chronic

content warning - heavy vulnerability

I walk with a cane most days. I started off very self-conscious, very much in denial. Now I say, “F it–I can’t stand without wanting [feeling like I’m going] to fall–who cares.”

Who cares that I lay down and my heart rate races then goes back to normal then repeats. Who cares that fatigue rakes through my body to the point that I have to lay down right where I sit/stand/lay–that it hurts to even think of moving to the nearest piece of furniture. (How does fatigue hurt?)

Who cares that I feel like I did the summer I was 15–high on a prescription that made my legs feel like noodles–feeling like my brain will drop out of place, my bones falling in sequence.

Who cares what I look like when my body can’t stand on its own, sit up straight on its own, without willing each muscle to activate, each bone to sit in its rightful place.

Loved ones ask Are you hurt? What happened? and I have no idea what to say other than, “It’s just how it is now,” with a shrug of my shoulders, with a tone much lighter than I expect, leaning on a cane from my grandparents stash by the front door.

How do I say, 

It’s been like this for years, now you can just see it.

That I started using a cane so I didn’t have to lean on my dad–or if there wasn’t a wall or something available. That it really does feel like the blood in my body & fairy dust (concept, not drugs) are keeping me upright and not bones and muscles. That to keep living a life, I have to get out of the house somehow. That I can’t believe at 21 years old, this is where my life is. 

But I can’t hear the repetitive,

Have you tried this drug, this supplement, this exercise regiment? I really just think you have to push through the fatigue and pain, it will be brighter on the other side. (On the other side of what? A loss of consciousness? Death?). When was the last time you went to the doctor? What does your doctor say about it? Blah blah blah blah blah

I’m just trying to feel something other than the buzz of my body, the resonance of pain/nausea/discomfort/sensation. Filing the feelings beside the truth of a cane pushing into the ground, pushing back up to me. 

I hadn’t noticed how far away I could feel from my body yet felt every sensation course through it.

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Chronic headaches have turned into bodily pain/nausea/discomfort/sensations. An understanding that stepping the wrong way shoots up my brainstem into thunder that reverbates around up there; into finding the right breathing pattern so my rib doesn’t move out of place and push nausea throughout the rest of my body.

Pushing through shaky, double vision and the need to succumb to nausea and fatigue and general unstableness for the sake of art, of reading, of eating, of folding laundry, of answering a question.

I hold my hands out in front of me as if I’m worshipping the arthritis gods to give me a break. Palms up and fingers curved yet locked. At least the insides of my forearms are catching up to my shoulders with the high UV shining through the windshield. I don’t remember the summer solstice hurting this much.

How do your ribs rearrange themselves in your sleep? Stiff as a board, in a bed you hadn’t seen in at most, a decade. Had I sneezed weird the day before? I swallowed down the physical change as if on the last leg of an adrenaline high. Trying to stretch through disbelief yet not feasible as the rest of my body also felt like it woke up on the wrong side. Succumbing to a fetal position as my body tries to forget the rigidity of a day yet to be lived.

Half the time I remember that I'm alive, I let the pain/discomfort/sensation fuel the laughter that lines my airways, crawling out but nonetheless there. It’s a receipt of something…that I really am still here? Resilience? A finger to the man (unsure who, more like concept)? The other half, I just want to collapse in tears. 

How do I let someone see my grief when it is not a shared experience? I don’t want to have to explain afterwards, or through it. Especially through it.

I have no idea what is going on. Have I ever? Oh I have, and I’m not sure what is worse.

If my internal is a reflection of the external…I understand that in terms of perception. I can swallow that pill (thank you to my therapists) and reevaluate and journal and escape and breathe through it. But will tests and vials and vitals ever give us the answer as to what is really going on inside of me? Does it matter? It really does, but I try not to think about it.