WOMEN AMONG US: TERRY GALLOWAY

Terry L. Galloway is a deaf writer (poetry, essays, memoir, and plays), director, dramaturg, and performance artist who has an international reputation for scandalous humor combined with incisive insight. Her latest memoir, Mean Little Deaf Queer, has been described as "Running with Scissors meets The Liar's Club" and has just been published by Beacon Press. At this moment Terry is in London doing readings, but will soon return to the U.S. to continue her book tour in many cities.

She's the founder of Actual Lives theater troupe (for disabled adults), cofounder of the Mickee Faust Alternative Performance Club in Tallahassee, Florida, one of the founders of Esther's Follies in Austin, Texas, and a celebrated alumnus of Shakespeare at Winedale. From cabaret to the Bard, she's sunk her enthusiastic teeth into every aspect of theatrical expression and wrestled it into new life. I once saw her perform Allan Ginsberg's "Howl" dressed as a dog, and she had us alternatively convulsing with laughter and weeping from the sudden revealed meaning in Ginsberg's lines.


She was born in 1950 to military parents stationed in Germany. Her mother was treated with experimental antibiotics during her pregnancy with Terry, resulting in Terry being born with profound hearing impairment, some visual deficit, and other fetal nervous system damage. Medical mishap was followed by cultural suppression, as Terry was kept from learning sign language because the thinking of the times was that ASL was not a "real language" and lip-reading offered children a chance to be "normal". We now know this choice can rob a baby of any ability to develop language at all.

This calamity is exactly what happened to my Uncle Joseph, who was removed from my grandparents when he was a toddler and sent to the Texas State School because he had begun acting out in rage at his inability to communicate with others. He and the other children there developed their own pidgin form of sign language, a desperate attempt to break their isolation. Joseph was taught a rudimentary trade (shoe repair), married another girl from the school, and never learned ASL or English. He was estranged from most of the family except my mother and father, who made any effort it took to stay in touch with him and converse across the vicious barrier imposed on him by stupid theorists and administrators.

Terry Galloway's middle name should be overcompensation, because she not only became brilliant in the written and oral use of English, she went into theater. But she is no Johnny Belinda, no nice-girl-making-good. She is full-throttle Falstaff with an education and dyke smarts. And to tell you the whole of how I know this, I'll have to tell you something about myself as well.

On July 25, 2000, I had my left knee replaced. I had a great job, savings and sick time set aside, lots of friends to help me, and a good sports medicine surgeon. I made what I believed was an informed decision. I expected to be out of the hospital and into the rehab unit in a couple of days, home five days after that, walking again more or less normally in six weeks.

But a perfect storm of complications nearly killed me, at first outright and then by degrees. I had a period of anoxia during the surgery that went unnoticed. When I came out of anesthesia, I was on a morphine drip that everyone assumed was responsible for my altered mental state. I was not sure where I was, what was happening around me, or sometimes who were people I know have known well. My kidneys failed, a rare side effect to the anticlotting drug I was on left me unable to eat or drink, and I began having a period again despite having reached menopause. Mostly, though, I could not tell anyone what was going on inside my head. My ability to connect my thoughts to language had been hammered. And nobody noticed.

Well, one nurse did. But the doctors argued it was the morphine, and everybody treated me like I was being overemotional when I tried to get past the roadblock in my neurons.

I hope you never know the kind of terror I felt. I hope nobody ever does.

My third night in the hospital, I was physically abused by the overworked nurse on duty. When the evidence was discovered on my body the following afternoon by another nurse, she called in a coworker and they flat out stated to each other what had occurred, but they didn't document it or tell anyone else, just dressed the wound and told me I wouldn't be left in the care of that nurse again. I began refusing to cooperate with anyone, which got me in more trouble. The physical therapist trying to get me walking up and down the monstrously unfamiliar hallway actually screamed at me that I was going to wind up in a wheelchair and die if I didn't follow her instructions. Finally they shipped me to rehab, several days late, and I decided to work my ass off, get out of there and to safety -- anywhere else felt like safety.

But home turned out to be just as strange and frightening, because of my continuing inability to communicate. I had an 18 inch wound in my leg closed with staples. I couldn't wipe myself, I couldn't hear the phone ring, I couldn't write my name, I couldn't read, and a lot of TV sounded like it wasn't in English. My insurance didn't cover in-home care except for a daily 20 minute visit by a nurse or a PT, so one of my friends came once a day to make me a meal, help me clean up, and do a few essentials. Otherwise I was alone. People were calling me but I couldn't hear the phone and thus was not answering.

Mostly I slept, because when I was asleep, I wasn't terrified.

Three days after I was discharged, I returned to my surgeon's office to have my staples removed. Here's a tip: If you are not an athlete, don't choose a sports medicine specialist as your surgeon. They will not have a realistic set of expectations for you. And they're not likely to be what you'd call empathetic. A friend drove me to the office visit and stayed in the room with me while I got x-rayed, but looked away when the doc pulled out my staples. It didn't hurt, so I did watch. And thus I witnessed eight inches of my wound gradually reopening before my eyes, my skin parting in slow motion to a depth of two inches. The surgeon said "Uh-oh" and left the room. After half a minute, so did my friend. It was the doctor's assistant who explained I had a skin condition called dehiscence, which means wounds tend to not stay closed. Since I'd never had surgery before, we were just finding out about it.

I asked him how much longer I'd be in the hospital. He explained, kindly, that this was not considered enough of a problem to require hospitalization. Instead, I'd be bandaged and sent home. The wound would heal from the inside out -- they call it healing by secondary intention, and if you think I haven't tried to write a poem with that fabulously symbolic phrase in it, you don't know me very well. It would take months, and alter my physical therapy program. He added, as an afterthought, that the risk of infection was now very high, so I'd have to go to see the wound care nurse on my way home.

I was given a wheelchair and sent away. Getting in and out of the chair, the car, had now become even more problematic. My friend coped with it silently, tensely. When she wheeled me into the wound care room, I looked into the face of the physical therapist who had screamed at me in the hospital. We both froze.

I was able, by that time, to articulate in a vague what was going on with me, though mostly I still thought it was a reaction to the morphine. To the PT's credit, she apologized for her behavior and turned out to give me a lot of information I needed. Wound care is a euphemism for teaching you how to take care of your own wound when you're not in the hospital. I'll spare you the details. Let's just say I learned to do things I never would have believed I could. She packed up supplies, wished me luck, and I went back home, where my friend got me to my bed and rushed away because she was late for something.

Two days after that, I called another friend, Mack. She told me she'd been hired to videotape a theater project that was being taught by Terry Galloway. I knew about Terry Galloway, had attended every performance of her in Austin for years, some of them several times. I adored her work. Mack said the new project was called Actual Lives: A group of adults with various disabilities met every day for a week, learning theater and writing an individual performance piece about their life, with Terry's hands-on training. On the seventh day, they would perform their work for the public on stage. Mack said she could maybe get me into the group, but I'd have to go that night.

I told her I needed her to come and get me. She crabbed about it -- I lived at the opposite end of Austin from where she was and where the group was meeting. Finally she said I'd have to be ready and waiting on her. I agreed. I got my wheelchair out the front door and sat on my patio half an hour before she pulled up.

I couldn't tell if Terry recognized me from my many attendances at her plays -- I was too overwhelmed by being out of anything close to familiar, with all the clamor of that particular environment, and with feeling like maybe I wasn't a "real" disabled person. I hadn't eaten dinner, either. In the group were two blind women and two people with TBI. Terry was deaf but not a signer, so everything anyone said had to be repeated to her by someone whose lips she could read, plus all action had to be conveyed to the blind women by a visual interpreter. This simultaneous, exhausting translation was hard on the frail and those with cognitive hits on their attention span. There was more than one meltdown that night. But Terry kept pushing each of us, refusing to treat us with pity or keep a distance. She was in our faces -- literally, if she could read our lips -- assuming if we had shown up for this, we had something to say and she was going to make damned well sure we did it artistically, honestly, and with respect for our audience. We were not going to be "see how the poor crips kinda do a play", not on her watch.

I don't remember saying anything that first night with Actual Lives. I know for certain I didn't tell any of them what I was actually contending with. Mostly I remember watching, still in terror but there was a glimmer of hope on the horizon. At the end of the evening, Terry told us we had to go home and write a paragraph on something, I can't remember what the assignment was. I wheeled over to her and, eventually, got across to her that I couldn't write yet.

"Yes you can" she shouted at me. She didn't mean to shout, that much I understood. "You can write two fucking lines, I don't care what it is. I expect you to bring it tomorrow." Then she put her hand on my shoulder and said "No excuses."

I had to wait on Mack because she was gathering up her gear. There were several people in line to use the only wheelchair accessible bathroom in that place, and I stayed at the end of the line because I didn't want anyone to offer to help, to see the huge bandage on my leg. By the time I got into the stall, I'd pissed myself. Mack found a plastic bag in the back of her car and put it on her seat before I got in. Once at home, I told her I could deal with cleaning myself up and she left.

Eventually, I walkered to my computer and turned it on, the first time since I'd been home. Thank god I had the password written out on a piece of paper next to the monitor. It took me 15 minutes to get a fresh document opened, sitting there in front of me. It was another two hours before, drenched in sweat, I'd managed to type out three sentences. It was extremely bad writing, not quite making sense and certainly not what I wanted to say. But it was enough. I printed it out and went to bed.

I honestly believe Actual Lives saved me. Mostly, it was Terry Galloway. She got to know me, each of us, so she could coax, lead, or hector us into doing the utmost of which we were capable. Over the next couple of years, I lost my job, my savings, most of my friends, and any financial security I'd had. The cat I lived for, my little brother, two of my oldest friends, and my beloved aunts died. I became absolutely a real crip, no doubt about it. But I met it all with courage and humor, instead of being mowed down, because Terry insisted (and modeled) that reality was what you made of it and art is the best transformative tool she knows.

(Terry Galloway with Rude Mechanicals Theater Group in Austin, Texas; photo by Kenny Braun.)

Early on, I tried to write about what happened to me in the hospital and rehab center. It was grim, desperate stuff. Terry was visibly affected by it, as she usually was by our stories. She weeps easily. She gives her heart away at a moment's notice. But one piece of writing she handed back to me, the account of a nightmarish night when I'd needed a tampon changed in the rehab unit and the staff who showed up had never used a tampon themselves. She told me to rewrite it as comedy. I can clearly remember that my immediate response, inside my head, was "Fuck you." Probably that showed on my face as well, because she leaned in to say, a little too loud, "It could be hysterical, if you give up wanting somebody to feel sorry for you."

I did rewrite it, over and over, until it became the second-best performance I ever created. It brought audiences to their knees, howling with laughter, and at the same time conveyed -- far more effectively than a straight approach would -- the intimate horror of that episode. Terry has recently staged it with her performance troupe in Tallahassee. If you want to read the final script, it's at the end of the post titled My Knees (Part Two -- Surgery and Rehab).

I trust Terry completely. She's never let me down. And from her shove back into writing, I went on to form my own writing group, to find other mentors, and to realize my voice as a writer.

In 2002, we both attended the first (and so far, only) Queer Disability Conference in San Francisco. We had rooms in the same dorm, on the same floor, and this incident happened repeatedly: I'd be in my dorm room when I'd hear a pounding on the door and Terry shouting "Maggie! Maggie! Are you in there?" I'd get painstakingly to my feet, lean on my quad cane and move slowly to the door. But once I got it open, I'd see Terry chugging impatiently down the hall toward her own room, her back to me. At which point I'd stupidly shout after her "Terry! Hey, Terry!" Then I'd smack my head, remembering she's DEAF, you dummy.

That itself would make a hilarious little vignette on stage, I think.

In the late 1990s, before Terry became a friend and mentor, I started a group studying the herstory of lesbian activism in Austin during the 1970s. Eventually I made a documentary about this era, interviewing many women about that period in their lives. One of the names which always came up was that of Terry Galloway, who despite being powerful and socially active appears to have made no enemies along the way. Extremely rare for dykes bent on revolution. I was highly entertained when two different women that I interviewed confided in me, off camera, that they were proud of having been "the woman who brought out Terry Galloway". I was even more entertained years later when I told Terry about it, and she snorted in reply "Neither one of them was my first lover!"

Terry's biography at Beacon Press reads:

Terry Galloway is a deaf, queer writer and performer, who tours her one-woman shows as a cheap way of seeing the world. She has performed her solo shows "Out All Night and Lost My Shoes" and "Lardo Weeping," in venues ranging from the American Place theater in New York to the Zap Club in Brighton, England. In Austin, Texas she gained a reputation for playing comic male roles as a student and Research Associate for the University of Texas' alternative Summer Theater Festival, Shakespeare at Winedale.

She's also known as one of the founding members of Austin's wildly popular 6th street cabaret Esther's Follies and as the founder of Actual Lives, a writing and performance workshop for adults with and without disabilities. In Tallahassee, Florida she is the Head Cheese of the Mickee Faust Academy for the REALLY Dramatic Arts and the co-founder of the Mickee Faust Club, a performance group responsible for the award-winning video parodies, "Annie Dearest, The Real Miracle Worker, " featuring lots and lots of wah-wah, and "The Scary Lewis Yell-a-thon," featuring a Jerry Lewis look-alike and a bevy of inspirational cripples. She writes as well as performs and you can find her articles, monologues, poems and performances texts in, among other publications, Sleepaway: Writings on Summer Camp, Cast Out: Queer Lives in Theater, Out of Character- Rants, Raves and Monologues from Today's Top Performance Artists, Plays from the Women's Project, Texas Monthly Magazine, Austin Chronicle, American Voice, The Dolphin Reader, and numerous anthologies about queerness, deafness, disability, theater, and Elvis.

She has been a Visiting Artist at the California Institute of the Arts, Florida State University, and the University of Texas at Austin. She's won a variety of awards including an NEA, a J. Frank Dobie Fellowship from the Texas Institute of Letters, grants from the Texas Commission of the Arts and the Florida Divisions of Cultural Affairs, five Corporation for Public Broadcasting Awards, three Prindi National Public Radio Commentary Awards, and a Best Swimmer Award from the Lions Camp for Crippled Children.

She splits her time between Austin Texas, and Tallahassee, Florida where she lives with her long-time love Donna Marie Nudd, a professor at Florida State University, and their cat Tweety.

Donna Marie Nudd and Terry Galloway, Dobie Paisano Ranch outside Austin, Texas, March 2008, photo ©Marsha Miller, University of Texas at Austin.

SELECTED WORK BY TERRY GALLOWAY:
Mean Little Deaf Queer, Beacon Press, 2009.

Out All Night and Lost My Shoes, play edited by Barbara Hamby, Tallahassee: Apalachee, l993.

In The House Of The Moles, unpublished play.

Lardo Weeding, unpublished play.

Deaf As A Post/Tough as Nails, performance at Queer Disability Conference, San Francisco, June 2002.

Out All Night And Lost My Shoes (solo amalgam performance, includes "Mr. Handchops"), performance at Queer Disability Conference, San Francisco, June 2002.

"Heart of a Dog" In The Women’s Project 2, edited by Julia Miles. New York: Performing Arts Journal, l984.

“Taken: The Philosophically Sexy Transformations Engendered in a Woman by Playing Male Roles in Shakespeare", Text and Performance Quarterly 17.1 (1997): 94-100.

What We Carried Away from Winedale, article in the Austin Chronicle, 23 July 2004

Go to the website for her book at Mean Little Deaf Queer , scroll down the page to the Contents and click on "The Performance of Drowning" to hear an MP3 of Terry reading her essay about winning a swimming award at the Lions Camp for Crippled Children. Highly recommended.

One of Terry Galloway's screenplays and directorial efforts is the short Annie Dearest, by produced by Faust Films and Diane Wilkins. This is a video parody of the classic film The Miracle Worker, which originally starred Patty Duke as deaf/blind Helen Keller and Anne Bancroft as Anne Sullivan, Helen's mentor and tormentor. Disability World heralded Annie Dearest as one of the 25 most outstanding disability films in the last five years. This reveals Terry Galloway's trenchant humor at its best and limns her philosophy of refusing to be the inspirational sort of "good cripple". Co-creator Donna Nudd also stars in the video as "Annie Dearest".


ARTICLES ABOUT TERRY GALLOWAY:
Illuminating essay by Donna Marie Nudd, Terry's partner, titled Feminists As Invisible Dramaturgs: A Case Study of Terry Galloway's Lardo Weeping.

Two Generations, One Art by Robert Faires in the Austin Chronicle, 25 February 2000

QUOTES BY TERRY GALLOWAY:
“Deafness has left me acutely aware of both the duplicity that language is capable of and the many expressions the body cannot hide.”

"Reality which so often intimidates us is exposed as just another fiction. Ours for the rewriting." -- from "Deaf as a Post/Tough as Nails" performed for Queer Disability Conference, San Francisco, California 2002

QUOTES ABOUT TERRY GALLOWAY:
"This is not your mother's triumph-of-the-human-spirit memoir. Yes, Terry Galloway is resilient. But she's also caustic, depraved, utterly disinhibited, and somehow sweetly bubbly, a beguiling raconteuse who periodically leaps onto the dinner table and stabs you with her fork. Her story will fascinate, it will hurt, and you will like it." -- Alison Bechdel, author of FUN HOME

“This is a damn fine piece of work which is unbelievably powerful. This story is true and passionate and fearless and funny as hell when it is not heartbreaking. I expect this book to charm the hell out of great numbers of people, piss off a few, and give hope to many more...” -- Dorothy Allison

Donna Marie Nudd and Terry Galloway, Dobie Paisano Ranch outside Austin, Texas, March 2008, photo ©Marsha Miller, University of Texas at Austin.

[Cross-posted at Group News Blog.]

Read More...

Summary only...

Crip Ward Tango Post at Group News Blog, Video Here

(Actual Lives at H Street Theater in Washington, DC, June 2004: L-R, Danny Saenz, Franky Ramont, Maggie Jochild, Mike Burns, Laura Griebel, Cindy Massey, Terri Stellar, and Rand Metcalfe)

I've got a new post up at Group News Blog concerning my writing of Crip Ward Tango for Actual Lives.

But just for Meta Watershed readers, I've located a short video online taken by Gene Rodgers which has small excerpts from our/my performance at the 2004 VSA International Arts Conference mentioned in my post. Adam Griebel doing his "Frankenstein" part of Crip Ward Tango is near the end; also included is a small segment of my "Dignity" performance, the text of which can be found here.

Unfortunately, during the opening where we are performing the "Good Cripples' Oath", Gene is narrating and you miss the dialogue. Still, it's a fun view.

Read More...

Summary only...

MY KNEES -- PART THREE, AFTER THE SURGERY

(Maggie performing "You Know You Want Me" in rehearsal for Actual Lives show at Southwestern University; photo from American Statesman, 2004)

When I left the rehab unit for the first time, riding in the car sent me into hysterics after a block or two. The visual input of passing scenery was more than my brain could handle. My friend driving had to pull over until I could stop my shuddering. I rode the rest of the way with my eyes closed. That settled the answer of when I'd be able to drive: Not anytime soon.

A friend went out and bought me a phone that flashed lights as well as rang, so if I was in the same room, I'd know when a call was coming in. She helped me program the memory, to autodial numbers for me. I began slowly telling people what I'd been through. Too many people insisted on telling me that I sounded just the same as always, as if that was reassuring. But the point was, I'd looked the same, sounded the same, yet inside my head, severe damage had occurred. I'd always lived by my wits, my intellect, my extraordinary memory. This was much, much worse than losing the ability to walk. This was my ultimate nightmare.

And not a single person I knew who had seen me had noticed what was going on. It punched every isolation and abandonment button I'd ever had.

I didn't qualify for in-home help, so I was getting by with the assistance of friends (a single visit a day) and pushing myself to do as much as I could. I was scheduled for at-home physical therapy and a visiting nurse twice a week to begin the following week. The second day I was out of rehab, I went back to my surgeon's office for a follow-up visit. He wasn't much interested in hearing about the difficulties I'd had. He kept saying they were "routine side effects" and the point was, the knee replacement was a success.

It was time to take out the staples over the massive incision on my left leg. They'd held through all the vigorous physical therapy, despite being stretched very tight, and now they were starting to itch and get red around them. Pulling them out didn't hurt at all. I then walked with my walker to the x-ray room, managed to get up on the table and get a set of films made, and walked back to the exam room.

When I sat down again on the exam table, I noticed a small hole in one part of the incision, above the knee. I told my friend to get the doctor, immediately. It was a deep hole, I could tell. The surgeon and Patrick came back in, and as I sat there, I watched my incision re-open to a length of five inches and a depth of two inches. I could see almost to my bone, deep inside my thigh..

I was numb. I couldn't believe this was happening. The surgeon called it wound dehiscence and said it was common in people who keloided with scars. Then he left the room. Patrick stayed with me and explained a little more. He said they couldn't close the incision again because of the risk of infection. It would have to "heal by secondary intention", which meant from the inside out. It would take months.

I suddenly remembered all the reading I'd done about Captain John Oates, a member of the ill-fated Scott Antarctic Expedition. Oates had been injured by long bullet wound during the Boer War, and this was in the days before antibiotics. The standard treatment for flesh-opening wounds in those days was to keep the patient still and clean, and let the wound heal by second intention. It had affected his military career, which is part of why he ended up volunteering for polar exploration.

However, one of the signs of advanced scurvy is the body's failure to create or replace collagen in skin tissues. Collage requires vitamin C for manufacture by the body. And all scars are almost pure collagen. Thus, in end-stage scurvy, every scar you've ever sustained re-opens as if the wound had never healed.

This is what occurred to Oates on the trek back from the South Pole, as the men were hauling overloaded sledges whose design was deliberately not like Inuit design -- because Scott believed there was something "lofty" in Englishmen refusing to listen to native technology and somehow pushing their way through obstacles with brute obstinacy. According to Scott, when they were stopped by a blizzard and it became clear once the weather improved, Oates would not be able to continue marching, Oates sacrificed himself by leaving the tent during the blizzard so that the others could go on without him. His body was never found.

There is some doubt as to the veracity of this story.
(Captain Oates going into the blizzard to die, colored print of painting by J.C. Dollman, 1913)

Yep, I actually thought of all this as I sat there looking down into the innards of my thigh.

Patrick put a light bandage over my opening and told me not to dress it further. He said I would now have to go to Wound Care, which is a speciality dealing with post-surgery problems. Unfortunately, I couldn't get in until the next day. He told me to stay as still as possible, not get the wound wet, and go to Wound Care, they'd explain the rest.

The friend who had taken me to the doctor visit had spent most of the visit at the window, looking outside, once my leg had opened back up. She couldn't handle what was happening to me. She took me home and left.

Another friend, a nurse, agreed to take me to Wound Care the following day, back at the same hospital where I'd had my surgery. I had a wheelchair by now, and this made getting into the building possible.

Wound Care is often performed by nurses, PTs and other non-doctors who do it as overtime, to earn extra pay. To my shock, when I got into the exam area, I saw that the woman seeing me that day was the physical therapist who had tried to work with me shortly after my surgery, when I had mutely refused to cooperate. She had yelled at me then, telling me if I didn't work to get better, I'd be a cripple all my life, and she had added it was clear I was accustomed to being lazy -- referring to my weight. I had not been able to say a word in reply, and no one was with me to intervene on my behalf.

So, when we saw each other, recognition mingled with profound dismay on both our faces. But I am nothing if not brave. I said "I want to tell you, I'm sorry I couldn't do PT that day and that I couldn't explain why." I told her what had been going on. My friend, the nurse, listened and jumped in to add that I was the hardest worker she'd ever seen, it was definitely out of character for me to be hard-assed or ungrateful.

To her credit, the PT believed me instantly, apologized for going off on me, and, awkwardly at first, we began the training.

The point of Wound Care is to keep you from having to be in a medical facility while wounds heal. Which means the training is to enable you to stay at home and do the work of nursing yourself. Well, usually it's done by a caregiver (like a family member) at home with you. Since I didn't have anyone like that, it was going to be me.

Her tone of voice and manner was completely different from what it had been before. She was kind and respectful as she helped me get through my horror and revulsion. I had to use long Q-tips to reach all the way inside my wound, every nook and cranny, and clean it with saline thoroughly, exerting some pressure. No alcohol or betadine -- the health of my wound would depend on how well I could clean it with saline. I learned there are no nerve endings below the epidermis, thus, no pain or even strong sensation. I learned what the various kinds of flesh and muscle I was seeing were, and how to recognize signs of beginning infection, including the sniff test. I was put on oral antibiotics, given a box of cleaning supplies, told to never get it wet or cover it with more than a light bandage, and I was done. On my own from here on out, except for weekly checks by the visiting nurse who would only inspect, not do the work for me.

But telling my story to that PT, and hearing her understanding and respect, had been my first act of redemption post-surgery.

Two days later, Bea told me she was starting work as an intern for a week-long program directed by Terry Galloway for disabled people to write dramatic pieces and perform them at the end of the week, page to stage in one week. It was called Actual Lives. Bea offered to drive me there and back each night.

(Terry Galloway; photo by Kenny Braun for the Austin Chronicle)

I knew of Terry Galloway, adored her plays and thought (then and now) that she is a genius. I wasn't sure I qualified as disabled (ironic, I know) but I agreed to go. It turned out to be the saving of me, although that first night was unbelievably hard, emotionally and physically. I wound up peeing on myself in my wheelchair because I still had lousy bladder control (only recently off a catheter), though no one but Bea knew. My homework was to write a few lines, at most a paragraph, for the next night that Terry would help us edit and turn into a performance piece.

When I got home and managed to change my pants by myself, I went with my walker to my computer and turned it on. The first time since surgery. I couldn't write long-hand, not legibly, anyway -- I still couldn't sign my name, a friend was signing my checks for me to pay bills. I remember sitting at that blank screen on the page for two hours, trying to force my brain into creating sentences, then struggling to remember how things were spelled. I finally managed three lines, I think. I printed it out and went to bed, exhausted.

My initial contribution to Actual Lives, that first performance, was negligible. A few people picked up on me and we bonded, and Terry definitely zeroed in on me. So I kept going. Over the next four years, it was my chief source of writing encouragement and disabled activism outlet. Terry mentored me thoroughly, and I went on from there to be mentored by Sharon Bridgforth with her Finding Voice program. By that time, I was a daily writer, producing work that I felt was up to my potential and steadily honing my craft.

(Actual Lives ensemble at H Street Theater, VSA International Arts Festival, Washington, DC, June 2004)

Back to September of 2000, however. I had to take extra, unpaid time off work because I wasn't able to return to my job for several reasons. Five weeks post surgery, however, I drove myself in cautiously and pushed into my place of work in my wheelchair. It was then I was informed by a new boss that I was being let go. They had found some other excuse to terminate me, something that dodged the disability claim, and I was too stunned to fight it. They assured me I could get unemployment right away.

I went home and wondered how on earth I'd find another job. My ability to learn had been hammered. It was, in fact, a year before I got another job, despite non-stop effort on my part to heal my brain and body, and become employable again. During that time, I ran through unemployment and my small 401-K.

In the 18 months following surgery, here's what happened in my life, in more or less chronological order (cue the country and western song music):
Lost my job
Had PT slowed down because of the open wound
My little brother Bill died suddenly and badly at age 42
My two favorite aunts, the only family members I'd considered family aside from Bill, died suddenly
Three of my cats died suddenly and badly, including my Cats of Cats Alice
One of my oldest and closest friends died suddenly
At least half a dozen of my regular friends stopping calling or making dates with me
Bea ended our relationship, saying I had too many emotional expectations of her

(Alice Booboo the Manx, Cat of Cats, 1997)

And -- my surgeon claimed I owed an extra bill of $3000 because Patrick had assisted at my surgery and he wasn't covered by my insurance. I said I hadn't consented to paying an out-of-pocket assistant, demanding they turn up a signed consent form from me. When, after weeks of harassing phone calls, someone in his records office, a lesbian from the sound of her voice, confidentially informed me that was no such consent in the records, I told them they had to either put up or shut up. In response, he terminated my care at his office.

I've tried to get my medical records from that hospital twice, but they can't seem to locate them.

Going on during this time, also, was a second medical issue, that of my polycystic ovarian syndome, a profound hormonal disorder that had left me with uterine polyps and dysplasia that had once been labeled cancer, though that path report was overread as non-cancerous by someone from Johns Hopkins. I was having uterine biopsies every six months. When yet another biopsy turned up some dysplasia, I was referred to a surgical oncologist who told me I had to have a hysterectomy.

After examining me, she said it would have to be an abdominal hysterectomy, not a vaginal approach. I told her about my wound dehiscence issue, and she paled a little. She said the chance for infection would be over 50%, then, meaning infection of my abdominal cavity, and that I would have to lie flat for perhaps six months in order to let the incision heal by secondary intention. I said that was out of the question -- I'd never walk again if I stopped moving at all, and I had no job, no health insurance, no disability coverage. She said surgery was the only option and left the room.

So I took my care to Nancy Crossthwaite who does alternative energy work. I began having regular monthly periods (lack of periods is why the dysplasia occurs) for the first time in years, and I became determined to wait out the surgery until I reached menopause. After menopause, the risk of uterine cancer would dramatically decrease. I seem to be in menopause now. I'm still living with my fingers crossed.

I began developing arthritis in all my joints, and went to a rheumatologist. As part of his work-up, I was referred to a podiatrist for my increasing foot and ankle pain, and to a neurologist for a tremor in my hands that was beginning to affect my handwriting (an ability which had returned, eventually).

The podiatrist took a series of x-rays, came back in the room, put them up on the lightbox and put a poster of normal feet next to it. Then she came to stand beside me, her arm over my shoulder. I knew this routine.

Turns out, it wasn't just my tibia with deformities. My feet were unbelievably wrong. Plus, my ankle joints had absorbed as much punishment from the crooked tibia as my knees had. The left ankle was not as bad as the right, likely because for four years I'd now had a straight leg on that side. There was no surgical option for these issues. Not walking would be a good idea, she said.

I told her that Bill had worn braces on his feet as a baby and described them. She recognized them as an attempt to correct the same problems as I had with my feet. She was raised in Croatia, and knew about older forms of medical treatment. She looked me in the eye and said "But they didn't notice your feet, huh? Because you were the girl."

I could only nod.

She asked if she could bring in other doctors and trainees at the clinic to look at my x-rays, and I said okay. I listened to their amazed responses; no one had ever seen anything like it.

I got to choose the neurologist I was referred to, and I selected a woman whose dictation I had transcribed, Dr. Reading. I liked the tone of her voice when she talked about her patients -- kind and respectful. It turned out to be the best medical consult of my life.

She went through everything, not just the tremor (which she diagnosed as benign and not likely to progress, not needing treatment). It was a long, increasingly intimate conversation we had. She tested my memory and every aspect of my neurological function. She told me that she'd once had as part of her test of a patient's general knowledge in the mental status exam a question which said "We were attacked on 9/11 by terrorists whose leaders resided in a particular country, and we then attacked that country in response. What country was that?" She said at leat 50% of patients answered Iraq instead of Afghanistan. She called it a mass delusion.

After that, I felt like I could trust her with the story of how my brain had been affected. I'd stopped talking about it, because my friends tended to not believe I had a residue -- my memory had been phenomenal before the surgery, and it was still excellent. Though not what it had once been, and I definitely was getting the message from people that I shouldn't have feelings of loss about that, seeing how high-functioning I was.

But Dr. Reading got it. She encouraged me to keep taking it to therapy, because the loss was real and, at this point, four years later, likely permanent. She also said she was certain, from the clear and intricate description I was able to give her, that I had had an episode of anoxia during surgery, a loss of oxygen to the brain. Not enough to kill me or cause serious brain damage, but enough to hammer me good and affect my kidneys. She said she was sure it was this residue I had struggled with, more than the morphine, although she agreed the morphine had played a role as well. She said in the future, if I had surgery, to tell the anesthesiologist I had had anoxia and they would be diligent in trying to keep it from occurring again.

I cannot express what a difference this made.

So, here I am now, seven years post surgery. My right knee is starting to fail, with an old familiar pain beginning. My left knee internal hardware slips sometimes, I can feel it. My thumbs, shoulders, and neck joints ache frequently. My left foot swells when I don't stand enough, but walking is now impossible without something to lean on. I'm on daily Celebrex, which makes a profound difference in inflammation and stiffness but carries a serious cardiac risk. I am more isolated than ever, in terms of seeing other people or getting physical help. I work at home via telecommuting, the last possible job I could get and it's not paying me enough to actually get by -- but the benefits are excellent. I don't take pain pills, unless I have an ovarian cyst rupture, which seem to have stopped occurring with menopause. I have nursing home insurance that will pay $3000 a month for three years, when and if I reach that point. It's enough for a decent place, though likely not a private room. Which means my writing will come to an end, because I need a great deal of solitude to write.

What is going well, exponentially so, is my writing. And my happiness with myself, no small thing. And a few old and new friends who manage to stay close, really close, via phone and e-mail.

My final performance was Actual Lives included a finale for the entire troupe that I wrote, using the music and structure of the Jailhouse Tango scene from the movie Chicago. This piece, "Crip Ward Tango", became the break-out hit of that entire international disabled gathering in D.C., and was referenced in the closing remarks as a stellar example of what disabled art could do. I heard strangers at the conference walking around singing it the next day. The first verse/character is me, based on my life. The next three were based on getting to hear the real stories of three of my colleagues in Actual Lives: Adam Griebel, Terri Stellar, and Terri Lynn Hudson. I dedicate it to them here. Tango on.
(Actual Lives finale performance at H Street Theater, International VSA Arts Festival, June 2004. L to R: Gene Rodgers, Adam Griebel, Danny Saenz, Frankie Ramont, Mike Burns, Maggie Jochild, Laura Griebel, Cindy Massey, Terri Stellar, Rand Metcalfe, and Jeff Marsh)

CRIP WARD TANGO

(Main performers in D.C. were Maggie Jochild, Adam Griebel, Terri Stellar, Jeff Marsh; live musical accompaniment was to tune of "He Had It Coming" in Cell Block Tango scene of Chicago. Maggie in regular chair with walker; Adam fully mobile but clearly brain-injured; Terri in power chair; Jeff in manual chair)

Announcer: And now, ladies and gentleman, the merry misfits of the Travis County Cripples Hospital are proud to present their rendition of the Crip Ward Tango.

[begins slowly, words spoken emphatically with rhythm-based pauses in between]

Maggie: Wazzup?

Adam: Frankenstein

Terri: Past life

Jeff: Amnio

Maggie: Wazzup?

Adam: Frankenstein

Terri: Past life

Jeff: Amnio

[All making head motions to tango musical interlude in background]

Maggie: [spoken slowly with glee and relish]

You know how people always ask you
"How are you? How's it going? Wazzup?"
Sometimes it's just automatic
but most people do care to some extent
They keep track of your milestones
And the unspoken expectation
is that if you are sick
or hurting
or -- god forbid -- disabled
You are going to get better, SOON
They turn off if you aren't better yet
They make suggestions for treatment
Something SOMEbody can do
so the next time they see you
your answer will be
"I'm doing better"
But what if that's never gonna be true?
Are any of you ready to hear THAT reply?

All: [singing chorus, repeated twice]

I won't get better
I won't get better
This is the best I'll ever be
And when I’m older
Yeah when I'm older
Things may be even worse for me

Adam: [spoken, upbeat and humorous]

People assume if you can't talk
Then you can't think
Or if you can't remember things fast
You must be STOOO- PID
They raise their voices
They talk to you like you are three years old
And if you get frustrated
For god's sake don't show it
'Cause nothing scares people more
Than a dummy on a rampage
Can you say "Frankenstein"?

All: [singing chorus, repeated twice]

I'm not retarded
I'm not retarded
Though that's an okay way to be
Why don't you listen
Shut up and listen
And find out what is the truth for me?

Terri:

Faith healers
Now THERE's a freak show
We crips are supposed to be close to God
or at least to remind others of how
God moves in mysterious ways
And the New Agers, they think
If you can just identify and clear out
the blockages from childhood issues
Or maybe it's a past life thing
The cancer will disintegrate
Your vision will return
They know somebody in Sausalito
who regrew a crooked spine!

All: [singing chorus]

Mind over matter
Mind over matter
Your only problem's in your head
Have you tried Jesus
Think of his suffering
Stop being hopeless, get out of bed

[said rapidly by each character, following tango beat]

Wazzup, Frankenstein, Past life, Amnio
Wazzup, Frankenstein, Past life, Amnio
Wazzup, Frankenstein, Past life, Amnio

All: [singing chorus]

Mind over matter
Mind over matter
Your only problem's in your head
Have you tried Jesus
Think of his suffering
Stop being hopeless, get out of bed

Jeff:

But the biggest tragedy of all, the worst
thing that can happen to a family
is when a child is born crippled
Right?
Was it bad genes? Was it bad choices?
Is it a lesson sent from God?
Why oh why would God let this happen
to an innocent child?
What kind of life can he expect to have?
No wife, no children, that's for sure
Some of their friends will whisper
"If they'd had amniocentesis, maybe
they could have stopped the pregnancy in time"
What do you say to things like that?

All: [singing chorus]

I am not dead yet
I am not dead yet
My only obstacles are YOU
I have a body
I have a sex life
It's time to alter your point of view

I am not dead yet
I am not dead yet
My only obstacles are YOU
I have a body
I have a sex life
It's time to alter your point of view

Maggie:

What if I never heal?

Adam:

If you can't talk, you can't think

Terri:

Have you tried Jesus?

Jeff:

What kind of life?

All: [singing chorus' last line] It's time to alter your point of view

Copyright 2004 by Maggie Jochild.

Read More...

Summary only...