I Know Astronauts
Petra Perkins | Non-Fiction Award Winner
12/12/2013: I’ve been a mother and a skier for over four decades. At first I had beginner’s luck, no injuries. Later, as a “terminal intermediate” – what my daughter, Sue, labeled my skiing, yet could describe my mothering, too – I’d struggled. Although somehow, in the midst of divorce and debt, in the aftermath of family deaths and despair, I’d managed to move forward most of those years. The last decade, however, not so good. Maybe (I considered briefly), I could use one of those old, ubiquitous religions, straight and long on faith, and a pair of those short, curvy modern skis. I hear they help you manage the icy/dicey downhill slides, or at least get you through Christmas.
I drive to Sue’s Medicaid nursing home for my second visit of her two-week stay. Her husband needs a break – not in January, but now, he insists – so that’s why she’s here. Holidays are Sue’s favorite time of year when she tackles her boxes of treasures to decorate their home and tree. December is when she can count on a few visitors, festooned in seasonal warmth and probable White Christmas magic. Never has Sue been alone during the holidays. I have neither the skills nor the accommodations to care for her.
For now her home is the nursing home. She calls it “The Inn”. I laugh to make her smile and say, The Holiday Inn ? In the hallway there are cages of red-and-green chattering parrots.
The nursing home staff calls her Ms. Sue, but they don’t get the irony. Ms., M.S. – Multiple Sclerosis – and that’s what she has, what she’s had for fifteen years, since she was thirty.
It takes an hour to get here from the foothills near Denver. Today, no snow. At the front door I’m welcomed by an urn of fresh cigarette butts. A wave of sharp disinfectant smacks me in the face. I cover my nose, past the Christmas tree, the 1950s Santa-and-elf display, around the residents, seemingly comatose in wheelchairs, to Room 120. It’s empty but the TV is blaring. A table is set up with her ‘cropping’ equipment and family photos spread around. It’s the only hobby she can do: cut out pictures and arrange them in albums. Sue’s hands don’t work well, operating at a glacial pace, but she’s managed to produce two dozen photo albums. Her cognitive abilities, unfortunately, are a train wreck. Sometimes she seems like a child, but most often like a mature woman who can’t remember much about the young woman she’d been. I wonder if photographs remind her, somewhere in the recesses of her damaged myelin sheath, of the vibrant, engaged, creative daughter I knew… wife, mother, sister, aunt… skier, lover, doer, business owner, entrepreneur. One who ran her life masterfully like an air traffic controller masters the sky, she became an invalid who can barely walk, talk, reason, or function alone. Her smile is usually wan but, if persuaded, it can still light up a room.
The day before, I’d asked a nurse if she would set up a work table for Sue, not really believing it would happen, even though there’s an odd wall sign in Sue’s room that says “BELIEVE”. But wow, kudos to nurses, here it is, and it’s big. There is even a lamp on it. This seems like a miracle and we can certainly use one today. I’m not big on miracles and wasn’t exactly holding my breath, but I am now, because it’s starting to smell in here.
I peek in her bathroom to find that no one has cleaned it recently so I give it a spray and a wipe. The cruelty of M.S. caused Sue the necessity of a permanent catheter, and sometimes there are problems. I plug my phone charger in the bathroom wall, the only outlet I can find. My soda can from two days ago is still sitting on the dresser. I lie down in her bed to see how it feels because she’d said it was too hard for even rocks to sleep on. Her sarcasm, our family trait, is how we intercept tragedy. I agree – it’s not a mattress I could endure for an hour, much less a fortnight of nights. I consider how I could rent a bed and get it in here.
I find her at the computer workstation in the Bingo room. I already know it’s a dinosaur after trying it myself. She is struggling and slamming down the mouse and yelling her favorite word: Asshole. Please stop saying that wretched word, I begged the girl all her adult life. Before she was an M.S. patient, Sue had her own medical transcription business and was among the most patient of computer users – not – but now she has no sense of waiting while the CPU cranks away at its own glacial pace. The “asshole” is as slow as a 1990s dial-up. It may be a dial-up. I say, Let’s go down to the lobby. I say, I think your tablet will work there – better signal strength. With my phone, I’d already checked on the wireless connection. “Good Strength” it said as I’d stood near the front desk. We walk back to her room to retrieve her tablet, the one I’d given her two Christmases ago. In Room 120 it says “Poor Strength” and wouldn’t send an email, not even to Bill Gates. I met him once – a generous philanthropist. He’s committed billions of his foundation’s dollars to fighting malaria. Of course, malaria is a worthy cause, but I want him to cure M.S., too. Malaria is a scourge nearer the equator and its cause and possible cures are known; Multiple Sclerosis is prevalent in northern latitudes, highest incidence in Denver, Seattle, and the British Isles, with unknown cause, no cure, and decades-long deterioration for many sufferers. I think how Mr. MS-DOS might listen if I would write him.
Sue slumps onto the hard bed, wincing. Her head hurts most of the time, frustrating her pain doctor who has tried every drug and is now into combinations. When I imagine having a chronic, severe headache, every day for years, I see myself heading to the top of a building with a surmountable guardrail.
I give Sue an ice pack and watch TV, a football pre-game show, while waiting for her to recover. I realize there is an impending Bronco game, just a couple of miles from here – traffic driving home will be a nightmare. I’ve barely arrived and already I want to hurry up and leave. C’mon, let’s go to the lobby, I say. She gets her cane, I guide her, we shuffle like slow turtles down the hallway, negotiating part of the narrowness with oldsters in wheelchairs who have claimed the center. They stare at Sue because she is so young and pretty. Hello, Ms. Sue.
Finally we arrive at a cold leather couch in front of the sparkling tree. This Christmas tree, with its intermittent twinkling, is a revolving one and has fake presents underneath. I watch it go around, around, on/off, on/off, until I am hypnotized. I think of “revolving” credit accounts, the ones almost charged to the max, allowing few real presents under my own fake tree. Thank God for credit. Can’t we find a cure for M.S. on credit? These M.S. Walks just aren’t making it.
Sue begins to cry as soon as we flop together onto the couch. Sinking down with me, her mom, gives her permission to release. I’m surprised she’s held it back this long. She is crying so loudly that I know people can hear but I don’t care. I don’t cry but hold her tight so her sobs go into my chest. She is holding the ice pack on her head. She is wearing a Bronco shirt. Her hair sticks up in back. I smooth it and say, Let’s see if your tablet works here. I find the account name: “Guest”; I enter the password: “HappyFamily”. It says “Good Strength”. I say “We’re strong, Sue!” She looks at me, puzzled. Then my light bulb goes on. I realize Sue will never remember to come to the lobby for Good Strength. She will not know to look for the Guest account; she will certainly never remember the HappyFamily password; she will not be able to receive or send email unless I am here because it’s unlikely she will think to ask for help; I can only make this trip to the nursing home every two days. I wonder what she will do. She will go crazy without email, that’s what she’ll do.
I say, Look, Sue, you’ve got mail! I say it in the AOL jolly voice. She chuckles and her tear-stained dimple pops out. Sue’s short-term memory is severely impaired so she uses email to keep track of her life. She sits and scrolls the screen with her head down low because her vision is poor and uncorrectable. I ask if she wants coffee. She says Yes, thank you thank you. She always says Thank You twice and she says it every time someone has to get her something. Sue says Thank You Thank You about a zillion times a day.
I know she has written me eleven emails, before I got here, imploring me to bring her a latte (she’s a coffee addict) because they all just downloaded onto my phone which is beeping with the words: “Please bring latte” or “Tall latte?” Another, written yesterday, says: “I am in hell”.
I go to the cafeteria through the hallway that now smells like poop. Every room seems to be suspect. I hold my nose. At the coffee machine I try to fill a cup which dribbles one big foamy blob before I realize the urn is empty. The liquid drips from the Styrofoam cup because it is a brand that is super-cheap and thin. I stack three cups together and make lukewarm tea.
My throat closes up before I get back to the lobby due to a stench of cigarette smoke. There are No Smoking signs everywhere but smoke is infiltrating the building. You don’t have to be a rocket scientist (which I was before the “economic downturn”) to realize that someone inside, or just outside, is smoking… a lot. I get back to Sue, delivering tea instead of coffee. She shrugs it off. I hate to disappoint her on such a small thing because small things are all she has.
When we first arrived in the lobby, I’d seen a fortyish woman, seated, staring at a TV’s continuous replay of flowing scenes of nature, accompanied by soothing music. The woman seems not to have flicked even a muscle. It’s hard to tell which is straighter, her or her straight-back chair. I watch, I don’t blink, waiting for her to blink, to move, to shift, but she doesn’t.
Sue is engrossed in her Facebook page. I say, Would you like me to take your photo by the tree and we can post it on FB? She smiles and pats her black hair. She hobbles over to the colorful candy-caned revolving tree and places her walking cane on the floor. She stands there and mugs offhandedly for the camera. I take at least a dozen shots because I can’t quite get her special smile. Finally I say… Sue, say ‘asshole’! She grins like a pixie and I get the shot.
An elderly woman and a handicapped man are now in the corner on another couch. The woman is reciting Bible verses and the man periodically shouts “Amen, sister!” or “Glory to Jesus!” I cradle my arm around Sue as she closes her eyes and leans her head-with-ice-bag on my neck. I watch the other woman, still not moving. She is locked onto the TV like it is the Olympics with her team tied, maybe one minute left to play. Such rapt concentration. You should come here to watch TV sometimes, I suggest to Sue… like that lady… I point to the Olympian. See, she’s focusing, to help herself relax. “No,” says Sue in her halting, spurting stutter… “S, sh, she she’s… g g g get getting… st st st st st str str str… strong.”
I try to zone out and doze a little but the smell of smoke continues to irritate my throat. I cough; I dab my burning eyes. I check to see if anyone else is coughing. The couple reading the Bible seems okay, but the man has an oxygen machine and the woman is now praying breathless Hail Marys to her rosary. Sue is fixated on her email. I worry that the TV-watching woman may be catatonic. I look for the smokers so I can ask them to stop, but they are well hidden.
We journey back to Sue’s room where I can finally breathe. There is an air purifier that I gave her for a different nursing home visit three years ago. That was the bottom-ofthe-barrel Medicaid warehouse. A friend of mine calls them warehouses and I see his point. Residents are packed two-by-two in tiny rooms to deal with each other’s odors and grief. Showers are every third day. But this time Sue lucked out with a ‘private room’ – The Waldorf. And she has a shower every two days. (Kudos to the Nursing Home God.) Her prior roommates were: 1) a 90-year-old bedridden with cancer; 2) a blind woman who was nice but couldn’t abide Sue’s crying and asked to be moved; 3) a woman Sue’s age, permanently and completely paralyzed from M.S., needing to be fed, diapered, and turned and who talked incessantly about wanting to die. She had a steady parade of visitors who tried to talk her out of it. I studied them. I wondered which one she would persuade to bring the Kool-aid, which one would consent to be her Angel of Death.
***
It’s getting dark outside. The Moon is waxing – I just read that the Chinese shot their biggest firecracker rocket ever, got lucky and landed on it. I think the silly thought that it’s our moon, not the Chinese’s. Isn’t our flag there? Can we charge rent to pay off our Chinese debt ? I know the traffic jams are converging on the Thursday homegame with San Diego. Broncos are on a winning streak and favored. Prophets and fortunetellers are coming out of the woodwork with visions of playoff victories leading to Super Bowl, assured in their belief that the ultimate game is ours to lose. They beseech the Football God who must obviously choose Denver’s side. Every street and highway will be gridlocked, I’m sure, so I tell Sue I need to leave now. She understands – not – but lets me go. I give her a hug and zoom out the door. On my way down the hall, the suited night supervisor yells, “SMILE!” I feel like stopping in my tracks and give this spring chicken some facts of life. Lady, would you be smiling if your daughter were in a nursing home? I am incensed but I yield to the need to get through the smoke. I hurry past their revolving tree and bang my body against the front door handle to open it. I can’t get out of here fast enough and shove it with all my wrath. Thud! A thudding sound – me, against the immovable glass door. The bar pushes in but doesn’t open. I jab at it repeatedly like a lunatic until I realize I am indeed an inmate unless someone lets me out. I immediately think of fire. And these helpless people who can’t escape because they’re locked in. I find the supervisor in her office. I take brave advantage of this moment to tell her that Sue had a cold shower this morning – no hot water – and, by the way, I can’t breathe because of the smoke. She seems to believe me about the cold shower but looks skeptical about any smoke. Obviously, her eyes and throat are not burning. She’s probably used to it. And where, she asks, is the smoke? Right here in your lobby, I wave into the room, speaking with a short-tempered rasp. Someone is definitely smoking nearby but we see no one. She tells me she “will report it” and I don’t believe her. She opens the front door for me. I don’t even look back when I hear her again, “SMILE!”
I jump into the car, jam it into reverse, bolt from the parking lot like a demon and speed toward Colfax Avenue. I zip past a liquor store, and then another and another. I start to obsess about Bailey’s crème liqueur to soothe my aching throat and once I get an idea in my head…. But the traffic is already at a near standstill and I don’t want to lose my place. Slowly I drive, stop-and-go, about ten blocks, switching on the radio, tuning 850 KOA to the football game. I fumble for my phone to put it on the car charger and realize with horror – I’d left it in Sue’s bathroom. Shit! Bad karma (for ignoring cheery supervisor’s concerns about me not smiling). I know what I must do right this second. I need my phone. I grit my teeth. I swerve in an illegal U-turn and head back where traffic is even worse. It’s now inching toward Mile High Stadium at the mean acceleration rate of one mile per hour and I am stuck like a dead rocket on the pad.
I know no back-street detour so I stay in traffic, driving past liquor stores, one on every block. Each store calls me to “get Bailey’s, get Bailey’s,” which I know would go down like local anesthesia in my throat, in my veins. I listen to the sports announcer predict optimistically that, after tonight’s “likely win,” Denver will play Seattle in the Super Bowl – if Seattle’s magic dee-fense remains unstoppable in the playoffs. My mind wanders to Seattle, when I lived and worked there, when Sue came to visit and was amazed to find a Starbucks on every block, sometimes two. We visited several for our caffeine fixes. Pacific Northwest rain was unstoppable during her stay, thick sweeping clouds weeping their guts out. Propelled by coffee highs, we giggled, planned dinners, boat trips, and the rest of our lives. I recall how Sue flirted shamelessly with a handsome waiter one humid evening at the waterfront restaurant. The young man was stunned, then paralyzed, eating it up and ignoring his other patrons. What will you do if you catch him, Sue? Is he a fish in the ocean? I inquired. Are you going to throw him back or take him home and eat him for breakfast? She feigned shock, bursting into blush like she’d always done, brushing back her Cleopatra hair behind tiny regal ears. Maybe, I consider, she really never knew the effect her wild lapis eyes had on men. Ha-ha. Not. Silly me.
An hour later I am back at the nursing home and amazed to find a group of bright, gaily-dressed carolers in the smoky lobby. I stop, dumbfounded. “I’m dreeeeaming of a whiiiite Christmas,” they croon to the group of polite black employees. I wave to the supervisor who now comes on like Nurse Ratched. And what is your name again? she asks with raised eyebrows. What do you need ? Hmmm. If I had the time – all night, say – I’d ratchet down the list. Sue’s mom, remember? I say, explaining, skipping away. Forgot my phone. How could she forget me? I dodge wheelchairs, skid past silenced parrots, race through the poop palace, scarf covering nose. I find Sue in her suite eating the milk chocolate nut bar I’d brought. There is no smell of dinners being delivered; no aroma of food anywhere. It is six o’clock so I must muster courage to abandon her, again. It helps that she’s the braver. Sue, the Brave. She is the bravest person I know. In the entire world, and that counts space. I know astronauts.
I hug her quick and rush out an unlocked side door, surprising five or six nurses and aides smoking by the building. The door has been propped open with a medical file that drops to the ground. Papers fly everywhere. That could be Sue’s file, I decide, with her complicated array and amount of drugs specified per hour. I circle back and inform Nurse Ratched. Her hackles go up and she marches outside to discipline the troops. I duck into a restroom where I hear the carolers: “O, Christmas Tree, O, Christmas Tree”. Strange how music invokes memories. It happens that Sue performed this carol for show-and-tell, first grade, Dutch Creek Elementary. She wouldn’t sing Santa songs or Jesus songs, but she liked this one and practiced it days and evenings, about a gazillion times. I swore I would never listen to it again and here it is. Karma.
When I emerge, the women are filing past, reeking of smoke. They glare at me murderously and I am afraid. I wonder how bad they will take this out on Sue. But I know if they fix the smoke problem, I can eat dinner with her next time.
I balance myself skating on ice in the dark parking lot and leap into my car, locking it. This is a scary part of town, Colfax. Drifters, dopers, drunks. I am shaking. I am launched into the night once more and steer my 1990s car to the front of a 7-Eleven next to a liquor store. I think I’m hungry but no way can I eat. I see a flashing Mega Millions sign that says $400 Million. I stand in a line of down-and-outers to buy a ticket. I passed Probabilities & Statistics. I know chances of winning are less than a successful rocket launch to Mars by North Korea, but still I risk it. I go in and buy it. I ask if the drawing is tonight. Two hopefuls answer one after another: Tomorrow! Tomorrow! I think of “Annie” – tomorrow, tomorrow, there’s always… to-mor-row. It’s only a day a-waay. I take the ticket to the car, switch on a light to see if the numbers look magical. I pray to the Lottery God to win so I can kidnap Sue from the warehouse. I have visions of a shiny, private-care wing in a respite resort, with hot-and-cold running nurses and bouquets of holiday flowers and fragrant Christmas trees in every room and lovely bars of lavender soap and diaphanous curtains and socially-conscious belled carols wafting softly on angel wings throughout the wing named for Ms. Sue who is smiling and getting a pedicure while sipping on her latte.
I have to have a Bailey’s. I decide to get one of those miniature bottles, planning to gulp it fast in the 7-Eleven lot with my door locked. In the dank liquor store, people loiter behind shelves. I choke on the rankness of booze, cigarettes, smelly clothes. I have on my French perfume and my antique hand-knitted scarf and my oldie-butgoodie purple puffy ski jacket. My hair still looks slightly sleek from a holiday party last night. My jacket still has the Breckenridge lift ticket attached to its zipper from years ago. I can never bear to cut it off, every year pretending I am still a skier. I’d been a slow, kind of wary skier. Sue had been fast and fearless. She would orbit me on skis – first in front, then disappearing into pine trees, cackling, then gliding behind me, telling me which path to take – as I cautiously traversed mountain swaths with this sparky girl, my personal reconnaissance satellite for the mothership.
The bottle seems light. This bottle has been opened, I say, in shock to the cashier. He examines it like it is definitely the most bizarre and unexplainable thing he’s ever seen in his entire life. “Well, I guess it is, sweetheart.” He pulls out another from behind the register, examines it. “It’s been opened, too,” he says, hmmming. People line up behind me. I cover my nose. Just give me that one right there, I say, pointing to a medium-sized bottle. I pay 16 dollars, leave the change clanging, and run like hell to the car. I stuff the Mega Millions ticket into a pocket, slam the gearshift into ‘R” and screech toward the street as if muggers are in close pursuit.
On my way again through traffic I try to open the bottle to assuage a throat which now feels like a hatchet. Red light after red light, I claw and fail to remove the foil from the bottle top. I stop trying on green lights. Exasperated, I pull out of the lane and stomp on brakes in an empty church lot. I rummage in my purse for fingernail scissors to slice off the metal top like a deranged addict, maybe one of those I just left, who can’t wait. It won’t cut so I try a pen. I try the scissors again. I start to cry, wail, beat the steering wheel. I scream, Asshole!
Finally it comes off. I slug down three or four swallows. I look at the sign in front of me: “Mother of God Catholic Church”. Mother of God? Yes, Mother of God, and what kind of mother are you, anyway? I’m not the Shirley MacLaine mother in “Terms of Endearment” who screams orders at nurses to “give my daughter the medicine NOW!” I’m not the Ellen Burstyn mother in “The Exorcist” who stares down the Devil, at risk of her own life, to exorcise evil spirits from her daughter. I’m not a Mother Teresa who trusts God will heal the sick, care for the poor, while persuading the rich to finance her faith. I am the mother who trusts that food will arrive on a Medicaid cart by 7 p.m.; therefore, she doesn’t drive straightaway to the nearest McDonald’s to buy a cheeseburger-fries-chocolatemilkshake-to-go, which would smell and taste like heaven to the severely stricken daughter of this sorry terminal intermediate, who will have to settle for red or green Jell-o and applesauce, chalky-tasting mashed potatoes with a puny slice of meatloaf, if she’s lucky, that is. This is a mother who writes but hasn’t yet written to Bill Gates, or Warren Buffet, or the Clinton Global Initiative, or J.K. Rowling (who has more money than the Queen) and explained the case that there is no respite home for M.S. patients who are mostly young, in the whole United States of America, though England and France have them.
Michele Obama’s beloved father died from M.S. My step-father’s first wife died from M.S. My daughter-in-law’s first husband died of M.S. in his 30s. A co-worker, an Olympic-trained fencer, died of M.S. My grandfather, my actual blood grandfather I never met, shot what was left of his brains out at age 60, after a year of not being able to feed himself, after thirty years of M.S. Everyone I know knows someone who has M.S. Last year I wrote to Mrs. Obama to ask if she or her mother could help the cause and, amazingly, she wrote back. She gave her best advice: “Start at the grass roots level” to build community support. So I wrote the Osmond Family (Donny & Marie’s) as they have three cases of M.S. I wrote to Anne Romney who has M.S. (instead of writing Mitt, as he admitted he’s not a community organizer). I wrote to Larry King whose best friend has M.S. I wrote to Terri Garr and said I loved your movies and I’m sorry you have M.S. I wrote to Montel Williams who fights M.S. like an angry warrior. I know I’ll keep on writing because it seems, since we’re all in this mess together, we should somehow connect our energies. About ten football stadiums full of people – about half a million in the U.S. – have M.S. And because they have M.S., their families have M.S. We’re all part of the game, so it’s millions. I try to imagine the unimaginable power of such a connection.
I ease back into traffic. Boom ditty boom ditty boom from maxed-out speakers. Horns blasting. I brake for those who run from shadows, banging my fender. Just one more sip. Next light, just one more sip. Next light, one more sip. I see the moon, big on the horizon. Tomorrow it will be ours.
The Bailey’s is half gone when I arrive. I hold the steering wheel tight like I’m still under siege but I am safe, safe at home in suburbia. In the garage I suck down the rest. Finally, my throat is numb, as am I. Inside the house smells like coffee beans and bay candles. I see the Christmas tree is on; the TV is on; the Broncos are off – offsides and behind. Will they make it to Super Bowl with those severe injuries? It seems my chances of winning the lottery are greater. I collapse in a heap with my jacket still on. I feel like a quarterback who gets sacked time and again, trying to move the ball forward. They’ll need to develop some thrust pretty damn fast to win this ballgame. Dee-fense, dee-fense the crowd roars. My phone beeps. It’s an email, from Sue.
I hold my breath as I read: “MOM thank you thank you”.
Hard to believe.
I decide. Tomorrow I’ll kidnap Sue from the Inn, take her for a double-tall eggnog latte. We’ll get a real Christmas tree for Room 120. We’ll decorate it with ornaments copped from the lobby, candy wrappers turned into silver birds, goofy drawings flicked with glitter, family photos cut in circles, and I’ll invite everyone I see to put a gift under it for my little girl who doesn’t believe in Santa Claus or Jesus Christ or Bill Gates, or really anyone, strongly, except herself.
***