I met his mom in November in the Texas hill country. We came for retreat, and God brought our hearts and lives together over shared diagnoses and Hope in Jesus. This week’s story is so real I have not been able to shake it from my mind.
Walking Through Fire
By Sam Re
A friend recently asked me how I was doing, not, How are you? or How’s life? or What’s been going on lately? but, In all reality, how are you actually?
Imagine if you will, walking up to a cashier at your favorite fast food place. You’re standing in line, awaiting your turn. Suddenly your right knee begins to hurt, almost as if it’s going to stop supporting your weight, not a ton of pain, but you can feel it. Now imagine the pain duplicated in your left knee. Then your right elbow, your shoulders, your left foot, right wrist, your entire left hand, ebbing and flowing, surging, retreating.
Now stomach pain so intense it feels like a pit where your internal organs should be, your body imploding to fill the void.
Next a pain in your throat, a burning pain from acid reflux. Water helps, but doesn’t quench it. Then sudden shooting pains in your chest as a nerve fires. On. Off. On. Off. There. Gone.
Another sudden shooting pain in a different location, randomly, no rhyme or reason, each leaving an ache.
You’ve had a headache all day, a mild one, but you can feel it, pressure in your forehead, pain in your temples.
Your back, shoulders, legs, and arms are now aching. Your whole body is aching. Then the nausea. You feel borderline sick, but you’ve felt this on and off all day and had to eat anyway to keep up your strength and weight.
You are tired; so, so tired.
All you want to do is collapse, right then and there on the restaurant floor. Your body doesn’t want to hold itself up anymore. You fight to keep standing. The pain, nausea and exhaustion are wearing you down. You struggle to keep standing there, acting normal, like you are fine, like everything is fine. But you are so incredibly tired, exhausted beyond belief, weary, and a little voice at the back of your mind is siding with your body, wanting you to give up and sleep.
But you’ve woken up feeling like this every day for the past week. The past month. The past year. The past six years.
So you focus. Steel your mind. Decide what you want. Then you hear something. You’ve been hearing it for awhile. People talking. Not just the words, but the conversations. All of them. Words bouncing around in your skull, pounding, piercing, painful.
A fly buzzing too? No, the sound of the ceiling fan, spinning, squeaking quietly against it’s metal bearings, the wind, people opening doors, moving, shuffling, cell phones ringing, buzzing. Noises, tiny and big. You hear them all, but they’re mixed together, bouncing around inside your skull like pinballs, a cacophony of white noise. But wait. What’s that?
The all too familiar feeling of adrenaline coursing through your system as every sense in your body is amplified. Every noise, every sight, every little thing that dares to touch you, the breeze gently moving your arm hairs. You are in full alert.
Then you realize the cashier has asked you what you would like. You need to order. You force yourself to think. The pain and nausea are getting worse by the second. You are starting to become afraid, but you focus. You start to utter the words of your order and realize you are stuttering, not making sense.
You focus harder, mumbling, “Uhmmm,” to complete what you were saying, focusing on each word. You stumble through the order.
Congratulations. You answered the cashier’s first question. What about the second?
* * * * *
This year is the hardest I’ve ever gone through. And yet, if I had the choice, I wouldn’t go back six years ago and change that I got sick. I wouldn’t remove these diseases I carry, wouldn’t cure myself. And really, I don’t know if I ever want to be cured.
I’ve often heard people say that your diseases don’t define you, and I agree. My diseases are not who I am, not the entirety of my being, but they have melded with my vision of myself. They have become something non-removable from who I am, as much a part of me as the gifts God has given me.
My flaws, my mistakes, my failures, my diseases, I’m not looking to get rid of them or hide from them or pretend they don’t exist. I’ve already lost so much that once was me. What’s left has been thrown with me into the forge, and when I emerge, those things will not be impurities or faults in the metal, but they will become my strength, for I am in the unique position to bridge worlds.
I know what it is be healthy, strong, fast, optimistic, and hopeful, and I know what it is to be unhealthy, slow, worn out, in pain, broken, pessimistic, and afraid.
I am in the flames where the forge burns brightest, being taken out and hammered into shape, thrust back into the flames. It will not always be like this, but my pain is not holding me back. It is not holding me down. It is my anchor point, necessary to forge me into who I need to be when God calls upon me, who I need to be for my part in His plan.
This is who I am now. And I have a voice.
Sam Re is a wildly creative twenty-something with an old soul, a quick wit, and a disarmingly loyal cat named Tiger. Six years ago, Sam was diagnosed with Eosinophilic Gastroenteritis after losing 22 lbs in eight weeks and winding up on the critical care floor of Children’s Hospital. The ensuing years added dysautonomia, POTS, Ehlers-Danlos Hypermobility, asthma, eczema, allergies, reflux, and spontaneous pneumothorax to the diagnoses mix.
Sam’s words can be found at: https://freedomfalsified.wordpress.com/category/walking-through-fire/
And his 3D creations at: https://www.etsy.com/shop/PhenixEmporium
Sam has donated his friend Rachel Hoffman’s book The Reality of Chronic Illness, A Photo Documentary, by Rachel Allison Hoffman. It is well-written, beautifully illustrated, poignant, and important. If you or someone you know are living with chronic illness, this is a must read.
Would you take back a diagnosis and erase the way suffering has changed you?
Share this Gauntlet Story somewhere on social media with the links below and using the hashtag #GauntletStoryFeast. Leave a comment to be entered in the giveaway for Rachel’s book and let us know where you shared. The winner will be randomly chosen next Wednesday, April 22nd after midnight and announced with next week’s Gauntlet Story.
If you are walking a Gauntlet or are close to someone who is and would like to contribute to our Thursday community please email me at firstname.lastname@example.org, and I will send you the instructions for submitting. Share with anyone you know who might like to join our Gauntlet Story Feast. (Please use the hash tag #GauntletStoryFeast when sharing so we can find and follow one another.) Our Hope remains.
Photography by Cindee Snider Re. Used with permission.