We all, at some point, want to meet someone who understands or relates to what we are going through in life. In our case, that would be people who understand how exhausting life gets when living with a condition called Dystonia. In this post you’ll read about how two Christian women who can resonate over certain aspects of everyday life while living with different types of Dystonia, have connected through Facebook.
Hi, everyone. My name is Chelsi Christman and this is my journey through life with Dystonia.
At a young age my hands started shaking. As I got older my body started moving more and more. Not knowing what was wrong, I saw a Neurologist who told my parents I would outgrow it. Outgrow what? We didn’t even have a name or a diagnosis. We started seeing every doctor under the sun—with no luck!
During my teen years I really struggled. I knew there was something wrong with me but doctors just kept giving us the runaround. Test after test with no clear answers!
It was Parkinson’s then it was possibly Huntington’s disease. Then it was tremors to possibly CP. Oh, and of course, doctors famous words when they don’t know: “It’s all in her head. It’s just a habit.”
By the time I reached 24 I was over the runaround. The tests. The hearing it was all in my head junk! (That’s what it was—Junk) I began doing my own research and found a Dr. Micheal Sermersheim in the neurology department at St. Vincent. He had just put in a deep brain stimulator in a patient with Parkinson’s disease. I thought to myself, “I want him to be my doctor! He looks stubborn!” I’ll never forget the first visit we had with him. By this point my speech was hard to understand. He said very boldly “You need to be in speech therapy now. I think I can help you! You don’t want to live life like this and I am going to do my best to help you, OK?!”
We traveled to see a Neurosurgeon for a deep brain simulator. At the end of the day my heart was broken because I knew in my heart that was not the right decision for me personally. Dr. Mike knew as well and I know he turned into complete Dad mode then.
Years passed and I continued my own research. I was so determined to find the answers! I came upon this lab in Georgia and sent my story to them. They wrote back with a touching message and papers for my doctor to fill out! Genetic testing was covered as long as my doctor signed off on it. In which it took .2 seconds to convince him to sign! He was in this with me. He looked up at me and said, “You are very stubborn and I admire you for this! Good job!”
Weeks would pass. I would find myself having to re-do the testing because of busted vials. Weeks would pass and I found myself having to stand my ground for those answers that I needed and wanted so desperately. I would get results and open them to find that indeed it was genetic. Dystonia it is and was! At that point I thought if I had the answers I had the cure. You know the fix-all. What I found instead is a Savior who loves me more than I could ever imagine.
The Lord has taken my dystonia. My broken heart got no cure and turned into encouragement! We want to be in control as humans but the fact is we are not in control of a lot of things that happen. My dystonia has taught me to love all people right where they are. Bringing glory to Jesus. You can never know what the Lord has asked another person to walk through.
The pain is deep some days: that constant reminder there’s nothing doctors can do to make it go away, the constant reminder of all that you’ve been through. Jesus makes it better! You can read more about Chelsi here.
Hey there, my name is Abigail Brown and this tells my journey of living life with Dystonia.
I was like every other cute, chubby little toddler, talkative, and rambunctious. I grew and developed as the majority of children do, until God allowed a different plan to unfold in my life, which drastically changed in May 1996. I was bitten by a tick and contracted Rocky Mountain Spotted Fever. My condition was misdiagnosed, resulting in severe brain damage, and at one point I almost died. There were many people all over the country praying for me and my family. By God’s grace, I’m here with you today.
The brain damage robbed me of the ability, to speak, walk, and use my hands. The doctor told my parents that I would recover within the year, but that hope proved false. After many years of physical and occupational—and, temporarily, speech therapy—I did relearn how to walk and regained the use of my left hand, but my ability to speak verbally has never returned.
When I was 5 years old, my parents discovered that the brain trauma I experienced had led to the development of Dystonia, a condition which causes muscles to tighten and the body to contort in different ways! Currently, there is no cure for Dystonia.
I have learned to handle all of my personal care. Some days, that’s all I can accomplish because doing those seemingly, simple tasks feels like running a marathon, especially in the glorious winter with all of the layers of clothes. I can only use my left hand to accomplish tasks. My left hand has 20 percent dexterity. Imagine doing the majority of things with your pointer finger and thumb. I am very thankful for the progress in technology in my lifetime. Growing up, I used many different communication devices over the years. Now, I use an app on my phone and type what I want to say. I’m thankful for the many relationships I have in my life.
My living with dystonia can seem like a prison sentence at times. But living in a body with a mind of its own doesn’t mean I can’t live every day trusting in the Lord! I have to choose to depend upon the Lord daily! My dungeon of despair can turn into a prison of peace and praise, because God is with me in every circumstance. This year I have been reflecting on the many, many things the Lord has helped me through. First of all, He has saved me from all my sins when I was 7 years old. He has helped me get through the failed surgery when I was 8, my seizures when I was 16, and learning to be content with never driving, which has taken years for me to finally accept. He has also helped me get through surgery on my legs In 2011, deep brain stimulation surgeries in 2016, and He is teaching me to be content with living with my parents. He has been with me during each Botox appointment. I get around 30 Botox injections every 3 months so I can function better. The Lord has helped me with so many countless things.
I joined the Christian Dystonia and Chronic Illness Support Group on Facebook in 2019. This group supports and encourages members during the trials of life. It has been a blessing to me. Most people living with dystonia can have a negative outlook on their life. I understand why. It is so easy for me to think negatively about myself. I have to retrain my brain to think right and true thoughts. It isn’t easy but I’m learning. Chelsi and I got connected through this support group on Facebook in January of 2021. I started listening to her podcast and was glad to learn that I’m not the only one who thinks getting dressed is exhausting.
Yes, while we may struggle in different aspects of life, there’s one thing we know—our Great God gives us each the strength we need to get through each day, exhausting as it may be. He knows the effort it takes for us to accomplish tasks in our lives. He is also the only One who allowed us to cross paths and someday maybe meet. Chelsi and I have never talked in person to anyone with dystonia. Hopefully that will change in the near future.