Meanders in the Night
For an array of reasons, mostly and not without exception, one book manuscript and other things have me introverted. So, I thought I'd republish something I wrote a few years ago for a now silent Lupus mag. I think this was was the third Lupus article I wrote . . . the first, in the summer of 2008, made my parents speechless as they learned of high school chaos and general teenage insanity that coincided my 16 year old self and a fresh diagnosis. I was 31 that year. Now . . . I'm 38 and still meandering on the path. More than half my life has been marked by Lupus. Tis, tis.
This one remains one of my favorite pieces. Of course, memories of Istanbul do more than suffice for a pleasant meander.
This one, here, from November 2010 does more than speak the call of my current days.
Lying in bed on a chilly night, too tired to think or work, with achy joints and pleurisy in my heart and kidneys my mind always ponders. Oh, and my face burns like the Sierra Dessert in a heat filled wind storm with trails of red wings for proof...I hate the butterfly and all that it entails.
Most days I take this Lupus laden life with grains of salt, usually avoiding them getting under my skin. I call my pill bottles gremlins, I denote my daily handfuls of meds as Wonder Woman's aides, and I flip the bird at the butterfly staring back at me in the mirror. Really, when I lay on a coat of makeup I flip it and say "take that Bitch." Yet, I remain like a stereotypical New Yorker...living in fear.
I doubt the majority of New Yorkers really live in fear, but our stereotype abounds. We fear muggers, hour delays on a stopped and crowded subway train, and raises in rent. Yet, we put up with these inconveniences for the beauty and joy that this city brings. We love the late night sirens, we love the idle hums of the trains, we love our coffee vendors, and we love the stench the city sometimes reeks of like an unshowered athlete after the winning game. We love the concrete and brick, and we love the hum and heartbeat of millions crowded along grimy streets. Lupus...Lupus doesn't have a lot to love.
Lupus doesn't give you the choice to be lazy one day and energetic the next. It doesn't allow you to be picture ready pretty or carefree without a care. Alarms are set to take the Wonder Woman aides, giant size bottles of Advil and Pepto are kept in your bag, and painful sleep is often the reality. Long, warm showers are taken several times a day; not for the luxury but rather to ease the aching pain oozing from every orifice of your body.
Sometimes we let old friends into our house of pain, and new ones too, but they can never really understand. God bless them when they try, but they get annoyed with all the talk, don't understand your lack of outward worry, and sometimes blow you off. Men you flirt with slither away if you tell them the L word, sex can be burdensome with the exhaustion and aches, and if you've ever had one bail on account of the disease you never forget that pain and shame. Friends skirt plans with you because they either think you need to rest to get better or that you are a drag because you go slower at times. There is no getting better; there is only the hope of another good day soon.
In many regards Lupus has the habits of an addict inside your body fighting to annoy you, but it also acts like the city. It takes your body, seemingly normal and beautiful from the horizon and twists it upon closer examination. Lupus is the stalled subway train, the stench oozing from the sewers and unbathed masses, the mugger floors you in bed for days. Yet, New Yorkers choose to stay in a congested city ready to pounce on them for its last meal at a moment's notice for those moments of skyline glory and sexy allure. Lupus patients find their own way--like me and my twisted humor--to battle the perpetually changing elements of this thing called SLE. In the end, just like tired tourists will call New York a beautiful mess on their way back to suburban safety, Lupus patients are a beautiful disaster. They cope and rebound, never looking the same twice.
This one remains one of my favorite pieces. Of course, memories of Istanbul do more than suffice for a pleasant meander.
This one, here, from November 2010 does more than speak the call of my current days.
Lying in bed on a chilly night, too tired to think or work, with achy joints and pleurisy in my heart and kidneys my mind always ponders. Oh, and my face burns like the Sierra Dessert in a heat filled wind storm with trails of red wings for proof...I hate the butterfly and all that it entails.
Most days I take this Lupus laden life with grains of salt, usually avoiding them getting under my skin. I call my pill bottles gremlins, I denote my daily handfuls of meds as Wonder Woman's aides, and I flip the bird at the butterfly staring back at me in the mirror. Really, when I lay on a coat of makeup I flip it and say "take that Bitch." Yet, I remain like a stereotypical New Yorker...living in fear.
I doubt the majority of New Yorkers really live in fear, but our stereotype abounds. We fear muggers, hour delays on a stopped and crowded subway train, and raises in rent. Yet, we put up with these inconveniences for the beauty and joy that this city brings. We love the late night sirens, we love the idle hums of the trains, we love our coffee vendors, and we love the stench the city sometimes reeks of like an unshowered athlete after the winning game. We love the concrete and brick, and we love the hum and heartbeat of millions crowded along grimy streets. Lupus...Lupus doesn't have a lot to love.
Lupus doesn't give you the choice to be lazy one day and energetic the next. It doesn't allow you to be picture ready pretty or carefree without a care. Alarms are set to take the Wonder Woman aides, giant size bottles of Advil and Pepto are kept in your bag, and painful sleep is often the reality. Long, warm showers are taken several times a day; not for the luxury but rather to ease the aching pain oozing from every orifice of your body.
Sometimes we let old friends into our house of pain, and new ones too, but they can never really understand. God bless them when they try, but they get annoyed with all the talk, don't understand your lack of outward worry, and sometimes blow you off. Men you flirt with slither away if you tell them the L word, sex can be burdensome with the exhaustion and aches, and if you've ever had one bail on account of the disease you never forget that pain and shame. Friends skirt plans with you because they either think you need to rest to get better or that you are a drag because you go slower at times. There is no getting better; there is only the hope of another good day soon.
In many regards Lupus has the habits of an addict inside your body fighting to annoy you, but it also acts like the city. It takes your body, seemingly normal and beautiful from the horizon and twists it upon closer examination. Lupus is the stalled subway train, the stench oozing from the sewers and unbathed masses, the mugger floors you in bed for days. Yet, New Yorkers choose to stay in a congested city ready to pounce on them for its last meal at a moment's notice for those moments of skyline glory and sexy allure. Lupus patients find their own way--like me and my twisted humor--to battle the perpetually changing elements of this thing called SLE. In the end, just like tired tourists will call New York a beautiful mess on their way back to suburban safety, Lupus patients are a beautiful disaster. They cope and rebound, never looking the same twice.
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