Tuesday, October 9, 2007


(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)


(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?


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


But the biggest tragedy of all, the worst
thing that can happen to a family
is when a child is born crippled
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


What if I never heal?


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


Have you tried Jesus?


What kind of life?

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

Copyright 2004 by Maggie Jochild.


Anonymous said...

wow, when you said that it would take multiple posts to explain your knees, I was a little confused.....
You have been through so much, it's almost inconceivable.
I feel like anything I can say will sound trite and completely useless.

Thank you for sharing. I really mean it.

Maggie Jochild said...

Thank you for asking, Kat. I needed to tell this story, hard as it's been (my dreams have royally sucked for the last few days), and to make it available somewhere outside my head. It's cathartic. And to know you wanted to hear it -- Well, as American Express says, priceless.

I'm glad you said "almost" inconceivable, or else I'd have to use that hysterical quote from Princess Bride on you -- when Mandy Patinkin says "I do not think that word means what you think it means". (grin)

shadocat said...

Holy Crap Maggie, what a ride that was! And that "Tango" piece was so emotional , funny and fantastic!

Ah, if only people realized what can go wrong in surgery---they never really tell you when you sign that consent do they? Because if they ever did, most people wouldn't have it! How would it go , something like this; "This surgery may cause problems that will go on for years, maybe even for the rest of you life. You may develop an infection that actually eats up your flesh (that one's mine) you may react so badly to the anesthesia that it causes brain damage, or just out and out kills you; you may react negatively to any artificial devices implanted in your body, and may have to have another surgery to remove them;or we might just have it all wrong, and this whole operation may be completely unnecessary in the first place!" Sheesh!

My hat's off to you, woman; you did your own wound care! Did they ever have you pack the wound? Mine was packed, and supposedly it healed faster because of this, although it still seemed to take too damn long to me. Whenever I looked at that hole in my abdomen, I got dizzy, and the room spun 'round--if it hadn't been for Cyndi, I'd have passed out every time. She actually volunteered to do my wound care---it was then I knew she was a keeper.

Anonymous said...

ah, the Princess Bride.....that movie is relevant in every situation, I think!

as for weird side effects that they don't tell you about (or ways in which someone fucks up), how's this: my friend Elza WOKE UP for reals in the middle of open heart surgery.

I like exagerations, Maggie (as it has probably become clear). I find that it makes stories more fun.
Of course, the stories that I tell usually need to be made more interesting, whereas yours stop us all in our tracks.

you're remarkable.

Maggie Jochild said...

Shado -- she offered to do wound care? Hell, yeah, that's a grown-up you want around forever.

But the truth is, if you've been a parent of an adventurous kid, you've learned to get past squeamishness. I used to nearly pass out at that scene in Rambo when he sews up his own arm. Now I think, no biggie.

And Kat -- god's truth, I once typed a medical report on a guy who also woke up during his open heart surgery. He was a crusty old rancher from the Hill Country west of here, and they'd given him a paralytic plus something to knock him out. When he woke up, they were about to crack his chest with the buzzsaw or whatever it is, and he could feel everything but couldn't move a muscle because of the paralytic. He passed out from the pain, woke up again just as they were spreading his ribs, and on and on. He kept passing out and waking back up at critical junctures. Had a very clear memory of seeing his heart in the surgeon's fingers.

Anyhow, when the surgery was finally over and they reversed the paralytic, he told 'em what had happened. They went berserk, and lawyers were present in an amazingly short time. But he refused to sue them, and he signed a release against future litigation, saying that the surgery had been successful, hey, anybody can make a mistake, and he was just glad to have survived it. A regular bubba attitude from around here.

Me? I'd OWN that hospital now.

Which is why, when I went in for my first surgery, I kept stressing to the anesthesiologist that I didn't want to wake up during the operation. He started looking at me funny, like I was obsessed. But damn if I didn't eventually do just that -- only it was arthroscopy and I was still under the spinal, so no pain was involved. And I let it slide.

I bet people who read these posts become phobic about surgery.

little gator said...

I am carefully keeping all this from Mt Gator, since he doesn't know yet whether he gets to keep his gallbladder.

As for the gross-out factor, I used to work at an animal hospital and saw lots of surgery and nasty wounds and stuff.

The funny things is, only two things bothered me, eye stuff and drool. I could help clean up after horrible pus and blood from abscess surgery just fine. BUt if a dog drooled on the table I'd get queasy.

Anonymous said...

I think my friend's experience was pretty much the same as that guy's. 'Cept she had her surgery in South Africa (cuz when you're here on a student visa and you're at a little teeny music school with no health clinic, you pretty much have to wait till you get home for any care), where I guess suing isn't really done.

Gator, my cousin is a veterinarian and is the same. the only thing that grosses her out is drool. Baby drool, to be exact......why that's gross after some of the places she's shoved her hands, I'll never know....

Anonymous said...

A propos of nothing:

I am sick of lice.
I hate LICE!
They are evil!!!!

Anonymous said...

and on the medication front: I saw a commercial last night for something called "Enablex."

What do we suppose it does??

little gator said...

This is all Maggie's fault:

LOLScott Expotition:

We can has sled dogs?

Scott: Do not want.

They reach the pole and find this note:

"Oh hai. We was here first. you can has supplies. Norway REWLS!



Scott: we are made of fail.

Oates: I has a scurvy. DO NOT WANT.

I has a frostbite. DO NOT WANT.

I has a gangrene. DO NOT WANT.

Invisible foods. Invisible fuel oil.

Invisible everything? No, is blizzard.

Oates: brb.

Scott: Kthxby

feel free to expand on this.

Maggie Jochild said...

Drool and runny snot get to me, too. But not other forms of mucus. I mean, I learned to deal as a parent, though not to the point where I could wipe green snot stands from a nose with my bare hands like some parents seem to be able to manage.

Enablex is for "overactive bladder", though of course my mind came up with lot of more entertaining possibilities. Like
"He's said he'll veto, so just one more time, we'll pass the bill with everything in it he wants and then the NEXT time, he'll negotiate with us, I'm sure. Pass that bottle of Enablex, will ya, Nancy?"
Scott: Enablex for cocoa
Oates: Brb
Scott: Kthxbai

Jesse Wendel said...

Great story. 'Specially the anoxia. Makes perfect sense. Ya know, when you can remember it. *smiles sweetly*

And the "Crip Ward Tango" fucking RULES.

Maggie Jochild said...

Well, clearly my brain function level is pretty danged high. And the thing is, if I can reactivate a memory -- like, how to get from one point to another in Austin -- if I drive it, then the memory is completely back. So the memory is intact, it's the wiring that accesses it which got fried. Dr. Reading explained that to me, and I wrote a great poem about it, which I posted somewhere recently but I can't find it on this site. I'll reprint it below; forgive me if it's a repetition. (Anoxia girl.)

Two years ago, when I applied for the job I have now, I had to take a test over the phone to determine my level of medical terminology expertise -- which would help determine my pay scale. These questions were extremely hard, fifty of them. One was a three-parter: What general meaning do each of these suffixes signify, -osis, -algia and -itis? I got the first two right away (process or state and pain) but I was too long in answering the last; since it was over the phone, I had to answer right away, to make sure I wasn't looking things up. (-itis means inflammation.)

I obsessed about it for days, about missing one (or part of one) out of 50. Even though the test-taker said I'd scored as high as anyone ever did, I felt like not being to pull the meaning of -itis out of my brain was proof of my impairment. Finally a friend I trusted told me to get the fuck over it, to notice what had gone right instead of what had gone wrong. Some people can say such things to you and it helps instead of leaving you alone with your shit. So I got over it, and only remembered it tonight because of Jesse's joke.

I think "Crip Ward Tango" was a gift from g*d, I really do. You should have seen that audience when we finished -- about half of them disabled, from all over the world, every kind of disability you can name, and we'd just given them an answer to every mound of shit ever aimed at them. Those that could stand leaped to their feet and just screamed. A few people rushed the stage. The guy who did the Frankenstein bit, Adam, had roamed all the way downstage, right up in people's faces, as he did the performance of a lifetime (and that's saying something, because Adam was very, very good), hunching over and hissing "Frankenstein". Still makes the hair on the back of my neck go up when I remember it.

Adam and Mike, also in Actual Lives, were brain-injured as carefree young men in car accidents where they were hit by drunk drivers. One of the other guys in the car with Adam, named Patrick, went on living in what they call a permanent vegetative state, cared for at home by his mother who turned him every so often, fed him through tubes, kept him clean, and regularly played all kinds of music for him. Adam wrote this extraordinarily moving piece about spending time with Patrick and how sure he is that Patrick is still there, somewhere inside, enjoying the music and finding a way to have a good life. I believe Adam.

Terri Stellar's best-known performance was about being a dress-up kind of woman who longed for the feel of panties, but she has to wear Depends. It always brought a deathly silence to the theater at first. I mean, talk about the unspeakable. She eventually would have them roaring with laughter, as she demonstrated the moisture-retention capacity of these bulky undergarments with a bottle of water in one hand, a Depend in the other, and imagined everyday scenarios. At the end, she would shout "Depends for everybody!" and toss handfuls of them into the audience. I'd see people leaving the show afterward, clutching their program and their Depend like it was a souvenir.

Terry Galloway was born partially deaf because an Army doctor convinced her mother to take antibiotics during her pregnancy that were not good for fetuses. Because of her age (five years older than me), her parents were convinced to not let her learn sign language because it was believed children would never be "normal", i.e., they'd go off into the deaf community and have a real life there instead of trying to pass. So Terry learned to lip-read and speak, very convincingly, and then, just to demonstrate how butch she is, went into theater. She's grown slowly more deaf and is now having vision problems, too. I love her smarts and spirit almost more than I can express. If you EVER get a chance to see her perform or attend one of her plays (even if someone else is putting it on), don't miss it.

This poem of mine was recently published in the June issue of Wordgathering, A Journal of Online Disability Poetry:


Four of the air masks failed he says
Twelve men, eight oxygen packs
I shared mine with an older man
I don't know why I lived

While I was in surgery, my friends
decorated my room with pictures
Things from home, Xena toys
They cheered when I was wheeled back in
I could not recognize two of them
Later a nurse asked me about
the plastic sword; I told her
I had no idea. The only number
I could write was seven

My memories were still there
but my pathway had been erased
like ant trail pheromones wiped away
Years afterward I come up against
a void in the map
beyond this point are monsters
If I push on
the tunnel will clear
On the other side waits
remembrance, mine once more

We bury the dead with their memories
still encoded inside their brains
No spark to light the way again
No air to fill the sails

Copyright 2006 Maggie Jochild, written 28 April 2006, 7:28 p.m.

Wally Glendye said...

I can't belive someone else has had similar problems to what I have had.

My wife Sue and I bought a house in Middleboro back in 2001 and as we were moving the furniture in, I felt something tear in my left knee. Several weeks later I was up on a ladder and something popped in the knee and I fell to the ground. I had the knee examined and it was determined that I had a Meniscus tear and Osteoarthritis in both knees. So I had my left knee scoped in 2002 and shortly afterwards, I was walking across my yard and something tore again in the left knee which ended up being scoped again in 2003. After that operation, the pain got much worse and the surgeon asked me if I did tile work or cement finishing and I told him that I didn’t. So I asked the Doctor if my years of being on my knees on a raised metal floor might have something to do with it and he nodded and told me how much of a genius I was. I originally thought my injuries may have been from long distance running but the doctor told me that he would already be retired if every runner had knees like mine. The Doctor told me that the Arthritis was so bad that unfortunately at 45 years of age that I was heading for a “Total Knee Replacement”. This is not a normal operation for a young person because there is a much higher risk of infection because they are destroying very good bone during the operation and since I will be very active afterwards there is also a high risk for loosening the prosthesis. The pain eventually became was so unbearable that I really didn’t have much of a choice, I couldn’t sleep and the pain was causing me to vomit every day.

Months later, my right knee starting giving me problems and while walking, I felt it tear. So in the spring of 2004 I had the right knee scoped and during my hospital visit decided to schedule the TKR for my left knee. My biggest concern was to have a healthy right knee going into the TKR operation so this was the best time to go forward with the major surgery. In August of 2004 I finally had the TKR. (Total Knee Replacement) One month after the operation, and over the Labor Day weekend my knee started swelling, was oozing fluid at the bottom of the wound and was hot to the touch. Well, I called the Doctors office and he was out on his yacht so the on-call Doctor told me to squeeze out the fluid from the wound, which I did. The next day my Physical Therapist stopped by and looked at the wound and wanted me to call the Doctor again because it looked very serious. I arrive at the Doctor’s office and he immediately administers Novocain and cut the knee open and removes an internal abscess stitch (I had staples on the outside) that came loose. They then packed the inside of the wound which went up about six inches and started me on and I.V. The following day, when the packing was removed another stitch fell out. I continued with the I.V.’s and packing for another two weeks and then was allowed to dress my wound at home. The knee infection and wound stayed open for another six months before it finally closed.

When I finally got off of my crutches and was using a Cain but the left knee felt loose and wobbly. I then started to get right knee, right heel, lower back pain and burning in both hips. So I started Physical Therapy the therapist felt like I was walking up a step each time I walked on the left leg and as I walk back to the right, it feels like I’m falling off a step. The therapist had me lie down and measured both legs and he found the left leg is now .75 inches longer on the outside of the knee and 1 inch longer on the inside of the knee. He referenced my previous charts that he had from my previous surgeries and measured from my navel. He also told me that the knee is unstable and feels loose. I went back to the surgeon and told him what the therapist said and he told me to find a new one, which I did not.

The pain in my back, hips and all down my right side got worse and I was referred to Spaulding Rehabilitation Hospital. They measured me and came up with the same results; I am an inch longer in the left leg and because of that, I have developed Bursitis in hips, the lower back and my right knee. We tried all kinds of therapy for several months which included adding an inch onto my right shoe but not much changed. We then did a steroid injection into my right hip since it was the worst area and it helped for about a month. About two month later, we did the injections in both hips and the problems continued. The one option I had was to have a Total Knee Revision which is the last thing I wanted because of all of the past problems but the pain was so bad and the left knee was so unstable, I had to consider it.

I ended up at Massachusetts General Hospital and they wanted nothing to do with me. I then went to New England Baptist & Newton Wellesley and the same happened. I was finally sent to Milton Orthopedics and the Doctor there told me that No one will touch me because they fear that they may end up in a lawsuit and wouldn’t want to testify against another Orthopedic Surgeon. The Doctor at Milton told me that the “Replacement Surgery” absolutely failed and that only a revision could correct it. Since this was going to be very complicated, he wanted to send me to his friend who is the Chairman of Orthopedic Surgery at Brigham & Woman’s Hospital. So this gentleman does the surgery and informs me that the original surgeon used a 14mm polyethylene spacer (which acts as your cartilage) and an 18mm spacer should have been used instead. So in hind sight, I have had an extra ¼” of play in the left knee which made me over compensate my right side. He couldn’t correct the height problem but at 7 weeks Post-Op I had no pain anywhere.

It is now 8 months since the operation and everything that could go wrong, has gone wrong. My hips are on fire, I continue to roll my right ankle at least once a week, my P.T. has given up and is disgusted because the knee joint is looser than ever and he believes that a new knee needs to be installed. My back is a mess and sitting, walking or standing for more than ten minutes is very difficult. There is multiple areas of pain and my guess is that you can block out several areas like I do until it’s time for sleep and then you feel it everywhere.

I don’t know what the future holds but I appreciate what you are going through!

little gator said...

Scott's last entry:

I'z dyin. HALP!

Maggie Jochild said...

Thanks for sharing, Wally.

Yeah, when I stand entirely on the new knee, I'm almost an inch taller than when I stand on the old knee. But I'm not walking enough, I don't think, to have it affect my body's alignment.

The things they don't tell us....


Anonymous said...

Christ, you folks are scaring me....

My right knee is still hurting from that twisting/locking incident a few weeks ago. This is unusual. Previously, it's only hurt for a few days after....

My lice comment from yesterday was due to working in the school office, rather than a classroom yesterday. There were no fewer than 4 cases of lice (nits, actually) that required extensive head checks and calling obnoxious parents to inform them that they needed to leave work and pick up their infected children.
I can totally understand how that would be really difficult, but you don't have to take it out on me!!!

little gator said...

add just after sled dog comment:

OMG! Ponies!1!!!!1!!

Is not so gret atually.

Anonymous said...

I know I shouldn't laugh at the ill fated frozen white boys, but Gator, you're cracking me up!!

how's this:

-Is cold. Is sooo cold...
-Oh noes!!!
-I meant Oh, nose! My noses froze!!!
-Oh noes!
-oh, nose!

not up to your standards, I'm afraid....

Anonymous said...

Here's my Enablex commercial:

Black and white video, angled shots as woman says in grave voice:

"His anger was the worst. The drinking made him a different person....I didn't know what to do..."

Then, full color, shots of flowers and fields and a cheerful chorus singing. The woman, now happy:

"Then I found Enablex and life hasn't been the same since!! The fighting stopped! My mood improved! I buy him his favorite beer now!"

sorry, I realize that this is evil, but, hey, apparently I'm Satan this week.....