Strength – aliciajoseph

Feeling a Bit Disturbed

disturbed2015bandpromo2_638

Last Friday I saw the band Disturbed play at a venue near me, and I won’t soon forget the experience. The concert was powerful, and it was emotional. I’ve never been to a rock concert where so many people cried, or were trying not to cry.

Disturbed is a heavy metal/nu metal band, and they’ve written songs that center around suicide. One of the videos to these songs depicts a woman who hangs herself. The video is graphic and it comes with a PSA from the lead singer, David Draiman, pleading with people who are thinking about taking their own lives to seek help and to know there is another way. The National Suicide Helpline is displayed in the video, just as it was displayed on the big screen during the concert.

Draiman spoke very eloquently and deeply to the audience. This is a man, and band, who create a deep connection with their fans. They refer to the crowd as their family, their blood.

In the middle of the set, the band moved from the main stage to a smaller stage in the center of the floor to be more intimate with the crowd. Draiman called for the house lights to come up and he asked for anyone who has dealt with substance addiction or depression, or knows someone who has, to raise their hands. With the lights on, I could see clearly throughout the venue, and more people than not had their hands raised. Draiman then asked for everyone to look around and see that they aren’t alone.

Powerful moment right there.

This is when the band sang their inspiring songs about defeating one’s thoughts of suicide. The house lights stayed on, making the moment all the more sober. A mother and son sitting beside me embraced while they cried. Tears gushed from the woman’s eyes and down her face. Through cries they battled through the songs. A man beside the woman caressed her shoulders.

A few minutes later, she passed by me. I was sure the moment was too much for her. She needed a break. When she came back, I thought of giving her a quick hug, but I didn’t know her and she didn’t know me, and maybe that would have been unwanted by her.

While the songs played I looked around me. The woman and son weren’t the only ones crying. There were many tearful eyes about me. So many strong-looking men stood with their arms crossed over their chest and stoic expressions on their faces and tears in their eyes. It was all so much I almost cried myself but held it back. The pain being suffered around me was palpable.

Before the show, at the meet and greet, a fan had given the band a letter. The lead singer called this fan to the stage and asked for his permission to read the letter aloud. The shocked young man stepped onto the stage and nodded to Draiman his consent. The letter explain that this man had attempted four times to take his own life and was going to do it again until he heard the song “The Light” by Disturbed. The man stayed on stage as the band played the song marking one of the most powerful and emotional moments I’ve ever witnessed at a concert.

Disturbed, like other rock bands I’ve recently seen play, were very inclusive in their message. Draiman preached tolerance of all people, of all races and religions, and he even included gays and transsexuals, which I appreciated very much. Everyone around me cheered this message. I didn’t hear any jeers or sneers.

The band ended the show with the lead singer telling everyone to take care of themselves and to take care of each other.

I went to bed that night feeling so empowered and appreciating my life. If you ever get the chance to see this band play live, please do. It’s an experience like no other.

Below is a clip of the man Draiman called onto stage.

While the band played “A Reason to Fight” the mother and son beside me cried together.

A strong message of suicide preceded the song “Watch You Burn.”

*I don’t own the top picture of Disturbed.

We Are All Connected

I wrote a blog a few weeks back titled “Climbing Everest” based on the movie Everest that depicted the real life tragedy of the day twelve climbers died on May, 10 1996 on Mount Everest. The movie had a huge impact on me. I’ve since read the book, Into Thin Air, by journalist and bestselling author, Jon Krakauer, based on his personal account of that tragic day, almost exactly twenty years ago.

I confess that until I saw the movie, I wasn’t aware the tragic event ever happened. And now I can’t stop thinking about it. I was twenty years old in 1996. Old enough to keep up with current events, but possibly still too young to care? Whatever the case, I completely missed out on this headline news. I’ll chuck it up to ’96 being the year my father died, as well as the year I came out. So I was a little preoccupied. But now that I know, I feel like it happened just yesterday, yet the bodies froze twenty years ago and are still lying somewhere on that mountain, along with hundreds of other climbers who have perished through the years.

There is a lot of controversy surrounded by how the tragic events of the day escalated; was the storm that descended on the mountain that no one had seen coming, therefore was not prepared for, the main culprit? Or did the actions of some of the surviving climbers, as well as the ones who died, contribute to the ferocious calamity of that day?

I don’t have enough space on this blog to go into all the specific details, (you’d need to read the book) but I can touch on a few of the many factors that seemed to have contributed to the severity of the disaster; Greed, selfishness, bad decisions, and a storm with terrible timing all seemed to play a role in twelve climbers never making it off that mountain.

When the climbers began for the summit on May 10, they had no idea time would be so critical. Lead guides of two of the expeditions, Rob Hall and Scott Fisher, had decided on a stern 2:00 (the latest) turnaround time. Meaning, no matter where the guides or their clients were on the mountain at that time, everyone would turn around and go back because getting caught in the summit after 2:00 means the sun will most likely be gone while you’re still descending. Everest is a lot more dangerous, as well as cold, in the dark.

For whatever reason that day, neither lead guide instructed their climbers to turn around at that time. In fact, one of Hall’s clients, Doug Hansen, with Hall’s guidance, was allowed to the summit at 4:00. There is a theory that the lead guides, business competitors, allowed their clients late arrival atop the mountain because each man got a little greedy and wanted the most clients on their expedition to make it to the top.

Krakauer, led by Hall, was surprised that Hall, known for his meticulous planning and extreme emphasis on safety, would have strayed from his plans. But he did, and that decision proved fatal for him, Hansen, and a junior guide, Andy Harris, who stopped his descent after reaching the top to climb back up to help them.

The three climbers got caught in the strong storm, and no one was able to get to them. The storm also claimed Fisher’s life. He made it to the summit at 3:30. Also past the predetermined turnaround time. Exhausted during his descent, Fisher laid down to rest and never got back up. The next day he was found lying dead, frozen, in his path. A friend moved him to the side and buckled his climbing bag across his face.

But the timing of the day was off before anyone even came close to the summit. Days earlier, it was agreed among the numerous expeditions that two people from each group was to climb ahead of everyone on summit day and fix the lines and ropes. When not everyone showed up, the ones who did refused to do the work alone and therefore the ropes were never fixed. When the climbers arrived at the destinations, they had to wait hours for the lines to be fixed. This created a traffic of climbers, while eating up precious time.

This was a bad decision that contributed to the fatality of that day.

Anatoli Boukreev, a Russian guide on Fisher’s team who survived the tragedy, received a lot of criticism for his actions on the mountain. Some believed he didn’t do the job he was hired to do. As a guide, he was expected to remain close to the clients at all times, but on the day of the summit, Boukreev ascended well ahead of the rest of his team, and after making it to the summit, he descended without waiting for any of the clients. By the time the storm hit, Boukreev was already at camp and in his tent.

The reason for his quick exit was reasoned to have been because he wasn’t using supplemental oxygen. Using oxygen not only gives a person more strength and keeps them as coherent as a person can be at that altitude, but it also helps stave off the cold. Boukreev couldn’t wait for his clients, especially at the top of the mountain, because he would have froze to the death, which is why not using gas was irresponsible and selfish on his part. He couldn’t assist the clients the way he was paid to do because he was too vulnerable to the elements. He had to take care of himself first. (Boukreev did save two people’s lives later in the night.)

Maybe had Boukreev had oxygen and had stayed close with his team, he could have prevented some climbers who died on the mountain from getting caught in the storm.

We’ll never know what could have been. That is the reality of life, isn’t it? We only know for certain the decisions that have been lived.

The story of the Everest disaster has captured me some twenty years after it’s been lived and I can’t get it out of my head. There’s so many parallels between what happened on that mountain and what happens in life every single day.

On that mountain, the climbers’ lives were interconnected. The actions of one person, directly affected the life of the other. Bad decisions and mistakes had a bearing on everyone, and cost some climbers their lives. There was so much more that went wrong on that mountain than I had room to write, but it seemed to be a domino effect from one bad decision to the next, and it was inevitable that something horrible was going to happen.

We are all connected in this world. Our lives interconnect with each other, whether we believe it or not, because like on Everest, the decisions we make can change the course of another person’s life.

If someone chooses to drink and drive and smashes his car into someone else, killing that person. That person loses his or her life, but what if that person was an only parent to a small child? Maybe that child grows up in the custody of the State, and is in and out of foster homes, filled with a life of abuse and instability so severe that by the time the child reaches eighteen, he/she is so traumatized by their experience they never recover.*

Without the appropriate help, because no one took the time to really evaluate the emotional and mental well-being of the child, he/she is thrown out into the world completely unprepared and non-adjusted. Based on these circumstances, that child may make a bad decision that could alter the life of someone else, they way it did the child’s life years back.

It’s the domino effect. It happened on Everest in 1996, and it happens in life every single day. It’s why I believe we need to take care of each other as though we are all climbing Everest together.

* Please note I am not implying that all foster homes are bad and filled with abuse. I do acknowledge that there are wonderful families opening their homes to children in need and are providing them with fulfilling and stable lives, but unfortunately sometimes abuse happens.

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