively focused on who and what I was losing along the way.  I couldn’t create any narrative for my circumstances that named positive possibilities. And maybe allowing myself that space to just walk away for a bit was a kindness—maybe in order to rediscover myself as a writer and in general, I had to leave for a while. Maybe it wasn’t quitting, but instead a gift of grace, of self-care.


Regardless, my aunt asked me at Thanksgiving where my writing had been. And I gave my current litany of excuses. Knowing me as she does, she didn’t take any of that and reminded me, just as I would remind my students, that even getting down a few words would be a start. That the words and the effort would matter. Somehow, in that moment, light peaked through into the wilderness. The days won’t always be good. I won’t always feel up to writing. The work may sound different than it used to (scratch that, it will sound different). All of that is okay. It is time to try again. And so here I am, fighting for myself. Rested and ready to find a way forward on a path that includes struggling for the small pieces that fill me up.

I’ve always loved Gwendolyn Brooks’ poem “my dreams, my work, must wait till after hell”. I realize now that I have been waiting for the health hell to abate entirely before returning to my “little jars and cabinets”. I see now that I can “resume/ On such legs as are left me, in such heart/ As I can manage”. I know that I have not “turned insensitive/To honey and bread old purity could love.” My dreams and my works are right here, ready for me in any capacity I am able to approach them. I just have to give myself permission.

hope’s effort

Amy Clark1 Comment

Chronic and invisible illness has become a daily struggle rather than an intermittent one. It is exhausting, often defeating, and always frustrating. But when I am able to channel it into writing, somehow that tension and discomfort is eased. I always share the poetry of others her but rarely my own. Today that is different which brings another kind of unease. But nonetheless…it is written (and unedited), so here it is, as it came to mind and then to the page.

hope’s effort

I hadn’t imagined this particular evolution

of days. This—

well, it wasn’t foreseeable

(a game Life plays, with a smirk, knowing

its caprice will always confound human ego).

Exhaustion permeates and saturates the hours,

restricting the freedoms and felicity Joy once knew

but took for granted in her attempt to live

without bounds.

And yet…

A thread of hope rises each day—

a mirage that cleverly deceives the mind

into believing today will be different—

better. It’s what I hold to with a fervor so

vibrant that it seems to be Joy (regained) or even

Wellness (restored)—

(Is it a smile she’s wearing, they wonder, or just

gritting teeth clenched tight

in fear of revealing ___________?)

But, instead it’s just my soul—

hoodwinked, and the believing,

well, it’s kind of tiring.

Hope, these days, engenders new depths of fatigue

because the thread is too thin and elusive,

impossible to grasp

each and every, and some days,

well, I miss it completely. It floats

away—shimmering aloft, visible but…just…

out of reach…

And yet…

I always wake in search of it,

again, because without it,

I’d be laid flat in the blindness

of the not-knowing haze—of the fog

that necessitates a beacon to avoid

getting lost, or worse, giving up entirely—

which is always an easier reach—a falsely 

tangible promise of ease, an empty promise, that,

well, evaporates the moment acquiescence is 

accepted by the mind, the body in need of something, 

anything simpler than the work required in facing, 

in maneuvering the obstacles which can’t be overcome

in a single day…the work required to 

persevere through darkening shades of complexity.

And so….

When the thread of hope rises

each day, each day I will reach

for it, I will cling to it,

until its promise is fulfilled…because

the alternative, well, that’s not living, that’s 

a shadow life…a shadow of life…

that’s existence…wasted,

a promise left waiting—

–unfulfilled in my impatience for something 

immediately better, 

which, well, blinds the eye to all that is still present,

to the thread of hope rising and waiting for the reach,

each day.

And so…

I grab hold…again…and again because despite 

my body’s fatigue, my brain knows this truth—

I am not helpless, hopeless in the face of ______.

Life will change, circumstances will alter,

that does not mean they are worse—

only alive.

And that challenge, of being alive, is always worthy of 

Hope’s effort.

(all gratitude to Anthony Doerr and his novel Cloud Cuckoo Land as the line “A thread of hope rises,” which appears on p. 144 of the novel, was the inspiration for this piece)

wonder

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Lately, my migraine life has had a reductive impact on my exercise life…like walking my neighborhood is really all I can do without negative effects. I mean, some days are pretty golden and I can get away with a HIIT workout or some TRX work without too much residual discomfort, but those days are becoming more and more rare. But this new walking habit is not without benefit (beyond the physical well-being bit). There is a freedom offered in these walks–they belong solely to me, a rare moment in time where I act just for myself. I determine my path, my playlist, my distance, my pace. I don’t need to weigh the opinions of others. I don’t need to compromise with anyone else. I don’t need to negotiate with or listen to anyone other than myself. It is a step toward solitude, toward peace, toward wholeness.

And today, it was a step toward reawakening wonder.

We have this glorified drainage ditch running through our neighborhood…my kids call it a “creek” but I feel like that term just transforms their exploration of it on summer days into something a bit more adventurous–I mean, come on, who wants to say, “Hey mom, can we go check out the drainage ditch?” Words do matter and who am I to deny their careful work with connotation?! On recent walks, this “creek” (I’m just going to stick with the positive nomenclature of my kids here), has been pretty dry and even a little musty. Without the nourishment of rain for the past several days and even weeks, the creek was losing its richness and its beauty was waning(yep, the drainage ditch too can be beautiful). The creek bed was still there, patiently awaiting renewal in the natural cycle of things, but the deprivation on the path to getting there was taking its toll.

And then, after withholding its gifts for so many days, the rain paid a long awaited visit.

As I was walking today through that rain, I heard a noise outside my earbuds as I neared the creek. At first, I thought a car was coming up behind me and so I glanced around to be sure. Not a moving vehicle in sight (not many care to be out and about on a rainy Sunday). Then it struck me. What I heard was not a car, rather it was rushing water swiftly running down rocks and filling up the creek–almost as if it could not get there fast enough. They cycle of hardship was ended…patient endurance, rewarded with rebirth.

It was beautiful and weirdly wondrous at the same time.

In a time when so much feels lost…when we feel so without, so lost…to witness renewal in that way, well, it restores a bit of faith that our dried out, musty selves will one day (even if it is later rather than sooner) be met again by that which makes us whole.  Even in dormancy there can still be the expectation of revival and in that time of waiting, there can even be joy. And in the stillness of that hope (okay, stillness while walking a 14 minute mile…), I thought of Mary Oliver’s poem, “Song For Autumn” and how in it she offers fresh perspective on what we think of as the hibernation of nature’s beauty in the fall.

“Don’t you imagine the leaves dream now

how comfortable it will be to touch

the earth instead of the

nothingness of the air and the endless

freshets of wind?…”

Maybe the creek appreciated the rest, the time to itself, the solitude within which to appreciate the pause and the chance to just be? And maybe its reunion with the rain was even sweeter for the time without?

Maybe I am just a swoony hopeful optimist who seeks answers in poetry and nature for that which seems without solution?

But, a spark of joy was ignited inside my heart and in these days, that spark is good enough for me.

Anticipation

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Having dealt with chronic illness for the last 8 or 9 years, one of the messiest mental mud holes I needed to dig myself out from existed in a very simple sentence starter…which existed in variations of itself but always lead to the same deleterious effects. It always went  something like this: “Back when I  could…” or “The old me could have…” or “There was a time in my life when _____ was possible”. The trouble with these statements emanates from their constant glance backwards which blinded me to my current truth. And maybe that was my mind’s ulterior motive. If I was always idolizing and gazing back at the “old me”, then the current version of myself was only a temporary imposter. I didn’t have to accept this new human with her new limitations, in her new situation. She was a lesser version of old me and I didn’t really like her very much. Her life seemed less than the one I had been working so hard for so long to create. I wanted more. I wanted what I felt I deserved.  I looked to every outlet that might offer healing because this would not  (NOT) be what defined my existence for the rest of my life. This was a “right now” scenario and I would fix what people told me could not be fixed. I tried acupuncture,  chiropractors, physical  therapy,  vestibular  rehab, essential oils, neuro-otologists, audiologists, oral  surgeons, dentists (this list  goes on for a while, you get the picture). And while I might find relief, no one held the cure…the magic potion that would restore old me and extinguish new me. I felt I had tried everything to heal myself.

But sometimes…

…we have to look within first.

One day, in a moment of defensiveness, I told a friend,  “I have a neurological and inner ear disorder; I am hearing impaired. So what?!”  And it was one of the most freeing moments of my entire life.

I had said it.

Out loud.

In the world.

For someone else to hear.

I had spoken the truth that I had been working so furiously to deny and to walk away from. In that moment, I began to nurture acceptance rather than denial. In that moment, I began to slowly and steadfastly heal myself rather than futilely and frantically try to eradicate my disorder. The path toward acceptance possesses an inordinate number of thorns and there is no map to navigate it well. It requires resilience and dedication and also, as I came to learn, anticipation of who I was becoming rather than disappointment over who I had lost. I did not need to mourn that girl who could do some stupid number of burpees in two minutes…I did not need to mourn the adventures she would never seek (because let’s face it, “adventure” was never really my thing anyway)…I did not need to mourn any of it because she was still a part of me and together, we were becoming someone stronger, someone more beautiful, someone who despite limitations still had plenty to give to this world.

And so in anticipation of who I was becoming, I fought harder.

As 2020 wears on and I feel like so much in this world is changing and shifting, I once again find myself gazing backward. “Remember when we could…” “Remember when we didn’t have to…” “Remember the days before…” Of course we all remember all these things, they are a part of us and our stories. And for a substantial piece of our lives they dictated our narratives for us. They are not lost forever, though, just in a holding pattern of sorts…wrapped in bright paper waiting for us to unwrap them again when it is safe and maybe with the newfound gratitude we are all bound to feel for what was once just the everyday.

I  find myself making this note in my notebook at school regularly: “Anticipate who you are becoming in all of this”  It is a necessary reminder when the work of reimagining school on a regular basis grows exhausting and frustrating. It is a necessary reminder when I decide how I will  react or respond to those around me at work, at home, in my community. It is a necessary reminder that this is my story and I am not a static character. I am dynamic. I am changing. And I can shape that change and my attitude about it.

Opening my mind and my heart to accepting myself, presented some of the toughest work I’ve faced…and that work doesn’t end, maybe not ever. Some days issue considerable challenges while others tender feelings of accomplishment and joy. Regardless, all the days are situated in anticipation of who I will become on the other side of the struggle and what work I can do in the moment to make that person a better one than she is today.

Neither a neurological disorder nor pandemic can change that…unless I allow for it.