Sunday, February 14, 2010

I will spend half the day in twilight sleep and then I will go home to watch the Lifetime movie 'My Stepson Is My Cyber-Husband.'

Happy Anna Howard Shaw Day.

On February 4, 1990, my mom drove me to the Shriner's Hospital for Crippled Children in Chicago, Illinois and checked me in for surgery. On February 6th, I underwent surgery on my right leg. Doctors jammed six pins -Kirschner wires, a bit thicker than bike spokes- through my tibia and fibula; three on top about an inch below my knee, and three on the bottom just above my ankle. They attached the pins to two circles of metal and then attached four rods to these rings. Around the rods were four ... turny things. Dials, I guess you would call them. They put four different colored stickers on these dials: red, yellow, green and blue. Four times a day, these dials were turned -at the same time- to a different color. Each turn equaled a quarter of a millimeter, so at the end of the day, my right leg was one millimeter longer. My goal was three inches. The procedure is called the Ilizarov.

A little history for the newbies: I was born with a disorder called Hemihypertrophy. Or, as it is apparently now called, Hemihyperplasia.

Hemihypertrophy is characterized by unequal (asymmetric) growth of the cranium, face, trunk, limbs, and/or digits. Hemihypertrophy can be an isolated finding, or it can be associated with certain malformation syndromes. Isolated hemihypertrophy refers to hemihypertrophy for which no cause can be found. The degree of asymmetry is variable and very mild cases can go undiagnosed. There are three categories of hemihyper-trophy, depending on the body parts involved. The size difference can involve only a specific part of the body

such as a finger (called simple hemihypertrophy) or an entire half of the body (called total or complex hemihypertrophy). It usually involves only one side of the body, but can involve both sides (called crossed). There is also hemifacialhyperplasia , which involves one side of the face. Usually multiple organ systems are involved, i.e. the skin, vascular system, internal organs, or bones. In complex hemihypertrophy, the right side is more often involved than the left.

Hemihypertrophy may involve not only the part of the body that is visible, but also the underlying internal organs. Enlargement of one kidney, adrenal gland, testis, and ovary has been reported. The enlarged area usually also has thickened skin, more sebaceous (sweat) glands, more hair, may have pigmentary abnormalities, and the bones may be larger or may be deformed. In persons with facial involvement, the asymmetry can include cheek, lip, nose, ear, eye, tongue, jaw, roof of the mouth, or teeth.

The nervous system may also be affected, causing unilateral nerve enlargement or sciatic nerve inflammation. Occasionally a part of the brain is affected causing mental retardation (15% to 20% of cases). Many cases of hemihypertrophy have hamartomatous lesions (birth marks which involve blood vessels) or abnormalities of the genito-urinary system.

As with other overgrowth syndromes, there is an increased risk for childhood cancers in people with isolated hemihypertrophy (about 6%), particularly cancers of the kidney (Wilms tumor, 3% of individuals), adrenals, and liver.

The entire left side of my body is involved. Lucky me. I have 14 scars on my leg and no feeling along the top of it. And also arthritis. And a bad back. Three cheers for deformed freaks destined to die alone!

But I digress. I had a pretty normal childhood, except I had to go to the hospital every six months to have spinal taps and ultrasounds and other weird tests to make sure I wasn't carrying around any nasty tumors or whatever. I also suffered excruciating leg pains. The only thing that helped dull the pain was to lie on the couch and have someone sit on my legs.

My right foot is almost two sizes smaller than my left, so shoe shopping has always been the bane of my existence. So much so that I have never walked out of a shoe store without crying. A few years ago, I found out that Nordstrom has a policy where you can buy a mixed pair of shoes, as long as your feet are more than a size in difference. So I went there and bought my first pair of running shoes. I walked out of there with tears in my eyes, but they were happy tears.

Anyway, when I was a kid, I wore a lift in my right shoe. I don't remember this at all, but my mom insists it's true. When I hit my teens, I apparently stopped wearing the lift. This I do remember -- I used to walk around with only one shoe on. I'd take of the left one so that my legs would be even. It didn't really help, and I started getting really bad back pains, so my mom took me to a cobbler and had them build up the sole of my right shoe. When we got them back, I cried because my right shoe looked like it belonged to Frankenstein. I refused to wear the shoes.

Not long after that, my mom read an article in Parade about the Gavriil Ilizarov and his limb lengthening procedure. She asked me if I was interested; I said yes, and she took me to see a doctor. This was the day we got lost and ended up in Cabrini-Green. I never forgot that day, not because of Cabrini-Green, but because I was so humiliated. I was evaluated by a doctor to see if I was a good candidate for the procedure. That was pretty standard, but then I was led out into a bigger room with low windows looking out over the 'L tracks. There was a long platform down the middle of the room, and I had to walk up and down it for an eternity while a team of doctors watched, made comments, poked and prodded me. I was so ashamed; I never felt more like a freak in my entire life.

At the end of the ordeal, the doctor said that while my "condition" was substantial, the Ilizarov procedure would be considered cosmetic surgery. I guess my crippling leg and back pains weren't significant enough. He said that I had two options. Three, I guess.
  1. Do nothing.
  2. Have the Ilizarov surgery and stretch my right leg three inches.
  3. Have three inches of bone removed from my left leg.
I was 15 years old and 4' 11" at this time. My mom said the decision was all mine; she wasn't going to push me one way or the other. My height and the fact that the doctor said that removing bone from my leg was a more involved procedure, bloodier and more painful, made me opt for the Ilizarov.

There was no way we could afford the surgery, and that is where the Shriners came in. Long story short, I went in for a consult at the Shriners and was scheduled for surgery on February 6th.

The night before the surgery, a doctor came in and wrote "NO!" in Sharpie on my left knee. "So we know which leg to work on tomorrow," he told me. Jesus christ. The morning of my surgery, my mom and sister showed up to hang out. They'd brought me a goofy balloon with streamers for arms and legs. In the pre-op room, they put me on a gurney and gave me some fun drugs. I don't remember it, but apparently I had a long conversation with the balloon. The last thing I remember is the anesthesiologist putting a mask over my mouth and nose and telling me to count backward from ten.

When I woke up, I had another mask over my face. I opened my eyes but couldn't see clearly. There was condensation on the inside of the mask, and it bugged me. When I tried to rip it off my face, a nurse came over and put it back, telling me I was in post-op and had to rest. So I fell back asleep. I woke up again in the elevator, then again in my room. It was dark. The curtain was pulled around my bed and one overhead light was on. I was dying of thirst and in incredible pain. My mom and sister were there and they fed me ice chips. They told me I was on a morphine drip and could hit the button every two hours. My leg felt weird, but I was too afraid to look down at it.

The morphine got me through the first couple of days, but then they wheeled it out and I was left with whatever pain was leftover. Besides the pain, I'd also developed a bad case of woe-is-me. The first thing I said to my mom when I woke up from the surgery was, "I made a mistake. Tell them to take it back." Hahahaha! So young. So, so stupid.

After a week, the nurses got sick of me moping so they dumped me in a wheel chair, pushed me out into the hall and told me to go join the other kids in the mall (the common area). "Oh, that's nice. You're just going to leave me here?" No answer. I'd never wheeled myself around before, so it took some getting used to. I had to keep my right leg elevated, so when I ran into things, my sensitive and aching limb took all the impact. I was only 15 but my dad was a truck dispatcher and I had (have) quite a mouth on me. I made my way out to the mall and mingled with the other kids. We played wheelchair basketball and bingo and one day had a pizza party in the conference room. There was a paraplegic named Nick who roomed a few doors down from me and my two roommates. The other girls and I all had a crush on him and would fight over who got to feed him pizza. There was a girl named Tina there who had Down Syndrome, and she really had a crush on Nick. For some reason, the nurses would wheel her bed out into the hall at night and there she would lie. Five feet from my door. Yelling. All night. "Niiiiiiiick! Niiiiiiiiiiiiiiiiick! NIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIICK!" I would lie in bed, defeated, waiting for the snack cart to roll it at midnight so I could drown my sorrow in chocolate pudding and Stephen King novels. The man in black fled across the desert and the gunslinger followed...

The week after my surgery, I started physical therapy. Normally, stretching isn't painful, but when you've got a broken leg and bike spokes jammed through your muscles and bones, it's a shrieking agony. They let us bring our own music to listen to during our sessions. Megadeth's So Far, So Good...So What! was on heavy rotation those days. My PT hated it, as did Tina, but this bitch didn't give a rat's ass. I was in pain, I was tired and I was angry.

From the wheelchair, I was upgraded to a walker. When my family visited, my sister took a lot of pleasure in helping me limp around the mall, mostly because she got to walk behind me, holding onto a strap tied around my waist. It was like walking a lame dog. From the walker, I upgraded to crutches, all the while enduring my rage-fueled physical therapy.

In addition to the physical therapy, I also started extractions a week after my surgery. This was the term for turning the dials and stretching my leg four times a day. Something about the procedure affected blood pressure, and I had to check mine four times a day. I was also encouraged to walk as much as possible, since it stimulates bone growth. I also had to do pin care twice a day. This involved removing the gauze squares from around the pins and the foam pieces wrapped around the pins (their purpose was to keep my skin pushed down so that it wouldn't "adhere" to the metal) and cleaning the sites with Qtips and a saline solution. This was to (again) keep the skin from sticking to the pins, keep the sites clean and stave off infection.


Once I got the ok to go home, I continued my physical therapy (and extractions) on my own. My doctor told me to drink a lot of apple juice, and to this day I'm still addicted to it. It was important for me to do my exercises because if I didn't, my joints would fuse. I wasn't diligent enough, I guess, because I lost some range of motion in my right ankle.

In July, five months after my surgery and two months after my dad died, I went back to Shriners to have the Ilizarov removed. I was a little alarmed at first because the doctor said they were only going to give me a local anesthetic and I would be awake for the procedure. Thankfully, they changed their minds and I was once again given the good drugs. This time, when I woke up in my room (same room, same bed), I had a navy blue, hip-length cast on my leg. And there it remained for the hottest month of the fucking year. Oh, I was in agony.

After the cast was removed, I was fitted for a walking brace. I had to keep that sucker on for six months, but I didn't really mind. I was glad to be rid of it all and walking normally again. Toward the end of my Ilizarov days, I was walking without the aid of crutches, but it was an awkward walk, since I had to stick my right leg out a big; the lizard (as we all came to call it) was bulky.

And so that was my experience with the Ilizarov. I had no idea what I was in for, but if given the choice, I'd do it again in a heartbeat. Sure, I got arthritis when I was 27, but the doctors told me I would have gotten it anyway, given how uneven my body has been my entire life.

Anyway, that was 20 years ago. TWENTY YEARS. How am I this old?

No, really. How am I this old? The other day, my co-worker said, "How old will you be next month? 38, right?" BIIIIIIIIIIIITCH.

In other news, I won a replica 1960 Team USA jersey. I SHIT YOU NOT. I woke up, read the e-mail, went back to bed, woke up and wondered if I'd dreamed the whole thing. Excited isn't a good enough word to describe how I felt and still feel. I never win anything. The way things have been going lately, this really helped cheer me up. You can win one, too!

In other other news, my friend J and I are planning on taking hockey lessons. I learned to skate when I was a kid. Growing up in the midwest, you get really cold winters. There was a pond not far from our house, and every winter it would freeze over and somebody would shovel a bunch of snow out of the way so folks could skate and play hockey. The last time I touched a pair of skates was 12 years ago, when I was living in upstate New York. My roommate had to tow me around the rink because I couldn't stay on my feet. After about an hour of that nonsense, I limped off the ice and sat on the bench. A guy in hockey gear skated over and told me to rent hockey skates next time. "They're sturdier and have more support in the ankles. You'll be able to stand up in them." I was really glad he'd watched me make a fool out of myself for sixty minutes before deciding to give me that little tidbit of information.

Anyway. First we have to take skating lessons, then we can take hockey lessons. And then I will be free to bash the hell out of people. Ok, maybe not. But I can try.

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