Tag: invisible illness

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)

neutrality wavers

Amy Clark1 Comment

“See, I’ve been having me a real hard time…”

A couple of days ago, I cried.

The tears weren’t prolific or anything, but as they welled up and overflowed their banks, I couldn’t help but consider them glorious and restorative gifts…only, not in the way you might expect.

If you know me, a tearful moment doesn’t sound like some kind of triumphant occasion since one of my finest skills is feeling all of the feelings, all of the time…to a fault. I am not a daily cry or a cry in front of other people kind of human, but when overwhelmed by any particular emotion, joy…anger… frustration…sadness…love…awe, tears populate my eyes and from there travel as rivulets running. These tearful moments are sort of how I know I’m living in and connecting with the people and the world around me. They are sort of how I know myself.

Well, that used to be true. Until I contracted a relatively mild case of Covid in January 2021 with no prior comorbidities, and the workings of my brain became a bit of a mystery for the long haul.

“I just kept hoping, I just kept hoping/The way would become clear”

My long hauler symptoms have been extensive and, at times, debilitating over the last six months. Irregular heartbeat, intense fatigue, frightening brain fog, weekly and ever intensifying migraines, daily headaches, weird aches and pains, sore throat, hoarseness, tinnitus, dizziness, weakness, chest pain…this list could go on.

Perhaps the most troubling lingering symptom of all evolved as a strange neutrality. Me. The emotional cornucopia… neutral. Let me explain what I mean by “neutrality”…

“So please don’t take my feelings”

I became sort of inert, feeling no strong emotions one way or the other. Like an extinguished candle. And it was so hard to explain this to anyone because I was struggling in so many ways, it was hard to pinpoint this issue. And then, people kept saying they knew how I felt…which was strange because I wasn’t feeling much. In some ways, this neutrality was kind of nice because my lifelong anxiety dwindled significantly. On some level I just couldn’t muster the energy for it. That vacation from being driven by an overthinking  brain and an overzealous set of nerves was actually a delight. Not me at all, but kinda great.

Yet in other ways, this neutral stance was painful. I would be at events that I knew were important to me, that should have felt exciting, exhilarating and joyful and I, well I was just there…present but not…smiling but vacantly…not even sure how much of the moment I would be able to remember without the lingering vibrance of the emotion. I felt so far away from everyone and everything even when they were right next to me. I often found myself surprised by people’s reactions to my words because even my ability to communicate with emotion and sensitivity had been marred. At times, I would become overwhelmed by how badly I had been feeling or by work or just by the world at large and I would want to cry to release some of that tightly wound energy, but I couldn’t do it. That one outlet seemed to have barricaded itself from accessibility. At other times, I would be in conversation speaking about emotional topics, about how strongly I feel on an issue or how passionate I am about education and while my words were all true to who I know myself to be, they felt false in speaking them because inside they seemed hollow, detached. And so that is how I have been walking through the world since Covid, hollow and detached.

“So I just kept going, I just kept going/And hoping I’m growing near”

For a while, I embraced the idea that this was my brain’s way of protecting itself. It was dealing with too much in my extended recovery so maybe adding in emotion would have been debilitating. Actually, I felt it was pretty awesome of my brain to extend that gift. I knew with certainty that when the school year was over and I had the chance to fully rest, all of that neutrality would erode to reveal the emotions it had been shielding me from.

Except, it didn’t. It lingered.

And the longer it did so, the more I realized that this wasn’t just me trying to save myself from overwhelm; this was damage done to my body, to my brain, by Covid. When I considered the work I had to muddle through to relearn how to think through the incredible Covid induced brain fog, I realized that my emotional void very much connected to that situation…maybe even lost in the dense pillows of fog circling and settling…awaiting the sun to clear them away.

“And it feels so nice to know I’m gonna be alright

Please don’t take this feeling

I have found at last”

My brain is different than it was 6 months ago. It is healing–my tears this week are proof of that for sure, but no one can tell me to what point I will heal…because no one really knows. And I just have to try to not let that defeat me. I have to take what my body gives me and know that this recovery road is less than perfect but I am still on it.

So I am just going to say this…take it or leave it…it has become my lived experience and thus, my truth. Even a mild case of Covid can have life altering impacts beyond what anyone can tell you they might be. Be safe. Do what you can to keep yourself and those around you healthy. This is my current plan, because, let me tell you what terrifies me. The possibility of catching Covid again. Terrifies me beyond what I can type on this page. Because I am still sick. Because my brain hasn’t fully healed. Because I am just starting to feel like myself again six months after a mild case and I don’t want to lose that progress or worse. Because my pulse ox still dips into the upper 80’s and I would like for that to repair fully before my system is attacked again. I have had Covid once and I don’t need to re-live that misery (I’m sorta still living it). I’ve done all I can to keep myself and my family well. I should be safe. And yet, in this world, as people continue to tell me that Covid is no big deal, that it is a fiction, that it is nothing to worry about–essentially denying my lived experience, in this world still, I am not safe.

Lived experience can be different from our own and still be accepted as a truth, still carry weight, still be worthy of our attention. Maybe that is an overly empathic stance, but to me, it is the only way we learn to see each other with respect in this world…it is the only way we begin to act for each other  rather than just for ourselves, elevating our own singular story instead of the varied and valuable experiences of those around us. Hibernating in the blankets of that which makes us comfortable only endangers us. And so I tell this story of my experience with Covid. Not for sympathy because while a momentary comfort, sympathy doesn’t fix anything. Nope. I tell this story to add it to the collective tale of this pandemic. Because this outcome isn’t often written about. Because maybe it will help someone realize Covid is not worth the risk. Because maybe I just needed to get it out into the world.

“So, I just kept dreaming, yeah, I just kept dreaming’…Tryna figure out why”

(All lyrics from “This Feeling”, Alabama Shakes)

patience

Amy Clark2 Comments

I don’t remember myself.

I’ve been sick before. Invisibly ill in insidious ways.

Lonely, as those surrounding me tried to understand, but without experience, had no foundation to allow for true belief in the turns my story had taken. Frustrated, as no one seemed able to resolve my ailments or even to incite a brief remission, a bit of respite, a break. Exhausted, afraid, broken-hearted and broken bodied. All of this. I have been all of this before in the midst of illness and yet despite the array of emotion, I’ve always been able to remember myself…for better and for worse.

The constant specter of who I used to be, what I used to be able to do haunted me without reprieve. I longed for the previous ease of propping up a smile…for the freedoms of frivolity without worry for an unforgiving symptom set…for working out without abandon because I was in charge of this body and we would be fit…for being able to honestly answer “I’m well” when asked how I was doing. I knew who I used to be, what I used to have, what I used to be able to do and I was jealous of her. Constantly. Achingly.

It took years to accept the terms of my new circumstances. To accept that the girl I used to be was still part of who I was becoming rather than extinct. That she was fully aware she was participating in a merger wherein her strength and joy and skills and hope were maintained and sharpened in this new fire faced. She populated my everyday though her life looked different. It took years to own and honor that there is no old me and new me, only me in this moment and I am always going to be in some phase of evolving into who it is I am meant to become…to honor that I still have control over the shades and hues I show and shower. But this process always included recognizing and celebrating who I’ve been along the way. And recently, that has become more difficult.

This battle back against what has evolved into Long Covid is different from all the other times I’ve faced health challenges (and there have been many). This fight has dissolved much of what I knew of myself. My brain is so exhausted and so foggy that I find myself behaving, responding, acting in ways that feel unrecognizable, strangely resistant to careful reflection and observation, interrupted moment to moment with absence of memory for what comes next, but it’s all I have the energy to produce. I find missing the small goodness of the beauty on the horizon, because I am tethered instead to what is currently right in front of me. Don’t look up or around or too far forward or back or you will lose what it is you have to do in this singular moment. Blinders are required but the blindness harbors despair for as missed moments pass, they grow heavy. I feel sometimes as though I’ve become a completely new human without the reference of experience and knowledge of who I was, of who I’ve been, there to guide me. All of my energy is focused on surviving days, getting through them, taking care of all those who count on me as best I can, which is great but I know that for now, I am not enough and also a bit of a stranger, even if only to myself. There are small touches in my manner that have evaporated and all of me is too depleted to attempt any sort of rebirth or refurbishment. Simply getting out of bed and forcing myself to get ready for work is enough to warrant a nap, but there is no time. I have to simply keep taking steps even when I have to fabricate the energy to do so.

And so I proceed having left my former self in the shadows with the hope that she will be waiting for me when I am able to pause, to take care of myself, to fight harder for recovery from something that very few fully understand. I hope that she will be there when it is time to measure this process of becoming. I repeat daily that this is just for right now, but right now exists for an undetermined period of time and there are pieces of my personality that I am not willing to sacrifice to Covid. Intrinsic empathy, generous kindness, careful words and reflection. I don’t need to be the same person I was before. That would be a denial of the experience and all it extolled. I lived it and am living it. Denying it later would make it all worthless. But I need to heal enough to deliver those elemental sparks back into being. That is the day I long for.

Until then, I will keep reminding myself to go slow and that today is not tomorrow yet. Change will come.

I can be patient.

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.

acceptance

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For what seems like my entire adult life, careless eaters and their subsequent audible mouth noises have rendered me wretched. Crunching, smacking, squishing, gulping…all of it… every muscle within me would tense, while on the outside, I would futilely attempt to withhold visible reaction (though once my shiver pronounces it’s presence, it is hard to mask my irritation). I have no way of explaining the swift development of this distress in any given moment, other than to say it is intrinsic, instinctive. No frustrated thought process exacerbates my reaction and tolerance entirely eludes the grasp of my capabilities.

Despite this aversion in my adult years, I also possess vivid recollection of my mom having to correct me, repeatedly, for smacking when I was a kid. Looking back, I cannot fathom why it took me so long to learn that lesson. Obviously, my manners required refinement, but somehow the sound of my own chewing didn’t seem to deter me. I am not sure when the changeover occurred. I just know that in the same way that I suffer a full body reaction to cilantro when it evades my careful eye and ambushes my taste buds, mouth noises incur complete revulsion.

Despite years of living into this disgust to the point of it worsening, my life turned in a bit of a punishing direction. In the midst of the fury of my inner ear disorder, when it had reached the point of disability, I consented to a surgery that offered no guarantees but did generate hope for restoration. I knew going in that the surgery, whether successful or not, would result in muffled hearing in my left ear as it healed and as the packing inserted during surgery dissolved. I knew a tube would be inserted as well that would also complicate my hearing for a while, but given that my hearing was already complicated, this seemed like a small sacrifice.

A few months after surgery, the surgeon removed the tube and for about three days, my hearing returned to the quality it kept before I was sick…not just pre-surgery but pre-illness. Everything about my life seemed to hold greater clarity in those days-I heard my kids clearly without having to see their mouths moving to decipher their words, my thoughts were uninterrupted by tinnitus, and directionality of sound was restored. The smile on my face in those few days reflected the lightness and joy of my being.

And then the hole the tube tore closed up.

While my hearing remained improved, I quickly discovered that I was also hearing internal noises at a volume not conducive to calm and clarity of thought. Every beat of my heart sent a roar instead of a pulse. Every breath I took, a hurricane in my ear. Every turn of my head, yawn, and stretch accompanied by cracking and squishing–noises we aren’t intended to hear and remains sane. Every word I spoke echoed within.

And also…

Every bite of food I chewed, every sip I took played at full volume and there was no escape, no retreat. All of a sudden, the thing that drove me mad in others became a state of being and no amount of shivering in disgust would resolve the issue. If I wanted to eat and drink (you know, survive), I had to also find a way to manage my disdain for these internal noises. It was hard to explain this situation to others without being greeted with the attempted empathy of “oh yeah, I know what that’s like! Happened to me when I had a cold last year” Not the same. I’ve had colds before that elevated the volume of internal noise. I’ll say it again–not the same…at all.

I wish I could say this surgical consequence brought me new perspective on the patience I should show others before reacting, but it didn’t really. However, it did grant me a realization. Was this situation uncomfortable? Yep. Did it make eating disorienting and difficult? Definitely. But, here’s the thing, I wasn’t dizzy anymore. The tinnitus was gone. I finally functioned in the world, for the most part, like other healthy people (with a few restrictions). I was present with my family and friends. I had been given so much only to be annoyed by these noises that over time, I could learn to live with if I only tried to focus on the positive rather than on the grotesque.

100% effective? Let’s just say, I require reminders:) Just tonight, while attempting to enjoy a piece of pizza, I nearly quit the meal 4 times (literally)  because I just couldn’t take the eating noises anymore. Then I remembered there was a time that just chewing pizza held the potential to incite vertigo. I let my frustration go and I enjoyed the treat.

And I think that is the point. There are so many moments in this life to enjoy when we just step back, let go of the frustration, harness our gratitude and dive into the delight.

(Day 22:) Also, Orange team don’t be mad about the pizza! I promise I ran 4 miles today too!)

flicker

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“For some things/ there are no wrong seasons./ Which is what I dream of for me.”

–from “Hurricane” by Mary Oliver

Hope flickers in the darkness.

Yet,somehow, when we need it most, we see everything but that light. We sink into seeing only the misery that surrounds us instead of squinting to see the light of hope in the distance. The choice remains within us to live into hope…to anticipate miracles that may arise in any single moment…to believe that there is more to come because right now is only temporary and each day brings a new promise.

In the toughest times, it is hard to take ownership of that choice.

In the midst of the most difficult days of my inner ear illness, when I thought I would have to quit my job and give up driving…when I thought my hearing would be lost forever and my kids would never remember who I “used to be”…it was in those terrifying days that for the first time in my life, I lost hope. I felt like a burden to all around me and I saw no chance of healing. For the first time in my life, I sank into the darkness and elected to remain there. Anything else felt too difficult, felt impossible. I could see no way out, could find no silver lining, could not understand anything beyond my own suffering.

And all I can say looking back on that is this: in denying myself access to hope, I denied myself healing of mind and spirit. In succumbing to the quicksand of my despair, I cheated myself out of moments, days and weeks of my life. I was waiting for someone else to throw me a life preserver or to reach out a hand and make it easier all the while missing the point that I had the power to save myself. I could not heal my illness, but I could in fact heal my heart.

Rediscovering that flickering light was no easy path to walk. Learning to trust it again took even longer. Walking forward in that light brings rest to my most difficult days now and also brings gratitude for the journey to its reclamation.

(Day 21–I’m exhausted…this is short and not what I had wanted it to become…I suspect a revision of this will turn into a future blogpost)

pointless

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Somewhere around age 8 or 9, I developed a pretty intense phobia. This fear defied conventionality (or at least it felt that way). It was no fear of heights or dogs that others could relate to (though, let’s be real here, I was afraid of those things too). No, this was something that no one else seemed to get–including myself. My fear rooted itself in an aversion to any kind of stomach illness. Sure, lots of people (almost proudly) proclaim “germophobia” but this was more specific and for some reason that baffled others. Or maybe it wasn’t so much the fear that was the issue as much as the way it revealed itself (in panic attacks at absurd moments, in selectively eating only food that felt safe, in doing any number of evidently ridiculous things that felt entirely necessary).

The great humor of my life…and I do believe God sees the irony in this situation as much as I do…is that I spent decades (literal decades) actively working to never feel nauseous…actively worried on the daily that I might be sick or that I might have been exposed to illness…actively avoiding events, people, places where sickness might be present (and I don’t just mean the obvious places…my fear of flying had less to do with the act of flying in a plane and everything to do with the possibility of people getting airsick…) only to find myself at age 36 coping with an invisible illness that brought with it episodic bouts with severe vertigo and regular imbalance and with that came nausea beyond my control (important to note here that even on the days when I wasn’t struggling with violent spinning, I sort of always felt like I was rocking on a boat…sort of like those movies with a shaky camera that make you feel a little seasick by the end…that sensation represented a good day for far too many years). There is no medicine, by the way, that will make vertigo stop…only medicine to abate the side effects of it (and then, only if you are lucky). You are at the complete mercy of your body. You just have to wait it out.

Situations like this provide clarity if nothing else, really. What I came to realize through this joke my body has played on me was that all those days and weeks and months and years of worrying, all that wasted effort, in the end, turned out to be really quite pointless. It didn’t matter how much I worried or how much care I took to avoid, this was always going to happen…and germs really have nothing to do with it (in all seriousness, you have to know, the comedy of this hasn’t escaped me).

This is sort of how life is though, right? People told me for years that I was squandering perfectly healthy moments with worry, but I couldn’t feel the truth of that in any real way until my life handed me a series of whirling moments that brought with them new understanding…like the scales falling away from my eyes. We are experiential beings and sometimes we have to live through the difficult moments to learn the lessons we would have been better off learning far sooner. But the important part is that we are ready to accept the understanding and move forward from there. I suppose that is growing up? And I suppose that process of forming and re-forming the people we have the potential to become is a life long one. And I kind of love that gift…of lessons learned no matter our age…because no matter how unpleasant the wrapping may seem, what is inside delivers insight that makes each day a better one than the one before.

(Day 43…this one feels maybe a little too revelatory…but here it is…is it king cake time yet??)

Hope

Amy Clark2 Comments

Someone asked me just before the New Year announced its arrival with colorful displays and cacophonous litanies, what word I would choose as sort of a mantra for the year. I had to pause (it felt like a rather weighty decision after all, I should be thoughtful).

I considered the previous year, 2018. This was a year that tested me in ways I’ve never been tested. My health decided to forsake me and as desperately as I tried to swim up through the mayhem of new and damaging symptoms, I only seemed to sink deeper. I was committed to not giving up my life and livelihood even though its quality had been diminished. I fought fiercely to put on a smile and to tell people not to worry because I was fine when that was the farthest thing from the truth. I made jokes. I taught my students. I cooked meals. I attended soccer games and plays where my own kids were competing and performing.

Well, a shadow of me did anyway.

I realized this Christmas that other than remembering how distinctly terrible I felt and the anxiety that swallowed me up as a result, last Christmas was a vast black hole. Because you see, while every picture reveals a woman smiling and being active and grateful for her life and those in it, every picture also hid what was happening on the inside.

On any typical day, I am without fail annoyingly optimistic. I own this trait–and while it can be less than realistic at times, it is also the only way I care to look at this world and my place in it. But in the days between November 2017 and June 2018, not only did my optimism fade, but so did my hope that I would ever be well or whole again…that I would ever hear normally, that I would ever have a non-dizzy day. And as my hope withered slowly, so did my spirit. And as my spirit dwindled I no longer recognized the person I had become and quite honestly, this terrified me.

And then, as though a gift from above, I was offered and received the surgery that fixed most of the physical issues with my inner ear. It was overwhelmingly successful–I couldn’t have ever imagined I would feel this good again and while incredibly grateful, at some point I realized that even though my body was seemingly “cured” (even if only temporarily), I wasn’t healed. There was damage that no surgery could repair. The rebuilding of my trust and my hope and my optimism was going to take time–it was going to take effort…so. much. effort.

I began to think of Emily Dickinson and how she described hope–

“‘Hope’ is the thing with feathers-

That perches in the soul –

And sings the tune without the words –

And never stops – at all -”

So I knew hope had to be there…maybe I hadn’t listened carefully enough in the furious “Gale” of those sick days to hear it singing (or maybe I was simply too tired to make the effort to try). But that’s the thing about hope–I don’t doubt that it was always waiting for me to seize it up enthusiastically and allow it to carry me forward. I don’t doubt the power of its force and I don’t doubt that it is there for every single human in this world who seeks it out despite hardship–hope is certainly not biased in who gets to partake. I also don’t doubt that hope, as powerful as it is, lacks the ability to swoop up an unwilling passenger–hope is not for the bystanders, it is an active state of being.

I lost hope because I grew too weary to fight harder to seek and to maintain and to nurture and to treasure it. I lost hope because I thought hope had forsaken me–I removed myself from the equation and I was too blind to even realize my role in this. And once I felt betrayed, once I felt abandoned by hope, all I could feel was sorry for myself. And this was new territory. It took me realizing that I needed to seek hope out for it to sing loudly enough for me to hear.

So, in my pausing to consider what word should define my new year, it was hope that reverberated in my mind and in my heart. This is a world that commands hope for survival. Even when you are not sick, sometimes the world seems to be. It can feel easier to give in to the pessimism, to the rancor, to the weight than to fight to see the goodness humanity still possesses and creates. But it is our job to see that light in others and in the world, to amplify the good, to sing the song of hope so loudly that everyone else cannot help but listen to its melody (and hopefully hum along). And for this year, and beyond, Hope (seeking it, singing it, living into it) is my word, my guide, my path back to myself and who I truly wish to be.

(This podcast is a really great listen for everyone but especially if you are suffering without cure in sight but might benefit from understanding the difference between being “fixed” and being “healed”. It has been an integral part of my understanding on this journey.)

Day 2 of Carnival Season writing challenge complete!