At the age of three, I got Rocky Mountain Spotted Fever, which was misdiagnosed and unfortunately caused brain damage. The doctors said I would be 100% in a year, but they were wrong. The lives of my whole family were turned upside down when they learned I would never talk with my mouth again or live a ’normal’ life like many of my friends.
I’m blessed in the fact that my type of Dystonia doesn’t cause chronic pain. Also, during the past 20 years of living with Dystonia I have had only three major surgeries. One surgery, when I was 8, was unsuccessful. Surgery on my legs (because my bones were twisted) when I was 18 was successful. Lastly, I had Deep Brian Simulation surgery in June of 2016, which is still in the trial-and-error stages.
My parents started letting me make my own medical decisions when I was 18. So when I finally decided I was going to have the DBS surgery, I was thinking, “I hope I’m doing the right thing.”
How are you doing?
This question is common and can be answered many different ways, depending on how my life going. Here are some ways this question may be answered if I were texting you.
•Still hanging in there, my friend. 😊😊
I must realize that, whatever I’m going through, life is good because God is great!
What is Dystonia?
(Source: Dystonia Medical Research Foundation website)
Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are ‘competing’ for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures. There are multiple forms of dystonia, and dozens of diseases and conditions include dystonia as a major symptom.
Dystonia may affect a single body area or be generalized throughout multiple muscle groups. Dystonia affects men, women, and children of all ages and backgrounds. Estimates suggest that no fewer than 300,000 people in North America are affected. Dystonia causes varying degrees of disability and pain, from mild to severe. There is presently no cure, but multiple treatment options exist and scientists around the world are actively pursuing research toward new therapies.
Although there are multiple forms of dystonia and the symptoms of these forms may outwardly appear quite different, the element that all forms share is the repetitive, patterned, and often twisting involuntary muscle contractions.
Dystonia is a chronic disorder, but the vast majority of dystonias do not impact cognition, intelligence, or shorten a person’s lifespan. The main exception to this is dystonia that occurs as a symptom of another disease or condition that can cause such complications.
When did you get saved?
I was blessed to grow up in a Christian home and get to go to church all my life. But I realized that just because I grew up going to church and having Christian parents didn’t make me a Christian. At the age of 7, I came to the realization that I, Abigail Brown, needed Jesus in my life to become my Savior and to cleanse me from all my sins. That day at a kids’ crusade, I prayed in my heart and asked Jesus to forgive me of my sins and thanked Him for dying for me and being raised from the dead so one day I could live with Him in Heaven.
I have been saved for 16 years now and I’m still learning and growing in my relationship with the Lord.
Growing up, did you go to public school?
Yes, I went to public school in pre-k through 5th grade half-days and then I would go home and my mom would teach me the rest of the subjects. I went to public school mainly to go to Physical and Occupational Therapy and also to make friends. I had an aide throughout my elementary and Christian school days.
My mom taught me to read and write. She was the best English teacher I ever had. I’m so thankful she was willing to teach me at a young age while keeping up with teaching my sisters.
As I got into middle school, I went to a Christian school half-days as well. I made a lot of friends during those years.
Growing up, was school hard for you?
Yes, school was hard for me—especially high school, which I was doing at home by then. The subject I hated the most was Algebra—both I and II. My favorite subject was History.
What’s one thing you wish people understood about living with Dystonia?
There are so many things I wish people could understand about living with dystonia. But if I had to pick just one thing it would be, everything I do takes a fair amount of time. It can get frustrating at times because for every other person it takes them seconds to do what I accomplished in 20 or 40 minutes. These are just a few things I do with my crab-like left hand: getting paint out of tube that are almost empty, cutting up pizza and eating it, opening a 16 ounce pop bottle that’s half full, and brushing my teeth. Yes, very simple every day tasks that take several minutes to accomplish day after day. It does get old and tiring. I do cry and get upset sometimes because living with dystonia is a full time job for me. It will always be there when I wake up but so is the God’s Word.
Do you have siblings?
Yes, I have an older sister who’s 5 years older than I, a sister who’s 3 years younger than I, and another sister who’s 5 years younger than I.
Life wouldn’t be the same without my sisters, especially my older sister. She has always been my cheerleader in life. Even to this day she is always encouraging me and telling me I can do things, when I thought I couldn’t.
Who are your closest friends and do you go to activities with them?
My closest friends are my sisters and mom without a doubt. It’s a party when we’re altogether. We love talking, laughing, and definitely shopping.
My closest friend outside of my family would have to be my friend, Hannah. We text throughout the week and see each other at church. I enjoy eating out with her and spending time with her. I definitely cherish our friendship.
When did you realize you would never “talk” again?
I think I was around 6 or 7 years old when I realized I would never talk with my mouth again. I remember thinking, “Why can’t I talk?” while watching a home video taken when I was 2 years old and showing me talking non-stop and being silly.
I didn’t understand then why I got sick when I was 3, and even now I don’t understand why God allowed Dystonia in my life. But I do know God did allow me to communicate again. It may not have been how I wanted to communicate, but thankfully through the years, I’ve been able to use devices that help me communicate with others.
I’ve been able to share my testimony at ladies meetings and a college throughout the years. Plus, I now share my testimony with you on my blog.
When did you start getting dressed by yourself again?
I remember working on getting dressed at home during therapy time when I was 7. The therapist thought I should do it a certain way when I wanted to do it my own way. (I was stubborn before I got sick and I was still stubborn after I got sick, which at times was good.)
I was 8 when I started getting dressed for school all by myself.
When did you start being independent in the restroom/shower?
It was in third grade when I started feeling comfortable going to the restroom by myself. I didn’t want my mom going with me every time I had to go. Now it’s no big deal, but back then my mom was so excited! Of course, I was pleased, too. I am still able to do it, using only my left hand to pull down my pants.
Do you like your toilet paper to come off the roll over or under? I prefer over when I’m out and about. But at home, I use tissues because they’re easier to grab.
I started taking showers by myself when I was in 5th grade. Before that, though, my mom would help me wash my long, thick hair while I sat on my shower chair. The time had come, though, to start washing my hair by myself with one hand. I eventually got the hang of it. Now I take showers all by myself. I can check off that goal.✅
When did you start painting?
I started taking private art lessons when I was 8 years old from Pat Evans, continued to excel throughout 9th grade, and then took a break when I was in 10th grade. I started painting again in 2012, and started taking lessons from Tandi Memmott in the fall of 2014.
Both of my teachers have challenged and encouraged me to always do my best, yet have fun while painting.
What do you do during the day?
Here’s a list of things I do from day to day.
•Write in my prayer and verse journals.
•Listen to encouraging podcasts and music.
•Text friends and email missionaries trying to encourage them.
•Write a blog post.
•Work on a painting.
•Do the dishes
•Listen to audiobooks.
•Charge my rechargeable batteries in my chest.
How long does it take you to write a blog post?
Usually, when I have a good day (when my eyes aren’t squinty😆) it can take me 4 hours. Sometimes I write late into the night and then other times I wake up with a blog idea. On my bad days, writing a blog post can take about 8/9 hours, depending on what time I start.
How long does it take you to paint a painting?
Honestly, it depends on what I’m painting. Sometimes it takes hours, other times days or even weeks.
The same thing applies to how I price my paintings. Certain paintings take more time than others. Also, there are days when I’m very tight and unable to paint.
My prices range from $35 to $125, and that doesn’t include shipping.
What’s your favorite verse during the hard days?
I have clung to so many verses throughout the years. If I had to pick only one, though, it would have to be Second Corinthians 4:17, which says,
For our (my) light affection which is but for a moment, worketh for us a far more exceeding and eternal weight of glory.
I like to insert my name into verses to make the verse personal to me.
What verse has been your biggest comfort lately?
Again, so many verses come to mind. Recently James 1:12 has been a comforting verse to read.
James 1:12 Blessed is the man that endureth temptation: for when he is tried, he shall receive the crown of life, which the Lord hath promised to them that love him.
What is your favorite song?
That’s a difficult question because I love every song I listen too. If I had to pick my top 3 favorite songs right now they would be:
1. Going There, sung by Triumphant Quartet
2. None Of That Here by Joseph Habedank
3. Awesome Power Of Prayer, sung by The Collingsworth FamiIy
Do you have a favorite “fun” song you jam to when you need a boost?
I found this song a couple years ago it’s been listened to a lot since then. It is a Christian contemporary song, and I have several songs that I enjoy that genera. My favorite “fun” song is Never Ever Give Up by Matthew West.
For me this song inspires me to keep living and choosing joy. Obviously, I can’t do anything in life without the Lord in my life. I can try but it never works. Getting up every day and making the choice to literally choose joy or an unhappy life isn’t easy when life is hard. But it’s a choice I have to make to never ever give up in this life.
Does your speaking voice sound different in your head?
Yes, my speaking voice in my head has matured over the years. If you ever stand by me in church while we’re singing hymns you’ll probably notice that I’m an alto but I can hum pretty high as well.
Can your chat box change inflections?
It can if I type a sentence in a certain way. But if I laugh then you know I’m getting ready to say something funny. And if I’m angry at a situation, you’ll know by my face and gestures. Just ask my sisters…LOL.
Do you still have your hugging ministry?
Yes, I still do.
For those who don’t know about my hugging ministry, I started it when I was 16 at my church. When people would go shake hands during hand-shaking time, I’d go hug certain ladies that I thought needed to be encouraged. Now different people and little kids even come give me hugs at church.
Is college in your future?
As of right now, it’s not. I have been taking a writing course called Compel. It was started by Lysa TerKeurst, who wrote Uninvited and many other books. I’ve been learning a lot about writing and getting new ideas.
Have you been able to minister to others who are in a similar situation?
Yes, I’ve been able to communicate with people with different types of Dystonia and other handicaps through Facebook messenger.
Are you a secret OU fan?
No, I am a loyal and true OSU fan. Win or lose – I will always be a OSU fan! Go Pokes!!!
What is one thing you would like to accomplish in your life that you haven’t already conquered?
One of my dreams is to one day to move out and live in a place of my own.
What is something you wish people knew about you that isn’t well known?
I love collecting notebooks and decorative boxes. I also had a rock collection when I was growing up.
What gives you inspiration?
The little details in nature give me inspiration to paint. Just nature itself is so amazing and wonderful!
What have you learned through this journey?
One of the main lessons I have learned is that I must strive to be content in whatever circumstance I am going through. Also, I have learned to wait and depend upon God and His perfect timing in my life.
I hope this page has given you some perspective into my life living with Dystonia.