Author: Alicia Joseph

I'm an animal lover. I volunteer at a dog shelter and love nothing more than watching neglected or abused animals get their second chance and find loving homes. I'm also an author of the books, Her Name, Loving Again, A Penny on the Tracks, Annabel and the Boy in the Window, and a short story called This Christmas. When I'm not writing, I'm usually reading. I'll read anything as long as it is well-written and has a compelling and beautiful story. You can find me on twitter @AliciaJAuthor.

“A Dog Loves At All Times”

Hug your dog. He/She deserves it. They give so much, but ask for so little.

No matter how sad, frustrated, or upset I may be, when I walk into a room and see my dog, Phil, stretched out on his back, legs bent across his chest, his front paws relaxed over his face while flashing me an upside-down smile, I can’t help but laugh because he looks so silly. And we need a little silly in life to make us smile.

I’ve realized that in many ways I need to be more like him.

Phil’s a great listener. He never leaves me, even as I drench his fur with tears, he stays right by my side, and listens to my sad tales no matter how many times he’s heard it. I need to be a better listener. No more interruptions. I will listen to your side of the story, from start to finish, even as you tell it for the six-hundredth time.

He’s patient and patience is a virtue that often eludes me, especially since I started sharing my home with children. But no matter how comfortable Phil may be curled up in his favorite spot on the couch, once those kids barrel loudly into the room and trample on the cushions he was peacefully sleeping on, he jumps off. He doesn’t bark. He doesn’t growl. He doesn’t bite. He simply leaves the room without appearing too upset about it. Maybe it’s because he knows he’ll find some other quiet place in the house and be grateful for it, even if it’s on the floor.

The kids have tested my patience like this before, when I’m quietly reading a book or practicing yoga, only I don’t usually handle it nearly as eloquently as my dog. I argue that I was there first. I stubbornly fight for my spot and when I do finally admit defeat, I leave the room in a huff, hardly ever grateful that there’s another quiet space somewhere in my home waiting for me.

I rescued Phil from a shelter and although he’s a pitbull, there were no signs that he was involved in dog-fighting, but there were major signs of neglect. He was found as a stray roaming the streets of Chicago. He was an abandoned dog, without a home, but he was also a survivor.

Painfully, I force myself to imagine him cold and hungry, lost and alone, wandering around with no place to go. I think about all the people who saw him but did nothing. I get upset, but then I imagine those who fed him scraps of food or offered water to get him by. It wasn’t much because when I brought him home, he was all ribs, but it was enough to give me a chance to find him. I’m so grateful that I did.

But no matter how badly he’s been treated or how many times his heart’s been broken, he is so willing to love and it doesn’t take much to win him over. A pat on the head. A stroke underneath his chin. A kiss on his nose. He knows how to heal. He knows how to forgive. He knows how to let go.

He also knows how to love.

He loves with all he has, without holding back. When I open my arms, he comes to me without hesitation, undeterred by the risk of being turned away. My baby lays it all on the line and I don’t plan on letting him down…ever.

My dog gives me hope. He lights up my darkest days because I know he has suffered to end up here, in a pretty good place, with a mommy that loves him so much. He survived his battles and won. I will too, and so will you.

A picture hangs in my room with the saying “A Dog Loves At All Times.”

Can anyone disagree?

Movies and Memories

As a writer, the last thing I want to hear in response to recommending a very good book to someone is, “That’s okay. I’ll just wait for the movie to come out.” …. “But there is no movie for this book.” …. “Then it must not be a very good book.” Sigh.

Writers don’t compete with other writers. We compete with every means of entertainment that take people away from reading. Could this include the movie industry? Possibly. But maybe for every 100 people who instead of reading a book, choose to wait a long time for the book to get to the big screen, a dozen or two dozen of them will be so swept away by the brilliance of the movie that they will just HAVE to read the book, while crossing their fingers that the book will do the movie justice.

Hey, if it takes a movie to get a person to pick up a book – I’m all for it, because I love movies. Ever since I was a little girl it was my escape. I loved books, too, and had gotten lost in so many as a child (still do), but I sure loved to watch movies. And could watch them all day. Everyday. And that hasn’t changed.

I have a stack of old tickets stubs I had saved. The oldest one dates Jan-3-1998. I was 21 at the time. The movie was Good Will Hunting. The adult price was $7.50 – today’s matinee. I saw it with my best friend.

I don’t recall what made me start saving movie ticket stubs. Maybe I’m just nostalgic because I do have a fondness for the past and lamenting how the time has passed. But I no longer save my stubs. The latest ticket I have is from 06-09-2007. The movie was Shrek. I saw it with my ex.

Now that I have stopped collecting these tickets, it seems silly to save the ones I already have, but throwing them away doesn’t feel right. I’ve held onto them this long – how can I throw them out now?

As I look over all the stubs from fifteen years ago, I can remember the exact person I saw each movie with. Maybe this doesn’t seem like an extraordinary feat, but if you knew my horrible memory, you’d be amazed. My girlfriends have an edge over me because they can convince me I’ve said or done things I didn’t do simply because I won’t remember not having said or done them. It really isn’t fair.

I wish I could remember the multiplication table, or our State Capitols, or my niece’s and nephew’s birthdays the way I remember the people who sat beside me in a darkened theater as I shoveled buttery popcorn into my mouth.

In eighth grade, I saw the movie Madhouse with my boyfriend and another couple. Date night! He was eating Twizzlers and was so anxious to kiss me that he couldn’t even wait until he had swallowed all of his delicious candy because parts of the chewed, left-over pieces ended up in my mouth. It was the grossest, wettest and sloppiest kiss I’ve ever experienced. It was twenty-five years ago but I still remember the sweet taste of his candy on the back of my tongue and the feel of drool running down my chin.

I’m pretty sure that was the moment I became a lesbian. Thanks Ryan! It’s a wonder I even kissed another boy after that. I remember my feeling of relief when he left to go to the bathroom and I was able to towel off my face.

I’m not the lesbian who likes to rag on guys. I have experienced some decent kisses from those of the opposite sex, but nothing summed it up the way my best friend described a kiss when we hooked up with some fellows while visiting a college friend. “He kissed the way Mel Gibson looks.” Mind you, this was 1995 and Mel was lookin’ real good, but my kisses with boys never left me feeling like that. My kisses with girls…well that’s a story for another blog….maybe. 🙂

This blog isn’t about kisses. It’s about movies. Or rather, what attaches us to movies.

I remember going to see Silence of the Lambs with my mother, who is the loudest person you can ever watch a movie with. I didn’t know that at the time, but she jumps at EVERYTHING. Even the parts where you know the bad guy is going to pop out, she’ll scream as if there was absolutely no build-up and she never saw it coming. She scared me more than Hannibal Lecter did.

I took my young nephew to see Finding Nemo. He was so excited running down the hall to the theater that he wiped out, face first, onto the floor. Arms and legs outstretched. He was laid-out flat. I laughed. I laughed hard. (I’m laughing right now as I write this). And he was mad at me. He slowly got up and wouldn’t look at me as I walked, and he limped, to our seats.

In the middle of the movie, I replayed his tumble in my mind – slow motion – and I busted out in laughter again. My astute little nephew turned to me in the dark theater and whispered, “I know why you’re laughing.” Yes, he knew, and that only made me laugh harder.

Memories.

Anything can be memorable – even the worst movie ever made- if it’s connected to a memory that’s unforgettable.

‘My Writing Process’ Blog Tour

Thank you Mystic Thompson for inviting me to join this exciting blog tour! I’ve enjoyed getting inside the heads of other authors! Please be sure to visit Mystic’s blog at mysticthompson.weebly.com

What are you currently working on?

I have just begun edits for my first book, a Lesbian Romance called Her Name, which is scheduled to be released this July. As a new author, I’m not sure there’s anything more exciting than the release of your first book. It’s all starting to get real! 🙂

I also just finished my second Lesbian Romance book, tentatively called Loving Again. I have a long list of old, abandoned stories that I have promised to rescue. So once the edits of Her Name are complete and I find a home for Loving Again, I may toss the life preserver out to sea because my characters have been in the water way too long.

How does your work differ from others of its genre?

My writing is simple in style and usually has a nostalgic feeling to it. My last two romance stories revolve around the notion of time and how we are all connected to each other in some way, even if our paths cross only briefly. My novel, Loving Again, shows the journey of two strangers who discover that one moment in their past had brought them together in a way neither could ever imagine.

Why do you write what you do?

I write lesbian fiction. I came out in 1996 when I was twenty and I remember going to Borders to buy my first lesbian book. It was a huge moment. I was so nervous I walked past the Lesbian Fiction aisle seventeen times before I finally entered.

You see, the aisle was clearly labelled “Lesbian Fiction” and that meant anyone who saw me standing in front of those shelves would know I was looking for a lesbian book. The horror! But I braved it and stood there long enough to pick out a book that appealed to me (of course they all appealed to me because they were about women who loved other women). But I was so grateful to have that outlet and those stories helped me to feel normal in a world that didn’t seem so welcoming.

I know today there are a heck of a lot more outlets for young gay people and a trip to a bookstore (for those who still go to bookstores) is no longer a life-changing event, but it would mean so much to think I could give a confused, questioning, lonely person the comfort of knowing there are others like them out there. And here’s just a couple of their stories.

On a side note, to prove how far we (I) have come, six years ago I had a horribly loud and obnoxious fight on my cellphone, in that same Borders, with one of my ex-girlfriends while fully aware that there were others around me but not caring (yes, for ten minutes I was one of those people) – In the same place where, twelve years earlier, I had stood as a timid, self-conscious, twenty-year old, sweatin’ out the purchase of her first lesbian book. Progress!!!!

How does my writing process work?

New ideas usually come when I ask myself, “What if?”

I wrote a blog about the power of that one question. It’s an important question and one every writer needs to ask her or himself because there are no limitations. That question pulls me away from the notion that I should only write what I know.

If I want to write about something I know nothing about – It’s called Google, Baby!!!!!

Getting Back

I think I was a better person when I was younger. I was less judgmental and more accepting. My mind was open and clearer. I welcomed new adventures without expectation because whatever happened I’d believed was meant to happen. I just went with it. I was less moody, less irritable. I was optimistic. I took each day as they came as though time would never desert me.

Now, I make presumptions I never used to and turn away from situations I don’t know, don’t understand. My mind is foggy, cloudy, hazy… every last inch of it. Optimism has turned to pessimism and a once open mind, now over-run by an over-analysis of everything. I look at the clock as if time were a girlfriend, packing her last suitcase, ready to say goodbye.

If this is life catching up to me, then I need to run faster because I’m only 38 years old and I want to live to be 100 without turning into Ouiser from Steel Magnolias.

I meditate. I do yoga. This helps to bring me closer to myself. Everything around me slows down, almost disappears, and it’s only me. Me. Me. Me. And that’s not the way I live. I live for others, not for myself. Meditation and yoga has changed that and forced me to concentrate only on myself. This is hard, especially when you find out things about yourself you’d rather not know.

Ignorance is bliss for many, but I don’t want to be ignorant. I want to figure out how I’ve changed and why. And when I find the reasons I want to smash the blippity blip out of it so it never resurfaces again. Life took me away from me for a little while and I got lost.

Now, I need to find a way to bring a little of my younger self back to me because it’s been a long time and I kinda miss me.

My “Is It Summer Yet?” Blog

Queer Town Abbey Invites You

to Get a Jump on the Season

As a kid, summer was what I waited for, longed for. The anticipation was as exciting as waking up on a Saturday morning, and tossing the covers to the side as I hurried to watch my favorite cartoons (because that was the only time cartoons were on. We didn’t have 175 channels for kids back then).

I counted the days until the last day of school and as soon as it became warm enough to open the windows in class, only my body remained in session because my mind completely checked out. I’d daydream about all the adventures (trouble) I’d get into and with the help of a great childhood best friend, we did just that.

Everyday we’d go to the Park District pool, get kicked out of the Park District pool, sneak into places we never should have been, and ride our bikes around town while searching for new places to make into our “hideout” that only we knew about. We enjoyed a freedom that most kids don’t get to experience today because we didn’t have cellphones that would allow us to be tracked down by our parents at any given moment. If they needed us, they had to wait until we got home (and I always made it a point to ignore when the streetlights came on because I hated that rule).

Now, my side-kick is gone – married with kids – but I still count down the days for school to be out, but not for me, for my kiddies, because they are the ones I now take with me on my adventures. They are my “side-kicks” now and our “adventures” usually take us to the South Side – to Sox Park – for a Sox game.

But we don’t just “go” to Sox games. We “travel” there. I have a Sox CD burned with songs that can only be listened to while driving to a Sox game and it is put on at a specific point in our destination because a certain song must be playing the second the stadium comes to view. It’s a beautiful moment.

We also don’t just “attend” a game. We “experience” it. There are food items I am only allowed to eat when I am with my nephew because we tasted it the first time together and it has become our tradition to eat it together. Seriously, on the way to the game he’ll ask me what inning we should eat our favorite food. If I dare attend a game without them (and believe me, this instance is treated like a treacherous scandal) I am questioned later if I ate said food. “No, I did not,” I’d always respond. (Okay, one time I did but I am gluten-free and therefore am VERY limited in my options at the ballpark, so I need some slack).

My favorite summer memories revolve around baseball, but for far more reasons than just the sport of it. It’s sentimental to me. I hold close to me very fond memories of watching games with my father, who passed away 18 years ago. It’s how I became a fan in the first place.

One day a little girl walked into her living room and her father was sitting on the couch with a game on. She sat beside him and watched the first of what would become many, many games with him. Yet still, I wish there were could have been more.

I know my nephews will hold close these memories and look back fondly at them in years to come. Whenever they see an old lady at a game they point out that that will be me someday and they will be the ones taking me to the games. I laugh because although I am in no hurry to get old and gray, my boys have left me with something to look forward to.

I’ve realized that no matter how bright the sun may be on the most gorgeous of summer days, it always shines a little brighter when you’re sharing it with someone you love.

Queer Town Abbey Invites You

to Get a Jump on the Season

with

Queer Town Abbey,
Musa Publishing,
and dozens of your favorite authors

for the

Is It Summer Yet? Blog Hop

Celebrating My Best Summer Memory

Grand Prizes are:

iPod shuffle

Queer as Folk Box,

Music from the ShowTime original series Seasons 3,4,and 5

donated by Tommy Boy Entertainment

PLUS

11 other great prizes

To enter click Queer Town Abbey Blog Hop

and share your best summer memory

To Love You Like a Dog

I have loved and I have been loved. I know love. There is no greater feeling. There are all kinds of love and I can’t live without any of them. I need the way my mother loves me or my brother, my sisters, nieces, nephews, my friends, and of course, a partner. But what about the love of a dog?

A little over three years ago I decided I needed a pet, a dog. While growing up my family always had a dog and it was time for another one. I didn’t know what kind I wanted. All I knew was it had to be a shelter dog. So I took to the Internet and scrolled through page after page of dozens of dogs – too many dogs – who needed homes. One by one, I browsed every page, every face, and then I saw him. A tan and white Pit bull mix. His name was Phil and he stopped me. I had to meet him. He was in a shelter in the city. I live in the suburbs. Surely, there were shelters closer to me. Yes, there were, but Phil wasn’t in any of those and there was something about him. So I grabbed my shoes, my wallet, and my best buddy and off to the city we went.

My friend and I walked into the shelter and instantly were greeted with loud barking from the many nervous and anxious dogs crammed into rows upon rows of kennels lined up in the room – a doggie prison for sure. I rushed inside and hurried down the aisles, peering into each cage, looking for the dog from the Internet who had captured my heart.

The rest can play out like the greatest love story of all.

I was walking so fast I almost passed up a cage where all I could see was the back of a dog and then he turned his head sideways. I stood still and for a few seconds we just looked into each other’s eyes. I smiled. I had fallen in love and from that moment on he was mine. He was quiet and calm, unlike the other dogs, and I still ask him if he knew his momma was coming for him that day.

I hurried to the front desk after instructing my friend to “stand guard” to make sure nobody else takes him. After telling the lady sitting at the computer that I wanted Phil, she asked, “Have you taken him out yet?”

“Um, no, I haven’t.”

“Well, you have to meet him first to know if you get along,” she stated, with an obvious tone, but the joke was on her because I didn’t need to meet him cause I just knew. But not wanting to argue, I waited for them to set us up in a room. He came to me as if he knew me. I felt it, too. Even the volunteer commented that he’d never seen Phil take to anyone like that before. I’m aware that could have been a sales pitch because there were a lot of dogs there who needed homes, but maybe I’m a sucker because I believed him.

Yes, I thought to myself, it’s as if we are truly meant to be.

After some completed forms and a short interview, I opened my car door, as well as my heart, to my new four-legged, furry companion. Days later, the same volunteer would call and say, “I’m just checking to make sure you’re still in love.” I was sitting on my couch and glanced beside me to where Phil lay and smiled. “Yes, I’m still in love.”

And three years later our love is still going strong.

A dog’s love is irreplaceable. He is always happy to see you. Whether you left the house for a quick spray tan or a three day road trip, he will wag his tail while greeting you at the door, knocking down anything that gets in his way. He’ll let you take funny pictures of him at all times of the night and never complain when you post them on Facebook or Twitter (even if you didn’t get his “good side”). He will always be up for a ride in the car or a walk in the park, but is also just as willing to be a couch potato with you, never leaving you to feel like a lazy bum by yourself – a true team player.

He will wait patiently on the other side of the door when you accidentally shut him out. He will let you drench him with your tears when you need a good cry without ever leaving your side. He will rush to get between you and anyone, or thing, he perceives as a threat, with complete disregard for his own safety.

Best of all, he will love you unconditionally and lick your face when you need it the most because dogs know; they always know.

I was 35 years old the first time I experienced “love at first sight” and it was with a dog. Sad? Probably, but it turned out great.

Since then, only one other person has ever stopped me in my tracks, with just one picture, the way Phil did. I looked at this woman and just knew, the way I knew with Phil. It was in her eyes. In her smile.

And I wonder if someday we will look each other in the eyes, smile, and just “know.” And maybe, I’d have to call a friend over to “stand guard” so nobody else takes her.

More than ever before, I want to love someone like a dog. I don’t want to be a dog, I only want to love you like one.

I’m not Superman, anymore

I was strong before I had MG – really strong. An athlete since I was a child, I enjoyed sports and being active. I also loved to lift weights. Maybe a little too much, that was debatable, but I liked the appearance of looking strong and loved how it made me feel so capable. I have a friend who’s in a wheelchair and she’d always tell me to wait for someone to help pick her up. I’d smirk and say “G, I got you.” And leaning down, I’d scoop her into my arms with such ease, so high, that she’d say, “I think you can put me over your shoulder and run up a hill!”

I probably could have. I was that strong, but not anymore. That kind of strength had been unknown to me for so long I’ve forgotten how it feels. I don’t remember a time when I could talk as long as I wanted without my jaw getting tired or my tongue feeling like a dead fish in my mouth – completely useless. I was often referred to as “the quiet one” – shy around those I didn’t know well, but now I wished I’d talked more. Not because I had anything all that relevant to say (trust me, my words of wisdom continue to be few and far between), but simply because I COULD!

Like everyone who suffers from something, some days are better than others. Sometimes I find I could talk more, walk more, DO more. But the people who love me know when I need to rest and are very supportive. My twelve year old nephew, whom I share a very deep relationship with, always knows when I’m not good. I play with my nieces and nephews as much as I can, but they know Auntie can only do so much. It’s my little Joey, Jojo, who shows so much concern for me. He’ll say, “Auntie, your talking’s not good today.” Or he’ll notice when one of my eyes start to droop, ever so slightly, a sign that I’m getting weak. He watches me. REALLY watches me. I’ll tell him that Auntie needs to rest and then go lie on the couch. He’ll lean down, give me a kiss and a big hug while telling me to get better.

Whenever we see each other, he always asks how I’ve been feeling and if my breathing’s been okay. It’s very sweet the way he worries so much about me, but I wish he didn’t have to. When he falls asleep on the couch cuddled against me, I wish I could carry him to his bed. But I can’t. I know there was a time I could have, but each day takes me further away from those days that I barely remember them. I now have to wake my sleeping nephew and watch as he groggily makes his way to his bed.

The day it hit me that I’d really lost my strength was when I had to ask my near-seventy year old mother to open a jar for me. That was brutal. It made me sad and she knew it. I used to be the one people asked to open jars, carry the heavy bag, etc. This happened in the first few years of the disease as I was slowly transitioning from my old life into this new one. It was hard for my mom to witness. Often, I’d hear her on the phone, expressing to someone with sadness and maybe a little anger too, “She was used to being so strong.”

Thankfully, I am now able to open jars by myself. It’s a part of the “good days” that the new forms of treatment my doctors have put me on allow me to enjoy. The treatments have increased what I am able to do, and for that I am grateful, but it isn’t anywhere close to the capabilities I once enjoyed.

My nephew was too young to remember how I was before I got this disease. He only knows me as being sick, yet despite this, the song we hold hands to and refer to as “our song” is Bon Jovi’s “Superman Tonight.” It’s one of our “road trip” tunes burned onto a CD designated to accompany us to whatever destination our journey brings us.

The chorus goes like this:

“Who’s gonna save you when the stars fall from your sky? And who’s gonna pull you in when the tide gets too high? Who’s gonna hold you when you turn out the lights? I won’t lie, I wish that I could be your superman tonight.”

The line where Jon Bon Jovi sings, “Who’s gonna hold you when you turn out the lights?” My nephew yells out “Auntie is!” and while I’m driving I reach behind me and we clasp hands every time that verse is sung. Every time. Although I hardly feel capable of being someone’s hero anymore, at least I can still get a glimpse of it during a car ride while I sing out loud with a little boy who really, really loves his Auntie and sees her as his “Superman.”

Maybe I can’t lift my friend from her wheelchair, carry my sleeping nephew to bed, or bench press the ridiculous amount of weight I probably had no business lifting in the first place, but there are days when I feel like I can. I do as much as my body allows. And although it may not come close to what I used to do, I go to bed snuggled underneath the cape that is Superman because there are days where I still feel invincible.

When I was a little girl Superman was my favorite superhero. It really wasn’t a hard decision. As a toddler he was already lifting cars, he could fly, run faster than a speeding bullet AND the guy could change clothes in a hurry. I’m talking in like a millisecond, which would come in handy during a hurried morning-after getaway (not that I would ever do that! I’m the girl who stays and makes you breakfast) Did I mention the guy could frickin’ fly! (I purposely didn’t bring up the whole x-ray vision thing because that ability played NO role in picking him as my favorite. None whatsoever).

But the best part about being Superman is that he gets to save the woman he loves while she’s falling into the pits of the Niagara Falls. Who wouldn’t want to do that? I sure would. I’d always seen myself as being the protector of my family, though sometimes I doubted my ability to do so. I worked out because I wanted to look tough. Hoping that if I appeared that way, no one would mess with me because I didn’t know if I possessed the courage to fight back. I only knew I never wanted to find out and that’s why I needed to look so strong on the outside because it countered how I felt on the inside.

Though this disease has taken away much of that outer strength, it has made me realize the inner strength I never knew existed.

Maybe I’m not Superman anymore, but ego-check, I never was.

Thank you for reading this and if you’ve never heard Bon Jovi’s “Superman Tonight” please check it out! Great song! My nephew and I also love Bon Jovi’s “Love’s the Only Rule” Another road trip song we blast out loud!

“What If?”

“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