It's very frustrating. School always came easy for me. I got things done before they were due. I got them done fast. And I got them done right. That is not the case anymore, obviously.
My first semester of college was the worst. I take Klonopin and Artane every morning and every night as part of my treatment, and let me tell you, I have such a love-hate relationship with these medications. They help my disorder tremendously but that doesn't make up for feeling so drugged out I can barely remember my own name. The Klonopin makes me sleepy but the Artane...I can't even put into words how it makes me feel. It's the most uncomfortable feeling. It's like a big cloud being put over my brain. My short-term memory is limited to about 5 seconds before I completely forget what I was gabbing about. I'm sluggish. I'm slow. My eyes are blurry. And I'm supposed to go to class like this??? I tried. I failed.
In High School it worked because I was on a stimulant for my ADD, so I think the two balanced each other out. But I am off all stimulants as I have a suspicion that was what caused my Dystonia in the first place (a different story). I was still down to a dangerously low body weight at this point as well and was extremely weak. I hadn't learned how to manage my Dystonia and my every day life, something I still haven't mastered but have come a long way to be where I am today. It's all about balance.
Anyways, I had to think of a way for me to be a normal, functioning citizen of society and not this zombie, glossy-eyed, stoned version of Nicole.
And I figured it out. Pretty simply solution. I wake up an hour earlier than I actually have to be up, take my medication, and go back to sleep for an hour. When I wake up an hour later I am still groggy, but not stoned out of my mind. At night, I welcome the cloudy feeling as I am so exhausted by the end of the day I don't mind being a little brain-dead.
My neurologist is hoping that we can eventually stop the medication and just stick to Botox injections every 3 months. Time will tell where that goes.
I guess the biggest lesson I have learned here is to accept. Accept that it is going to take me longer to do things now. Accept that it's not a bad things. And accept that I am going to have moments of frustration as I watch people my age live "normal" lives.
It's so hard connecting with people my age. I feel like everybody goes out and has a big drunken or non-drunken blur of fun. Staying up late and not worrying about the horrible effect it might have on the body. Not a care in the world. Random trip to the beach? No problem! Girl's night at the bar? Sure! Crazy adventures into the wee hours of the night? Let's do it!
That's all I want. To be normal. To feel 21. To know how to be around people my age and connect with them on a real level.
But I don't; they are healthy and I am not. I'm tired by 4 in the afternoon. I have nights where I do stay out all night, and the repercussions are SOOO not worth it. One night of being young and wild and free (Thanks Snoop) is not worth a week or two of pain.
So I live slower. I try not to be bitter about my situation or the fact that I feel so out of the loop sometimes I could die of loneliness.
It's like watching the "cool kids" in high school and being the geek on the sideline. It's a very hopeless feeling. Almost like, "what about me?" Where do I belong? Who do I belong with? Where the hell am I going to find a group of friends that understand my lifestyle and what I need?
I don't know yet.
But I have faith. God won't leave me standing alone. If anything, being alone is making me realize my potential and I am actually doing things for ME. For once. I think this is the first time I am not relying on a boyfriend, or a "best friend" to take care of me. I have my family, always, but for once I am standing on my own two feet and it's scary but I think it's a necessary part of this journey. Finding my worth. Figuring this disorder out. DOING something useful and helping people out there.
Lose everything to gain everything right?
So really, I'm not losing.
God has that right guy picked out for me already, and those people who won't abandon me due to the nature of my condition are out there somewhere. One word came to me today when I was praying about it today: Patience.
I can do that. If I can fight this disorder, surely I can wait for the rest of my life to start.
So, to all the "normal" 20-something year olds out there, party hard for me this summer. And never take your good health for granted! It is a gift, not a right! Cheers!
The newest Face of Dystonia: and so the advocacy continues.
"A man's illness is his private territory and, no matter how much he loves you and how close you are, you stay an outsider. You are healthy." -Lauren Bacall
Life should NOT be a journey to the grave with the intention of arriving in an attractive and well preserved body, but rather to skid in sideways, body thoroughly used up and totally worn out, screaming "WOOHOO what a ride!"
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