(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.
(Self portrait by Liza Cowan, copyright hers 2007)
(Photograph by Liza Cowan, copyright hers)
(Self-portrait by Liza, after a day of painting, showing necklace made for her by her oldest daughter Willa)
