I sat silent, staring intently at my phone. A tangled web of thoughts was being formed in my mind: Do I post the picture? But what will this picture say about my life? No picture tells the whole truth. And how many people are going to point out how good it is that I’m “out and about”, as if that’s all that really matters?
Nearly every time I consider sharing a picture of myself on a rare outing, I go through a long list of doubts and fears. Wondering if I can handle the potential cheers from others seeing me someplace other than my couch.
Because sometimes, I’ll be honest, I just can’t hear it. It can be painful to listen to the two second excited pop-ins, especially from the ones who show up for only these particular moments. Here to celebrate my 3 minutes of “normalcy” that were a rare part of yet another very sick day for me.
I’ve then sat and over-thought and critiqued myself for feeling so afraid to just share my moment. For feeling upset with those who truly mean well, but end up hurting me.
I’ve given myself the pep talks, reminding myself to continue bringing others into my world. To show the real me, in real moments. The me that looks mostly normal, but is actually very sick.
“So what’s the big deal anyway,” you ask?
I think in it’s most simplest terms this comes down to perception and reality. Most people see a picture of me smiling on a sandy beach with my husband and they read: “I’m feeling great today! So here I am, out adventuring like a normal person!”
What they don’t see is how long it took me to “wake up” that morning. How many hours passed before the hit-by-a-truck feeling let up enough to get dressed for the day. No one besides my husband was there to help me slowly make my way to the car so we could drive from our hotel to the beach.
I wanted to visit the sandy shore on our birthday getaway last month. Nothing felt more important to accomplish. So that’s what I set my sights and energy on. Because I had hope that there was just the right amount of everything-in-the-stars aligning for me to make it happen.
Just enough strength, the right level of pain, an inner excitement for a tiny bit of fuel. A sturdy cane and a husband to keep me from stumbling.
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It took me what felt like an eternity to make my way from the parking lot, over the sand hill and down close enough to the water to let my toes take a dip. Each step painful and difficult. My breathing, labored. The sun shooting through my sunglasses, spiking my head pain higher.
And yes, it’s true: I made it. Without falling over or passing out.
But not without sacrifice.
The truth? I found myself regretting all the effort of that birthday weekend days after we returned. In multiple moments you’d have found me sobbing that following week from all of the pain and symptom aftermath. It took me a week and a half to finally feel like my “baseline” was in sight, my sick normal.
And yet that picture we took sits brightly in my social media feed. To some as a beacon of hope that their friend or relative had a moment of enjoyment.
But to me it’s a picture that displays the very center of this excruciating journey. That sometimes the cost for something beautiful is far more than what we’re willing (or what should be fair) to pay.
What can also be lost in translation is that those moments for me aren’t as joyful as others view them. Like any normal person, when you’re going through something hard everything can feel tainted by that circumstance. Almost like a heavy film that is layered over our horizon.
I’m learning that it’s natural and okay for me to sit in the tension of what this reality is for me. That I can both regret and cherish that point in time. That choice I made to find enjoyment in those minutes at the beach.
Because the truth is this: no one should have to endure what I and other sick ones face for accomplishing simple tasks. Like slowly walking yourself to the edge of the shore. Or loading a dishwasher. Or getting out of the bathtub on your own.
Knowing what everyday tasks will do to us has a tendency to spin our view of the enjoyable moments when they come. Because they don’t tend to last in our world. We visit them, enjoy them, cling to the memory of them – but then the storm comes in all its fury.
And we know it. We know it’s coming. Because for many of us it always, always does.
In the end I chose to post that picture, and many others, because I’m reaching for something different. I’m reaching to cherish them for what they really are. They are part of documenting the reality of this chronic illness life. The good, the bad, the real.
It’s part of the remembering. For some day if I’m well enough to walk to the shore again without pain and without a week and a half of my body crashing like a deflated balloon? I’m going to look back at that moment.
And I will remember the beauty and the pain.
The inner strength and the frailty.
The kindness of a stranger telling me to take my sweet time up the hill.
I’ll remember that brokenness and beauty can mysteriously survive hand-in-hand.
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