My sister rocks a 90s scrunchie like no one’s business and still loves The Lost Boys, her knock-off Crocs and silk shirts. She cannot rock adult conversation, the processing of complicated information, or general emotions. She is retarded, if you prefer that horrid little word. She is disabled, challenged, slow like dial-up. You hear the connection trying to start, you know eventually the connection will start, but in the meantime you’re sitting there sighing loudly in frustration, waiting because this has been your whole life, waiting for Sandy to get something. And sometimes when the connection happens, you get a happy story about the wedding she wants to have at Disneyworld, the bakery shop she wants to open in downtown Phoenix and all the free cookies she’ll give her family, or sometimes you stories about her bullies in high school, her sadness hiding under irrational anger that involves swearing at people under her breath, stalking around, crying in the corner, locking herself in the bathroom because she is different and doesn’t quite understand how she is supposed to fit into the world.
She goes through periods where she loses her hygiene. Sandy, are you wearing deodorant? Sandy, when you shower, are you washing yourself? Sandy, you can’t wear a maxi pad every day because you’ll get another urinary tract infection. She will get angry. Snap at you. Yes, she says to all of the above, but you know she’s lying, and she knows she’s lying, and she knows you know she’s lying and a weird, bickering argument ensues about being a grow-up but she’s not really a grown-up.
She goes through periods where she is sunny, warm, loving. She wants to help, hug, contribute, shop, buy new hats, share movies, tell you she loves you, joke around. She laughs the way little kids laugh, at everything, at random things, and the sound is like innocence.
Her blood is wrong. It has gathered in bunches, collected in her lungs, and tried to stop her heart. ICU is a quiet, cold, dark cave and my sister is hooked up to machines. I told my mom we needed to call my dad. They have been divorced for 23 years, but sometimes it’s like yesterday.
“So he can sit in the corner and pray on his rosary? Like he did when you had your ingrown toenails removed when you were 12?” My mom drank coffee and looked like she wanted to give up.
“I’ll call if you won’t,” I said. She tossed her coffee and stepped away make the call.
A tech with a machine entered the room. She was middle-aged, blonde, the kind of blonde people hang on to longer than they should. She said she was going to perform an ultrasound on my sister’s heart. Part of me wanted to ask her to do an ultrasound on my heart. I mean, since we were all there. You know, kill two with one stone. I’m a hypochondriac.
“Are you usually very pale?” he asked my sister.
With a lifetime of habit, both my mom and I stepped forward to answer for her.
“She is not usually this pale, no,” my mom said.
The doctor looked at me. “You’re a bit pale.”
“I try to stay out of the sun. Bad for the skin,” I said.
I approached my sister while my mom discussed my sister’s disability with the doctor. Do not give information directly to Sandy. Do not communicate medical information without mother or sister in the room.
“He thinks you look like a vampire,” I told her, “because you don’t have any color in your face.”
This brightened her for a moment. She loves anything to do with vampires. Twilight is the answer to her prayers. Team The Wolf Taylor-Something-With-the-Nice-Chest.
My sister pursed her lips, a tell. She was thinking about something complicated.
Finally, she put her hand on her heart and looked at me with confusion and terror. “Am I going to have another heart attack?”
Doctors and nurses swarmed. Cardiologists. Internists. Day nurses to night nurses. We were told she must have emergency treatment, a drug, TPA. It’s a clot buster, like a door buster. The clot near her heart is hanging, desperate to break off, desperate to run free. TPA will be awesome. It will save her life. It might give her an internal bleed somewhere, but that’s rare. Rare side effects are for commercials and specials on TLC.
“She will be dead by the morning,” everyone in scrubs reported to us.
My mom, shorter than me by about a foot, clung to my arm and sobbed and sobbed and I stood there with my arms crossed and sobbed and sobbed and then nodded when asked if we understood what was happening. My mom signed paperwork giving consent.
My dad arrived. The three of us stood in the waiting room of the ICU, a hot white box filled with worn faces and quiet despair. If you were a passerby, you’d think we were a nice family standing together but none of us reached out for the other. My dad let his lip quiver. My mom had nothing left. I stood between them.
It was July. 117 degrees. I stood in the hot sun and made phone calls to my husband, my relatives. I told my husband not to come because I wanted him to check on the animals and he’d hit too much traffic, but really I was beginning to realize his presence was work not comfort and my marriage was in the beginning stages of failing. My aunt told me to keep her posted and to have my dad call her. I promised. She told me I was a good sister.
This one Saturday, my friend and I took my sister to Jerome because I thought she’d like the shopping. Jerome has weird things to buy. My sister loves weird things. She twisted her ankle coming down some stairs and because she tends to be dramatic, she stopped and got super worked up and limped and held her shoe like it didn’t have a home. I told her to walk it off. She limped and grimaced and complained and each time she made any sort of noise of dissent, my frustration and anger racheted up a level. I walked ten feet in front of her because I was angry and I thought if I ignored her, the problem of her ankle might disappear because no one was feeding into her pain. In one of the stores, a sales person, a stranger, asked my sister if she was ok, and she said she twisted her ankle, so the woman got her an ice pack and let her sit. The sales woman said, “Your friend really hurt her ankle.”
“She isn’t my friend, she’s my sister,” I said. “And she’s fine.”
You’re fine, I say to my sister all the time. You’re fine. You’re normal. Be normal. Please be normal.
If you’ve never had the pleasure of watching someone with hemorrhaging in their brain, know you’re missing out. Know that they have a massive and unstoppable headache. Know they will be speaking to you and their eyes will roll back and they will pass out in the middle of a word. Know their blood pressure will rise and nurses will rush in and put chemicals in the IVs and drop buzz words like “stroke”. Know the doctors around do not expect a brain bleed and will just up pain meds and call it a bad headache until you push for investigation. Know that getting a phone call the minute you came home from the hospital where you believed your sister was recovering because the clot buster worked only to hear she’s being helicoptered to the Neuro ICU at the hospital in central Phoenix takes a few hours off your own life.
Vague clouds were smeared along the sky like a painter planned to come back and fill them in later. The sun was behind the smears, the universe was behind the sun, and God was behind the universe doing what He does and my Catholic upbringing still prevents me from using a lowercase he when referring to Him. My sister’s eulogy might start here. God in the clouds. God in the sky. God bringing cloud cover to block the heat for a moment. I’d speak to the crowd about who my sister was outside of her disability: a loving, caring young woman who didn’t understand her own self, who had a sister who didn’t know how to understand her either. Do not reach out to the baby crying in Target, whose mother is nearby, whose mother doesn’t understand why a strange woman is touching her baby. My sister loves babies. She is gentle with them, speaking to them slowly, calmly, lovingly. She does not like to hear babies in pain. “It’s heartbreaking when they cry,” she says.
I am a sheepdog always herding my sister. Away from the woman in Target. Away from groups of people she’s monopolized with stories about her tattoo of the cupcake and crossbones or joining the Army or running a bakery and giving everyone donuts or any other number of things that are never going to happen, all things that make her sound nuts. Talk to me, I say. I sit her down and she looks past me at the public she so desperately craves, and I refocus her and ask her to give me all the details because I do not judge her except all the times that I do. My eulogy became a selfish psychoanalytic rant about my own issues.
The reason for the clots? Genetics. Life. Bad luck. She’d had emergency gallbladder surgery the month before she collapsed from the pulmonary embolism. She was taking birth control pills to corral difficult menstrual cycles. Her hematologist discovered a gene mutation, Factor V Leiden, and it fucked up the miracle of the clotting process. What should have been bleed, clot, move on became sustain an injury, begin chemical process to stop bleeding, stop bleeding, feel like since the clotting is going so well, keep clotting. You get a clot, and you get a clot, and you get a clot.
The brain bleed happened because rare side effects are real. The bleed started and stopped like some odd April rain shower where one side of the street is sunny and the other dark. While they were investigating the bleed, one of Sandy’s neurologists went into a heady explanation about the brain and veins and crossings and patterns and waves and said this brain bleed could have been a long time coming, could have been some long-standing issue we never knew until now. My mom took this in, nodding, saying “ok, mmm,” in all the right places then asked, “So it could just be a wiring issue? Could the reason behind the bleed be a reason for her disability?”
After 32 years, my mom still holds out for an answer.
“We don’t know,” he said. “It’s impossible to know. It just happened this way.”
My sister clings to men. Her male relatives. Cousins. Uncles. She will perch alongside them, cradle their arm, rub their forearm, and smile like she has been seated at the head table. When my mom herds Sandy away, I tell her to let Sandy be Sandy. When I am by myself, I become a hypocrite and try to steer her away before anyone judges. I feel I need to go behind her and sweep up, tell everyone about her. I try to do this nicely, so she doesn’t see. I try to hide my embarrassment.
I do not cling. I make it clear I am not like her. I hang back, usually comfort myself with a drink binge at a big gathering, make myself sick sometimes because I stress about who she’s talking to, what she’s saying, and what people think of my mom/me/my dad/my family because of it or whether or not something will set her off and she’ll up in tears or in anger and I’m the one who has to calm her down.
“I want to get married.” “I want to have children.” She will not have these things, at least not the way she imagines them to be.
I command her to go, come, sit, stay, like she’s not her own person. I accept her disability on my schedule. On our own, we watched every Harry Potter movie in the theater. We love pedicures. We go shopping so she can re-up Twilight calendars, products, magazines.
She remembers lines from cartoons from when we were kids but struggles to work with anything over twenty dollars. She reminds me of the Beatles songs we used to sing while holding hands, running across the grass but can get flustered when someone asks how she’s doing. She loves her birthday. She loves being a sister.