Tuesday, October 17, 2017


Life has been a complete mess for the past few weeks and I didn't realize just how easy it is for something to come in and take over and make you feel like every little thing that you have worked so so hard for is all for nothing. Its easy to look back and only see the darkness, to forget how much you want the beauty that is ahead of you. 

This picture, circa October of 1999 at some awkward elementary school track and field thing, is one of the pictures I both hate and love the most. On one hand, it reminds me just how awkward and clumsy I have been for my entire life. I basically just got longer, not more graceful. And this has nothing to do with the Parkinson's that would hit me in my early teens. Well, maybe. That is debatable. Looking back I can see some signs even as early as this picture. Maybe I was just a really awkward runner or maybe there was early disruptions in my movement. Maybe my handwriting is just ugly and I couldn't use scissors very well because that was just me or maybe my motor skills were not developing properly. I have thoroughly thought this one over and over and my conclusion is there is no way to tell if early motor disruptions were early parkinsonian features or if I am just awkward in a non-neurodegenerative way. 

Regardless, this picture represents a pre-parkinson's me, the girl who was unknowingly growing up with a part of her brain degenerating, the girl who had no clue that in less than a decade she would be disabled. The girl who even though she was in last place because she really sucked at running, still had this look of focus and extreme determination. No matter how bad I was at running or how far behind the other runners I was, I had this spirit of fight in me that held up all the way through to the finish line. I could push out everything and anything and just focus on me getting myself to where I need to be, the fastest and best that I personally could, while ignoring the rest of the world around me. Instead of getting distracted by my last-place status, or anything else that may have come in my way, my motivation and determination never wavered. 

If only I could look back at this awkward little me, and see the same fluffy blonde hair and the same lack of grace while running and channel her, 18 years later. I could really use her right now.

Because at this moment, 18 years later to the month, this girl is a woman, in her mid 20s, and has come so far from this awkward elementary school track meet forever captured on primitive film. This woman still has this spirit of determination somewhere deep inside her, even though right now its really, really hard to find. Right now, I am fighting myself so hard to find the fight within myself, and its not working all that great. 

The past few weeks have been hell. And it shouldnt have been as hard as it was, but I was in a good place before it. I was doing really well. I had scheduled the GRE. I was getting all into the game of my grad school application. I was feeling like I was getting back up and that the future was bright.
Then, my allergy to adhesives intensified overnight without warning. 

My central line, which I have had for TPN for a year and a half, has always been an issue. I used hypoallergenic dressings and still had a reaction but it was tolerable. About two weeks ago it went from itchy and a little but of redness to full on welting and hives and bleeding. It got to a point where I had to go without adhesives, ended up in the ER, and have been in a benadryl-induced state of barely awake for two weeks. I finally got on steroids for it and am finally turning the corner, finally my skin is starting to heal. It felt like acid had been poured on my chest. It was truly awful. 

Now that I can have no adhesives anywhere near this, it scares me a little having an open central line but I have been assured it is safe. Still, the amount of healing that I have left is tremendous. My skin had been devoured and it hurts so badly. I didn't see this one coming

It amazes me just how easy it was for something to come in and flip my whole world over and make me feel like life wasn't even worth going on. These past few weeks I have felt a little hopeless, like something so seemingly small could just come in and take over and ruin my life, ruin my chances of getting back into science next year, it made me feel so lost, like I felt when I graduated and had to move home for health. Plan C as I called it. 

But I am going to get back up. The spirit in this picture is still within me somewhere. I just have to find her. 

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