Fibromyalgia has robbed me of something I love

I sit here waiting for the train to pull out of the Aurora transportation center looking at a partially blank screen. I look at the keys and pine for the past when typing out my feelings, thoughts and ideas was so much easier. I miss the days when writing was a breeze and the thoughts flowed so freely and purely that the back space button sat lonely on the keyboard.

I want with all my heart to believe that it is just a dry spell. I try to understand that I don't have to be able to knock out a page or two in a hour and it isn't necessarily the way I have to write. Taking my time, letting the words come on their own, may be the way I need to proceed.

But I will be honest. I hate it. In the darker days, I see a few of my dreams evaporating away, so much so that for a few months now an ugly four letter word has been playing around in my head. Quit!

I say to myself that the stress of putting two coherent thoughts together on a page isn't worth it anymore.

I have been writing for nearly my entire life. In high school, I found poetry, short stories and skit writing as a way of expressing what I was going through at the time. In college, I tried my hand at scripts for television and even had one read by the writing team and a producer at Paramount Pictures. Now blogging and short essays are (or maybe was) my thing.

I haven't quite come to terms that my brain is not what it use to be. I have talked to several others who have been diagnosed with Fibromyalgia and have experienced many of the same symptoms and experiences I have. Call it Fibro fog. Call it ataxic aphasia. Call it what ever the hell you want. It has robbed me of something I enjoy and it has affected my entire life.

In my daily work as a professional picture framer, I must pay careful attention to the numbers I write. It's kind of important when you are measuring art work and ordering expensive frames. A '9' may be on the work order but my brain could register it as a '7'. A '3' could become an '8'. I have learned I must double check everything due to the fact I don't know when it is happening. It could last for just a brief few seconds or last for days. Measure twice, cut once has never held such deep truth than it has for me the past few years.

Writing has become just as laborious. The days are rare that I can sit at the computer and type out a blog post without an intense struggle to stay focused, to be able to connect the dots of the thoughts on the page. And when the thoughts do come, putting them on the page doesn't always work.

I drop whole words or phrases from sentences. I substitute words with out knowing. I will often write the same word twice. Frustration doesn't even begin to describe my feelings when this happens.

Editing takes on a whole knew level for me when I am looking for more than misspellings and poor punctuation. I actually have to edit on the fly. I have to stop every few sentences or paragraphs to make sure the ideas flowing from my head have actually made it to the page. You can imagine what that process can do the natural flow of communication.

Even now, the flow of thought has stopped in relation to how to continue this post. The span of time between each sentence being type seems endless. I stare at the cursor with disgust. It's not that I am distracted by the signs on the buildings that line the road next to the train tracks. It's not the distractions of the other conversations going on in the train car or even the music in my earbuds. It is a true lock-up of ideas. I only write what I can get around the blockage.

Imagine if you will a busy highway. Every word, every thought you have is a car on that highway. When the ataxic aphasia hits, it is as though one of those cars just dies right there in the middle of the road. And you all know exactly what happens next. That stalled car ties up traffic all around it. Some thoughts and words can make their way around it, but typically at a slower pace.

I hate that I have to step away from the computer after only 400, 300 or even a measly 200 words. I hate that pieces I have started are collecting digital dust in my saved folder waiting for me to return.

As I sit back and look at all that I have done  over the years and what the present situation entails, it has left me wondering if stepping away from the blog is what I need to do for now. But then I wonder if the readership will still be there if and when I return. I fear that I will loose my voice all together if I do step away.

Easy decision it is not.

So for now, I leave the decision to time it's self, to let things play out on their own and see what happens. Maybe when stress is less of a factor, when the fog has cleared a bit, I can continue to do something I have enjoyed. Maybe one day I will recapture what the Fibro has robbed me of.

CHICAGO TRIBUNE VIDEO

Leave a comment

  • ChicagoNow is full of win

    Welcome to ChicagoNow.

    Meet our bloggers,
    post comments, or
    pitch your blog idea.

  • Advertisement:
  • Meet The Blogger

    Meggan Sommerville

    Meggan Sommerville is a Christian transgender woman with a heart for educating others about the transgender community and her faith in her Savior, Jesus Christ. Her career life has taken her on a variety of adventures, from being a veterinary technician in the Western burbs of Chicago to being an EMT/Paramedic, EMS instructor, and a paid on call firefighter for Bolingbrook , Illinois. Since 1998, she has been the frame shop manager for a national craft retailer. You can contact Meggan via email at Meg.Sommerville@aol.com or find her on Facebook at Trans Girl at the Cross

  • Recent posts

  • Monthly Archives

  • Tags

  • Latest on ChicagoNow

  • Advertisement: