A couple of weeks ago I was trying to hang pictures on the wall. No matter which way I grabbed the nail, as soon as the tip of the nail touched the wall, it fell from my grasp. There is nothing more frustrating than trying to do something and having it fight you every step of the way. Trying not to mutter unladylike words under my breath, I heaved a big sigh. "Necessity is the mother of invention"~Plato (or maybe it's Aesop - it's up for debate). It's a phrase I find grossly annoying but so very true when it comes to dealing with physical limitations brought on Charcot-Marie-Tooth disease.
Ok, to be perfectly honest, losing that ability was frustrating as hell. There is just no other way to describe being able to do something one day and then having that ability stripped away the very next day. So how do I deal with it? I do what any normal redhead does. I stomp my feet, I throw a tizzy, I bite my family's heads off if they offer to perform the task for me, I go and beat the stuffing out of a pillow, and then I get back to the task at hand.
Do I feel sorry for myself? Not generally. Maybe it's because I vent my frustration "extraordinarily well" (LOL) at the moment something happens, which makes it easier for me to move on. It's also because my family and friends have always pushed me with the "in a room full of people, I'll take mine" attitude since this disease reared it's ugly head over 20 years ago.
For me, I think what keeps me pushing foward most of all, is hanging onto Isaiah 40:29-31
"He gives power to the weak,
And to those who have no might He increases strength.
30 Even the youths shall faint and be weary,And the young men shall utterly fall,
31 But those who wait on the LordShall renew their strength;
They shall mount up with wings like eagles,
They shall run and not be weary,
They shall walk and not faint."
In the grand scheme of things, life on earth is short. One day I will run again and maybe have races with my kids. One day I will be able to pick up small objects again. One day I won't have to worry about my arm twitching and causing my food or drink to spill. One day I won't be self-conscience about how atrophied my hands look. One day is a day I look forward to.
Until that day of wholeness arrives, I choose to try not to be frustrated at what I can't do and focus on what I can do. Until that day arrives, I choose to live life by plastering a smile on my face even though it would be easier to fall into a deep well full of griping, moaning, and crying. Until that day arrives, I choose to improvise and keep moving forward the best way I know how.
I put that nail in the wall all.by.myself. After mumbling and grumbling under my breath when I dropped the nail several times, I realized that while my fingers may not be able to hold that nail anymore, my hand can hold a pair of needle-nose pliers, which can hold that nail long enough for me to pound it into the wall. Within a minute or two, that picture was hung.......... and it never looked better.
Written by Christie Bielss
Inspiration comes in as many different forms as there are people on the earth. While many are inspired in similar ways, every person has a unique internal mechanism which gets recharged by a certain special experience. That particular driving force creates a level of hope, calm, and understanding within each one of us which inspires us to do great works.
It is also that internal spark of resilience which inspires people after experiencing unthinkable injuries and tragedies to keep taking one step forward, when it seems like it would be so much easier to drown in a sea of anger, self-pity, and doubt. That spark inside the deepest depth of their soul keeps pushing them to get back up, take one more step, and seek a new direction.
I felt that spark ignite inside of me after I was injured and the doctors explained to me what my future held. That spark continues to drive me forward every single day. A spark of determination which does not rely on anger or self-pity, but on hope. A hope that cannot be denied, repressed, or quashed.
My hope and resilience, while it comes from a place within me, is not from me. I've tried relying on myself, family members, and even close friends to bring forth that spark, but it never lasted long. I've tried to force that spark to ignite and change me through reading books and listening to men and women speak, but they never sustained me.
It was only when the pain was unbearable and there was nothing left but the emptiness in my heart and very depths of my soul, that I came face to face with the force behind the spark. It is the energy of the Holy Spirit that gives my soul life and my heart happiness. His strength is what keeps me moving forward every single day when I could sit and wallow in self-pity and anger. His love is what sustains me when the pain overtakes my body and my thoughts. And it is His steadfastness which stands by and waits for my redheaded hard-headedness to get out of the way of His works.
Much like His servant Paul who sought healing from the thorn in his side, my healing has not been physical, it has been His grace which has been sufficient. When the pain increases and causes my heart to get heavy while my soul grows weary, I am reminded of Isaiah 40: 29-31:
"He gives power to the weak,
And to those who have no might
He increases strength.
30 Even the youths shall faint and be weary,
And the young men shall utterly fall,
31 But those who wait on the Lord
Shall renew their strength;
They shall mount up with wings like eagles,
They shall run and not be weary,
They shall walk and not faint."
One day I will have wings like an eagle and I will soar with no limitations. Until then, I know this spark from deep within me is the driving force which keeps pushing me. With every push I know I am not alone because He continues to carry me when I am weak and walk beside me when I am strong. With all that I am, I know it is through Him that I am healed.
by: Christie Bielss
"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
