Tag: deformity

I have been told my scars do not define me, but this is false.  My scars are the definition of how I have become me, every last one of them.

I was 23 when I first became ill.  It was the oddest thing; one day I just noticed that my foot had been hurting for a while and the almost imperceptible pain now manifested in a very perceptible limp.  I didn’t even know how long it had been hurting when I took myself into the student health clinic, and believed the doctor when he convinced me I had sprained my ankle without any recollection of doing so.  I took some satisfaction from the knowledge that I was right, that it really DID hurt as much as I was making out, when I was admitted to the hospital a week and a half later with a soft tissue infection which had become septic.

The weeks that followed were a series of trials and travails seemingly crafted by fate to test the depths of my nearest and dearest fears.  My leg was dissected down to the bone across my foot in multiple gashes and up the length of my leg from the ball of my foot to my knee.  These gashes were left open to drain the infection and three times a day I lowered my leg into a whirlpool tub of betadine and cringed and screamed while the excised flesh and muscle swirled around in the eddies.  Each surgery seemed to bring back larger gashes and more loose flesh as my surgeons fought to locate and remove all of the necrotic tissue.  At last my fevers stopped spiking and the pain plateaued; the surgeons tried to sew me back up, but my skin had contracted.  In one surgery, they placed rubber bands across a gash with staples on either side to try to stretch the skin closed.  I awoke from that surgery screaming and it was hours before the surgeon found the right pain medication to allow me to sleep.  Inevitably when the incisions would not close, the surgeons resorted to skin grafts which were taken from my rear end with an implement they must have picked up at Pier One in the gourmet cheese slicer aisle.

I was released from the hospital seven surgeries, two near deaths, and four ridiculous complication setbacks after being admitted, and from there I began physical therapy to learn to walk again.  I visited my physical therapist three times a week, and saw my doctor weekly.  During these doctor visits, he would look at the angry red skin graft sites which were not healing, shake his head in confusion, and pull out a pair of scissors and silver nitrate to cut back the inner tissue that was growing out of the weeping wounds and burn the edges to cauterize them.  This pain was so great I could not physically keep my leg from shaking and the nurse would hold me down while I cried and apologized for not having better muscle control.  Two months of this ritual had me walking in short stints with a cane, but in horrendous pain, and I finally saw a different doctor who decided all was not right.  This doctor is the reason I swear by female physicians.  Instead of writing off my tears as feminine mental weakness, she scheduled an emergency MRI; it was this test that likely saved my limb and my life as it was the MRI that found the infection had returned, had eaten every bit of cartilage in my ankle, as well as half my calcaneus (heel bone), and was working on eating my leg bones and most of the remaining bones in my foot.  I was referred to the University of Washington Medical Center in Seattle and left the next day.

The diagnosis was osteomyelitis and the treatment was fairly straightforward – a pic line (which is just a thick tube to carry heavy medications) was inserted into my left forearm to feed the strongest antibiotics my body could handle directly into my central bloodstream.  This would remain for two months and I would deliver IV antibiotics at home three times a day until the infection was cleared.  The next part of the treatment was to cast my foot so that it could not move and risk spreading the infection to the rest of my body.  The rest of the treatment was more complicated.

The prognosis for an ankle which has no cartilage is not very optimistic.  There is no “fix” for this situation.  A total ankle replacement is an option to replace the damaged joint, but as it only lasts a decade or so, it is not an option in a 23-year-old woman, and it isn’t an option for anyone who has live infection crawling through her bones regardless of age.  The next best thing is a fusion – pins or screws hold the ankle in place and the leg bones grow into the ankle bones until there is no more ankle.  Due to the infection, it would be many months before I could consider this option as well.  I remember staring at the corner of the hospital room walls as the doctor gave me my last option and recommended it as the best option to get me mobile and active again: a below-knee amputation.  My mother was standing there and became livid.  Her voice grew strained and she snapped at the doctor that it was certainly too soon to be considering something like that.  I just kept staring at the wall pretending it wasn’t real.

We left Seattle after a week with a box full of IV antibiotics, a tube affixed to my arm, and no real plan beyond finishing all the medication.  Two months later I had the pic-line removed and a week after that, I found out I was pregnant.

This is where the story veers off course.  The pregnancy changed everything.  I couldn’t do anything about reconstructive surgery while I was pregnant, and I just kind of forgot about my foot for a few months.  I wore a walking cast when I walked any great distance, used a cane when it hurt, and wore shoes with heels, even putting lifts in my athletic shoes, as my foot had dropped to a 40 degree angle and without ankle mobility it was stuck like that.  I walked like this, on my toes, gingerly at first as the bone on bone grated and swelled in protest, and in time less gingerly as the joint stopped hurting because the bones grew together on their own.  My pregnant body spread its healthy glow over every nook and cranny of my being as I gained weight, increased my blood supply, and infused myself with healthy nutrients and vitamins.  By the time my son was born, I was in excellent health at an ideal weight- my only issue was a bum ankle.

And the scars.  They were obtrusive in the beginning, angry and red.  A thick, lumpy line ran up the inside of my calf.  The left cheek of my derriere was marred with two bright red rectangles that mimicked the large stamps one sees on an old-timey trunk shipped from overseas.  After the birth of my son, I also had stretch marks along the back of my thighs and a jagged c-section scar across my lower abdomen.  My collar-bone was speckled with the remnants of where intravenous central lines had been stitched into my skin.  My foot was freckled with the keloid-rimmed skin grafts that patched together my ravaged flesh.  And the limp, no matter what shoes I wore or how I tried to lead with my hips, I could never quite erase the limp.

In the beginning, these scars defined me and made me feel less than those around me.  They dictated what I wore in public, and how I acted.  I could never pretend to be seductive or attractive again, because I knew these scars were buried beneath whatever façade I hid behind.   They demoted me from the leading lady in the realtime drama that was my life to the quirky sidekick who was only around for comedic relief.  Other women were beautiful.  I could now only have character.

My scars made me grateful rather than in love when my boyfriend and father of my child selflessly agreed to marry me.  They made me tolerant of a life bereft of love, empathy, real kindness or consideration.  They made me give up on my dreams of happiness and learn to settle, to put up with a man who took his anger and stress out on me, to shrug my shoulders and remind myself that I didn’t deserve more when my husband forgot my birthday, our anniversary, and Christmas.  My scars made me feel lucky when my husband told me I could go back to school, as long as it didn’t cost him a dime and I found a way to pay for childcare on my own.  My scars made me embarrassed to wear a swimsuit in public, or shorts, or anything that didn’t cover my calves up to my knees so as not to offend others with my less-than-beautiful skin.

I had three children.  I went back to school and graduated with a degree in engineering right after the last one was born.  My mother celebrated my graduation with a barbecue and I received a few gifts, but none from my husband.  I was so lucky he stayed married to me with my misshapen leg and hideous scars.  I began working and found that my scars did not matter as I began to excel professionally as an engineer.   I wore modified tennis shoes when I walked the construction site for twelve-hour days as a field engineer in the summer.  I wore pant suits with heels as I networked with state funding representatives for my company.  I stopped thinking about my scars and I started feeling that perhaps I wasn’t so lucky to have a husband who tolerated me any longer.

I left my husband, moved to Portland, went through the struggles of moving my children with me, through job loss and near starvation, and clawed my way to a position in a corporation with a real future and the ability to support my family single-handedly while paying child support to that tolerant husband who refused to find a job paying taxes.  I filed bankruptcy, I paid off debt, I started saving for retirement and put my life back on track.

I met someone wonderful.  Someone who saw my scars and my limp and dared to call me sexy and beautiful and everything he ever dreamed of.  My foot was getting worse, though.  The toes were curling up as the tendons under my foot contracted over time and surgeries to cut the tendons were only a temporary fix.  I was referred to a surgeon who specializes in limb deformities and she gave me a solution.

A few weeks before the surgery, I sat with Patrick, the love of my life, and discussed my scars.  I talked about getting a tattoo to cover the line going up my leg and he scoffed at the idea.  He said my scars only leave him in awe of what I have been through and what I have accomplished in spite of them.

He said my scars do not define me.

But they do.

My scars today tell the story of a life’s journey from a woman who thought nothing of herself to a woman who learned her real worth.  My struggles and my triumphs are etched on my body.  They speak of pain I have endured, and they speak of survival.  They murmur memories of torturous pain and the persistence to keep living exactly as though nothing was wrong.  They remind me of the early days when I could not walk, of my mother’s cracked voice when the surgeon said amputation, and they remind me of each newborn child laid upon my shoulder to kiss their cheek after they’d been pulled from my belly.

I will have new scars soon, and these scars will define me further.  They will tell the story of my rebirth as my foot is straightened over a period of six months in an external frame affixed to my bones.  I welcome these scars and the new world they will usher in as I am able to walk without pain again.  I look forward to the rest of the story my scars will tell.