Unfortunately, I'm not one of those people who when asked "why me?", responds with a "why not me?" That, my friends couldn't be further from my personality. I'm no martyr to this condition and I'm nowhere near being a saint. I ask all the time, "why me?". And, if that makes me a bad or selfish person, then so be it. I cry. I get mad. I yell. I get SO frustrated. And yes, I'd have every one of those emotions even if I didn't have dystonia, but to have them also as a reaction to dystonia makes me even more frustrated, mad and sad. It's a circle of emotions!
Sometimes I may portray that I have it all together or that dystonia does not bother me, but rest assured that is FAR from the truth. As I've mentioned in the past, I get highly embarrassed by dystonia and having to use the walker. This (thankfully!) does not happen every day, but rest assured that when I think I'm past being embarrassed, that's the day I am. I have to think that that is God's way of keeping me humble. Grant it, He didn't give me dystonia, but He does use it to keep me grounded. :) When I start acting all "high and mighty" like I've got everything figured out and I can live with dystonia, He likes to remind me, I'm not at all in control or in charge!!
You know the 5 stages of grief, right? They are denial, anger, bargaining, depression and acceptance. Well, I've experienced every one of them in this journey so far with dystonia. And as I told a new friend today, I sometimes revisit different stages at different times (I wouldn't want them to feel neglected or anything!).
1. Denial - I denied that I had anything wrong with me. I thought that if I just gave it half a second, I could "will" myself into not tripping or falling. It took my family seeing that something wasn't quite right to get me to even admit that there might be something wrong and maybe I should go see a doctor. You think I may be just a little stubborn?! I think you'd be right :)
2. Anger - Boy did I experience this and boy do I still experience this! I was furious that I "got" dystonia. I was 25 for heaven's sake. All my friends were starting new jobs (grant it, I did get to experience this! Thank you, Lord!), getting married and having babies and here I was just trying to get from point A to point B without falling. You better believe I was angry. My friends were "living up" their 20's, while I was just trying to survive mine! Every time I fall, I get angry. I know this probably isn't right, but it's the emotion I get. I can't stand falling!!!
3. Bargaining - Oh, did I bargain with God!! "If I do this, God, will you do that?" "If I live my life like this, will you bless me with that?" "If I read my Bible and pray every night, will you heal me?" It's kind of embarrassing, this bargaining, but it did and does go on, I'm ashamed to say. I know this stage all too well!!
4. Depression - OK, I'll admit that I'm my mom and dad's melancholy child. I've never been Ms. Happy-Go-Lucky. So, I should of known that depression would hit me hard. I recoiled from whatever little social activities I did have going on and I retreated to the confines of my house. I ate to mask emotions. I gained weight. I was definitely feeling sorry for myself. I would (and still do) think about all the "what-ifs" and I would get myself all in a tizzy over things. I self diagnosed myself with every deadly neurological disease out there. Thinking back, maybe watching House, M.D. wasn't such a great idea! I had every disease they talked about on the show whether it was neurological or not ;)
5. Acceptance - I'm not completely through this stage yet. I'm not sure I'll ever be. I haven't totally accepted dystonia, but there are parts about it that I have accepted. I told a new friend today that 6-7 years ago as I was laying on my bed crying my eyes out and wondering how I would ever live every day of my life having to use a walker, that I would have NEVER in a million years, thought that I would be trying to cheer her up today. She was recently diagnosed with dystonia. I couldn't believe that I was able to tell her that it does get better. That God is good. My God is faithful. I didn't think I would be able to live using a walker every day, but here it is 7 years later and I've survived!! There have been days when I've hardly thought about the fact that I use a walker. Shall I even go so far as to say that I have thrived?! YES!!! God is GOOD!!!
I have to say something else. Again, this is NOT what I thought I would be saying years after a dystonia diagnosis, but I do feel led by the Lord to say it: If dystonia is the WORST thing that happens to me in this life, then I consider myself HIGHLY blessed. So many people have it so much worse off than me - other chronic diseases, debilitating diseases, cancer, and the list could go on and on and on. And even if there is worse to come, I will still consider myself blessed. Yes, I am blessed! That's the emotion I feel right now and that's the emotion I want to end this post on. I hope you can and do consider yourself blessed as well. We have a God that fights for us, that loves us, that died for us, that rose for us, that defeated death and the cross for us and that watches over us. I am blessed and so are you!
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