I was scheduled to have my left knee replaced on July 25, 2000. The week before, my surgeon called to say he was planned to go on vacation right afterward -- like, that afternoon -- but he'd arrange another physician to look after me post-surgery. I said okay. (Cast of Actual Lives disabled adults performance troupe as we prepare to perform in DC, June 2004 -- I'm in the middle, in tie-dye) MAGGIE: Louise – MAGGIE: and Paula. MAGGIE: They were both from Jamaica. MAGGIE: They turned on the lights, waking up my elderly right-wing Republican lady roommate, who slept just a couple of feet away from me separated by a thin curtain. MAGGIE: I told Paula what kind of help I needed. LOUISE: Why are you not wearing pads? MAGGIE: Louise asked. I explained. She and Paula left again, abruptly – MAGGIE: And returned slapping on latex gloves. MAGGIE: Louise stood, grinning, beside my bed and said – LOUISE: We, neither of us, have ever used a tampon, but I’m sure we can figure it out. MAGGIE: Silence is NOT recommended on a rehab floor. I said, “Hand me a tampon and let’s have a little demonstration, okay?” MAGGIE: Paula tried first. MAGGIE: Louise demanded a turn. MAGGIE: Paula pushed Louise aside MAGGIE: They took on Number Five as a joint effort, with much discussion that I could not entirely follow. MAGGIE: I thanked them earnestly LOUISE: (waving her hand at Maggie) No problem, miss. MAGGIE: The next morning my roommate called to me from behind the curtain – MIZ PINKNEY: How are YOU today? MAGGIE: I hollered back, “Just fine, thank you.” MAGGIE: Sometimes all you have left is your dignity.
I felt ready. I had a stack of books to read while I recuperated. I had three weeks off work. My friend Ginger, a gifted botanist and herbalist, consulted with me and had an array of tinctures for me to take before and after. My friend Kathy, an incredible nurse and masseuse, said she'd be there as I came out of surgery to lay on hands and ease the transition, as she'd done with me for other surgeries. And the weekend before, my best friend offered to take me to the coast, to the town where I'd been born, so I could see the ocean and recharge.
This friend, whom I'll call Loner Butch, was, to understate it, not adept at processing her emotions. She could talk about them with me all day (and did) but nothing ever shifted. In addition, I was pretty much the only person she talked over certain personal things, despite my frequent suggestions that she get and keep a therapist. I suspected that leaning on her around the surgery might be problematic. Still, there were times she had really come through for me -- like the day I had to get a cane.
What I didn't understand then was that she was good in a crisis only if she could be the hero who thinks of what to do. If she was stuck, or when given a direct request, she stalled out and got resentful. Part of the butch thing that I just didn't know how to manipulate. Or care to learn.
She also exercise extremely poor judgment with regard to sexual encounters. Mostly, she was only drawn to women who wanted to come out, women who were unstable, or women who had no expectations of her. Or all three combined.
I did not know that a few months earlier, she had gone to a national women's martial arts training conference in Massachusetts, picked up a woman there and slept with her right away. It wasn't until the next morning that they swapped information enough to find out this pick-up had in fact grown up in Austin, and was someone from my past. Not just anyone, but someone who had attacked me and whom I (at that time) perceived as an enemy. We'll call her Perceived Enemy. (I no longer think in terms of having enemies, by the way.)
When Perceived Enemy found out that Lone Butch was my best friend, she freaked out. Some sort of confrontation ensued. Lone Butch decided not to tell me about it until we were at the coast, eating dinner at a Vietnamese restaurant, two days before my surgery. She couldn't tell me what her relationship was going to be with PE, she said. She didn't know what to do, and she was only telling me because what if I died during surgery, she'd feel guilty forever.
Yep. I didn't get much recharge out of that trip.
If it was now, campers, I'd drive home, tell her she wasn't able to maintain my standards of friendship, and postpone the surgery until I'd arranged other support. But some things you learn by doing them wrong.
Still, once I got into the operating suite, I was amazingly calm. I was ready for change. There was some delay, I can't remember why, so instead of them putting me right out, I lay on the operating table as a room full of people got ready for a major surgery that would last several hours. I watched them doing things all around me, interesting things. On a cloth-covered table as big as the one I lay on, right beside me, someone with gloves and a mask was lying out sterile intruments. The tools used for orthopedic surgery are usually gleaming stainless steel and run to the horror end of things: Saws, hammers, chisels, and such. I look at this Marathon-Man collection and said to the tech nearest me, with humor in my voice, "You know, a sane person wouldn't consent to this kind of surgery if they knew about stuff like that."
All motion in the room ceased. The anesthesiologist at my head said in a stiff tone "Are you withdrawing consent?" But Patrick was in the room, and he laughed, saying "I think she's joking. Are you joking?"
I said "Oh, of course. Let's get this show on the road." That's my last memory for quite a while.
Later that afternoon, I start having scraps of memory. People talking to me, trying to get me to say something. My entire body in an agonizing frenzy of itching. My left leg not responding at all to my attempts to move it. Not knowing where I was or who some of the people in the room, my friends, were.
My memory is just scraps for the next two days. Here's what I learned later, some of it years later:
The surgery took longer than usual because of the abnormality they found when they opened me up. Apparently when the surgeon went to meet my friends afterward, he said "I don't understand how she stood up on that knee."
The itching was a reaction to the morphine drip they put me for pain. Turns out I'm intolerant. But since I wasn't completely allergic, they kept me on it for almost four days.
Because of prolonged immobility, they gave me twice daily injections in my stomach of a blood-clot preventive named Lovenox. I'm part of the 5% of the population that has an unusual reaction to Lovenox: It hammers taste buds, so everything I put in my mouth tasted exactly (I'm not exaggerating) like acid-laced feces. I vomited violently when I tried to even sip water.
My kidneys failed. I was on a catheter and intravenous line, plus other drugs to deal with the failure, but by the third day I was headed for dialysis. Then my kidney started working, sluggishly for a long time. Still, they were frantic to get me to eat and drink, and I could not without vomiting. They didn't figure out the taste bud thing for two days.
There was no single doctor scheduled to replace my surgery for after-care. Instead, a different on-call physician came in every time, twice a day. I wouldn't have recognized them in any event, but the continuity of care was extremely interrupted by this.
I could think okay, but I couldn't say what I wanted to say. There was a disconnect between my brain and my ability to communicate. So, I couldn't tell them about the painful spot in my low back until it turned into the beginning of a decubitus ulcer. I kept saying "It hurts", but I couldn't say where and they would just say "You've had all the morphine you can have for now", assuming it was my knee.
I couldn't hear bells, so I never heard the bedside phone, friends calling to check in on me. When a nurse was in the room, she'd answer for me and hand me the phone. I have no idea what I said to people. One friend said I told her I was fine, was already walking and was going home in two days. Another friend said I wept and begged her to come rescue me, that I was in agony and nobody would listen.
I couldn't read and retain more than a couple of words. I thought the characters on TV were speaking in a foreign language. I didn't know what city I was in. The only number I could recognize was 7. I could not sign my name.
And way down deep inside, I was in mortal terror. I still cannot describe how scared I was.
For several hours each day, I was put into a CPM (continuous passive motion) machine, a device attached to my left leg that slowly, gently flexed my knee, then released it, over and over. This was actually a relief and I looked forward to it. I was also, intermittently during the day and most of the night, in sequential compressive devices, stockings with a pneumatic action that compressed my feet rhythmically to keep blood flowing and prevent the formation of clots. These I hated, passionately. They came with an alarm that would beep if they weren't fitted on my feet properly, of if I managed to pull them off. The alarm was at the head of my bed, near my ear. When it went off, a nurse would come in and adjust the stockings.
I was shown, repeatedly, the call button on my bed but I could never find it on my own. I had a private room, which I'd requested. Because of the kidney failure, I'd been put into the intensive care section.
The second night, the nurse who put me into the CPM machine and the compression stockings was in a hurry. His name was Victor, he was young and impatient and had too many patients to look after. He failed to adjust the sheepskin padding on the CPM machine at the back of my thigh, so that every time the metal gear went round, it rubbed against the skin there. I tried to tell him I could feel something not right, but I couldn't find the words for it.
The stocking alarm kept going off. He would rush back in, increasingly frustrated, find an adjustment that stopped the alarm, then a few minutes later it would start beeping in my ear again. He did this four times. The fifth time, he gave a huge sigh, walked out of the room with the beeping still going, turned off the light, shut the door -- the door to my room was never shut in that section, it was against the rules.
He never came back. I lay there for four hours with the beeping in my ear as the metal gear gradually, inexorably tore a hole in the back of my thigh six inches long.
I went a little crazy. I couldn't find the call button, though I tried for over an hour. Finally -- I feel humiliated about this still -- I began pushing my finger into the air, hoping that it would magically connect with the button somehow.
At dawn, the shift changed. A new nurse came in, Francine. She exclaimed when she found the door shut and the light off. She rushed to turn off the alarm -- she didn't know it had been going for four hours, and I couldn't tell her. She removed the CPM machine and tried to get me to drink orange juice, which was the worst taste of all.
That morning, the physical therapist showed up to give me my first treatment. I refused to cooperate. I wouldn't get out of bed. I couldn't explain why, but I wasn't going to trust anybody again until something was done. Finally the doctor was called, and he came to see me at lunch, asking me why I was suddenly recalcitrant. I still couldn't say. He looked at me intently and said "I think you must have a reason." I nodded, I could do that much. He said "Is something wrong?" I nodded again.
The nurse in the room, Velda, helped me sit up and opened my gown to check me out. She's the one who found the decubitus. When she helped me scoot to the edge of the bed so she could change the sheets, she's also the one who found the wound on my thigh. The doctor had gone by that time, but she called in Francine and they dressed my wound in a cold fury. "Who was on last night?" said Velda. "Victor" said Francine between tight lips. "He's not to come near her again" said Velda.
That afternoon, yet another doctor figured out about the Lovenox and explained it to me, patiently. She said I had to eat and drink, no matter how it tasted, and keep it down or else my body would slide downhill. I nodded, and after that I forced things down, only vomiting ocasionally. That side effect lasted for six weeks.
The next afternoon, they took me off morphine. By dinnertime, I could say "Something's wrong with my brain." I couldn't explain it, but I had my friends' attention. At least, the ones who could believe it. For some of them, it was too hard to accept. One of the nurses, a white-haired Chinese-American man named William, became my guardian and explainer. He said he'd seen this kind of reaction before to morphine. I felt safer if he was on shift.
I had to stay in that part of the hospital two more days, until they were reassured about my kidney function and I was clear of the morphine. When the physical therapist returned, I willingly did the exercises she requested. But the inability to read, or hear bells, or express myself fully did not pass.
Six days after surgery, right before dinnertime, a tech came in and began packing my things. He said I was being transferred to rehab. I didn't know what that meant. The rehab unit was adjacent to the hospital and there was an underground passageway between the two, so I was taken from one building to another without going outside, which only added to my disorientation. None of my friends were there, and William wasn't around to explain what was happening. Suddenly I was in a new place, a tiny room with two beds in it, and the nurse who settled me in said they were overextended, I needed to go get my own dinner. Then he left.
I had no idea where to go, and I couldn't really get around with my walker yet, just ten feet or so. I lay on the bed, watching the light fade. After an hour, the same nurse came back and seemed frustrated at my inaction. I said "I don't know what's happening. I don't understand." He looked at my face, then, and said "All right, just for tonight, I'll go get your tray." He was around my age, Latino, and I eventually found out his name was Enrique.
When he brought me dinner, I said "I don't mean to make trouble, but could you explain where I am and what I'm supposed to do?" He did explain, very nicely. He said I could only have pain pills every four hours, no more. I told him I didn't want any pain pills, I didn't want any more pain medication. He looked startled and said everybody there lived for their pain pill, I'd change my mind. I also explained I couldn't sit up without help or go to the bathroom alone, which was not in my chart. In addition, I'd started my period and would need help with that. He blanched and said he'd help with everything but the period, he'd find someone else for that.
The next morning, an occupational therapist got me up and helped me get dressed in real clothes. She was impressed with my initiative and determination. I did it almost all by myself, though I was soaked with sweat by the end. She helped me navigate my walker to the main room, which was very close, where everybody else was eating breakfast. I was by far the youngest person in the room. But I wound up at a table with a brilliant, funny old lady who had just had her hips replaced, and we bonded.
After breakfast, a pool therapist showed up to begin fitting me for a water-proof bandage and brace to use in the pool, instead of my regular knee brace. When he left, I began regular physical therapy.
Here's the deal: In order to get at the knee, they make this huge incision but then, much worse, they cut the cruciate ligaments on the front and back of your knee. These ligaments are what gives your knee its stability and much of its ability to flex and extend. In addition, the collateral ligaments on either side are severely stretched out of place, like the worst sports injury possible. So the only muscle I had to lift or move my knee was my quadriceps.
I did whatever they asked me. I worked my ass off. That week was the Republican Convention that nominated Dubya, and my new roommate was an ardent fan of his who watched the Convention on her TV (a few feet away from my bed) all hours of the day and night. But I had earplugs, and I just stayed focused.
I had a phone by my bed, but I couldn't hear it ring or dial out, so the only break in isolation I had was when friends braved the rehab terror and came to visit. Some friends were great. Heather Burmeister, a young poet, came several days in a row and went to PT with me, ate with me and the old folks, and was completely relaxed about the horrors of that place. I'll love her forever for that.
All of the staff grew fond of me, because I did whatever they asked of me and I treated them with respect. Also, I developed a small legen because I never took a single pain pill while I was there. By the time I got back from PT, I'd been shaking hard and soaked in sweat, and all I needed was to get prone to fall asleep.
I had to have tampons inserted because I was doing pool therapy at least once a day. This led to an almost unbelievable incident in the middle of the night, with two nurses who had never even seen a tampon, much less inserted one. I wrote this story later for a performance piece in Actual Lives, exactly at it occurred, and it was grim. Our director Terry Galloway insisted I rewrite it as a piece of comedy, and it became the most popular thing I ever did. I performed it at the VSA National Arts Disability Conference in Washington, DC in 2004. That script is at the end of this post.
I was still in rehab for my birthday, of course. My little brother Bill was working six days a week, with only Sundays off. Plus, he had an absolute phobia of hospitals, wounds, doctors, anything to do with infirmity. Still, he and his wife drove five hours down from Grand Prairie on his day off to have birthday cake with me. His gift was the So You Want To Be A Millionaire game, a perfect choice for us, the board-game competitors. It was immediately apparent, however, that I couldn't pay it at the moment, though I was willing to try. He stayed for two hours, in a sheen of apprehension despite the chill of the rehab floor, then they drove back five hours so he could get up early and return to work the next day.
The Deagans came, too, bringing me Chinese food and my godson Zap, who was two then. He was charmed by my bedside toilet and wheelchair, which he compared to his potty and stroller. Their visit was a high point of the week.
(Zap and Maggie in her rehab room, August 2000)
But missing were Loner Butch and the woman I was involved with, Bea. Bea's family has a gated enclave in the Adirondacks, an inherited estate shared now by many descendants of the original robber baron founder, and the annual fees to even get past the gate are fabulously expensive. Her parents were making a visit to this land and invited her. It was her chance to wheedle more money from them to keep living in the lifestyle she was accustomed to, instead of the working class she pretended to be in the dyke community. So she left two days before my birthday, despite me weeping and begging her not to go.
And Loner Butch? Nobody knew where she was for three days, and I couldn't call her. Months later, I found out she decided to make a surprise visit to PE in Massachusetts, for another sexual encounter, while I was in rehab. Just one of the many reasons we're no longer friends.
After a week, I got released from rehab and it wasn't until I was safely at home, in my own bed, that the terror I'd been living with came to the surface. And it wasn't until Yom Kippur in 2004 that I got the last piece of the puzzle, what had happened to me during surgery.
DIGNITY AS A BRAND OF FEMININE HYGIENE PRODUCT (PERFORMANCE PIECE
(Maggie sits center stage in a chair with walker behind her. To her left a few feet is a chair with Miz Pinkney sitting in it. Behind her a few feet, flanking her on either side, backs to the audience, are Louise and Paula. In their pockets are tampons and latex gloves.)
MAGGIE: Sometimes all you have left is your dignity. Sometimes you have to redefine what that means.
After they replaced my knee, I was the youngest person in that rehab unit and for sure I was the only woman having a period. The first day I was told I’d been assigned to pool therapy but I couldn’t get in the pool unless I used a tampon. The problem was, I could not sit up without help, lots of help; I was on a catheter, could not wipe myself yet, and changing a tampon was, well, out of the question.
The attendants in a rehab unit are paid shit. The more intimate the services they provide patients, the lower their pay. Just another example of how well capitalism functions. All same, I encountered only respect from the people who worked there. Some of the male attendants simply could not face the tampon challenge. I tried to save my needs for when friendly female staff were available.
But one night I woke up bleeding onto the Chux. I buzzed for the night attendant. Two of them came –
(Louise and Paula walk up to stand on either side of Maggie; they have blank, alert expressions)
(Louise tilts her head to the right)
(Paula tilts her head to the left)
(they both smile and wave at the audience)
(Maggie gestures to her right. Miz Pinkney mimes waking up abruptly, blinking at sudden light.)
(Louise and Paula wheel and take two steps away from Maggie to the rear)
(Maggie looks in horror from Louise to Paula, who is nodding animatedly. Maggie leans forward on walker to address the audience emphatically)
(Louise hands Maggie a tampon; Maggie holds it up as she continues)
I showed them how the plastic applicator worked, at which point to remove it and why the string was there.
(hands tampon to Paula, who promptly pulls it apart and reacts in mild shock)
They were intrigued
(Paula hands tampon to Louise)
and each of them took a turn at pushing the cotton wad back and forth. Finally they threw away Tampon #1
(Louise flings the tampon away from her in an overhead arc so that it flies onto Miz Pinkney, who reacts with silent horror)
and set about rigging makeshift stirrups for me.
(Louise and Paula help lift Maggie’s legs up onto the lower rung of the walker so she is spread-eagled facing the audience)
(Louise hands Paula a new tampon in the manner of a surgical nurse handing an instrument to a doctor; Paula moves to stand in front of Maggie, bends over so Maggie’s head is visible above Paula’s rump bent over the walker, swings her arm back like she is about to swing a bowling ball and then jams the tampon toward Maggie’s crotch; Maggie reacts with a backward motion)
She got it in okay but pulled the entire tampon back out with the paper tube. (Paula holds the tampon back up and looks at it in amazement)
We tossed Tampon #2
(again throw it in a high arc so it lands in the audience)
(Louise takes out a new tampon and stands in front of the walker as Louise just did; as she bends down over the walker toward Maggie’s crotch, she wiggles her ass vigorously and Maggie matches this motion in her chair)
She was focused on the applicator function but not so much on me, and within seconds I yelled, “Oh my god no, that’s not the right hole!”
(Maggie jerks backward as Louise holds up the tampon again. Louise tosses it carelessly into the audience.)
MAGGIE: There was complete silence from the bed behind the curtain next to me (Maggie motions toward Miz Pinkney, who mimes silent desperation)
but Paula and Louise were in stitches.
(Paula and Louise begin chuckling wildly)
Their language was becoming less and less comprehensible to me, and the only sane course of action was to laugh along with them.
(Maggie laughs out loud, at which point Paula and Louise instantly stare at her in consternation with serious expressions.)
(Paula steps back in front of the walker and pushes Louise away by the shoulder; Louise hands Paula another tampon)
and tried again.
(Paula bends over the walker as before, but for a couple of seconds extends her hands behind her back and mimes clicking her fingernails together like a lobster claw so the audience can see; she then swings the tampon toward Maggie’s crotch as before)
She had long fingernails, and in gripping the paper tube to remove it she decided to use her nails like tweezers. My screech caused her to jerk her hand back and, once again, the tampon came out entirely.
(Paula holds up the tampon in amazement, then flings it toward audience.
Louise takes out another tampon and holds it toward Paula; they grip it together and move around to both stand in front of the walker, and swing it in unison)
(Paula and Louise mime earnestly talking to each other)
After it was successfully inserted and the tube removed, they continued talking over something while bent down over my crotch and giggling.
(Paula and Louise remain bent over my spread legs, laughing)
Finally I said “Okay? and they straightened up
(Paula and Louise stand up abruptly)
and began gently moving my legs back onto the bed.
(Paula and Louise place Maggie’s legs back down on the floor)
(shakes first Paula’s hand vigorously while gazing up into Paula’s face, then does the same with Louise; after shaking Louise’s hand, Maggie wipes off her own hand on her shirt with revulsion; Louise and Paula begin walking backwards.)
(pause a beat, then speak to the audience)
Sometimes you have to redefine what that means.
© 2004 Maggie Jochild
(to be continued)
(Cast of Actual Lives disabled adults performance troupe as we prepare to perform in DC, June 2004 -- I'm in the middle, in tie-dye)
MAGGIE: Louise –
MAGGIE: and Paula.
MAGGIE: They were both from Jamaica.
MAGGIE: They turned on the lights, waking up my elderly right-wing Republican lady roommate, who slept just a couple of feet away from me separated by a thin curtain.
MAGGIE: I told Paula what kind of help I needed.
LOUISE: Why are you not wearing pads?
MAGGIE: Louise asked. I explained. She and Paula left again, abruptly –
MAGGIE: And returned slapping on latex gloves.
MAGGIE: Louise stood, grinning, beside my bed and said –
LOUISE: We, neither of us, have ever used a tampon, but I’m sure we can figure it out.
MAGGIE: Silence is NOT recommended on a rehab floor. I said, “Hand me a tampon and let’s have a little demonstration, okay?”
MAGGIE: Paula tried first.
MAGGIE: Louise demanded a turn.
MAGGIE: Paula pushed Louise aside
MAGGIE: They took on Number Five as a joint effort, with much discussion that I could not entirely follow.
MAGGIE: I thanked them earnestly
LOUISE: (waving her hand at Maggie) No problem, miss.
MAGGIE: The next morning my roommate called to me from behind the curtain –
MIZ PINKNEY: How are YOU today?
MAGGIE: I hollered back, “Just fine, thank you.”
MAGGIE: Sometimes all you have left is your dignity.