Posts tagged "illness/disability"
My Pain Doctor Asks What My Goals Are

My Pain Doctor Asks What My Goals Are

I want to tell him that the chronically ill don’t have goals. They don’t want to be ill. I want my old body back. I don’t want to be in his office. I tell the doctor, I want to stand long enough to make grilled cheese, want to walk the dark living room at night...
Final Affairs

Final Affairs

Find all my passwords on a yellow legal pad under my laptop; remember last winter Steph wrote my obituary, read it again before you publish it, make sure it is laugh-out-loud funny and don’t pay to publish it in the local paper but instead blast it on social media; remember to update my blog; call...
I Know My Body Tried to Save Me

I Know My Body Tried to Save Me

Dirty, Poz, Faggot, G.R.I.D: pseudonyms for the boy I don’t want to be. Gay-related. Gay-related. I don’t want to be gay-related. I don’t want to be human-immunodeficient either. I don’t want to be in this I.D. clinic reading Tiny Beautiful Things, a book of collected advice columns, a bible that replaced my bible, turning random...
What I Did Not Yet Know

What I Did Not Yet Know

When surgeons wheeled away my sister, her twenty-five-year-old body so tiny and wracked with illness that there was room for a second body on the gurney, I thought about throwing myself onto the bed next to her, remembered how doctors said, even before she was born, that her life would be short and painful, that...
Spoiler

Spoiler

 Endings to be useful must be inconclusive. —Samuel R. Delaney, The Straits of Messina I In the documentary short The Lion’s Mouth, Scottish actress and director Marianna Palka decides to get tested for Huntington’s disease. The condition runs in her family; it doesn’t walk. Doctors describe the disease as akin to having Alzheimer’s, Parkinson’s, and...
The Base Note

The Base Note

Every voice sounds a chord. Every voice has notes and layers, the way fragrances do: the top note, the one you notice first, is light, citrus; the middle note, the heart, is resonant like cinnamon, jasmine; and the base note leaves the lasting impression, a weighted blanket of sandalwood and vanilla. I experience my husband’s...
After the Appointment

After the Appointment

  I’ve dumped nearly everything from my car’s glove box—registration, flashlight, crusty hair ties—while I paw around for a tool to open a bottle of wine. This bottle of wine, the first screwtop I spotted in 7-11 and purchased in a rush. My hands aren’t strong enough for the feeble job of unscrewing (as if...
When the Uber Driver Asks, Do You Have Any Kids?

When the Uber Driver Asks, Do You Have Any Kids?

  and they always ask, the other me doesn’t say no. She doesn’t get the follow-up questions – Do you plan to, later? or, worse, Why not? Other Me doesn’t have to weigh whether to tell a lie, something easy, or to plunge into the sudden intimacy of the truth of life as a disabled...
Decade

Decade

I sit on the pool’s edge and watch my daughter swim. She dives underwater then surfaces beside me. “Momma,” she says, “I was trying to see how long I could hold my breath…what it would be like to drown but couldn’t. I popped up for air.” I kiss the top of her swim cap. “Your...
Future Care Instructions for Your Wife with Multiple Sclerosis

Future Care Instructions for Your Wife with Multiple Sclerosis

When I can no longer grasp the tweezers to pull at the fine, blond blades between my eyebrows, please look closely. Pluck them all—imagine them as the weeds in the garden we never got to, the sumac growing up through the rhododendron. The mole on my left cheek—if you see me run my fingers over...
The Old Phrases

The Old Phrases

Billie Holiday’s 1944 recording of “I’ll Be Seeing You” was the final transmission sent by NASA to the Opportunity rover on Mars when its mission ended on February 13, 2019. At the Center My father’s friend Harry, a man whose memory has perished before him, says, Are you from the neighborhood? Are you here to take me home?...
Remember?

Remember?

Slow processing speed. Major deficits in executive functioning and short-term memory. Normal left and right hippocampal volume with low left and right hippocampal occupancy. * Here is the translation: His broken handwriting, his stricken face, his blank or puzzled or fearful eyes. Doors and drawers standing open, lights left on wherever he goes. Two lamps...
Twenty Minutes

Twenty Minutes

Before I forget and too much time passes and the shape of the moment withers or disintegrates, or rests in the dull shadows of my brain, weakened in the space of night, only to show itself in the final days when I will remember everything before the nothing. Before I let myself think it was...
Defiant

Defiant

Your pulse beats, defiant, in the tender crook between thumb and forefinger. My gaze shifts between it and your face, your cheekbones prominent, your neck slack. The cardiologist tells you, “Your heart is very sick. You should start to have conversations about the end of life.” And I can feel you shrinking next to me....
Intro to BRCA1+ Quiz

Intro to BRCA1+ Quiz

1. When a woman reveals she’s been diagnosed with BRCA1 and is taking prophylactic measures, what percentage of people will say to her, “Well, at least you get a free boob job!”? a. 13%b. 38%c. 59%d. 90% 2. Define “lucky.” 3. Which term best describes what having as-of-this-moment-in-time healthy breasts, ovaries, uterus and fallopian tubes...