Invisibly Dying – A Lament For Those With Chronic Illness

Our ancient windows are no match for this stiff north wind.

Our curtains tremble – just like me.

Neighbors on both sides are sleeping. I know this for sure.

These urban homes practically touch – holding hands across shared driveways - making daily routines no secret.

But the rest of our quirky neighborhood will keep me company until about 3:30 a.m.

At which time even the college students sleep.

.

Not me.

Sleep is totally foreign to me – like Tajikistan or Uttar Pradesh – places I can’t even imagine.

Once again, I can’t breathe.

Is it the meds? Side effects? A lack of oxygen? Anxiety? COVID?

Tajikistan feels nearer to me than sleep.

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A serendipitous encounter at the grocery store

And an old friend says I look great – but I know she’s shocked by the bags under my eyes.

So am I. They’re alarmingly large.

Go ahead and stare at my grey eye-barnacles – perhaps I even want you to. Because I’m not okay and sometimes I wish it were more visible.

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I’ve given in to the fact I can’t keep up with the others.

Of course, I still WANT to run, and sing, and dance, and visit all the countries.

I WANT to clean my own house and cook my own damn meals.

I WANT to go back to work so we have more money to give away.

I WANT to go on every walk my dog thinks is necessary.

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Those of us invisibly dying wonder how to tell you.

We worry if we tell you how we’re really feeling you’ll judge us for being complain-y.

We worry if we don’t tell you how we’re really feeling you’ll assume we’re fine.

We worry you won’t believe us because our hair isn’t falling out.

We worry you’ll tell us what miracle treatment your neighbor’s cousin’s daughter sought for her own bizarre disease that is nothing like ours.

We worry you’ll weary of our weariness.

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So those of us invisibly dying pretend we’re fine.

It just works better that way.

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There’s a good chance my body isn’t dying as fast as my mind.

My body is made of tempered glass – thick and durable, but still, it’s glass and it has plenty of cracks.

My mind is also glass, but the thinnest, most delicate, tenuous kind that cracks with even a nasty look. It shatters easily and often.

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I tell myself to be strong.

I pray.

I ask God to make me strong.

I ask God to stop the insanity going on in my head.

I don’t know if he’s not listening or if this is just the best he can do, but I still feel insane.

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I worry that my faith is wavering.

I worry what Jesus thinks about wavering faith.

I worry this is depression.

I worry if I tell someone that, someone else will throw another medication at me, and dear God, for all that is sacred and good, please no more medication. PLEASE!

I worry that I’m not making the most of my limited days – HGTV, Longmire and Ted Lasso stealing days from Bible Studies, serving the poor, volunteering at school, and other wholesome things.

I worry that even if the pandemic doesn’t kill me, it’ll still have zapped all my emotional, spiritual, and intellectual energy anyway and I’ll be useless for whatever years I have left.

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If you’re invisibly dying, people just really want you to act normal.

Because if something’s invisible, we can choose if we want to believe it or not.

Like faith.

Like time.

Like Venmo.

Like COVID.

Like Jesus.

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I’m pretty sure I would not prefer to be visibly dying.

To those who are, my heart bleeds for you.

I don’t know which is worse - the flippant sympathy of others who can obviously see you’re dying or being treated normally when you’re not normal.

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But my lungs have holes in them and today I hear an audible wheeze that doesn’t even make sense to the doctors. And now I’m worried that this is the sound of oxygen leaking out when it should be going to my brain because nobody with a well-oxygenated brain would write such a sad diatribe. I regret it even as I write it.

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But I do sometimes act like a person with not enough oxygen to the brain.

I yell too easily.

And hurt people.

And forget things.

Like appointments -

And promises.

And ideas.

And that which I want to forget, I can’t.

I can’t forget the reoccurring dream where I'm not wearing a  shirt or bra in public and even though I plead with everyone in sight, no one has anything I can cover up with. 
The relevance of that dream to this post is not lost on me. 

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I don’t care anyway. I’m invisibly dying.

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I want to be the strong Christian who writes lovely things about faith and courage and strength and the way God always swoops in and saves the day.

I want to be the one people remember as always positive and encouraging.

And now I worry that I’ve just blown that.

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Invisible is the worst thing to be.

I’d never choose it as my super power.

I’d choose flying for sure – so I could fly off to every country in the world and meet ALL the people from all the continents and learn all their languages, eat all their foods, study all their cultural practices and religions.

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How can I show you, oh loves, that I’m still me?

How can you know that as I invisibly slip from this failing shell, I still want to laugh?

How do I tell you I ache, without you feeling sorry for me?

How do I let you into my darkness without darkening your world?

How do I let your light in without letting my darkness seep out?

Will we ever get this right?

Will I exhaust all my relationships with my exhaustion?

Will I run out of energy to find peace and wholeness before my days run out?

Will there be an actual heaven waiting for me that will make sense of all of this?

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Will I be visible in heaven?

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The more I come to terms with dying invisibly

The more I’m sure I see my invisible God.

What I used to only see dimly – as if looking through a thick glass*

Is now starting to take shape – the slightest imagery of something I've always known but just couldn't see - now new and afresh. Real.

And I don’t hate it.

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Maybe today I seem visibly shaken.

Tomorrow, most likely, I’ll seem to have it all together again.

And that’s just how it goes when you’re invisibly dying.

*1 Corinthians 13:12