Tag: vestibular migraine

pausing

Amy Clark1 Comment

“Today I’m flying low and I’m
not saying a word
I’m letting all the voodoos of ambition sleep.

(…)

Stillness. One of the doors
into the temple.”

Mary Oliver, “Today”,  A Thousand Mornings

Today’s rain has been a bit of an unexpected gift. It is the kind of  rain that speaks in moderate and peaceful tones while also breathing a whisper of the storms arriving soon. Branches move gently as raindrops greet their leaves, making them momentarily heavy, then light again as the weight rolls away, absorbed by the ground below. The birds have retreated from play, calling truce in their bid to outsmart the dog in the daily territorial skirmish of the backyard. And the skies above, a blanket of solid gray, offer a bit of shelter from the sun’s brilliance, as if to say, wait, you don’t have to be busy; trust that you can pause, be still, and breathe (with intention)…as if to say, here is your reason to take care of yourself, watch–the world will still spin without your effort…as if the weather, or  something greater, knows we all need this permission sometimes.

Pausing grants presence that repetitive, exhaustive persistence cannot (a thing I may have just now truly appreciated). Today, I didn’t have to remind myself to seek gratitude, it just sort of puddled up around me because my surroundings weren’t a blur on the sidelines of my self imposed daily race. My surroundings and I, well, we were moving at the same pace. The grace granted in this slow down allowed me to see and be grateful for my present in real time, rather than only the future I am typically working to achieve or the past that has brought me to this place. And I realized how often I forget to see the moment I am in rather than the next one which keeps me from a fully cognizant gratitude stance. And I think too often allows me to focus on the frustrations of my health which flood my present as they impede my progress toward tomorrow and don’t look like the me of former years. When I am centered there, when those frustrations are my only present moment, then there isn’t much (or so it seems) to be grateful for today. I’ve become really good at embellishing and believing that lie. Except today, even with a pretty cruel vestibular migraine that has been ebbing and flowing for over a week–a thief of a holiday I have been so enthusiastically awaiting, I could see beyond the easy bait of the singular story of that present to a richer more complex and joyful one. I could see a story more reflective of my whole truth, rather than just my illness or my grief over it. I could see (again) that I am more than those things–every single day…my story is composed of so much more than that. And it was because I was actually living in my present, looking straight on, rather than behind or ahead, that I was able to do so.

Today’s rain is temporary, transient (ending as I finish this blog). The pause is but a moment. Tomorrow I will splash through the remaining puddles as I speed toward the end of one to-do list and to the start of the next. It is just that time of year. But in the midst of that movement, may the splash of the puddles be a bit of a reminder, a baptism offering new sight of a more complete technicolor today. A vision of the present that sees the hues of shade and shadow, but also takes in the brighter threads of joy and goodness I can so easily overlook. An accepting vision of the present not skewed by what used to be, what should be, what will be. A moment to hold what is as it is because in a breath, a flicker, that moment will also change. And to miss the truth of today would hold greater sadness than all the regret I can muster in what I imagine to be missing already.

Today, I am grateful for being granted a moment to revise my stance on stillness–it is not just something for me to remind others to seek, but it is mandatory for me to create for myself too.

I am good with today in that way.

(a good poem for a day like this…“birth-day” by Lucille Clifton)

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.