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.

 

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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.

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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.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.

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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

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