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The Day of Small Things…

Eight years of expensive schooling, hidden away at a mundane and “unimportant” job, a disappointment to parents and loved ones who had seen so much promise at the start… but I realized tonight, if David hadn’t been at that simple wasting-of-life-and-talents job, he may have never noticed the hidden sequence. The countdown. And the whole series of events would have changed and we would have lost him, the president and the world.

But perhaps I shouldn’t build my reassurances or life philosophy on a science fiction movie. Perhaps I should be looking elsewhere…

And what do I find there?

A simple cupbearer hidden away under exile who happened to be in the right position to rebuild and help restore the wall and the people…

A young lady taken for a harem in a strange land who happened to be in the right place and time to save her people from annihilation…

A lad with stars in his eyes who was sold into slavery (by his own family) and then ended up in prison which just happened to be the perfect position to save his family and all of Egypt…

A child with so much potential and promise who ends up a man hidden away as a mundane shepherd in the wilderness which just happened to be where God wanted him to call him onward?

A foreign young woman, her dreams and potential now as low as her widow’s covering, who chose the un-exciting, no-potential path of staying with her mother-in-law who just happened to end up in the right field of the right man and ended up an ancestor of kings and the Messiah!

And speaking of which… a “family runt” shepherd boy as warrior and king?!

The story is always the same.
And the story is never the same.

Big ways and small ways. Affecting families, kingdoms and the world.

“For who has despised the day of small things?” says the Lord to Zechariah. Or in another translation, “The people should not think that small beginnings are unimportant.”

And it was true when rebuilding the temple
—a temple that was a far cry in stature and pomp from Solomon’s—
and it’s true in many other situations…

…whenever God is at work (often behind the scenes) and we respond to where we are and what we have in our hands with trust in and obedience to Him.

Big ways.
Small ways.
Every way.

And I start this as a Facebook status, feeling facetious with my Independence Day metaphor, but it grows long so I decide to switch to a blog post and when I do my eye catches the mini notepad-on-magnet-clipboard on the magnetic note board by my desk—the one I questioningly scribbled a thought on way back in January—a thought about, perhaps, what this year was to be about. How it would be framed and focused.

And it wonders:
a year for “Little Things”?

Apparently.

May I not despise the day of small things.
Instead, may I trust and obey—
here where I am,
with what all or what little I have,
big ways,
small ways,
every way.

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Worth it?

How do you know if something is worth it?

Worth the time, the effort, the struggle, the pain, the recoil, the rebound, the sacrifice, the negative or not-so-pleasant consequences?

The answer seems easy when the end result is good.

A goal achieved. Success attained. The betterment of a person, place or situation. A reward. Happiness. Even simple satisfaction. 

Worth it.

But what about when the end result is not so good? Or even bad? Even when there is pleasure or goodness in the process?

It seems a very basic logic would say, not worth it.

I think of sin and how we often give warning that “momentary pleasure” is not worth “eternal destruction” (or any of the other negative consequences of sin)…

But I have to believe there’s more to answering, “is it worth it?” than by evaluating only the very end result.

Because there are more complicated situations.

It was nearly 2 centuries ago now that Tennyson penned his famous line, “’tis better to have loved and lost than never to have loved at all.”

If the very end result is the only determining value, then Tennyson got it wrong.
And I don’t think he did.

So there must be another way to figure out if something—a decision, an event, an investment, a sacrifice—was worth it.

But I don’t know what it is.
And I’m having a hard time navigating such things right now…


Yesterday I went to tea.

With all my health problems, symptoms, reactions, restrictions and issues—not to mention being an HSP Introvert—it seems easiest and safest to stay hidden away in my little Hobbit hole.

Which for the most part, I do.

I leave the house for doctor and chiropractor appointments and some trips to the pharmacy, for salt cave and sauna sessions, for work (when I can make it there)… occasionally to a “safe” restaurant or (carefully and with masks and filters and backup helpers and drivers) to the grocery store.

I almost never make it to church anymore. Even more rarely do I socialize.

And I miss going to tea events and craft shows and game nights and shopping and exploring new places and visiting family and friends and getting out and about.

I mean, as an HSP Introvert I never did those things in abundance to begin with.
But I could.

And I miss it greatly.
And I grieve the loss.
And it hurts.

So after awhile I get fed up with the isolation, with feeling trapped, with the loss of it all and I get determined to try and get out and do something.

Mom and I had been talking about “doing tea” at Kristtany since they opened years ago.
A full tea.
With friends.

For Administrative Professional’s Day in April my boss gifted me with the money to go and do an afternoon tea there. Some four months later Mom and I finally make plans to do so. Mom makes the contacts, gathers a group of lovely ladies from church and makes the reservations.

I look forward to it like a fresh spring in a desert wilderness.

It takes work to get there. I need to make sure there is no air fresheners or potpourri in the tea room (there wasn’t) and they need informed of my black pepper allergy and we have to ask the ladies who will be joining us not to wear perfumes or body sprays or scented lotions that day…

And in addition to normal tea day preparations like picking out which skirt and hat I want to wear and packing my little tea purse with my tea fund, my hankie and my travel Stevia and ensuring I have plenty of battery and memory card space on my camera, there is this whole host of other preparations that take up most of the remaining hour we had until leaving to meet the ladies—

I had to figure out my medicine timing, pack extra meds to help my body handle the unusual influx of sugar and gluten and the pain that would come with the excursion, prep my diffuser necklace and my nose filters and put them in and get my face mask. My little tea purse isn’t quite big enough anymore… So I packed a back-up bag with more meds and oils and a water bottle for afterwards. I took my first dose of meds when we left the church parking lot, the next when we arrived, the third when the scone course arrived and the last when we were finished.

It’s work.
It’s tedious.

But I told myself it was worth it.
To be out and enjoying one of my favorite things with some of the ladies I enjoy the most.

The layout of the tearoom meant that our party of 13 was split between a table of 6, a table of 5 and, a little ways back from the others, a table of 2.

Mom and I took the table of 2.
Which was quite a sacrifice for my more extraverted mother who loves being a part of all the conversations.

But it was better for me to be a bit removed from the movement and commotion and scents. Because not everyone got the message or remembers to come sans fragrance. And even then, while I can ask folks not to don perfumes and the like, I can hardly request folks not to wear clothes washed in normal, fragranced detergent or with fabric softener or dryer sheets. And those insidious laundry chemicals and scents are some of my most problematic instigators…

And it was tea and it was lovely. I was able to remove my face mask and eat and drink freely. There were scones and soup and salad and savories and desserts and they gave me special treats to replace the two items that everyone else had that contained black pepper. And it was beautiful and there were conversation and laughter. And my new supplements really helped to curtail the more acute gut symptoms of consuming tea treats.

And I took it all in and smiled wide and basked in the pleasure and enjoyed every minute of it…

… for about 90 minutes.

Before I even started in on the desserts I could feel my energy waning and my eyes beginning to gloss over. My chronically ill body and HSP introverted spirit had reached their limit. The food and tea didn’t taste as good or rich and the conversations just sounded like noise.

I kept smiling, albeit weakly.
And I grew quieter.
And when all were standing around chatting afterwards I stood off to the side.

I’d gotten up to go to the bathroom and when I stepped in I was immediately overwhelmed with scents. My eye caught two bowls of potpourri in there that I hadn’t noticed earlier with my face mask on (in addition to my nose filters). I quickly exited and headed back for my face mask and when I went to reenter the tea room itself I was hit by a wall of scents again (likely from people moving around at that point). Those two scent-overdoses on top of all the “little bits” of scents I’d been dealing with the rest of the time took everything else out of me.

I came home and changed clothes and rested the rest of the afternoon and evening. I couldn’t make us dinner and each time I got up from the recliner I felt weak and woozy and had to do what needed done (getting more water, using the bathroom, etc) quickly and sit down again. And I crashed into bed while leaving the kitchen cleanup (from earlier stuff and what I was able to grab for dinner) and my normal morning/breakfast prep for my parents to do…

And I slept nearly 12 hours over night and even today I am still symptomatic and weary and mellow…

And so I wonder, was it actually worth it?

All that work?
All those symptoms?
All the other stuff that I should be doing getting put on hold while I rest more?

I want to say yes.

That getting out and about and having a special treat and enjoying (at least for the most part) something I love is worth it every now and again.

But I wonder.
And I question.

Because there are other things I choose not to do because of the work or symptoms or consequences involved. For so, so many things, “making myself sicker” is distinctly not worth it.

And maybe I question because I fear the validity of my choices and what I enjoy.

Or I fear that others will see what I do and do not choose to “sacrifice” for and think it silly or stupid or wrong. Misaligned priorities on my part…

So I wonder if there is a better way to figure out if something is worth it.
Or maybe there isn’t an easy standard of measure.
Maybe it’s on a case by case basis.
And maybe we’re meant to wrestle with it.
And maybe that’s part of the process.

 


I was ruminating on the “was it worth it?” question yesterday afternoon and evening and even as I was in bed trying to sleep.

And sometime this morning a thought occurred to me.

It is usually worth it.

But maybe I also need to somehow balance and take into account more of not just how often I do something like that, but other factors… time of day and day of week and just keep it to 4-6 other people (or no more than 8) because being socially overextended impacts how my physical body handles everything else.

Earlier yesterday I told Mom that I wanted to join them again this November for the Hickory Bridge Tea. I’ve gone the past 2  years and the folks there do a wonderful job and it’s always a delight and they work well around my black pepper allergy.

But I told Mom today that I’m not going this year.

Because we usually have 10 or 12 ladies there and it’s an event tea in a packed room with dozens of other chatting ladies which means much more movement and commotion. Plus it’s on a Thursday and I have to work the next day (and Fridays are always big days at work).

So even though I’ll miss it. And I’ll probably be mellow and bummed that day knowing I’m missing out… I think it’s the best decision.

Because in my case at least it would seem, stuff like that isn’t always worth it all the time.
And perhaps few things are.

Trusting the Potter

I’ve preached it well.

There is beauty in the broken. And I kneel and motion with my hands as I recite the passage where the woman breaks her jar of nard and pours it over Jesus’ feet. And I mime the story of the cracked water jar that watered a pathway of flowers. And I take the hammer and the people flinch as it loudly crashes into the large terra cotta pot. And I hold up the tea bowl and I speak of Okakura Kakuzō and tea and beauty and the profound art of kintsukuroi. And all this time I weave in my own story of brokenness and the pathways and connections and beauty that God had hitherto brought forth from it…

And I believe it.
I do.

I believe there is beauty in the broken. I believe that God can use cracked pots. I believe that God can reform and repair and use our brokenness—no matter the cause of that brokenness—and bring beauty and encourage others and use it to ultimately draw all of us back to Him.

I believe it.
I find it beautiful.
I see the grace.
It encourages me.

But…

(You knew there was a “but” coming, didn’t you?)

So here’s the thing… I have this bad habit of taking what is beautiful and grace and meant for freedom and using it to bind and shackle myself again. Or I try to control it.

(And I’m pretty sure those two are connected.)

I came to the realization last April that I wanted to control my brokenness. I wanted to choose how my brokenness worked and looked to others. To be able to control what cracks and chips remain open as outlets of God’s grace and strength within, points where they can seep out and water and encourage others. To be able to choose which breaks get repaired in such a way that the scar is not noticeable. Even to have the say in what broken places are creatively and artistically repaired with golden lacquer kintsukuroi style so that others can see my beauty… er, uh, the hand of the One who did the beautiful work…

I hit that wall again last evening.

It was a dark weekend after a moody week in the midst of another round of difficult treatment after a rough (to put it mildly) year.

I’m tired and I’m worn.

“I suddenly had this realization: I actually don’t have any hope for healing,” I confided to a few friends. Not complete healing. Not on this side of heaven.

Oh, sure, I’m hoping for and doing what I can towards healing for the Lyme and for the Fibromyalgia and for the ear/dizzy issues (if they’re not related to one of those)… but I haven’t really thought towards or thought to hope for healing from allergies (respiratory or food) and sensitivities (scents, chemicals, other foods)…

And in my very-worn-down-ness and black-cloud-of-despairing, I realized that not only did I have no hope for those to change, but I don’t really want to have to live the rest of my life having to deal with them. I’m tired of it. I’m tired of there always being something.

One offered gentle counsel, trying to shift my eyes from myself to others who live real, full lives even with restrictions and limitations like allergies, diabetes, asthma and more, “it is possible to have a ‘normal life’ even with some difficulties.”

But inwardly I was like a toddler throwing a tantrum. Arms crossed. Pouting lips. Drowning out truthful voices with my loud complaints. Pushing away helpful hands that try to guide or comfort. Screaming my self-centered will: If I can’t have it the way I want it, what’s the point? 

Maybe it’s not so much that I want a “normal” life (even though that was the phrase I used initially), but I want an “ideal” life. My ideal. Life the way I picture it. With freedom and breathing room and not this minute-by-minute dealing with pain and fatigue and fog and dizziness and constantly needing to monitor my body, my energy, my time, my medicines, my environment.

And where there are challenges—seamless, effortless victory.
And where there is brokenness—beautiful, radiant healing.
And where there is tiredness—breathable, restorative rest.

And all of it immediate.
Or at least more immediate than taking weeks, months and years…

And preferably with an inspirational score in the background, with uplifting notes from percussion and brass and strings and reeds to keep me keeping on like a movie montage where all the tediousness of the trials is shortened into a few minutes of beautifully shot lighting and angles.

… So in this morning’s new light, with new mercies unfolding, I reflected back on my dark moods this weekend and remembered again that it is not up to me to control either my brokenness nor the when, how or way of my healing.

It is up to the Potter.

And Jesus asked of me this morning, “Do you trust Me? Will you trust Me? Will you relinquish control to Me? Will you allow Me to craft where the light and life seeps through and where the cracks are completely healed and where it is best to highlight what was broken? Do you trust Me?

And my response is both immediate and hesitant.
Full of faith and full of doubt.
Similar to the father in Mark 9, “I trust! Help my distrust!”
And the hymn-found words of Louisa M. R. Stead, “O for grace to trust him more!”

… a little relief.

But allow me to back up a bit, to the night before Christmas.

3:30 PM my phone alarm goes off to tell me to take my first pill.
19 minutes later I head to the kitchen for my second medicine…
…which gets held in my mouth for 1 minute before swallowing.
20 minutes later is my third medicine.
10 minutes later my fourth.
and 15 minutes later I need to start eating.

I’d been feeling decent that day so managed to do a quick cleaning of my room and finally set about my Christmas decorations. Between time, energy and emotionally needing to just do a little something different and meaningful this year, I didn’t do my full, normal decorations.

No moving my salt lamp and setting up my little tea-themed tree with lighted tea house and all its surrounding decor. Just the window garland on top of my desk instead with my little black stocking hung and one little white teapot and one little white teacup and saucer (both ornaments, neither actually hanging) all framing and beckoning the eye to the focal point—a Christmas plate emblazoned with the word “Hope”.

Then after my salt cave session I was feeling better again so I managed to get Mom’s gifts from Dad boxed and wrapped—in between pausing to take medicines. I got changed for church in-between bites of soup. And then took my final medicine 3 minutes after I finished eating and drinking and 3 minutes before I could drink again (or, actually, pop in a mint on the way to church)…

I had to eat early because we went to the 5:30 Christmas Eve service.

I put my nose filters in and wore my face mask and had a spare with me as well. Just in case. (Though it’s really hard to breathe when I double up like that…)

We had barely entered the sanctuary doors when the scents hit and overwhelmed. After all, folks dress up on Christmas Eve and, apparently, they all want to smell nice as well. Trouble is, when you get 350 people “smelling nice” together, it’s not so nice.

At first I was going to attempt sitting in the front pew with Mom and we went in and she immediately began chatting with someone she hadn’t seen for awhile and I immediately realized I wouldn’t be able to stay. But the pastor approached and so I smiled and shook his hand and tried to speak a bit… but I was quickly losing my ability to breathe and the dizziness was starting and so I told Mom I had to go and tried to make my way quickly back through the sanctuary to the Welcome Center where more breathable space and nice chairs awaited.

Except the further I got into the sanctuary the more overwhelming the scents became and the wooziness kicked up and I tried holding my breath and moving faster but with all the crowds I couldn’t. I found myself avoiding eye contact and my lungs burning but I still didn’t want to breath in the fumes that I knew would make me worse… I prayed and tried not to panic and finally broke through the crowd and the line of folks entering (through the main doors at the back of the church) and collapsed into a chair in the Welcome Center breathing deep and calm.

I sat there, watching all the folks pour in and knowing I’d be there alone for worship on Christmas Eve.

How would I light my candle? Who would I pass it on to?

I pulled out my bulletin and glanced through the order of service, curious and eager to see what our story would be this year…

Max Lucado’s The Crippled Lamb.

My eyes filled with tears.

I sat there with nose filters in and face mask on staring through the windows and glass that separate the Welcome Center from the sanctuary. And I pondered the separation. How my body prevents me from being in among them, present in there, worshipping with them, sharing the light as it’s passed… I can see it, but there must be all this stuff between them and me (and between them and my mouth/nose).

And that’s when it occurred to me. That there Christmas Eve we were celebrating the birth of the Christ-child. Immanuel. God with us. The One who was foretold. The One who touched the untouchable and loved the unlovable. The One who came to save and would tear the veil.

The veil that separates.

No more separation between us and God.
And, because of that, no more impenetrable walls between each other, as well.

And I took encouragement in the fact that there will be a day when the rest of the veils will tear, the rest of the walls will fall and I will again be able to worship with and among the people of God with no filters, no masks, no curtains or glass window panes between us.

And then I saw Mom walking into the Welcome Center.
She came to sit with me through the service. So I wasn’t alone.

And our ushering friend didn’t neglect us back there when it was time to pass out the bread, or the grape juice, or light the candles.

And there was beauty and grace.


After service Mom and Dad dropped me off at home and then they headed down for the annual Christmas Eve gathering with family on Mom’s side. I opted out this year for a few reasons.

First of all, being a highly sensitive introvert, I am easily overwhelmed and exhausted by commotion (lights, sounds, smells, movement) and people. This is true even if the commotion source and people are dearly loved. This is exacerbated by my fibromyalgia which also adds in pain and achy-ness when I’m overloaded. This is even further exacerbated by my newfound and still increasing scent/chemical sensitivities which also add dizziness, nausea and headaches (likely a vestibular migraine) to the mix. And if that’s not enough, my current struggles with Lyme and how the treatment demands so much of my body and has me worn just exacerbate all these problems further.

So after a rough week, a full energy-expending day and the scent and sensory overload of Christmas Eve service, going to an allergen-filled home with crowded small rooms with multiple conversations where I’d have to have at least one face mask on and the majority of the (older) folks there wouldn’t be able to hear me speak anyhow, well, this year it wasn’t worth it.

Some years it is.
Some years it is worth facing all that to spend time with family.

But this year with everything going on with my body, it just made sense to stay home.

Choices.
We all have them.

Big and small.
Less consequential and weighty.
If this, then this…
If this, then not this…
Risk and results…

I am more keenly aware of choices these days and how the littlest ones have more consequences for me in this state.


The bonus was that staying home allowed me to decompress.

Unwind.
Alone.
Control of lights.
Control of sounds.

And prepare a little more for Christmas Day.

Stockings were stuffed.

My “mess” in the spare room that my body hadn’t allowed me to get to hitherto was finally cleaned up and the room was cleared to use for our family photos the next night.

Of course, that took longer than I’d hoped and I still got to bed later than I’d wanted.

But having the room for family photos was important to me.

Choices.
Consequences.


Because Christmas fell on a Sunday this year and there was no desire to miss worship, I rose early on Christmas morning.

The medicine schedule is the same at breakfast as it is at dinner.
Except in the morning it’s somehow easier.
It’s been woven into my routine.

Even when my schedule needs adjusted for off-routine days like Christmas where I put my pjs back on after my shower and save the getting dressed part until after gift opening.

Because my morning routine is…. well, routine enough and timed enough to slot parts of it in amongst my medicines. Stretching. Sinus rinse. Teeth brushing. Preparing breakfast.

The plan was to start around 7 AM with gift opening and we did. Mom and Dad with their coffee. Me with my cup of tea and a full belly. Instrumental Christmas music playing softly in the background. Snapping photos. Laughter and surprise.

It was pleasant.
Un-rushed.

And definitely a little sadder (and less complicated) without Cali here to get into the paper and bows and no stopping to introduce her to her new Christmas toys or pausing to play with her with our ribbons…

Then it was dressed and ready and off to our 9:30 worship service.

I didn’t notice at the time my unusual lack of pain…


I was a bit surprised walking into the sanctuary on Christmas morning that it was just as scented and overwhelming as the evening before. Perhaps some of the scent had lingered from the previous night (it does that, you know, even though very few ever notice)… or perhaps folks were just still fragrantly celebrating the holiday.

So I sat back in the Welcome Center again.

This time Dad wasn’t up with the choir, so Mom stayed with him in the sanctuary.
But at this point I’m fairly used to regular Sunday morning worship back there alone.

Well, alone after the sometimes-scented ushers leave.

And that’s okay.

But the scents and commotion and people encountered in that just-over-an-hour had made a steep withdraw from my reserves for the day…


I wanted to rest when I got home.
I knew my body needed it.

But there was tea to make for Christmas dinner.

And Mom and I still had much to do to prep the dining room and the “photo booth room” for our Gossert family gathering that evening.

So 90-some too-full minutes after getting home from church, we were off to my aunt and uncle’s for Christmas dinner and gift exchange.

I did wear my nose filters to help with any allergens from their cat or any stray smells that lingered. But no mask was needed. It was the most calm, least overwhelming part of the day.

Plus my aunt had lovingly left out any black pepper from the food she made so I could choose from any dish on the beautiful spread.

Grace.

But I was still quickly draining and after a few hours I was more than ready to head back home.

The car ride was nice.


Once home we all kept moving. Final preparations for when my siblings and their families would arrive that evening. Final touches to the photo booth (plus a test run), added leaf to the table, random “gifts” bagged for our White Elephant exchange, foods prepped to set out…

And since we never know exactly when everyone will get there, I had to figure out when to take my meds.

I started early.
And it was a good thing.

Because it was time to eat before anyone arrived and so I just made a plate for myself and sat down in the living room (where Mom was also finally relaxing—Stage 4 lung cancer, even when doing well on trial meds, can also leave you exhausted) and ate.

And you can’t eat in a face mask…

I’m not even sure when folks started arriving.
Or when I noticed it.

But somewhere along the way someone had not gotten the message or had forgotten or simply hadn’t realized what they were doing and… well, let’s just say some folks were scented.

Aside from one I noticed who flagrantly exuded fragrance, I never did pinpoint all the culprits. You know, it’s sorta awkward to go around sniffing people. And besides, I didn’t want to make anyone stand out or feel bad.

I managed to take most of the family photos in the “photo booth” and at least greet most of the family who was able to be here this year.

But it wasn’t too long until the nose filters, personal air purifier and even double face masks just weren’t enough.

I was getting woozy and nauseous and my head was starting to thump and I could even feel my ears closing up.

So I retreated to my room where I had stashed some peppermint seltzer, extra water and trail mix (the latter of which was never needed).

One thing you learn in a body like mine is to always have back-ups.
(Makes packing or going places ridiculously complicated, but…)

So I wedged my tripod against the top part of my door to keep it firmly closed and turned on the new humidifier/diffuser my aunt and uncle had just given me for Christmas and added the wonderfully not-just-tolerated-but-helpful pure essential oils of lavender and frankincense. And I put on soft instrumental Christmas music. And I leaned back in the bentwood rocker that had replaced my “desk chair” (which is actually a spare dining room chair then in use for our large Christmas gathering) and I breathed deep.

And I meandered through Facebook.
And I did my devotions.
And I watched the Doctor Who Christmas special.

And Mom came in to see how I was doing.
And I did exit my room (double-masked) to take photo-booth photos of some late arrivals.

And I did try twice to go back out among the family (or remaining family at the second point)—hoping that my time away had calmed my body enough. Nope. Every time I exited the room the symptoms began to worsen again within minutes.

But I didn’t cry.

I told Mom that.

I thought leading up to that night that if I “got stuck” in my room that I’d cry.
(It’s happened before with company. *shudder*)
Hence my messages and reminders to family about my scent issues.

But Christmas night I was okay.

And that was a grace.
Huge, beautiful grace.

I was a little disappointed, of course. And felt bad for my siblings who did make huge efforts to not be scented (even to the point of not wearing deodorant which made them uncomfortable)! After all, they had done what was right and still didn’t get to see me much because of others.

I’m discovering life is like that.
A lot.

But I didn’t get upset or depressed.

And I realized amongst all the crazy scent-symptoms and exhaustion that my day—and even then in the evening hours when my special pain meds usually wear off—that I wasn’t really having pain.

For the first in days.

Grace again.


I didn’t think I’d still be up when everyone left, but I was. And even exhausted and woozy, I donned my face mask (because, again, scents linger for hours even after folks leave) and tried to help a little with clean up but also made sure I did important things for my body like washing my face, brushing my teeth and—most essential in such circumstances—doing my sinus rinse.

So it was midnight again until we were in bed.

And all alarms were turned off for Monday.

I woke around 9.
I turned on the “clean air” EO diffuser at the family room/dining room split right away.

I was thankful I didn’t need my mask in the main part of the house.

Medicine. Essentials. Breakfast.

Then I crashed for a nap from around 11 until just after 2.

Up for lunch meds (way less complicated!) and a light late lunch/snack of leftovers.

Then watched my new Muppet Christmas Carol DVD.
And sorted my meds for the week (usually a Sunday task).
And just chilled on the couch with Mom and the TV.

(Well, plus dinner medicine routine and some comforting soup!)

I was exhausted.
My pain was back up… and even more so.
My stomach was off.
My head was woozy and a bit achy.
My sinuses were congested.
I was sneezy.
My ears were full and painful.

It was a reaction to all the scents, allergens and commotion of the previous day and a half.

My body had gone well past the limit.
And now it was crashing.

I was grateful to recognize what was happening.
So I didn’t get alarmed.
So I could monitor my moodiness (and not push and lash out).
So I could simply rest and do good things for my body.

Like humidifier and essential oils and sleep and sinus rinse and soup.
And get an emu rub from Mom before bed.
And not neglect some bedtime pain pills.


I did set my alarm for today.

And I woke up and my body was functioning again.
At least at the average level it has been.

And as soon as Mom got up I had her help me put my shielding lotion on my back (the one place I couldn’t reach myself) so that I was fully covered and able to try on the new clothes I’d been given for Christmas.

Because, yeah, I get itchy-burny and rash-y if unwashed new clothes—laden with all sorts of chemicals!—touch my skin.

The shielding lotion helps.
Mostly.
At least for the amount of time to try something on quickly.

And the struggle is real.
And the days are long and hard and I am worn.
And the choices are complicated.
And it’s easy to feel like there’s no winning.

But this is my life.
For now.

And still there is grace.

Habits and Choices

Back in July when I felt so threadbare, a beautiful thought occurred to me that perhaps hope is a habit.

In some ways that connection has helped to sustain me these hard, dark weeks and months as treatments fail and work and don’t hold and the process begins again…

And still every night I set my exercise clothes out for the next morning.
More often than not knowing very well they won’t get used.

But if hope is a habit, then I haven’t given up all hope…

Just a few nights ago, as I lifted the “DANCE”-banded capris, Tigger tank and black ballet slippers from their bin and placed them habitually on the third shelf of my tall bookcase—the one that houses books such as Ordering Your Private World, Six Hours One Friday, Finding God Where You Least Expect Him and our old United Brethren Hymnal—knowing beyond a doubt in my dizziness that it would be unlikely at best that I’d actually put them on the next morning, I managed a weak smile at my habitual while unfelt hope.

And then a snarky, cynical little voice in my head chided, It’s not a habit of hope! You only set them out because they’re on top and you need your pjs from underneath.

The voice, espousing fairly solid logic, was correct.

The outfit I use on good mornings to do my stretches and dance-like-movement lives on top of my pjs in a bin-of-sorts on a shelf in my closet. For both are items that get used several times before washing and, therefore, spend their days apart from the clean clothes in drawers and on other shelves. To access my pajamas I have to remove my exercise clothes from the bin first.

But, another equally logical yet kinder inner voice piped up, you wouldn’t have to…

This voice wasn’t just more optimistic, it was—somehow—truer. Bypassing the surface logic, it saw further and responded with another correct statement that, because it was rooted deeper, held more truth, more power, more sway.

After all, other possibilities did exist. It wouldn’t be hard to yank my pjs out from under the exercise clothes at night and toss them in on top the next morning… though with my preference for neatness and order it would be more likely that one frustrated morning I’d put my exercise clothes out-of-sight, out-of-mind before adding my pjs on top… or perhaps one night I’d lift up my exercise clothes and groan in despair and put them back in—on the bottom—after retrieving my pjs and then collapse dolefully into bed…

Regardless of which of these plentiful possibilities it would be, the result would be the same—my exercise clothes would forever be relegated to a new position.

On the bottom.

Only seeing the light of day when I actually needed them—or thought I really might.

Which is to say, almost never.

But I don’t do that.

I choose not to do that.

Somewhere along the way in my being-me-ness and organizing my nights and days, I chose to order my clothes and retrieve them and put them away in this way.

And habits don’t stick if we don’t somehow make little choices—consciously or subconsciously—along the way to continue doing so.

You’ve made conscious choices to continue doing this over the years.

The kinder, truer voice was right again.

Because there have been times when I did stop to think about what I was doing.
Why I kept putting out my exercise clothes.

And maybe in all those “almost” moments I didn’t actually realize the full depths of the hope-habit I had created, but I still chose to keep up the habit.

I chose to keep doing it.
I am choosing to keep doing it.
I will continue to choose to keep doing it.

I think that often hope is a habit.
Yet a habit is built on choices.
And choices aren’t just once-for-all.

They are renewed, remade again and again.

Sometimes daily.
Sometimes hourly.

And the more I think on it, the more I realize it applies to more than just hope found in habitually setting out exercise clothes…

Maybe Hope is a Habit

Last evening I posted probably one of the most difficult posts I’ve ever written. It was a lament. Fairly raw. Honest. Not overly filtered.

The entire time there was a part of me that wanted to cheer it up with some white-washed scripture. Something positive and reassuring and… ultimately, in the circumstances, pithy.

But I couldn’t.

And not because I was trying to hold on to good theology.

It was, rather, because I was too worn. Too broken. Scriptural truths (in context or not) were simply slipping like water from my grasp.

And yet, as we almost always find with laments in the Bible, I could not close without a reaffirmation of trust and truths that are so engrained within me that their presence is known even when all else falls apart.

Those four sentences were a struggle.

And yet they were just as raw and honest as the rest.

So I hit the publish button and I brushed my teeth and turned down my bed. And before I put my computer to sleep I opened up iTunes to my morning exercise playlist. And when I got my pjs out to put on, I placed my exercise clothes on the bookcase.

Just like every night.

I also had my tea pot warmer and cup ready on my desk along with the BIC lighter that I use to light my candles when I get up on time to write in the mornings.

And then I realized what I was doing.

I said it aloud. To myself. To God. I didn’t believe the morning would bring the ability to move about and stretch and exercise and I didn’t believe I’d be able to get up and around early enough to have some book time. There was no hope for a better morning.

But I still prepared for it.

Because it is habit to do those things.

And that’s when a new thought struck me: Maybe hope is a habit.

And I crawled into bed, with heat on my pressure-filled, aching ears. And I carefully placed my head on the pillow so as to not incite dizziness. And my weary body sunk into the warmth and comfort of my bed.

And I struggled to focus on my memorized evening daily office prayers.

And that’s when God’s Spirit  offered flashback images, reminders and new thoughts.

Because yesterday I just wanted to stay in bed and sleep off symptoms and cry. All day. But I went to work. (Well, Dad drove me.) And though I may not have gotten much actual work done (for more reasons than just my health – it was an unusually busy-with-people day), I was there.

And when I came home I crashed for a 2 hour nap, waking at 5 to my parents wondering what was going on for dinner. They could see I was not in a good place. They even offered to take me out to one of my favorite places. Mom asked me what I wanted to do. What I felt like doing for dinner.

“I feel like eating ice cream and going to bed,” was my honest response from my ever-sore throat and ever-weary body. “But instead I’m going to help you (help me) make dinner as best I can. And I’m going to enjoy the strawberry-chicken-spinach salad more once it’s in my mouth than I can currently imagine I will. And then I’m going to enjoy a half cup of strawberry ice cream. And then I’m going to make that Norwex call. And get that e-vite for another hostess out. And maybe write a blog post. And then I’m going to bed.”

And that’s exactly what I did.

Right down to enjoying the brilliantly combined flavors of the strawberry-chicken-spinach salad once they were in my mouth.

And so as I was in bed a few hours later, I was reminded of these things.

That perhaps I still have hope even when I don’t feel hopeful.

That perhaps God is still building character in me even when I feel I am lacking, slipping.

That perhaps I am still persevering even when I feel lethargic, apathetic and threadbare and like I’m slo-mo falling backwards rather than pressing forwards.

And maybe this is what it means to be held.

To be sustained by God.

To be formed by His Spirit.

To let go of my ideals, my pride and my striving.

Maybe this is what C.S. Lewis was referring to in The Screwtape Letters when he mentions obedience in the face of nothingness-of-desire.

“Our cause is never more in danger than when a human, no longer desiring, but still intending, to do our Enemy’s will, looks round upon a universe from which every trace of Him seems to have vanished, and asks why he has been forsaken, and still obeys.”

I had always pictured living out that philosophy—that encouragement—victoriously. Defiantly.

A strong warrior’s cry deep within. I will do what is right! I will do what is asked! I will not let the enemy win! I will battle on! I will persevere! 

Like a movie montage highlighting the strenuous striving, sweaty effort and dogged determination of a warrior or fighter or athlete or overcomer, set in snippets and run together in moments what in reality takes months or years, all set to inspiring music like Eye of the Tiger or Chariots of Fire.

But maybe it’s not always like that.

Maybe it’s most often not like that.

There was no defiant cry last night. No striving. No battle cry.

Just a weary resignation to do what I had no desire to do.

And so I think of Bonhoeffer’s words and I wonder if I am “like a beaten army, fleeing in disorder from victory already achieved.”

When I set to choreograph that poem as a mime piece, one of the first and easiest parts, and the image that sticks with me the most even now, was that line.

Fleeing in disorder. 

I slow-mo’ed into a running statue.

From victory already achieved. 

With each beat I transformed the running statue into a cross.

The cross is the victory achieved.

God’s incarnation. God’s sacrifice. God’s work.

Not ours.

Not mine.

Maybe there are no movie montages for me.

Maybe there are no valiant battle cries or enemy-defiant shouts.

Maybe there is no earthly healing.

Maybe there is little to no seeing on my part of perseverance, of character, of hope.

Maybe there is only Jesus.

And maybe that’s okay.

Maybe then, in my failures and in my frailty… in my weariness and in my weakness… in my apathy and in my honesty… in my shameful brokenness… maybe then Jesus shines through.

Maybe then others can see what God is doing in and for me.

Because I am often blind to it.

And maybe that’s okay.

And maybe that’s what it means to be held.

And maybe hope is a habit not of my doing, but worked and sustained by the one in Whom I abide and Who abides in me, keeping me connected by grace to the vine that sustains and causes me to bear fruit.

Even when I can neither see nor feel it.

Threadbare

I am worn.

There’s that Bible verse. The one about endurance. The one that lists all the good things that suffering produces.

Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.

I’m having trouble believing it.

I echo the father in Mark 9, trying to put on the appropriate faith—”I believe!”— but then honestly crying out, “help my disbelief!”

Because from where I stand or, rather, sit dizzily and wearily, there is no perseverance.

I’m ready to throw in the towel.

My resolve is weakening.

My endurance is nonexistent.

I noticed in my symptom journal that out of the 207 days so far this year, only 15 were not noted as experiencing these ear and throat issues. I didn’t even bother looking at the fatigue and dizzy stats…

I no longer have good days. Sometimes I have a good half-a-day. Or a good string of hours.

But no good days.

And certainly no good weeks.

The longer this goes. The day in and day out of illness. The pain. The fog. The fatigue. The constant sore throat. The incessant aching pressure in my ears. The near-continuous state of dizzy. The unrelenting symptoms. The unanswered questions. The dashed hopes of thinking we have it figured out and a way to help heal or treat but it never working out. The frustration of doctors who won’t or can’t help. The pulling back in all areas of life. The isolation.

It’s getting harder and harder to hang on to hope for anything to change… for anything to do anything other than slowly, continually get worse.

I feel I have less character now. If the symptoms themselves don’t give me blinders, making it hard to see anything beyond their screaming for constant attention, then the depression that comes along with the constancy of such symptoms surely does. I do less for others. I put myself first more often. I give in more easily to sour attitudes, to grumpiness, to moodiness, to anger and frustration, to inaction… (and let’s not even mention how much church I’ve missed and how far behind I am in my daily audio Bible).

And I’m losing both the energy and the resolve to fight it.

I am not persevering. I am not persisting. I am not continuing steadfastly.

I’m at a standstill. Crumpled in exhaustion while the world goes on.

Maybe I’m just filled with the cynicism of Dilbert.

But I’m having a hard time believing that scripture verse out of Romans.

Because I don’t feel that anything of value is building in me through all of this. No perseverance. No character. No hope.

I simply feel worn.

Like an over-used shirt or a child’s poorly cared-for teddy bear. Days and years of use, of dragging, of friction have thinned the fabric, frayed the edges, worn some spots clear through.

I am threadbare.

And maybe, despite the fact that the verse keeps coming to mind, maybe I’m reading it wrong. Maybe it wasn’t meant to apply to my type of situation. I don’t know.

I’m frankly too tired to find out.

I just know that I’m not seeing it happen that way.

I am wearing. Not building.

I go back and read the verse.

Read that section.

Part of my brain acknowledges the truth in it.

That there is beauty there.

But it is fleeting.

And I look around about me. And I try to think if anything is still solid. Still steadfast. Still resolved.

And there is this:

God is real. God is good. There is grace. Heaven holds healing for me even if earth does not.

You will never convince me to disbelieve those things.

But right now? Right now I’m done.

I’m ready for Jesus to return or call me home.

I am worn.

I am threadbare.