Control. It’s something that we all like to have, but for me I have had to accept that having complete control is never going to happen because I am stuck living with a Jerk! I can’t lie and say that in the beginning I didn’t find it frustrating, or that it didn’t use to upset me. I lived my life trying to hide the jerk but the jerk would come out at the most inconvenient times and it would make me feel extremely down for the rest of the day. I blamed myself for living with such a jerk in the first place and it became my obsession to try to get rid of the jerk, but no matter what I did or how hard I tried or who tried to help me, the jerk still hung around and there was nothing I could do about it. It took years, but I finally came to realize that I had no option but to accept the jerk and the fact that the jerk wasn’t going anywhere. It didn’t happen overnight but I no longer let the jerk control my life or destroy my confidence. I live my life the way I want, I’m happy despite the jerk and that’s why now I have decided to share my story.
Each day I get up and have pretty much the same routine. Like many other females, my routine involves putting on a bit of make up (to hide the tired eyes and random spot that has decided to appear overnight) but depending on the day sometimes the jerk doesn’t let me put my eyeliner on. I tell myself its okay, that it’s not a necessity, and I move on. Another part of my morning routine that has become essential, involves getting my caffeine fix so I don’t have scrambled egg brain for the rest of the day. However, the jerk can be spontaneous and make me spill some by jolting my hand away from my mouth whenever I go to take a sip. I know the jerk sounds a little mean but I blame the lack of sleep.
I use public transport to get from A to B because the Jerk doesn’t let me get my licence. It’s not all bad though, at least I don’t have to worry about finding a car park, getting stuck in a traffic jam or being the designated driver. Admittedly, I have spent my fair share of time going in the wrong direction but I think I am finally beginning to nail it.
There have been many times in public when I have caught a few people’s eyes (not for a good reasons) and then been embarrassed by the jerk. I know that deep down the jerk’s intention wasn’t to make me look silly in public, but it certainly feels that way.
I put up with a lot from the jerk but overall it’s forced me to become a more patient person. However, that patience can be tested when the jerk tries to come between me and getting food in my belly! Sometimes I will be eating as normal and the jerk will decide to move my hand away just as the food is about to reach my mouth – it is just cruel! The jerk sometimes does the same thing with my hand when I try to take a selfie after I’ve managed against all odds to get my make-up on straight, I’ve avoided burns from my curling iron and overall scrubbed up pretty good – I think many of you will understand the frustration of having an almost perfect selfie ruined!
Now feel I should probably explain that “The Jerk” I have been referring to is not some horrible boyfriend or person in my life that is trying to sabotage me. The jerk is in fact a neurological movement disorder known as “dystonia” and I have had it my entire life. Believe it or not, dystonia is the third most common movement disorder, after Essential tremor and Parkinson’s disease, but it seems to have the least awareness. Dystonia comes in different forms, and for me it involves rapid jerks that can be triggered by nerves, fatigue and apparently anytime I know I have to be still. For others the symptoms can be much worse, involving muscles contracting, body parts twisting involuntarily causing pain, discomfort, exhaustion and in turn this all has a huge impact on every aspects of a person’s life. I can’t speak for everyone, but for me the biggest struggle I had to overcome was living with a condition that many people didn’t know about or understand; I was passed from neurologist to neurologist trying to seek answers. This is my reason for blogging. I hope that by sharing my stories about “living with a Jerk” I can raise awareness and let others know that they are not alone.
I Know that each person on this planet will at some point have their own battle or hurdle to face (we all have our own “jerks” to deal with). However, I believe if we can create an inclusive network we can help lighten the load or, at least, offer an ear to someone who is struggling. The power of just being there to listen someone who is suffering is greater than you can ever imagine. I know this because when I have had my lows, what helped guide me back was having people who listened, without judgement and believed in me. To all the beautiful people I have in my life I want to say a huge thank you , my life would not be the same without you all.