Marian Elaine Myers

I wish the internets had been big back in the '80s so there'd be an online record of Marian, my best friend in college. My first roommate away from home. My mentor in being a disabled girl out in the world.

She died 18 years ago today.

She was waiting for me when I arrived at the dorm with my mother and a breathless freshman naiveté. She was excited to meet me and become friends. She taught me how to ride the public buses with their brand new wheelchair lifts and ignorant drivers. She introduced me to crip culture. She was my best friend. She was hilarious and wise.

Her life had always been hard. She never knew her birth father, he'd left Marian's mother alone and in poverty. When Marian's juvenile rheumatoid arthritis became critically expensive, Michigan's child protective services took her away from her Mom and siblings and stuck her in foster care. Some homes were good, some were cruel. She spent time in hospitals and at Easter Seals camp. She almost died in a house fire once.

At 16, some kind neighbors apparently helped her just leave the unhappy home she was in and fly across the country to her mother, siblings and a new step-dad. Well, she always described it as a flight, an escape. She was emotionally intense. She'd learned early that you have to hold tight to the ones you love.

This dreamy blind guy once carried her up "A mountain" -- the very large rocky desert hillside bordering campus -- to watch an Arizona sunset. She was a semester away from getting her psychology degree when she died. She was going to counsel troubled teens. Someday she planned to have children. She'd already outlived all life-expectancy estimates, but she had big dreams.

She was generous and thoughtful. She entered the hospital on my 21st birthday and died there three weeks later on November 8, 1989. She left behind birthday presents she hadn't had a chance to give me, and already-wrapped Christmas presents for many people, anticipating the holidays.

She never lived to see implementation of the ADA.

I didn't take many pictures. I didn't know how little time we had. But this is Marian in our dorm room (my sophomore, her junior year) preparing to brave an Arizona monsoon rain (yes, she's sitting in front of that closet door). She's a short blond woman sitting in an Everest & Jennings motorized chair wearing one of those clear plastic "scarfs" over her hair and a white trash bag over her lap. The sink and closed door of our dorm room are behind her, with a life-sized poster of Patrick Swayze on the door.

And these last two photos were taken exactly one year before she entered the hospital. My 20th birthday. She gave me the stuffed purple dinosaur, Sam, and took me to dinner while other friends toilet-papered our room. We're with Anne, from that "pickle for three". In the first photo, Marian smiles at the camera. She's wearing a light blue tie-dyed t-shirt dress and holding my stuffed dinosaur, which has a toilet paper bow around it's neck. My bed behind her has a pink quilt and posters on the wall above it including one of Sting and one that says "Peace".

In the second photo, Anne, Marian and I sit at a restaurant table with glasses of wine and happy smiles. Anne is a tiny woman sitting in an Amigo scooter. I've got Veronica Lake hair and an embarrassingly large turquoise bolo necklace. I'm also drinking in a restaurant while underage because no one had the nerve to card a bunch of noisy women in wheelchairs.

I cannot believe it has been 18 years. I was so alone at college after she died that I nearly dropped out. For better and worse, my undergrad years were, emotionally, all about my friendship with Marian. Her joyful friendship, clingy intensity, illness, and the enduring grief.

She's so far away. So close. I often forget this anniver- sary. It was a sunny day when the painful vigil ended. My October birthday, her first day in the hospital and away from me forever, was the day I really lost her and the day I truly started to become an adult. This is pretty maudlin, but I haven't thought deeply about Marian for a while now, though she was clever enough that my family quotes her frequently. Even when I don't mention her name, she's a presence everywhere on this blog.

Flying rodents of unusual size

Last week, I described the pre-dinner events of my 20th birthday. And the banana balloon capture caper.

Dinner itself was fun too. Marian, Anne, Deb and I walked to the restaurant -- two scooters, a power wheelchair and one bi-ped skipping along to keep up. Traveling in a pack of wheelchairs over familiar sidewalk terrain is something of an art. The unspoken rule is that everyone paces themselves to the slowest chair (or the walker) but allows for speed changes and swerves around uneven pieces of pavement. In neighborhoods around campus where we were all familiar with the potholes and seizmic cracks in the sidewalks, a simple trip together somewhere sometimes felt like an intricate dance -- slowing, speeding, weaving sideways to avoid a crumbled edge of cement, zipping closer so we could keep up converation. We'd anticipate the sudden stop and lurch of each other's chairs to navigate smoothly. Well, mostly. There were collisions now and then.

I still didn't know where we were going for my surprise dinner, though briefly I expected it might be McDonald's because of the perverse humor of my friends. We ended up at Monty's in downtown Tempe. The main strip has changed a lot since those days, with many new restaurants beyond the means of the local students, but Monty's was one of the few fine-dining experiences within walking distance of the dorms back then, and I'd never been inside.

Possibly, the highlight of the evening was when Deb stepped up to the hostess and announced our arrival, then added "we'll just need one chair." Our little parade through the many rooms of the restaurant was fun, too. Oh, the expressions as we rolled by -- one, two chairs, three. The public spectacle of disability is always more fun when shared. To often it's experienced alone and feels alienating instead.

I had the famous barbeque ribs for dinner -- a splurge. And a bottle of wine, then Irish coffee with dessert. Yes, alcohol at a restaurant on my 20th birthday. I was the only one underage but sometimes gimpiness freaks servers out so much you don't get carded. There are perks now and then.

Anyway, dinner was delicious and I drove out of the place with a good buzz. We all did, which I suppose explains our detour under city hall on the way home. Tempe's city hall building is an impressive bit of architecture -- it's an inverted pyramid with large slabs of window covering the slanted sides. The "point" of the pyramid is underground and is reached by long fabulous ramps that go "WHEEEEEEE!" When drunk.

It was dark down there after-hours, which accentuated the sense of speed. Anne's scooter lacked the stiff automatic braking on slopes, and she shrieked with laughter. The buzz of our power chairs and voices echoed off locked office doors and through the leafy atrium under the building"s bulk. And there was another whirring screeching noise we couldn't identify as we raced up the ramp and plunged down it again. Deb leapt onto benches. More shrieking laughter. And that other whirring and shrieking.

'What is that?"

Marian gasped. "BATS!"

We'd disturbed their nighttime playground and they were swooping around us in the darkness. The echoing noise of our chairs frightened them, perhaps. Now we all shrieked in earnest, ducking instinctually, as we sped up the ramp and back into the sultry October night. As it turns out, scary bats are hilarious when you're drunk.

Back at the dorm, the room I shared with Marian had been toilet-papered extensively. I felt special. And that banana-shaped balloon was there for the upcoming adventure.

Radical Day of Fun

In preparation for my 20th birthday, my roommate and friend Marian warned me I was being taken out to dinner, so I should reserve that Saturday for mystery fun. Neither of us had any idea then that Marian would never get to wish me a happy 21st, so I'm doubly greatful my 20th was filled with such wacky fun.

Here's the conversation I had with Marian a couple days prior to the event:

Me: We're going out to dinner?

Marian: Mmm hmm.

Me: Where?

Marian: You don't get to know yet.

Me: Who's coming?

Marian: You, me, Anne and Deb.

Me: Is it a fancy place?

Marian: Ummm. Yup.

Me: Should I dress up?

Marian: I would.

Me: Should I wear hose?

Marian: God no! . . . Maybe when you get married.

***

When Saturday came, so had a package from my parents, and other friends came to hang out in the dorm room Marian and I shared while I opened that. This was the pre-party, and it was mellow but fun. It included the cake my parents arranged to be sent from a local bakery. Several people gave me toy or stuffed dinosaurs because of a misunderstanding that I was collecting them. The cutest ones remain with me as memories of those early years in college. Anne gave me a giant helium-filled banana-shaped balloon that said something about "bunches of fun."

Some days later the big banana's ribbon leash came loose and the balloon edged its way over to our oscillating fan. Afraid it would get sucked into the fan, Marian and I executed a rescue mission that sounds more like some bizarre drinking game, particularly since we decided on it while not entirely clothed. I forget what that part was all about.

Marian had a homemade "reacher" consisting of a dowel stick with an L-screw attached to one end. She skillfully used it to dress, run a washcloth over her face and dozens of other small tasks her juvenile rheumatoid arthritis made more difficult. Her stick was key to our banana-balloon rescue caper.

Here was the plan: If we turned the fan off, the balloon rose to the ceiling, completely out of our reach from our chairs. Turn the fan on and the big foil banana edged down behind the fan as though it might hurl itself into the whirling blades. One of us would drive up in front of the wind from the fan and bat the balloon downward and in front of the fan using Marian's stick. The challenge was then for that person to speedily reverse out of the way so the other could swoop in and reach for the balloon in the brief moment it dipped low enough to catch.

We were working with two electric wheelchairs (well, mine a scooter) and a dormroom floorspace of maybe ten-feet square, so half-naked, dowel-batting, chair-swooping and arm-lunging required teamwork and coordination not improved by giggling. I forget if we were sober or not, but in retrospect, probably not.

***

More on the birthday dinner itself tomorrow. I'm extending my radical fun through the weekend.

For other people's radical or drunken fun, check out the links at Sly Civilian.

Saturday Slumgullion #22 -- Best of 2006

This is the last slumgullion of 2006, and like Hugo Schwyzer, I've gathered a list of what I feel like are my best posts of the year. They aren't the ones that created the most discussion, by any means -- and in any case, whatever controversy I managed to create occurred when I crossposted over at Alas. The top five posts listed below seem to all be fairly personal accounts of my disability experience. Make what you will of the fact that I am proudest of them.

Also, go ahead and look over your own blogging of the past year and either leave a link to your "best of" list, or put the list in the comments here as part of my last slumgullion. Disability isn't a topic requirement.

August 13: Until every single penny is gone

September 4: The joys of impairment

September 25: "Is your life hard or super-hard?"

November 6: My déjà vu

December 7: Last year

Don't expect any original content on my blog here for at least a week.

Happy New Year!

My déjà vu

Wednesday, November 8, 1989 was a beautiful day in Tempe, AZ, with the sky a cloudless blue. I was up early, waiting at the front desk of Palo Verde East dorm at ASU for my friend Marian's step-father who was coming for all the boxes of Marian's things. He never showed. Around 8 a.m. Deb came instead to tell me personally that Marian was dead.

Deb looked good. Relieved. Over three years before, as the roommate before me, she'd promised to be at Marian's bedside if/when she died, and she'd been tirelessly attendant in the ICU for three weeks. She told me how it ended -- the gradual failure of organs and the mid-night final, peaceful slowing of her heart until it simply stopped. Deb smiled and said it was the most beautiful thing she'd ever seen.

Marian had been comatose for about ten days with a temperature of over 104 degrees. We'd known it was over. I'd spent that Halloween watching the macabre college partying all around me as I tried to absorb the fact that she would not be recovering. Before that, we'd known she would miss the rest of the school semester and a friend and I used nervous energy to pack up her belongings in the dorm.

I'd last seen Marian before the coma came. I'd ridden two buses with a friend, and we arrived as they called a Code Blue for her. A nurse found us shortly and asked for someone strong enough to calm and comfort her after the pain and fear of resuscitation. Nevermind strong, it was now or never, literally. We'd arrived during a rare break for her family and they weren't anywhere to be seen.

Marian's lips were blue around the intubation tube and her neck was not at the angle that juvenile rhumatoid arthritis had stiffened it to in her childhood. They'd probably had to break something in her neck to tilt her head back and insert the breathing tube. She was swollen from massive doses of predisone, and there was fear in her beautiful bloodshot blue eyes.

I held her hand, having no idea then what an incredible physical comfort that can be when frightened and unable to speak. And she was frantic to speak. There was an alphabet board -- another thing I was to learn about eventually too -- for communicating and she trembled as she pointed out the letters successively.

C. O. I. N.

She gestured to me and I ran through obvious possibilities, none of which satisfied her. Yes, C. O. I. N. but not "coin." She meant something more. She was insistent, emphatic. This was important to her to say. We couldn't communicate and I didn't know if her eloquent, brilliant mind was working clearly. She kept spelling out COIN and waving her arms at me while I tried to be calm and reassuring. I quizzed her. She didn't need anything. She wasn't trying to talk about money. This was something she wanted to tell me.

This continued until Deb and her family arrived, rushing in with alarm after hearing she'd stopped breathing. Nurses asked for someone in the crowd to clear the room and I reluctantly volunteered, not knowing then how slow her leaving us would be.

Now, I can imagine exactly how frustrated she must have been with me. I didn't let her "speak." I failed to solve this mystery. The very last thing she tried to say to me I didn't understand. And I left the room with it unresolved. She wasn't conscious after that day.

That was 17 years ago. One year ago I was hospitalized with desperate digestive problems and pneumonia from endless vomiting. Exhaustion on top of disease-weakened abdominal muscles made it difficult to breathe. Locally, they intubated me and sent a camera down my esophagus to see what was up, then I was flown by helicopter to St. Paul and expected surgery.

Heavily drugged, I only remember the helicopter lifting off, then no clarity of memory for about two days. But during that lack of clarity, I had a vivid, unforgettable experience. Through the blur of sedation, I was aware of medical people working over me. As they did various procedures on me, including installing a feeding tube to my stomach and jejunum, I experienced total, extended déjà vu. I anticipated and then experienced -- over and over again -- what was happening.

I don't have any clear memory of what specifically occurred, but I remember being shocked and even alarmed by this mystical déjà vu as it repeated itself relentlessly. It seemed to go on and on, and though I have no doubt the sedatives caused the experience it was still a mystical, even spiritual, event.

I woke up from the drug haze in a private ICU room that, ironically, had a thermostat problem causing a periodic hissing noise that truly sounded like Marian's trusty but dilapidated power wheelchair from long ago. The cycle of hissing-silence-hissing of the thermostat by the door sounded as though Marian was doggedly circling the ICU hallway outside my room.

I spent the next month lying in that bed spelling or writing out messages as Marian had tried to do. And it was then that it occurred to me with a certainty: Coincidence. Déjà vu.

Pickle for three, please

I met Marian the day I came to college in my week-old electric scooter, still learning how to drive it well. She was my assigned roommate in the residence hall and we were the first two female disabled students to ever room together at our university. With only a few accessible rooms, my freshman year was the first that there were enough women in wheelchairs to require two to a room to fit everyone in.

Campus housing had called me over the summer and asked if I was okay rooming with another disabled woman, apparently concerned if we'd have enough room to maneuver. I'd thought it was a stupid question -- if I wasn't okay with it, would they quick remodel another room before I arrived in two weeks? Also, the slim detail that my new roommate would also be using a wheelchair excited and startled me. I hadn't considered it before.

Marian and I were happy roommates and became close friends immediately. Our resident assistant turned out to be Anne, a disabled woman Marian had been tight with as a child at Easter Seals summer camp. Marian, pessimistic and wryly funny, and Anne, loudly hilarious and over-the-top, were a completely new experience for me. I hadn't had friends with disabilities -- let alone scooters or wheelchairs -- ever before. I revelled in the startling visual power we had when we went somewhere, lining up serially on a narrow sidewalk like a brief parade of fast go-cart Shriners or driving three (sometimes more) abreast across campus and talking and laughing like anyone else, but at our seated height.

Sophomore year, by arrangement, Marian and I shared a bathroom with Anne, and we often treated our two dorm rooms like a suite by keeping the bathroom doors open so the bathroom itself became a narrow hallway from one room to the other. While the bathroom -- just a toilet and an open area with grab bars for a shower and room for a shower chair -- was all tiled and slightly sloped to a central floor drain, there was an eight-inch ramp sloping an inch or two down outside either doorway (Anne's or ours) into the small sink/foyer area of each dorm room. The closets faced each bathroom door, so if you stood in our closet, you could look through the bathroom into Anne's closet, directly opposite.

Early one evening just after dinner, Marian and I were in our room. Marian was sitting in our small closet finding something and I was talking with her, my scooter parked in front of the closet doorway.


Anne came roaring through the bathroom into our room, laughing as she came down the little ramp. To our surprise, her Amigo scooter hit the side of my scooter and her front bumper lifted to rest on the platform of my scooter by my feet. The front wheel of her front-wheel drive was lifted off the floor.

So. Marian was trapped in the closet. I was parked in front of the closed door to the hallway, and Anne's scooter was hung up on mine. We all used our chairs full-time, so none of us was able to get out and push. We sat there surprised that three mobile adults could immobilize themselves without any of our chairs breaking down.

This was before cell phones, so we giggled when the phone rang and our answering machine clicked on. We contemplated what exactly we would shout if we decided to holler for help. Then we jokingly began conversations none of us wanted to hear and required a captive audience.

"Have you been saved by the Lord?"

"Let me tell you about my essay on Moby Dick."

"You know, my husband had a stroke recently and now he needs a wheelchair too...."

We nearly laughed ourselves sick before I managed to move my scooter back and forth enough to dislodge Anne's. It was a bit of a disappointment to be free. Suddenly the room was accessible to all of us again and we were a little less bound in common camaraderie.

It was one of the silliest, funniest moments of my life, though it doesn't translate well for the larger world. It's a crip thing, and probably rare at that. It's an example of what makes living with a particular disability a unique cultural experience. One I would never have found at home with my family.