“What if?” It’s a question an old college instructor taught that every writer had to ask herself. “It’s what creates ideas,” class was told. My best friend in high school (who remains my best friend to this day) used to contort her face in such expressions that would make Jim Carrey cringe, and ask, “What if I looked like this?” Or, she’d slump really low (mind you, she’s six foot one and half! Truly, she’s a beast) and move as if she had a hunchback and then ask, “What if I walked like this?” Laughing, I’d yell out, “What if a lot of things!”
I look back now and of course my young teenage-self could have no way of knowing the path her life would take. I don’t know if it was foreshadowing or just a ‘wise beyond her years’ moment, but I couldn’t have been more right-on when I uttered those words over twenty years ago. Really, what if a lot of things?
It was recently suggested to me that I start a blog. I just published my first book, a novella, and was told authors need to have a blog. So, in addition to writing novels, novellas, short stories, screenplays, etc, writers also have to write blogs. Who has time for that? Well, apparently, you make the time. So, this is it. Welcome to my blog.
Though it may appear I’m doing this begrudgingly, the truth is, I’ve been wanting to start a blog for over six years and denial is the only thing that has kept me from doing it. What I considered blogging about was something I was trying hard to pretend wasn’t really happening and since I knew it’d be impossible to live through something while writing about it, without acknowledging it exists, I chose to ditch the blog and deny it as long as I could. Well, I can’t anymore.
I met a young woman at a support group recently and she told me about her blog and how over 15,000 people have viewed it and that it was just her way of ‘spreading the awareness.’ Wow. And at the time she’d only been diagnosed for less than two years and there I stood, eight long years into this disease and not a peep. Not a blog, not a fundraiser, nothing. She was doing her part, but I wasn’t even close to doing mine. I’m hoping to change that.
The disease is Myasthenia Gravis and I have it. It’s a muscle disease caused by an immune system that is attacking itself. I could tell you the scientific explanation, but basically, my muscles no longer work the way they’re supposed to. It’s hard to express what it was like sitting in that doctor’s office – a new neurologist – as he told me what he believed I had. He couldn’t say for sure because no ‘formal’ tests were done, but he didn’t need it. He saw the symptoms. “I think you have Myasthenia Gravis,” he told me.
“What? I’m sorry? Myas, what? Can you please spell that for me, doctor?”
I couldn’t pronounce it, but I had it. I didn’t even realize how weak I was until my doctor did a couple strength tests on me and I failed miserably. I couldn’t hold my leg up against even the slight pressure he applied, same with my arms, fingers and neck, even though I swore I was trying. I left the office walking on unsteady legs, weak arms, and with hands that could barely hold a pen long enough to fill out medical forms. With drooping eyes (because we need muscles to keep our eyes open) and my mother by my side, where she has been throughout this entire eight-year journey, we headed toward the car.
With an arm around my shoulder, she turned to me and said, “I think this is the disease that Ann Margaret’s husband has.”
Wonderful, I thought. I have an old person’s disease. Thanks, mom. But I knew she was trying to be supportive by putting a face to the disease, an old face, but a face nonetheless, to make me feel less alone because it’s scary being told you have something you never heard of and need a dictionary to pronounce.
But I knew I wasn’t right when I went to the doctor. We know our bodies and by then my symptoms were too obvious to ignore. My muscles stopped working. Just like that. My first symptom was a droopy eye. I was at a Bret Michaels concert with a friend (don’t judge me) and she noticed my left eye was half closed. I couldn’t lift it. Swearing there had to be something wrong with my contacts, I tossed the contact out my window and drove home using only my right eye, while a hand covered the other. But shortly after, other symptoms began to show.
I’m lucky to have the family that I do. My two married sisters left their own families to be with me that night. One even came with an armful of documents she had printed out from the internet. But not ready to read any of it, I stayed downstairs, in my room, crying in the arms of a relationship that held me while promising to always be there, a relationship that left six years ago.
I began my journey with, for the most part, a positive attitude while always recognizing there were others who had it much worse than I did, but the question, what if, has come up often. Not why me, because really, why anyone? But instead, what if? What if I never developed this disease? What if I’d been healthy when I turned 30, instead of preparing to undergo a surgery, that may or may not help, where would I be right now, eight years later? Surely, not sitting in a room, getting my monthly IVIG treatment.
I think about my healthy-self from years ago and all the things I was capable of doing, but never did. I was often shy and self-conscious, holding myself back. I wish I hadn’t. What if I’d taken those karate classes I’d wanted to? Or climbed a mountain? Or ran a marathon? A triathlon? Really, what were my limits? I had none. I only wish I’d known it and lived like it.
What if I hadn’t settled for being just a spectator in life when I could have been so much more?
As a writer, I’m always asking ‘what if’ for a story. It’s exciting. It builds and creates plot, character development, but asking that question about your own life is profoundly painful and brutal.
I’m not sure what will become of this blog, but I hope it provides me with the peace and fulfillment I’ve long been searching for. And maybe, I’ll get so much from this blog that it’ll force me to ask myself, “What if I never got this disease, would I ever have started this blog?”
Thank you for reading this and if you’d like to know more about Myasthenia Gravis, please check out the blog of the young woman I referred to at Chronicallycheerful.blogspot.com
aliciajoseph 
Congratulations on your first publishing and starting a blog. Letting others know that they are not alone is sometimes the best thing you can do for someone dealing with the news of a disease they have no control of. Best of luck to you in everything you do!
Thanks Laurie! I appreciate you reading this, as you do with everything I write. 🙂
This is a great start to a blog, Alicia! Congrats on publishing and stay strong. You’ll find a lot of support among your fellow authors. Most of us are battling something–although you probably win the award for the toughest-sounding name… Such is the prize, huh? Hugs and I look forward to more posts!
Thanks for reading, Annie! I appreciate your comments and you are right. So many people are battling something, unfortunately, which is why I am always quick to acknowledge those who have it worse than I do. Thanks again for reading!
Beautiful! I had no idea you published a book- congrats!! And thank you for linking to my blog 🙂
Thank you Heather for reading this. Your opinion matters a lot to me! Glad you liked it.
And you’re so welcome for the link. Your blog is so awesome! We will work together to get the word out. 😉
I have had the honor and the privilege to read many pieces of your works and I am always in awe of your abilities. You could write an instructional booklet for something I’ve never heard of in a language I can’t speak and I still would not be able to stop reading….you are THAT good!
I am sure so many can relate to how you felt during the onset of the disease and the time spent coming to terms with it. I didn’t know you before the MG, but you are one of the toughest people i know!