acceptance

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

“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

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

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!