A Rude Awakening

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I can’t believe it.  I didn’t want to believe it.  There were a few signs along the way but none that confirmed my suspicion, until last night. Sitting in the lobby of Le Richelieu, attempting to write my story about one of the many traumatic airport experiences I encountered on my way to a continuing education class in New Orleans, I finally had to come to grips with it.  I can’t write anymore.  Or more specifically, I can’t physically write with my hand.  It was a painful discovery and one that I still haven’t totally accepted.

Whenever I write for pleasure, I’ve always preferred writing with a pen in hand.  There is just something so right about putting a pen onto paper, being able to feel the texture of both in my hands.  But now…Gone are the days of writing in my journal.  Gone are the days of filling up every inch of space on a postcard on my travels.  Gone are the days of recording my daily pain levels by hand in the notebook I keep by my bed.

Damn you, Cervical Dystonia!  You’ve already given me intense chronic pain from the base of my spine to the crown of my head, uncontrollable neck spasms, chronic migraines, a strong pulling of my head to the right, the inability to hold my head up on my own, and Tachycardia.  Once you have Dystonia, the neurological movement disorder I’ve been sentenced to life with, you are more prone to getting this condition in additional parts of your body.  So, Dystonia, since you just had to extend these tremors to my eyes, why did your next victim have to be my hands?  The shaking of my hands last night and the pain I experienced writing each letter in my journal made it impossible for my story to flow.

And it became my new story.  One of frustration and hopelessness.  One that wonders when I will ever catch a break.  One that still holds onto a little hope that one day there will be a cure.  But until then, you had to take away the one passion I still hold near and dear to my heart.  Writing.  Of course, I can still type on my keyboard, even though the computer screen triggers my headaches.  But life will never be the same.

While I thought I was compassionate with my students who hated writing because it was so hard for them to physically put a pencil to paper, I completely understand why it would turn them off from participating in this traditional form of storytelling.  When it hurts to make each curve and line, and your hands tremble so much that you can’t even make out what you wrote, there is no motivation to write whatsoever.

I will eventually adjust.  But at this very moment, I’m sad.  I’m mad.  I have every right to be.  And I hate the fact that I have to wait around to see what curveball gets thrown at me next.  It shouldn’t be this hard.  It really shouldn’t be this hard.

My Hopes:  My hope is that you see this for what it is.  The feeling of hope can only exist when a feeling of hopelessness also exists.  Then you have something to compare it to.  It’s my belief that you have to experience the difficult emotions before you move ahead, and that’s what is happening with this latest development.  Allow yourself to feel.  Just don’t allow yourself to get stuck.

While I hope that none of you have to experience this or have compounded symptoms if you have Dystonia yourself, the most important thing I ask is to talk about this with others.  Educate them. Educate yourself.  Make Dystonia a household name. Even though it’s the third most common neurological movement disorder, raise your hand if you had heard of it before reading this blog.  Or before you were diagnosed with it yourself. Or before one of your family or friends had it bestowed upon them.  I hadn’t. It’s a very rare occasion when someone doesn’t respond with “You have what?” any time they ask about my diagnosis.

I hope I can continue to do what I love, which in this case is writing.  If you have any ideas that involve thinking outside the box, please share.  I can’t solve this one on my own.

 

 

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10 thoughts on “A Rude Awakening

  1. Hi Michelle. My work uploaded Dragon Speaking for me, its a program where I speak and the computer types it for me. I have issues with my elbows (tennis elbow) and this program really helps. Google Dragon software when you have some time, it may help you too.

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    1. Does it usually get your words right, or do you have to go back and make sure there aren’t mistakes? I had a student who used it years ago and am curious how it is today.

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      1. You have to train it to your way of speaking and word use. Yes, you may have to tweak it but it sure does help.

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  2. Dystonia has robbed me of the ability to write too and I hate it. Though I am grateful for the technology which allows me to still communicate with words, there is nothing like the feel of the pen gliding across the page to release your thoughts freely. I struggled with dragon as it affects my voice at times though I think it has improved greatly over the years. I find typing on my phone or tablet easier because I have downloaded a blue light filter for them to help prevent my migraines and eye pain. Take care.

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    1. I’m so sorry it got to you too. I’m very interested in this blue light filter that you mentioned because of all the migraines and eye pain I get too. What is it called? I need to get it.

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      1. It is called Bluelight Filter from Google Play store. The logo is of a phone/tablet which screen is half blue and half black. They do a night version too. I have both as the normal one increase the opacity to 80 but I find when my eye is bad but I am bored it isnt enough so the night one allows you to increase it further. There are other types out there. Hope you find one it makes a difference and less subtle than wearing sunglasses in the dark just to read your phone like I have before.

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  3. So sorry to hear this, Michelle. Dang! (that’s not a strong enough word, of course). It’s heartening to see the sharing of resources here in the comments section. I really hope that you will still have some “good days” with your writing hand. Of course this is just more evidence that you don’t need SS Disability. NOT. On that topic – a previous blog post on the second rejection – I was wondering if you’ve tried getting Congressman Ellison or Senator Klobuchar involved. OR an article in the Strib?

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    1. Thanks, Sue Ann. I have contacted all 3 Congress reps and have been disappointed by the lack of help from each one. And they supposedly won’t fight to get one neurological disorder added to the SSD book because then they’d have to “do it for everyone”. (Insert whiny voice). I expected a lot more, especially from Senator Franken, who actually has written a letter on our behalf to the commissioner of the SSA. But no one from his office will return my calls.

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