Thursday, July 30, 2015

Easier Done Than Said: Dreams and Hurdles

I’m not sure I’ll post this. If you’re reading it, obviously a) I didn't chicken out, and b) wow, someone’s actually reading it. Thing is, I’m not sure what I want to say, only that I want to say something. 

I, the ultimate plotter, am going to pants a blog post.

Saying something is no longer anything I take for granted, you see.

About ten years ago, while driving down Broadway Street in New Orleans on my way home from the day job, I was singing with my radio. Although it wasn’t the “day job” at the time because writing novels had never even entered my mind and wouldn’t for several more years.

Nothing was unusual about that day. I still didn’t know the city was going to go to hell around me in three or four months at the whims of a hurricane named Katrina. I was just driving along and singing with a James Blunt song called “Tears and Rain.”

And I couldn’t hold a note without my voice breaking.  

Now, I should say here that I can’t sing worth a crap. I can’t carry a tune in a bucket—or a car. I sing only in places where I can’t inflict my caterwauling on anyone else. But I love music. And on that day, I couldn’t hold a note in the middle range of my voice.

Fast-forward to last year, when I realized that I was holding a coffee cup with two hands because one hand was shaking so badly. Then to last month, when I found myself sitting in a neurologist’s office in Montgomery, beginning a frustrating six weeks of indifferent medical care and scary reactions to medications with less than a 30 percent chance of working.

The good news? It wasn’t Parkinson’s Disease, which was the fear. The bad news? It’s PD’s benign cousin, Essential Tremors with Dystonia. It’s progressive but not fatal. It’s annoying as hell. It can’t be cured. It often can’t be treated. The voice that has gotten so bad that I avoid talking? It might—maybe—be helped by getting Botox injections into my larynx every 3-6 months for the rest of my life. Which can only be done a three-hour drive from where I live. I haven’t made a decision about that yet.

I’ve gotten past the whining, honestly, and if this sounds whiny, my apologies. I’ve also gotten past the anger. Well, most of the time.

I think all I’m trying to say is that I need to speak more than I ever would’ve thought. I'm a writer, after all, not a speaker. But I worry what people will think of my shaky voice and shaky hands. I dread meeting new people, ones who don’t know that I’m not nervous, shy, frightened, or upset. I just sound and look that way. I worry about meeting people and doing panels at a writing convention next month. I worry about a four-hour meeting I have to lead at the day job in September.

But we can’t let crap like this define us, can we? A whole lot of people have things a whole lot worse. I will eventually learn to adapt. And by God, I can still type like a demon to write books and I’m still learning to improve my French using my broken voice. I still try to sing, but it’s worse than ever. Don’t worry; I won’t subject you to it.

I guess here is where this post is leading: We all have dreams and we all have hurdles, whether it’s the dream of writing a best-seller or the hurdle of facing an unexpected medical condition with no cure.

We all have hurdles. It’s how we confront them that matters. We might reach our dreams and we might not. But if we lie down in front of the hurdles that look too daunting or frustrating or embarrassing to go over, we will surely get nowhere.

Next time I see you, if I sound shaky or upset? Just ignore me and shake my hand…if you can catch the damned shaky thing J. And that, I think, is what I wanted to say.


Liz S. said...

Oh Suzanne, this is an excellent post. I hear your frustration with the medical world. I just went through this with my mom. She had hallucinations with one of her meds. She is reluctant to go out and eat due to her tremor. She has a hard time signing her name. I appreciate your willingness to share with your readers.

Suzanne Johnson said...

Thanks, LIz--that's MUCH appreciated. The meds I was given sent me into early-stage heart failure. The MD finally returned my frantic phone call, told me to quit taking the meds and go to the ER, then never called to see if I died or to prescribe another med. So I'm untreated and unmedicated again. I'm learning what I can and can't eat in public--soup and anything that has to rest on top of a fork are off the table, so to speak. My handwriting isn't too bad yet most days. I think doing art helps with dexterity and is teaching me tricks to control it. The vocal issue is a big problem but Botox in the larynx? Yikes.

Carla Swafford said...

Go see another doctor. One thing I've learned over the years is that doctors rarely know more than what we tell them, and sadly, they see so many people, they lose their compassion.

Suzanne Johnson said...

Thanks, Carola. I will start over--just trying to get past some deadlines and trips. I have a WONDERFUL primary care physician, who'll have a hissy fit when she hears how this has gone down, so I'll start over with her and then look for a different neurologist.

Suzanne Johnson said...

LOL. Carla, do you like your new name? "Carola" has a nice ring to it!

Roger Simmons said...

Suzanne, thank you for sharing with us. Second opinions can be very helpful. I know you said you are a writer not a speaker, I think you speak to us through your writing all the time. Thanks for that.

miki said...

i really admire your courage and i can understand your fear. Since her stroke my mother has difficulties to speak and it frustrates her but some people are also really bad about it moking her or trying to take advantage and it doesn't help teh mood at all

Like Roger said, your writing is part of your voice and we are really grateful for it. i hope you will find a good medecine that works with minimal side effect to help you but please never forgot that we are here if you need it to vent or just to remember that you have people behind you

Never give up !

Jillian said...

I am sorry that you are going through this and I admire your bravery in sharing the info. You are one gutsy lady and you will find a way to make your life still everything you want. Keep singing. All us other caterwaulers will be cheering you on. AND yes, a new neurologist is totally in order. What a quack and uncompassionate soul. Botox in the throat sounds terrifying - I have faith you will do what's right for you. BIG HUGS!!!

Suzanne Johnson said...

@ Roger--thank you! I hadn't really thought about my writing being a voice, but you're right. We even talk in workshops about a writer's voice!

@Miki--thank you, sweetie. I hope your mom continues to improve. It is frustrating to not speak the way you want to, and then the frustration makes the voice harder to control. I won't give up, don't worry. I have a strong streak of stubborn from both sides of my family, including the Jaco branch of relatives, which is ironically where the tremors came from. It's all DJ's fault!

@Jillian--thank you so much. Yes, a new neurologist is on the to do list as soon as Authors After Dark is over. A shot in the larynx sounds AWFUL, doesn't it? Eek.

Heather said...

Suzanne, you truly are my hero.

Suzanne Johnson said...

@Heather....No heroes here! We all just deal with what we need to deal with :-)

Ali Hubbard said...

I hate that you are going through this, but you are right about obstacles. Some days they seem bigger than others. You are doing great...and definitely start the process over again with your GP and getting new specialists. It's a relationship and you have to feel comfortable in it.

Feel free to sing as loud and off key as you want to! We love all your voices.