Thursday, June 20, 2013

My Chains Are Gone

muscular dystrophy, orthotics, charcot marie tooth

"My chains are gone.  I've been set free.  My God, my Savior has ransomed me.  And like a flood His mercy rains, unending love, amazing grace." (Amazing Grace (My Chains are Gone) - by Chris Tomlin

Everybody has a secret - whether good, bad, exciting, embarrassing, frustrating, or one that causes great struggles.  The secret for me was embarrassing, frustrating, and one of great struggle.  The picture you see is of my "legs" which have supported me and helped me to walk and stay mobile since October of 2006.

On December 16, 1992, just before Christmas, I suffered an injury while lifting.  That injury consisted of the bulge, herniation, and rupture of 3 discs in my lower back, 2 discs in my upper back located just between my shoulder blades, and the tearing of almost every muscle in my back.  My back was a mess.

I was in physical therapy in an attempt to help me recover.  As I struggled through the ungodly pain, things started to change.  Simple things like putting on a pair of earrings became extraordinarily difficult.  I noticed I couldn't feel things I was touching.  And then I started falling.  I'd walk on the sidewalk and if my foot went onto the edge between the grass and the concrete, I'd fall.  If I stepped on a pebble, my ankle would turn and down I'd go.  Heck, I could be standing still and I'd fall over.

The neurologist I was seeing said it was because of pinched nerves and I needed to undergo a risky surgery to fix the problem.  I sought a second opinion and was able to get in with the Chief of Orthopedics at Baylor Hospital in Dallas.  With my mother accompanying me, we met with this doctor who took one look at me and negated the surgery and instead called his best spine orthopedic and sent me to him right then.  This doctor not only concurred with the Chief of Orthopedics' opinion but also determined that something else, separate and apart from the injury, was creating these problems.  He called the head of neurology and sent me over immediately.  Being sent to a 3rd doctor in as many hours caused an uneasy feeling to start growing in the pit of my belly.

After an examination and an Electromyogram, I was told I have Charcot-Marie-Tooth disease.  I looked at him like he had a third eye and asked "I have a shark disease?!  I haven't even been in the ocean for several years!".  He smiled gently and told me I have one of the diseases covered by the Muscular Dystrophy Association and then spelled out the name of the disease. He asked if I had feet like anyone else in my family.  "Yes, my Dad.".  He immediately wanted to see him, so my Mom and I ran to their house, picked him up and brought him to the doctor.  After an exam, the doctor confirmed the genetic link.  An appointment was made for me with the MDA Clinic at the University of Texas Southwest Medical Center.

In July of 1993, I was seen by the specialist at the MDA clinic and the diagnosis was officially confirmed.  I have Charcot-Marie-Tooth Disease, aka CMT.  An inherited peripheral neuropathy - which is a nicer way of saying:  losing normal use of extremities due to the degeneration of the nerves and loss of muscle.  My prognosis was that I should stay about what I was at that time.  My how little they knew.

As time passed over the years, I kept losing strength and muscle.  The MDA doctor admitted he hated seeing me because I was his only case he couldn't figure out.  He'd say I was going to continue declining and I'd hit a plateau and stay the same for a period of time.  He'd say I was on a plateau and I'd start a steep downhill dive.  Being a typical redhead, I kept him guessing.  And then it all seemed to culminate in August of 2006.  I woke up one morning and fell down as I tried to get out of bed.  My legs were like jelly.  I was exhausted after walking less than 10 feet.  My hand strength had decreased dramatically as well.  I called the doctor and was told I'd need leg braces to walk and  devices to help with everything from eating to dressing.  The prognosis at my next appointment in the Spring of 2007 was that I'd be a functioning quadreplegic within 5-7 years, due to my rate of decline.

My husband, kids and I watched the movie "Forrest Gump". A few nights later as I was tucking my son in bed, he told me he'd been praying for me to be "like that guy in the movie". I had no clue what he was talking about. With a great big smile he said "You know! The one where he's running really fast and the leg braces fall off his legs! I've been praying that you'll be just like him!". At the time I laughed hysterically that he was praying for me to "Run Forrest run!".

Even with the unwavering support of my husband, children, parents, family, and friends, I felt alone.  Through the years I'd lost one ability after another to do simple things.  No one could understand having the rug pulled out from under me one thread at a time.  And good grief, the shoes I had to wear with the braces were hideous.  Not to mention having to wear knee-high socks to protect my legs from the braces.  I felt like a freak and that I was alone in this fight.......or was I?  After a long period of being angry, depressed, embarrassed, fearful, and many other indescribable emotions, I realized that no matter how hard I had tried, I could no longer fight this disease alone.  It was then, with the help of my pastor in Champaign, IL, that I started climbing out of that deep, dark black hole.  I finally realized I wasn't alone and all I had to do was look up.  No matter how bad this got, I learned that Jesus would carry me through......... and maybe inspire some manufacturers to create shoes for people with braces that weren't absolutely hideous.

As this knowledge and strength found a foothold in my life and in my heart, my physical strength began to rebuild.  Maybe it was a coincidence or maybe it wasn't, but all of the sudden in the summer of 2011, and without any rhyme or reason, I wasn't needing my leg braces to walk across the house.  By the summer of 2012, I could walk through the grocery store without my leg braces.  By the winter of 2012, I only needed them when I went to church.  And now, in June of 2013, they sit in my closet used only when I'm afraid my legs will get tired.  My hands are still declining, but I trust that the Lord will give me the strength to handle the curves in the road ahead.

So, when I hear the song "Amazing Grace (My Chains Are Gone)" by Chris Tomlin, it holds special meaning.  No matter what may come my way, my chains are gone, I've been set free.

by: Christie Bielss

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