Five years ago, on the Facebook page of one of the dystonia groups that I was a part of, I saw a t-shirt with this saying on it, “It’s just Dystonia, Don’t be jealous.” I thought it was an awesome shirt! Unfortunately, I never got around to buying it.
But a couple of weeks ago I saw another shirt that had the saying, “Dystonia Warrior,” which I had to have! I love the saying!
When I was twenty I had a “It’s just Dystonia, Don’t be jealous.attitude because I knew there were people who were jealous of my life. Let me explain. They didn’t want the disease or everything that comes with the disease. They wanted the attention I receive from my family and friends or wanted the metabolism I have or wanted to have the “freedom” I have to stay at home every day and do whatever I want.
Now, did I understand all that when I was twenty??? No. I still am confused at times when I think about it. I wouldn’t wish dystonia on my worst enemy. I think it would help those who don’t understand what I go through every day to have dystonia for an hour. It would be interesting to see how some of you might react to people staring at you while you go shopping at the mall. Or see you try to do everything with your left hand that has only 40 percent dexterity. It would be like my being jealous of Joni Eareckson Tada because she can talk and is married. See what I mean? It’s crazy. You can’t just pick the good parts of another person’s life. You also have to go through the difficult times. God created everyone with an unique personality and body type. Some of us may look different, but that’s alright because we’re all special in God’s sight. We’ll also go through different circumstances that not every one will understand.
On Monday I’ll be celebrating Memorial Day, but I’ll also be celebrating living with Dystonia for twenty-two years. If you haven’t heard how I got sick, I would like to invite you to read this page called, More About Dystonia.
What have I learned in the twenty-two years living with Dystonia, you may wonder. Where do I begin? I’ve learned countless lessons throughout the years. I’ll mention a couple of lessons I’ve learned over the past five years. First, I’d like to mention how I choose joy everyday. There are always two options I can choose in the morning. I can be depressed that I’m waking up with no plans for the day. Or I can wake up and listen to encouraging music and podcasts while I text people the Lord puts on my heart. Have there been days when I’ve listened to music and cried? Many. But there comes a time when I just have to let go of whatever disappointment I’m thinking about (which is different every time) because I can’t do anything about it. I have to choose the right attitude and reaction in life with the Lord’s help.
Another lesson I’ve learned is how God is always faithful. I could tell you hundreds of stories about how God has answered my prayers and worked things out in my life, just like I’m sure you have stories. I get emotional every time I sing the hymn I Must Tell Jesus. How much clearer can the author of a song get? I have asked for prayer before on Facebook, and I’m not saying it’s wrong to ask others to pray for certain situations. But there needs to be a time when you have to learn to just trust that the Lord will take care of it and put it into His hands. I have done this several times, just sobbing to the Lord (when I’m home alone).
I won’t go into all the details, but a few weeks ago I was really tight and could hardly function because it had been two months since I got my Botox (which was wearing off at that point). My doctor had moved to a different hospital in Oklahoma City and we didn’t know when I would have an appointment next. Meanwhile, I’m planning on going to a singles retreat in June. So I started praying for the appointment to be before the retreat so I could function. I told eight of my close friends and my family to pray. Guess what? The Lord answered our prayers and I got my Botox this past Monday. I’m still overwhelmed with gratitude that the Lord answered this request. It’s a miracle I didn’t have to be on a waiting list until June 23rd. Just saying. “Praise the Lord!” doesn’t seem like enough thanks—the Lord deserves much more.
When I saw the “Dystonia Warrior” shirt, I felt proud. I guess it’s because I don’t feel like a “warrior.” But, the more I thought about it, I remembered that muscles in my body do fight against other muscles every day. Still, I know it could be much worse.
I also think my parents and sisters are warriors because they have fought the fight as well. Living with a person who has disabilities can be hard. I’m hopefully going to have a mini sister series in the upcoming months. I’m going to ask my sisters to write about how life was, growing up with a handicapped sister.