June's Musings

In my nearly 16 years of being diagnosed with a chronic illness, I’ve had a few people, perhaps concerned, perhaps in morbid curiosity, ask what it’s like to navigate this illness. Some background: One day when I was 12 years old, I woke up feeling feverish, achy all over, and with just a general feeling of malaise. Days and weeks went by and the pain got worse, my joints began to swell and lose range of motion. Even worse though was the barrage of clueless doctors and endless tests to endure as my family and me tried to figure out what was happening to me. After about six months of confusion and little answers (not to mention, excruciating pain), I was finally referred to a rheumatologist for children who diagnosed me with Juvenile Rheumatoid Arthritis (now called Juvenile Idiopathic Arthritis) of the polyarticular type (meaning many joints are affected, not just one or two like in most cases). In the time it took finding my diagnosis, I had lost most of my mobility, independence a...

Being convinced these machinations in my head are good legitimate ideas. That might be the worst part. Being unable ultimately to trust yourself down to your core. Convinced of two completely opposing ideas at once, mind switching like the clock, tik tok.  What am I worth? Am I more than my actions, my ideas and ideals? My identity being so warped from what there really is, the thing I give to people, the one they see.  I fear I have become made of wood, each morning I stiffen and creak. Every day I await the chopping block.  My mind is poisoned by my thoughts, I know not which are friend or foe. Lately they are all I see.  “We are all conglomerates. Some of us just feel more one than others.”  I want them combed out, detangled, hot grease dripping, a stove eye on high, a hot comb glowering up at me. I want them processed and pulled through, til by some miracle or someone’s mama’s persistence, they resemble something straight.

Insatiably I search for that feeling Compulsively cleaving to cloying closeness, craving comfort In the form of hidden touches  And muted moans in the backseat And Dripping with anticipation of the promise of makeshift pleasure  I find when I touch your chest I feel nothing My stomach, not alight with electricity and flying insects All the while this numbness building Spreading like a sickness As I bring you to your pleasure That passionate release I yearn for remaining hidden from me Til feeble from hunger and thirst I stumble into another pair of arms Blissfully unaware of burdens those arms  May be holding Wondering Why I feel like an empty vessel, Longing to be filled Driving my universe towards the notion Delving into places Love may be hiding  Finding it not in the spaces Everyone said it would be