Tuesday, January 30, 2018

The Storm

Strong. What the heck does that even mean anyways? I can tell you one thing with no shame, physically I am pretty weak. Five pound weights can go to hell. 

But I have long been lauded as 'strong' for speaking out about my struggle with Parkinson's. Often people ask me how I did it all, how I am still here, still speaking, still going 'strong.' People seem to think that if they were me they would not still be here, or at the least not still be happy. But I believe that assumption is false. When we have no other choice we fight because in the end we have a zeal for life. You do not realize how much you want to live until you are staring brain surgery, a feeding tube, IV nutrition, ect., straight in the face. You do not know just how much you love living until you are in the middle of the ocean and you can sink or swim. I promise you would swim as hard as you could because drowning is unimaginable. 

Things have been so hard lately. I have felt like it is the end of the rope over and over again, even when good things are on the horizon, they just do not feel good anymore. I am so close to getting off of TPN, and yet that is clouded by the protein deficiency I have aquired in the past few months. Due to the shortage of IV nutrition thanks to the hurricanes that wiped out the manufacturing of vital IV supplies, I have been on half protein for months. Lately exercise has left me in bed for days, and that is due to not having enough protein to rebuild my muscles. The muscle mass I have spent over a year to develop is practically gone and the activities that bring me joy, like dance and rock steady, have been impossible. I finally got the answer to why in the form of a blood test showing how low my protein level was. The good news is being almost off TPN, my formula should remedy that. But it is still just a blow right now. Instead of feeling happy that I finally got answers, like I normally would be, all it feels like is how stupidly unfair this problem was to begin with, how the pharmaceutical system screwed over me and thousands of other patients who depend on artificial nutrition to survive. 

Also, I just want to eat a freaking pizza and I know that would just mean misery so I don't. I take a few bites here and there and even that hurts a lot but it is all I can do and I have to accept that. And I do. But sometimes, its just unfair, and not admitting that is lying to myself. Not saying that is not fair to myself, and is more harmful than anything. 

I am realizing how often I say 'its okay' when people pity me. How often I make excuses for my failed health, how I justify being 23 and having the past nine years of my life defined by Parkinson's. Its not okay. It is not okay that I can barely remember who I was before this disease. 

Actually, before this disease, there were some rocky years. I got sick towards the end of Freshman year of high school. I was 14. 14 was the first year of my life since 11 that I was happy, the middle school years for me were full of self hatred and angst. I was finally free. I finally felt accepted, felt worthy of something. Felt like I was good at something, like I could see beyond where I was then and knew that a future was ahead of me that could be full of possibilities. And then it happened. It was April and I felt a pain in my leg. And nothing was the same after that ever again. 

Here is where maybe I turn back into the eternal optimist (with a big wedge of sarcasm and cynicism). What happened after that was amazing and awful all at once. The timing of which I got Parkinson's, as cruel as it might be, also was perhaps the best thing that ever happened to me. I love who I became because of that time. I had to give up singing, which was my world at the time. I defined myself by my operatic ability. And suddenly, I could not make it through a rehearsal. I couldn't stand for a performance. My once rich tone and vibrato became horse after half an aria. Doctors appointments replaced voice lessons and a dream was taken from me. 

Grieving that loss was the hardest thing I had to do at that point in my life. It sucked. But it made me stronger. And it put me in a place of emptiness, at just the right time for me to find chemistry and art, the two things that became my life. I learned that I needed to fill up the creative space left by music with something, and I learned that creating something from nothing gave me the clarity and strength to work through hard times. Late nights of pain have long produced some of the pieces I am most proud of, and the practice of creating filled the hours of pain and kept my mind off of misery. A quilt for my cousin's daughter was made in the days following my brain surgery, where I needed something to fill my time and keep me sane in my recovery. I also discovered my passion for science in the year following the onset of my Parkinson's. Chemistry filled my mind with infinite possibility, attempting to understand the molecular world expanded my universe, and has captivated me ever since. I had something I was once again good at, and a new passion, one that is my passion to this day. I also took my health into my own hands as the more science I learned, the more I understood my broken body. I started reading medical research, and what began with me looking up every other word ended with me developing a medical lexicon in my head and assisting in my own diagnosis. Chemistry gave me the power I had lost back. I went to college because it rebuilt my confidence, because I had a need to keep learning. I do not know how I would have started college with an undiagnosed disease that was quickly robbing me of my motor skills without that passion. It was at times the only thing pushing me forward. 

As much as I can look back on my teen years and see the childhood that was cruely taken from me, I see the person who I became because of how it broke me down and how I had no choice but to build myself back up. But here is the thing never spoken. Talking about that now is different than when I lived it. Talking about it now doesnt take into account the times I left doctors appointments with my head held high to promptly collapse in the elevator because the doctors didnt believe I was sick and told me it was all in my head. It doesnt account for the nights I woke up screaming in pain, the times I went to school despite a three week long muscle spasm that was so severe you could see the groove in my thigh. It doesnt show the times where the fabric of my uniform skirt hurt so bad as it brushed against my skin, the class retreat a teacher made me climb a rock wall for 'team bonding' and my body went rigid half way up, the belayer having to lower me and my inability to even land standing. You do not see the times where I pushed myself to be able to do stupid teenage girl things like wear uncomfortable shoes to a dance only to end up in extra pain for the next two weeks because I just wanted to be normal for once. 

None of that shows when I talk about my teen years because to someone in their 20's, that is ancient history. And when I look back, even though I remember the heart break that was so much of my teenhood, I feel proud of what I did with all of that. I feel strong because I made it through and I like what I became because I swam through the darkness. But if you asked me at that time, I would not have admitted it, but it hurt. It was not okay. 

College for me is divided into two parts. The first two and a half years where I achieved so much, while my health was remotely behaving, and I felt unstoppable, and the three semesters that followed the crash of my health, where I had two brain surgeries and a feeding tube put in. 
While I was pretty sick the first five semesters, I pushed through and I did a lot of living. Yes, the ER was a frequent thing when I did too much, and while my friends were partying I was sleeping, I got to do some living in between. I got to do what I love, and to travel, and to just for a moment pretend my life was typical. There were moments of course, Freshman halloween sticks out in my head. I had been on PD treatment for a few weeks at this point, and I had gotten ready for the frat party we were all going to go to. A ten minute walk from the dorm. I got ready, I knew better than to 'pre-game' as I could barely get around sober, but I had fun putting on a skimpy costume and makeup and taking silly pictures with my friends as every 18 year old woman who wants to should get to. And then it was time to leave, and walking to the door of the dorm hall, I had to turn around. I could barely walk the hall of the dorm, I was not even going to make it to this party, let alone enjoy it. I made my way back to my room and the RA thought I was drunk because I was hugging the wall. After explaining I was sober, just sick, I went back to my room and traded my costume for pajamas and washed all of my makeup off, and climbed into my bed. That night I learned that there were certain things that were just not for me. As time went on I made different friends, the kind that loved me for me, that traded wild nights for movie nights, the kind who brought wild nights to me, and made memories that will last a lifetime. When I look back on halloween of Freshman year I no longer feel the pain of what happened because I think of the times that despite illness I had so much fun. Perhaps it was different fun but the nights that turned into mornings with people I love are my favorite college memories. The people I call family made those years beautiful even when they were painful. 

Even the night my health crashed junior year I have a happy memory of. That night, where dyskinesia took over and I knew it was the beginning of the end, what made that night beautiful was that my friends were there. They held me when I sobbed uncontrollably. They laughed with me when filming a clip of my dyskinesia to show my neurologist, I was more worried about how messy my room was than the uncontrollable flailing. We cried until we laughed together. When the valium I took finally knocked me out and I was falling asleep while talking they pulled me up into my bed and tucked me in. One of the hardest nights of my life was marked with an amazing display of friendship. 

That is why I feel all of the crap feelings I feel right now and I know that they will end and a brighter road is ahead. Those examples are only a few. So much more is on my heart right now, I think of the incredible displays of love that I have been lucky enough to recieve. I think of the friends that are still my family from high school and college. I think of the teachers and professors and faculty who still believe in me and encourage me. When I decided to delay grad school again this past fall, a decision that I know is right and yet still stung, the words that meant the most was from the people who were writing my letters of rec, who said that they were proud of my decision. That it was the adult thing to do, that I would be a better scientist by my experience and by waiting until I was able to put my all into it, and that they will still support me fully whenever that dream does happen. 

Right now, when I have been struggling to find joy, when I have felt emotionally beaten up, when my anxiety is uncontrolled, I know that brighter days are ahead because for the past nine years, in a constant storm, 100% of the time I have gotten through hell and have lived to tell the tale, and as a scientist I believe in evidence. When I do not feel like there is a light at the end of this tunnel I remember the times in the past that I have felt lost. I remember that in the end I was always found. Strength is not pretending that pain does not exist, but feeling it all and still believing that life is worth living and loving. Strength is knowing that even at the worst moments of your life, even when the pain feels to great to bear, someday when you look back, you will feel more than just pain. Perhaps it will be a memory that makes you smile, not because of how much it hurt, but because of beauty that you couldn't see at the time. 

I am tired of metal detectors

I am up late writing this at 1:20 am on a saturday night, or sunday morning if you will. The reason I am up is my PD insomnia as usual, but ...