Joy

JERRY’S KID: My Struggle with CMT and Where I Find Strength

September 7, 2019

Do you remember Jerry Lewis? He was a famous comedian, actor, and philanthropist. One of his most notable accomplishments was his partnership with the Muscular Dystrophy Association (MDA). Muscular Dystrophy (MD) is “a group of hereditary diseases characterized by progressive wasting of muscles.” [i] Lewis helped create a telethon that raised sixty million dollars annually to help find an MD cure. Because of his partnership with the MDA, those afflicted with the disease became known as “Jerry’s Kids.” 

Lewis got involved with the MDA because of a childhood experience. He told a story about when Lewis frequently made fun of how a fellow student walked. Lewis didn’t know that the student had MD. Mocking the student one day, Jerry didn’t recognize that the butt of his joke was in the room. Lewis made eye contact with the student and realized that the ridicule deeply hurt him. This experience profoundly impacted Lewis, and he vowed to help find a cure for the debilitating disease.

Growing up, I remember watching the Jerry Lewis telethons. The fundraisers were televised on Labor Day, lasted twenty-four hours, and were broadcast on every channel. Celebrities appeared on the telethons to entertain the TV audience and solicit donations. I was often compelled to go door to door and collect money because of Lewis’ appeal. Every year, I would turn in my collection at McDonald’s and receive free French fries. What a fantastic reward for a kid! Little did I know growing up that I shared a similar condition as those for whom I was raising funds; I found out that I’m one of Jerry’s Kids.

I discovered that I inherited a genetic condition called Charcot-Marie-Tooth (CMT) disease. CMT is similar to Muscular Dystrophy and affects the peripheral nerves, those nerves outside the brain and spinal cord. The condition causes muscle weakness and atrophy and some loss of sensation in the feet, the lower legs, the hands, and the forearms. CMT’s symptoms may include foot deformity (very high-arched feet), foot drop (inability to hold foot horizontal), “slapping” gait (feet slap on the floor when walking because of foot drop), loss of muscle in the lower legs, numbness in the feet, and difficulty with balance. I am not alone; more than 2.8 million people are affected worldwide, or one in 2,500. [ii]

Why do I share this with you? I’ve experienced considerable physical and emotional adversity because of my condition. Let me explain through a couple of examples. I enjoyed sports in my youth. I loved to play basketball, football, and tennis. Growing up in Colorado, I also loved to ski. I wasn’t always the fastest on the court, field, or slopes, but I gave it my all. I knew if I couldn’t outrun someone, I could out-hustle him. In my junior year of high school, I noticed that my feet and ankles were weak. I always twisted my ankles, especially my right one. I began to see that I had very skinny legs, my feet had very high arches, and my balance wasn’t steady compared to other kids. I was very embarrassed by my lack of physical stature and ashamed of my condition.

To stabilize my right ankle, I had tendon transfer surgery. The procedure was where my doctor took a tendon from the top of my foot and attached it to the side to limit the ankle’s range of motion; to stabilize the ankle. I went through physical therapy and was back playing sports regularly. Skiing was challenging because my foot didn’t fit well in ski boots, and I could no longer do it comfortably; a real bummer! While my ankle was strengthened, my condition was unchanged.

Fast forward to my early career days. My disease progressed, and I noticed my balance became less stable. I remember a sporting event I attended representing my company. I was overseeing an experiential marketing event, and while standing with a group of athletic department folks, I lost my balance and stumbled around a few times. After someone saw me stagger, the individual concluded that I was drunk and started rumors about me within the athletic department. It was 10 a.m. in the morning, for goodness’ sake! I was very offended by this and ashamed that I couldn’t even maintain my balance without stumbling.

I could go on and on regarding CMT and its progressive nature. I walk with a limp because of the tendon transfer surgery, have difficulty walking barefoot on hard surfaces, and am always aware of how it appears to others. It is a daily reminder of my weaknesses—physically and emotionally. I wish I didn’t have this challenge.

I can relate to the apostle Paul. He struggled with an ailment and asked God three times to relieve him of it. Christ’s response was, “My grace is sufficient for you, for my power is made perfect in weakness.” Paul went on to write, “Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.” [iii]

We are all given something in life to deal with; some adversities, some trials, and some challenges. Like Paul, I choose to rejoice in my struggle because it always leads me back to Jesus. I can honestly say that through the power of the Holy Spirit, “when I am weak, I am strong.” I don’t blame God. I talk to the Lord about my resentment and shame when I struggle. I don’t concentrate on my circumstances; I focus on him. He is my everything, my strength, and my shield. He is the source of my hope and joy. I know he loves me and desires the very best for me. How? Because I know that my identity is not in being one of Jerry’s Kids but in being one of Jesus’s kids

My struggle forced me to identify talents, skills, and abilities other than physical ones. For instance, I developed the skill to effectively communicate through writing and speaking. I discovered long ago that something special happens inside me when I speak in public—I feel God’s pleasure. I find great satisfaction in connecting with an audience and moving them to action. Amid my struggle, God has blessed me way beyond what I deserve. My life is overflowing, and I am so blessed with a wonderful wife, kids, extended family, friends, and career. I have an attitude of gratitude that swells up to thankfulness and praise. The God of the universe loves me, and he’s working in me. He’s made all the difference. What a joy! How about you? Can you say the same? Are you experiencing God’s joy and living an abundant life in your adversity? If not, what’s holding you back? How about trusting him? If you do, you’ll experience great joy!

To learn more about CMT or donate to help us find a cure, go to cmtusa.org.

Want to explore more about overcoming adversity and becoming a leader others will gladly follow? Visit my website, prestonpoore.com, today!

Cheers,

Preston


[i]Merriam-Webster, I. Merriam-Webster’s Collegiate Dictionary.

[ii]Ibid.

[iii]The Holy Bible: English Standard Version. Wheaton, IL: Good News Publishers, 2001, 2 Corinthians 12:9–10.

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THE WIRE – How to Handle Life’s Trials

March 23, 2019

“Pray, but don’t pray too hard,” the doctor said with reservation. . .. “This is the most extreme case I’ve ever seen, and I don’t want you to get your hopes up”. . .

The words hit us like a ton of bricks.

My wife, Carla, just learned that her teeth, gums, and bones in her mouth were rapidly deteriorating. She could lose five of her front lower teeth and may need implants. 

The doctor told her that she had a rare and unique case caused by a post orthotic permanent retainer on the back of her lower teeth. The retainer wire untwisted over time and contorted her teeth out of place.

If you’ve ever had braces and a permanent retainer wire glued to the back of your teeth after the braces were removed, you know what I’m talking about…The purpose of the wire is to ensure that your teeth stay in place long term. A very common procedure.

Back to my story.

There was a glimmer of hope. Carla’s doctor was world-renowned for his periodontics results. He’d developed a radical procedure that combined skin and bone grafting and braces. The doctor’s technique restored many people with gum and bone loss.

But hadn’t ever seen a case like Carla’s.

With the grim diagnosis, Carla became depressed and embarrassed. You can imagine the despair, anxiety, and hurt she experienced.

We began to pray amid Carla’s gloomy trial. We believed that God would hear our cries and heal Carla. We saw the doctor’s doubt that prayer would make a difference as a challenge. We decided to turn to God, put our trust in him and fervently seek his healing.

I wrote in my journal. . .

The doctor encouraged us to “pray, but not pray too hard.” He doesn’t want us to get our hopes up. But we serve a great and generous God. He can do a miracle for Carla. Wouldn’t it be awesome if the doctors who see this as a great case study see God work a miracle and have no other explanation for her healing? Please Lord, do this. Please heal Carla’s mouth. Please help the teeth to move back into place and restore her bones. Help her not lose her teeth. If not, you are still my God, and I pray that Carla will continue to trust in you and grow in her faith.

Carla endured lengthy oral surgery. The doctor expertly grafted skin and bone to re-establish her teeth. Then, braces were put on to keep the teeth in place. She said it was the most excruciating pain she’d ever experienced, including childbirth.

Initially, her outcome was uncertain. Carla frequently visited her periodontist, orthodontist, and dentist to evaluate her progress. Always hoping for good news but being prepared for the worst.

And, we continued to pray and boldly hoped that God would work a miracle. 

Over time, Carla’s mouth healed. She didn’t lose five teeth. She didn’t need implants. Her bone and surrounding gums were restored. Her teeth stabilized. 

Through the skilled physician’s hands, God was faithful. He led Carla to the periodontist who could help her. Despite the dire prognosis, God did a miracle and healed Carla.

Carla was a true champion through the whole trial and process. She never gave up hope. Carla maintained an incredibly positive attitude and trusted God with the outcome.

And, she kept her beautiful, contagious smile that lightens up every room and makes the world a better place.

During one of her last check-ups, the doctor told her, “you’ve made great progress. You’ll probably be buried with your teeth!”. . . A funny way of saying your teeth are healthy and permanent.

And interestingly, Carla’s mouth became famous! The doctor now shares her case study worldwide and helps other doctors apply what he learned.

God is faithful, and we are thankful for his healing Carla’s mouth. 

Through this and many other challenging circumstances, I’ve learned three principles about handling life’s problems:

  1. Trials Are Meant to Bring the Best Out of You: The Bible says, “Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that your faith-life is forced into the open under pressure and shows its true colors. So, don’t try to get out of anything prematurely. Let it do its work, so you become mature and well-developed, not deficient in any way. (James 1:2-4 – The Message). God brings trials into your life to separate the pure from the impure. He puts you in situations that reveal your true character (e.g., integrity), shows your devotion to him, and helps your faith grow. God wants the best of you.
  2. Live Life with Bold Hope: Have you ever heard the phrase “hope is not a strategy.” I agree with the statement but always counter with, “but hope is essential.” Why? Hope is the expectant confidence in a positive outcome or future. Hope shapes your ability to navigate through current circumstances. Hope helps you be a better problem solver, remain flexible, be optimistic, handle disappointment and manage stress. Where do you find hope? God! The Bible says, “May the God of great hope fill you up with joy, fill you up with peace, so that your believing lives, filled with the life-giving energy of the Holy Spirit, will brim over with hope!” (Romans 15:12-13 – The Message). Trust in God, and he will enable you to live life with bold hope.
  3. Above All Else, Pray: When you find yourself in dire circumstances, talk to God. Tell him about what’s happening and seek his help. He will either calm you or calm the storms of life that surround you. The Bible says, “Don’t fret or worry. Instead of worrying, pray. Let petitions and praises shape your worries into prayers, letting God know your concerns. Before you know it, a sense of God’s wholeness, everything coming together for good, will come and settle you down. It’s wonderful what happens when Christ displaces worry at the center of your life.” (Philippians 4:6-7 – The Message). In all events, pray, and God will help you.

I acknowledge that not all circumstances or trials result in immediate, tangible, or positive outcomes like Carla’s. But I encourage you to understand that trials are meant to bring the best out of you, live life with bold hope, and above all else, pray. If you turn to God and look to him, he will help you.

Want to learn more about leveling up your leadership skills? Please visit my website, prestonpoore.com, today!

Cheers,

Preston

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Preston Poore

I’m a disciple of Christ and an executive at a Fortune 500 Company. In my blog, The Discipled Leader, I draw on my diverse business experience to help Christians connect their secular and spiritual lives at work.

As a certified coach, speaker, and trainer with the John Maxwell Team, I help others grow their relationship with Christ, develop their leadership skills, and understand how they can make a positive difference in today’s chaotic world.

Let me help you reach your potential.

I draw on my diverse business experience to help Christians connect their secular and spiritual lives at work. I invite you to subscribe to my blog and learn how to develop Christlike character, influence your culture and change your world.

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