A Favourite Quote & Essential Tremor

It’s really hard for me to pick a favourite quote. I could make giant detailed scrapbooks illustrating hundreds of sayings and easily be able to tell you why each one is important to me. I have prints and quote boards plastered around my room and a majority of the 24,000 posts on my Tumblr are sayings or lyrics. I even got a comment on one of my YouTube videos saying I like quotes too much. There are thousands of pages of Word documents saved on my computer that are literally just quotes I’ve found off the internet. I just uploaded 400 quote images off my phone that I had taken screen shots of over the past two months.

That said, there’s no way I can pick a number one favourite. When both of the prompt challenges I’m currently attempting on this blog (Today’s Prompt: A favourite quote/ expression and how it has impacted you. // 19. Your favourite quote and what it means to you) had similar ones based on picking a frontrunner quote, I decided that instead, I’m going to talk about one that is most important to me and is something I have adopted as kind of a personal mantra.

“Speak your mind even if your voice shakes.”

― Maggie Kuhn

It’s nice, right? Short and sweet and just inspirational enough without being cheesy. The speaker, Maggie Kuhn, was the founder of the Gray Panthers movement. The Gray Panthers fought primarily for the rights of elders, as well as supporting anti-war and environmental campaigns.

One of the things about quotes that I really like is that these phrases can work for so many different people, regardless of their original context. The first time I saw this quote, I teared up.

I have a nerve disorder. It causes my body, mostly my voice and my hands, to shake uncontrollably. Most of the time it’s quite minor and almost unnoticeable but it gets worse if I’m nervous, angry, upset, or simply if I just haven’t eaten. The best way for me to show people is to hold out my hands as they’re always shaky and my voice has a audible vibrato most of the time. It is almost indistinguishable when I am calm and with people I am completely comfortable with but gets really bad in any sort of performance situation which can be anything from a class presentation to simply signing for a package. When it is really bad I can’t control my jaw or my mouth and to be honest I don’t know what I look like as this is almost always during class presentations. These always end in me feeling ridiculous and embarrassed. Once it was so bad that I had to stop in the middle of presenting and ask for a chair because my legs had started to shake too and I felt like I was going to collapse. Another time my uncle verbally attacked me in a parking lot for teasing my cousin. He was screaming and called me names, which resulted in me getting so flustered that my legs just buckled, leaving me sitting on the gravel and not being able to regain control of my mouth in order to talk for several minutes. Definitely not a moment that I want shown in my life’s highlights reel.

I was initially diagnosed when I was about fifteen. I didn’t pay attention to what it was called at the time because I just thought it was funny that my doctor told my mom the best way to treat symptoms was with alcohol. Since then I’ve just been telling people that it’s a nerve disorder. I was initially prescribed a pill to take every day, that I believe was a beta-blocker. The idea of taking that daily pill wasn’t very appealing to me and I didn’t find that it did much of anything so after I finished the first prescription I never refilled it.

Performing has always been a part of my life. I used to make up songs and gather up my friends and family and make them watch as I put on mini-musicals for them, often while wearing my Sleeping Beauty dress with rubber cowboy boots. I conistently got lead speaking roles in elementary school plays. Growing up, my brothers and I and our friends would make plays for fun and often filmed them or preformed them for our parents. Even though I was often the writer/ director/ camera person… It was something I loved. I took acting lessons for three years and drama class in high school. In grade 11 I quit drama because my tremor got so bad that even though I would have all my lines completely memorized, the second I went on stage I could barely speak without sounding like I was taking a ride in the dryer. It was so humiliating that I switched to art as my elective.

After a series of panic attacks that I dealt with over the past couple months, I wanted to take control of the things I am able to, and the best way to do that was to figure out exactly what I’m dealing with. Information is power and all that good stuff.

My nerve disorder is called Essential Tremor.

When Essential Tremor (or ET) is found in other family members it is known as Familiar Tremor. My grandfather had Parkinson’s for the entire duration of the time I knew him and sometimes people with ET are misdiagnosed as having Parkinson’s or have both simultaneously.  As he has since passed away there is no way of knowing if this is the case but as his Parkinson’s was a result of a series of small strokes he had in his early eighties, it’s unlikely that what I have is the same. I was concerned that perhaps this means I could develop Parkinson’s also but much of the research I have done says usually onset of Parkinson’s in ET patients occurs within ten years of ET diagnosis, so hopefully I’m in the clear! The main difference between ET and Parkinson’s is that the latter is an “at rest” tremor which means the shaking generally occurs when you’re not doing anything, while ET tremors usually occur to muscles that are in use.  Essential Tremor is more common than Parkinson’s and is THE most common neurological disorder. I have had it for ten years and never heard it being mentioned outside of my doctor’s office, so if anything comes from this post, at least one more person will know that this condition exists!

Something that was really valuable for me personally was a video on the ET website. It shows people with varying levels of the disorder talking about it and their personal struggles. I actually got really emotional because it was the first time I’ve ever heard another person talk about what I have been experiencing for almost half my life. While I do have a comparatively mild case, it was so overwhelming hearing people talk about these seemingly trivial things that I’ve always been insecure about but never been able to tell anyone because it just sounds so strange. Something that anyone else may not have even noticed was the part of the video that hit me the hardest: a quick shot of someone (shakily) picking up and pouring a glass of water from water jug. That is literally one of the hardest day-to-day things for me to do. I hate having to pass water jugs across the table and it takes serious mental exertion for me to concentrate on not shaking when pouring my own or someone else a glass of water from them.

Sometimes when I’ll be doing something like writing or colouring I’ll have a quick tremor that feels like a twitch and my pen will leave a trail. It’s also happened multiple times when I’ve been cutting something out with scissors and my hand will move and I’ll cut through something I didn’t intend to. When I would get my nails done I’d have to look away and repeatedly count to ten over and over in my head to redirect my focus and minimize the larger shakes. No matter how hard I try or how many “fool-proof” YouTube tutorials I watch, I’ve never been able to do my own eyeliner.

I have always tried to be really casual about my nerve disorder and laugh about it. I think part of it is because I don’t want to make people uncomfortable, but I think it mostly comes from not wanting people to think less of me. It’s something not everyone understands. It’s easy for me to talk about my chronic migraines because everyone has heard of those, and as much as I dislike it, even depression has a bit more sensitivity surrounding it. But this, I think, bothers me because it’s deeper. It hurts that I have been accused of faking it for attention. People have tried to minimize it to the point where I feel guilty and try to hide it around them, which is exhausting. I hate that it makes me look weak or inferior and that no one is ever going to call me charismatic or confident or complement my ability to command a room. And then I think about my dream of being a novelist and wonder who the heck would ever come to a book reading where the author’s voice makes it sound like they’re sobbing? I mean hey, maybe at the really sad part but the whole thing? It would be painful. And even I know that.

That’s where the quote comes in.

Even though I am an introvert and can be quite shy, I have no problem with speaking my mind. Maybe it comes from being the bossy oldest child and the only girl with brothers. I’m not a mystery. I’m not the girl you see sitting alone looking dark and intriguing, who you have to spend years slowly getting her story out of. I’m an open book. I wear my heart on my sleeve and I don’t know how not to be that person. I will tell anyone pretty much anything they want to know. I know who I am, what I want, and I own my story.

Even though it is physically difficult for me to talk to large groups of people, I never want to hold back because of that. I have always made an effort to live life without any regrets and I’ve gotten this far successfully. I truly believe in not withholding my feelings, thoughts, or words because I don’t want to be sitting in my room alone later wishing I had spoken my mind.

I know that I don’t look tough or steady or confident when I’m standing in front of people shaking like someone struggling to fend off hypothermia. I also know that I could likely get out of many of those situations and blame it on having a nerve disorder with a Mayo Clinic page and a lengthy Wikipedia article, but I don’t. I am still coming to terms with a lot of things I have no control over, including my Essential Tremor but I own those things. I have put myself out there and, yes, I have been hurt and heartbroken and have crawled into bed vowing to become an emotionless recluse. But that’s not who I am. I will continue to speak my heart and my mind even though it would be a whole lot easier and safer to keep things locked away and not emphasize my vulnerabilities. I have had to own a lot of things about myself that would really be a lot easier to tuck away and deny the existence of. But yet, I seem to be really keen on spilling my guts on the internet for anyone to see.

I believe courage isn’t just found by looking tough and stoic and steady, but instead found in the people who share their story despite not being those things. Strength is not holding back your feelings, but being strong enough to share them knowing that people can judge you, hurt you, and reject you because of them.

It’s happened to me. But I’ve learned to just shake it off.

(Pun intended).

For more information on Essential Tremor, I found the following resources helpful:

Thanks so much for reading this post. I hope you’re having a wonderful day 🙂

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DISCLAIMER: Part of the prompt for this post was originally from BraveLoveBlog's Blog-Tember Challenge. I did not complete Blogtember during the month of September but adored the prompts so I am going to continue using the prompts out of order. ALL credit for the idea behind Blogtember and the creation of these prompts goes to Bailey Jean and her blog, BraveLoveBlog. You can find her original list of Blogtember 2015 prompts HERE.

6 Comments

  1. Catherine Richardson
    April 28, 2016 / 4:05 pm

    I really really loved reading this. I relate to a lot of it, and I so appreciate how honest and genuine you are. Plus medical puns are my favourite 😉
    P.S. I would be really stoked if I got to attend your book reading one day!

    • Adrianna
      April 29, 2016 / 5:17 pm

      Aww thank you so, so much Catherine!! That means more than you know!! 🙂

  2. October 3, 2016 / 9:38 am

    I really like reading about how others deal with ET in their day to day lives. And I love that quote you have about speaking your mind even if your voice shakes. I wrote it down so I don’t lose it.

  3. Jen
    May 1, 2017 / 1:35 pm

    Hi adrianna I just watch your video about ET and i just want you to know that i was so inspired by how you look super okay with it , how positive you deal with it. Thank you for making me feel like I’m not the only one. Im so embarrassed by my condition and it makes me unconfident to talk in front a lot of people or even to meet someone new. I just don’t know how to explain to people when they ask , why are you shaking?

    • Adrianna
      August 26, 2017 / 11:57 am

      Hi Jen!! Thanks so much for your kind words!! 🙂 You’re not alone… We’re in this together!!

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