Today, the world is wide open, as if split down the center and exploding. The sky- bright, blue, and endless, just speckled with cream and lavender clouds- spreads from here to Tokyo with ease. In our tiny place beneath the sky, it’s just plain HOT. It’s Saturday and just after five so it’s the day’s heat-climax before the slow relief of evening. Live music resonates around every corner, thrumming playfully into the apartment. Couples walk hand in hand in the alleyway below my window, stumbling in their sun-soaked, love-cured drunkenness.
After a rest, I walk around the block with Jez. The air is sweet with burning coal and barbecue. We make our way to the corner tavern, where laughter, happy voices, and the clinking of glasses dance out of the open doors. Today I notice the tiniest purple flowers- miniatures of the kind of flower kids first learn to draw (circle circle circle dot)- clustered on tiny, bright green stalks. A fluffy orange cat stretches in a shady spot, eyeing the pitter-pat of lizards but too hot to move. The plant on the corner is like a cluster of seaweed but apricot-orange and shooting knee-high in all directions. Banana plants arch two-stories high, their broad and shiny leaves rustle in the slightest breeze. Damn. I am living in a magical place. Feelin’ it.
This is A Paradise. Sick in Paradise has its ups and downs, emotionally. I’m happy to be Here in such a wonderful place, and it is only in passing moments that I feel this pang of irritation or self-pity or frustration that I can’t participate in the world fully, or really much at all. I think it’s fortunate that I have always been a person who can enjoy simply observing beautiful things. Thankfully, too, I truly delight vicariously in the happiness of others, especially the people I care about. This can keep me going for a long time, I think, despite the dreariness of a life ruled by chronic pain and illness. It’s not really how I would have defined a full life, though, a year ago.
On a day like today, were I not sick, I’d be down at Vinoy Park right after work, with a blanket and a friend or two, probably sipping on a cold beer in a plastic cup, laughing, listening to live music, people watching, and stretching out gently and naturally into the promise of an unwritten evening. My life, instead (for now, at least) hinges on a controlled, calculated succession of hours and practices. My goals are to minimize pain and stress. This evening I will rattle around in my brain through the next hours until it is early (or late?) enough to go to sleep. I really miss that feeling of anticipation and unpredictability that can only happen when you’re not constantly terrified and cautious about making yourself sicker or better or choosing the right cocktail of vitamins and food and supplements and sunlight and rest and stretches and yack yack yack YUCK. I gotta find some PLAYTIME for my lil brain.
I told myself I wouldn’t do this, but I can’t help but place a meaningful bit of hope on this upcoming IGG infusion. An infusion. Still falls short of the exorcism my instincts suggest necessary, but it’s getting closer. Put something in to take this hideous monster out (and that’s my dark imaginings only and I know it). An infusion. What else can take away the ringing in my ears? The constant ache and stabbing pain of my neck? The eternal exhaustion? The disorientation and depletion? This, maybe. An infusion. 3 more days. Above all, HOPE.
“We live our lives, do whatever we do, and then we sleep. It’s as simple and ordinary as that. A few jump out windows, or drown themselves, or take pills; more die by accident; and most of us are slowly devoured by some disease, or, if we’re very fortunate, by time itself. There’s just this for consolation: an hour here or there when our lives seem, against all odds & expectations, to burst open & give us everything we’ve ever imagined, though everyone but children (and perhaps even they) know these hours will inevitably be followed by others, far darker and more difficult. Still, we cherish the city, the morning, we hope, more than anything for more. Heaven only knows why we love it so.” –From Michael Cunningham’s The Hours