“We can endure almost anything if we have someone at our side who truly loves us, who is easing the burden and lightening the load.”
–Jeffery R. Holland When I was around sixteen-years-old I started having these random movements that I could not control and could not understand. We called them my “twitches.” About the only thing we knew about these movements were that they were their worst in the morning shortly after I woke up. I’m talking an upwards of 30 of these fun little loss-of-control ticks every morning. I had gotten somewhat used to them and did not think much of them. The most common form of my “twitches” was my hands flinching. Often when I was putting on mascara. Now, let me tell you, mascara in your hair is an absolute pain in the ass to get out. And in high school I was already typically running late, so sometimes the mascara-streaked hair just was my fashion statement for the day. Less common, but still annoyingly common, was when my knees would buckle and I would fall down. Unfortunately, this usually took place when I was walking down the steps, and you can see where I’m going with this story…tumbling down the stairs. Sometimes, the uncontrollable movement was substituted with me completely zoning out whether I was just sitting there or in the middle of a sentence. Still, because these were just my “twitches” and we did not know what they were, I never really questioned them. The idea of my “twitches” being something that just happened and I would deal with them or grow out of them changed my freshman year of college. They had gotten progressively worse, and the hand ticks were still in full force, plus my knees buckling was also a daily common occurrence. It actually got to the point that I became dependent on my roommate, God bless your soul, Em, for supporting me on the way to an early morning class or to breakfast. On these lovely early morning fall-laden strolls from McGee to Massman, Emily was my human crutch. I commend her, because when I would go down I would go down hard, but she was always good at keeping on my feet as best she could. On one day in particular, when we finally got to the cafeteria, I got some food on my plate and then what do you know, a “twitch” happened and my food went flying. The lunch lady had no idea what had just happened and was feigning annoyance (although, I’m sure a portion was actual annoyance) about how she had just given me my food and I must not have liked it because I threw it on the ground and now she was going to have to clean it all up. This was early on freshman year, and in one of the most public places on campus I had the lunch lady jokingly scold me for dropping my food. I called my mom that day crying. This was it, and I had had enough. I cried through the phone telling my mom that we needed to figure out what the hell was wrong with me because I could not walk to class by myself without falling anymore and I should not have to rely on my roommate to make sure I could get somewhere on campus. At this point, my mom knew that these “twitches” were getting more serious, and that something had to be done. Lucky for me, my older sister, Katie, was a senior at Rockhurst at the time and I had her to help me through whatever this was as best as she could. We had an inclination that these were seizures, so the term “epilepsy” came up. Shortly thereafter, Katie gave herself the title of my epiligiologist. Not a real thing. For Katie, however, it was a newfound job. Basically, what she would do was videotape what was happening to me so we had footage to show the neurologist I was scheduled to see soon. What this meant is she would wake me up early when my “twitches” were at their worst, and I would walk around campus, usually accompanied with one of her roommates who would help catch me if I fell and Katie camera in hand. We got our best footage one morning when I was walking my youngest sister, Claire, to her bus stop before school. The appointment was drawing near, and we—Katie—wasn't satisfied with the current footage. Katie took her self-appointed position seriously, that I will give her. I was standing at the bus stop talking to a mom of a young boy up the street. A twitch happened, and I remember the mom saying something to the effect of me having weird dance moves and laughing. Immediately I became furious and wanted to go back home and go back to bed. She did not know what I was going through. I didn’t even know what I was going through. How dare she laugh?! I saw the footage later, and truly do not know how she did not laugh more to be honest. One second I was standing there, and then the next I resembled a flailing frog mixed with a newborn deer. Katie had found her diamond in the rough. After showing him the video, the first thing he said was, “Huh.” Comforting. He then consulted another neurologist outside of the room and then came back in to tell me that they weren’t sure about whatever was going on in the video. Awesome. He said that they believed it was a myoclonic seizure or a myoclonic jerk. He proceeded to tell me that if it was a seizure, there were ways to treat it, but if it was a jerk, we would let it go for a while and see if I grew out of it. At this time I had been twitching/jerking/seizing/weirdly dancing/whatever you wanted to call it for over two years and it was getting worse and I was not about to “see if I grew out of it.” I told him my sentiments and we agreed to do an MRI to rule out a brain tumor and an EEG which tracked my brain’s electrical activity. So, after my scalp was colored on, lubed up, and stuck with electrodes, we were on our way to discover…nothing. In the time that they did the EEG, I did not have any abnormal brain activity. So, the next plan was a V-EEG. This meant that I got to wear these electrodes that were connected to box at the base of my skull for two days with gauze so heavily applied to my head that it looked like I had just had major brain surgery. The stares I got leaving the hospital walking were priceless. I think people thought they were witnessing a miracle. After two sleepless nights because the box was so painful on my head, I finally had a diagnosis. I have epilepsy. Finally, an answer to the madness! Here comes a line that shows up in just about every blog post...the brain is absolutely fascinating to me. (I promise I wrote this a really long time ago and don't intentionally try and work that line into every post...) Every single movement we make requires thousands and thousands of neurons passing a message from one point to another. During a grand mal seizure (the bad one--the one you see on the TV shows), thousands of neurons are sent with no destination, and that is when the seizure takes place. It is my body’s attempt at using all the neurons that my brain is sending. The fact that I can take something twice a day that acts as a neuro-inhibitor and stops all my misfirings of neurons never ceases to amazes me, but it does cease my weird dance skills. That I'm okay with. For me, my pill acts as a stabilizer. My life was incredibly shaky (literally) before we figured out what was going on. This little yellow pill that I take twice a day helped stabilize my brain and my body, and I am so thankful for it. I desperately needed this stabilizer in my life. I think most people do. Not in the sense that they have uncontrollable muscle movements, but uncontrollable life experiences. People can act as stabilizers for each other in a similar was that my pill does for me. If I have learned anything so far, it is that life is joyful, messy, beautiful, unpredictable, every-emotion-under-the-sun, and yes, sometimes shaky. We need other people as support systems to help us stand on our own two feet when it gets hard like Emily did for me. (Thanks again, Em.) We also need to remember to be the support system for other people as well. This is not only talking about the physical aspect of support either. Emotional support should never be overlooked. There is something about just knowing that you have someone to help you carry the load if it gets too heavy that sometimes eases the load. I think it’s one of the pillars of a good life. To lighten each other’s loads and find others to help lighten our own. When you find these people, hold onto them (as well as their loads), and never let them go. Always, Molly
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“My point is, life is about balance. The good and the bad. The highs and the lows. The pina and the colada.” – Ellen Degeneres
Balance isn’t exactly my thing. I try and I try, but I’ve realized the harder I try and attempt to mentally will myself into holding a yoga pose or some other physical feat requiring balance, it seems to inadvertently make me stumble. I find that there are times that I am playing a gnarly game of Twister against myself. And it’s all tied up—haaa. Okay, sorry… In yoga, often people are told to find a focal point to fix their gaze on, and it will help you stay balanced. This focal point is a drishti. I’m trying to find my drishti in life. Here’s the thing, you’re going to fall. I’m going to fall. I don’t mean to sound like a Debbie Downer, but such is life, right? (Also, quick sidebar, if you ever are feeling blue or just need a laugh, the link for the SNL Debbie Downer skit is at the end of this post. Betcha five bucks it’ll make you feel better. Empathetic Subway Screaming is also a five-minute podcast through the Moth that never fails to brighten my spirits.) A lesson I am learning through yoga—and my struggle with balance—about life is how to fall a little bit more gracefully. Where I used to get embarrassed if I fell out of a pose, now I can say to myself, okay, start over, try again, here is your drishti, focus, breathe in, breathe out, go. And then typically by then it’s time to change poses because others have been holding it for long enough. No matter, I’ve found that the more I’ve accepted that I will fall, the better my balance has become. Don't get me wrong, there are still some times I lose my balance like good ole Buzz Lightyear...falling with style. Though more often less stylish, and usually trying (and failing) to suppress a weird noise...anyway, moving on... I’ve been working on my balance, both on the mat and in my everyday life. As a soon to be graduate, I have an unnerving amount of question marks hanging over my head. I guess I could say I'm balanced with nervousness and anticipation. Although currently, the scale is slightly off kilter on the side of nervousness. I'm still very much in that state of frisson. Here are just a few things that I have learned that I can and am actively working on applying off the mat:
Always, Molly As promised here are some links that never fail to brighten my day: |
AuthorJust a twenty-something attempting to create the illusion that I have a clue what's going on... Archives
May 2017
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