Friday, October 5, 2007

MY KNEES (PART ONE) -- DIAGNOSIS

(Bill and Maggie Barnett, trailer park, Pecos, Texas, summer 1961; Bill is 2, I'm almost 6. Crooked-legged children)

When I was 43, I developed a click in my right knee when I walked. It was loud enough that other people heard it, so I went through my HMO and finally to a sports medicine orthopedist who took x-rays.

I sat in the exam room, perched sideways on the table reading the big full-color posters about joints, until he came back in with the x-rays and slapped them up on a lightbox. He stared at them for a minute, then sat down on his rolling stool and slid over to me. Looking up at me, he said "I don't think you've told me the whole story. Nobody's ever talked to you about your legs before?"

"No" I said, feeling like the Eye of Sauron had just noticed me. "I mean -- I was asthmatic, I didn't run around much. My legs always hurt, and at night when I cried, Mama said it was growing pains."

"But you played basketball in high school?" he asked.

"Yeah. Captain of my team. But we were a crappy team, and I wasn't very good. And it hurt like -- blazes."

He said "Would it be all right with you if I called in a couple of my colleagues?"

Doctors can be so incredibly stupid. I said "Sure", wishing I had anybody at all I knew in the room with me. He slid to the door, opened it and called out a couple of names. Two more men came in, one of them his trainee, Patrick. Patrick was who had taken my original history, and I felt a slight degree of comfort with him.

They clustered in front of the lightbox, talking among themselves for a minute. Then Patrick turned and came over to stand beside me. Finally the surgeon slid back to my side of the room and said "You have congenital abnormalities of both tibia. I've never seen anything like it."

"Congenital -- like, from birth, you mean?"

"Yes." He used a few more words I didn't understand and said "Maybe if it had been caught when you were a child, maybe bracing would have made a difference -- or surgery, but they wouldn't have known how to do the right kind of surgery that far back."

The second doctor left, but Patrick stayed.

"So -- what's the verdict for my knee?"

"Both knees" said Patrick gently.

The surgeon said "You have no cartilage at all left, in either knee. It's bone on bone, and the two interfaces don't meet squarely, so -- " He scooted back to the lightbox and began pointing things out. "To compensate for how your lower legs splay outward, your body has been laying down bony outriggers from the femur downward, here and here, both sides. But now, on the left side, the bone spur is abutting your tibia, and on the right side, we think a bit has broken off and entered your knee capsule. We think that's the click you hear. The right knee is in much worse shape than the left, on the x-ray. How much pain are you in?"

"None at all. I mean, no more than usual. It always is uncomfortable to walk, but I've just toughed it out."

"Stop doing that" he said. "You need to listen when your body has a limit."

I stared at him. That wasn't what Mama had taught me. Mama said "Use it up, wear it out, make it do or do without." The working class code, and it applied to bodies as well as everything else.

"What do I do now?" I whispered.

"There's a new drug, Synvisc, that looks like it helps lay down joint lubrication, like a replacement for cartilage. We'll put you on that, but it has high GI side effects, so we need to test your liver and kidney functions regularly, maybe put you on gastric protection as well. And -- well, long-term, your knees won't last. You already have the knees of somebody who's 70 or 75. I could maybe do a surgery where I break the tibia and reattach them, it's never been done but I could think about it." His face was lit up with the prospect of experimental surgery. "Or, baseline, you'll need knee replacements. Both sides. But they only last 10-15 years, and we can re-do 'em once, but after 5-10 years on the second replacement, you're done. So we need to hold off as long as possible on that, to last out your natural life span. In the meantime, I'll do an arthroscopy on the right, clear out any bone fragments, take a look-see, and inject it with steroids before I pull out. Should buy you a while."

He began writing in the chart. Patrick put his hand on my shoulder and said "Did you drive yourself here?"

"Yeah" I said. "I'm okay. I'll -- I just need time to let it sink in."

Birth defects. And nobody ever noticed. The invisibility of the poor, and of girls.

I went home and looked in my photo albums, at pictures of me as a little girl. And suddenly I could see the deformity, clear as day. In fact, my little brother had the same shape to his legs. He'd worn braces briefly as a baby, I remembered.


I called my father to ask him what the diagnosis was for Bill's braces, but he didn't even remember that Bill had worn them. I called Bill, then, and we talked for a long time. He said he was starting to have severe trouble finishing a round of golf. He kept saying "God fucking dammit, I can't stand the idea of surgery, you know that, sis." He asked me if I thought fact that Mama drank 17 cups of coffee and smoked 2.5 packs of cigarettes a day while she was pregnant with us, could that be why we came out with funky legs. I said "Might as well, can't dance." We laughed, hard, and he said "God fucking dammit" again.

I began the Synvisc, and a month later had day surgery arthroscopy. It went well, and the click disappeared. But within a year, I began having pain in my left knee. The pain grew, and the surgeon's explanation -- that the spur impacting my tibia was created a bone bruise -- had no time limit in it. Eventually I went in for an arthroscopy on the left. This time, I had spinal anesthesia, and during the surgery I woke up. I wasn't in any pain, but I knew exactly what was going on for a little while, until I freaked out the anesthesiologist by turning to talk with him and he put me back under.

The surgery helped some. I noticed that my port scars from the arthroscopy all keloided, but nobody explained what that might mean on a bigger scale. Eventually they stopped seeping.

That bought me another year, but the pain came back, worse than ever It wasn't just bone or joint pain, it was as if my nerves were involved. My best description was as if someone had cut open my knee, poured in a handfull of ground glass, and sewed it back up. It hurt every minute of the day, whether I moved or not, no matter what position I was in.

I stopped going anywhere. I got a cane but still could barely walk. I skipped meals because the walk to the kitchen was too much to handle. The flight of friends began; they didn't want to see what was happening to me, even if I didn't talk about (and I didn't talk about it unless directly requested to do so.)

Finally I said "Give me a new knee, I can't wait any more." I saved up money and sick time, planned it all out, watched a movie of the surgery, laid in resources. I scheduled it for July 25, 2000. The surgeon said I should be out of the hospital and inpatient rehab within 8-9 days, which meant I could be home for my 45th birthday. I considered the surgery my 45th birthday present to myself.

What I didn't know is that the estimates for outcome given at a sports medicine center are for athletes -- young, conditioned people without other disabilities. Best case scenarios.

(to be continued)

LIGHT TO DARK

I woke up once
Coming into blinding light from dark
I could feel him leaned
against my side, warm and thick
There was a clank of metl on
something else and percussion
traveled through me. No pain
I was left with
only the upper half of my body

He muttered I can't get a purchase
There was another clank and shock
I turned to the man at my head
focused on dials and tubes
With a small laugh, I said
This is unpleasant, yes?
He startled and did not laugh
with me. Instead, the dark
returned


© Maggie Jochild, 26 May 2006, 11:12 p.m.


MUCHO BOY

Carol who at 25 has had both hips and knees
Replaced, who used to be a dancer and still
Is, except with Lofstrand crutches and an audience
That looks away -- Carol told me since I could not
Qualify for in-home help and still I had to eat
About the drive-up grocery stores, three of them
All in the poorest side of town, where groceries
Cost much much more because they can get away
With it, and I should check the expiration dates
On everything, but I am good at taking what comes
And now I can have milk and eggs
Just driving up in my old van

My favorite is the Mucho Buy
Because the guy who works there nights
Is gay. His eyelashes must make boys squirm
And when he hands me out my bag
Of purchases, his arms are smooth
And beautifully deft. He is always
Patient. I can tell he is some kind
Of Arab immigrant but not which country
And I am ashamed to ask. Last night
I needed cat food, laundry soap
And dishwashing liquid. When he
Brought back my three items
Every package was a shade of pink
I thanked him for his selections
I hope they pay him what he's worth


© Maggie Jochild, 19 March 2004, 3:30 p.m.

5 comments:

kat said...

good lord.

I've been having a very touchy day, emotionally. I've been really insecure and stuff.
Now I'm just terrified. It must sound incredibly selfish to take this comment to talk about myself, but I'm reading your experience and am frightened of my own future.

I was born with a tibial tortion (I don't know how to spell that). Only in one leg, as far as I know, but I've always had issues with my knees, and after the teenage years spent figure skating, I was told that at 16 or so, my knees were like those of a 45 or 50 year old.

By the time I was learning to walk, doctors had decided that braces were arcane and old fashioned. My mom just had to watch me trip through life with a weird hitch in my gait.

I don't think I'm nearly as splayed as you or your brother, though.


Back to you, now. Your poetry is unbelievably stunning.
I'm interested to hear parts 2 and beyond of the saga.

shadocat said...

God Maggie, your story and poetry just make my spine tingle---and I'm not just saying that because I need back surgery. Do you ever wonder, as I do, what our lives would've been like if we didn't have to just wear ourselves out? I tell myself not to look back, but I just can't help it...your writing really articulates my pain...

Jesse Wendel said...

Beautiful writing Maggie.

I'm left inside the incident, knowing "this is going to hurt."

little gator said...

Tell me whatever you want, about amything. If it's too much I'll say so. or stop reading.

Your comment about your mother's coffee and smoking made me wonder whether it was genetic or environmental. There are
many conditions where about 1/2 the children of a couple get the condition.
BUt you and Bill had more in common then genetics, as nearly all siblings do.

Were your older brother's knees ok? Do you know of knee weirdness in earlier generations of you family? Any cousins? Did your brothers have any children and if so, what were their knees like?

Not that you can do anything about it now.

For the confused, "congenital" means you were born with it. It doesn't mean it's inherited, though many congenital things are. Some birth defects are caused by freak accidents in utero and they too are congenital

For instance, when a baby is born with a limb missing it may mean something stringy in the amniotic fluid(I forget the name) got wrapped around the developing limb and effectively amputated it. This is congenital but not inherited,

Maggie Jochild said...

Wow. And here I was wondering if I should actually post this stuff.

Okay, then.

Kat, I'd say go to a good doctor (NOT a surgeon -- surgeons have only a hammer so everything looks like a nail) who knows about bone stuff and get recommendations for physical therapy, diet, etc. One thing I can say right now: Avoid stairs. Drink milk. And -- being in a wheelchair is an okay alternative to surgery, don't let 'em scare you. I also derived a lot of good from herbal consultations and craniosacral therapy.

Yeah, Shado, I do wonder. Some lessons you learn from hardship but it also grinds you down, and I just don't believe human beings would stop learning if they didn't suffer unnecessarily. I know you get it.

Thx, Jesse. Yeah, it gets worse before it gets better. And then worse again, but in a different way. The pain I have now, while 24/7 and varied, is not (to my memory) anywhere near as bad as what I had that year before I had my knee replaced. Even so, I'm not sure I'd do it again, if I had the chance to go back and reconsider. Certainly I'm not planning to have my right knee done. The disabled people I've known who've had multiple surgeries are, like me, fanatically anti-surgery for anything to do with appearance or even functionality, if there's an alternative.

little gator, I keep learning from you. Yeah, it's just me and Bill. No one else in the family has it, and since I've done extensive genealogy, I have a long view of my physical ancestry, I can say that with a little more authority. Thanks for all your insight, though.