Living with CMT - Jessica's Story
"You should take your daughter to see a podiatrist. There's something wrong with the way she walks.”
The words stunned my mom, but she wasn't entirely surprised. She had spent the last year trying to get me to stop walking like a little ballerina, always on my tippy-toes. She hoped I was just being a stubborn 8-year-old little girl, but the real answer was far more complicated.
The podiatrist watched me walk barefoot up and down the hallway. The cold, hard floor pressed against my feet as I floated along like a little ballerina. Two x-rays later, and he uttered the words that changed everything: “Your daughter has either MS or CMT.”
My name is Jessica Van Eaton, born into the world as Jessica Roth. I was born and raised in sunny, southern California, far enough inland to rarely see the beach but close enough to often have it in mind. I spent my childhood in a safe, loving Christian home, with all that I needed and plenty of books to read ravenously.
Today, I live in lovely Boulder, Colorado, with my husband, Justin. We have been married for ten years, and continue to learn more about each other every year, and love each other even deeper. I work part-time at a structural engineering firm in town. We spend our free time walking along the creek, gardening, making music, cooking, with people we love, and simply enjoying life together.
What is CMT?
Charcot Marie Tooth, also known as CMT, is a collection of genetic variants that cause nerve damage primarily in the peripheral nervous system, and in turn cause muscle weakness and sometimes nerve pain. After several painful EMGs and nerve conduction studies, and a genetic test, I was officially diagnosed with CMT type 1A (which denotes a duplication of the PMP22 gene).
While this type typically doesn't cause nerve pain, I now experience it in spades. I have also undergone several reconstructive foot surgeries, and experience significant muscle weakness in my lower legs and in my hands. Yet, if you saw me walking down the street, you would have no idea that there is anything different about my body.
Pain has slowly become the most difficult part of my CMT experience. The purpose of pain is to quickly shift your attention to a problem that needs solving, like a hand on a stove burner or a pinched nerve in the spine. It is meant to steal your attention, to help keep you safe. Chronic pain, however, steals your attention to a problem without a solution, and can make it increasingly more difficult to focus on what matters.
I also experience muscle weakness, and that brings difficulty to several areas of my life. My husband is strong, adventurous and creative, and we delight in exploring the world together. Every year, however, my ability to explore is coming more into question. Each adventure takes more planning, more equipment, more assistance, and more recovery time. Through the help of my husband and both family and friends, I have experienced some very beautiful places, and look forward to more adventures.
Having Faith in Suffering
I have found that it can be difficult to face the seeming dichotomy of living in a body in need of healing while having a relationship with an all-powerful, all-loving God known as Healer, Jehovah-Rapha, who has not brought healing. I have spent countless years praying for my pain to be healed. I have had entire churches praying for the healing of my body from CMT.
I have experienced the laying on of hands and the beautiful expectation that God will hear our prayers and will be faithful to answer them and bring me healing, only to spend the next 10 years with a progressing disability and increasing pain. I have wrestled with God as my muscles have grown weaker and my pain has grown more daunting, and every avenue I have pursued for help or relief has lead to either disappointment or even more pain.
I have wrestled with God as my husband and I have suffered from lost dreams. I have faced the helplessness that comes from fighting a disease with “no cure” and a God who has not answered “yes” to our pleas for healing. This road is hard.
Relying on God's Strength
There have been so many days in my life where everything I accomplished came solely from the strength of God working in me, because my body and my spirit were stripped of strength due to CMT and pain. I rarely accomplished all that I wanted in those moments, but by God's grace, strength and provision, I accomplished what He found to be necessary. In my weakness, he provided his own strength.
I used to think that the verses which talk about relying on God's strength meant that when we were weak and humble he would build us up and make us strong to do his will. But in my experience, it means he comes alongside us in our weakness, and while we are weak he gives his strength to do his will. It's a subtle difference, but it is so important. When I face my weakness and still take the next step when God tells me to, rather than waiting for strength, God will move. When I lean heavy into God's strength, because I have none of my own, God will provide just what is needed for each day, and nothing more.
The 'nothing more' part is difficult for the over-achieving perfectionist heart that I still carry, but when I am leaning heavy into God, I am able to remember my to-do list is his responsibility to check off or cross off – his responsibility to decide what is important to pursue.
God's presence is perhaps the greatest blessing a life can bear. I suffer deeply, but I have joy in the middle of suffering because I am blessed by the constant presence of God. The suffering is not negated, or often even lessened, but I am thankful that is not the fullness of my experience. I am so thankful that God has always taken the little moments to open my eyes to clearly know that he is with me in all of these moments, beautiful and painful, and that his strength is enough to carry me through.
And I am so thankful for all of the beautiful people God has placed in my life, to hold me tight and lift me up, and point me to the beautiful parts of life: my husband, my best friends, my parents, and wonderful women of God who surround me with support and prayer.
My suffering allows my eyes and my heart to be open to the suffering of those around me. My pain allows me to understand, at least in part, the physical, emotional, or spiritual pain of the people God places into my life. My faith, coupled with my experience from CMT, and the heart of compassion and love that God has been growing in me, holds me steady through the storms in the lives of the hurting people around me, like a lighthouse set atop a rock. My path, however daunting, is a story that will point others to the light of world, the hope that comes from God.
I don't walk through any of this perfectly. I am certain there are days where I don't even walk through this well. Yet God is with me in every step, and that is a bold and beautiful thing.
I can do all things through him who gives me strength.
The LORD is near to all who call on him, to all who call on him in truth.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever. Psalm 73:26
Keep looking for the beauty, and you'll see God's handiwork.
Jessica was born and raised in southern California, and now resides in Colorado with her husband, Justin. She has a bachelor’s degree in Civil Engineering from the Illinois Institute of Technology and is currently working toward her professional engineering license.
She enjoys macro photography, crochet, singing, and a wide variety of arts. Her favorite use of time is to make something beautiful with her hands or her voice, and living as an emotional and spiritual blessing to others.
At a young age, Jessica was diagnosed with a progressive neuromuscular disease called Charcot Marie Tooth. She has endured multiple foot surgeries and countless hours of physical therapy to maintain her ability to walk. Jessica takes each day with the grace and strength of God, coping with muscle weakness and increasing pain.
You can find Jessica at: https://vaneaton.wordpress.com/