Life's Curveballs

Life has a strange way of reminding you what is important.

It has been exactly 365 days since I've written here. When I last visited this blog, I was on the verge of losing one of my best friends from college. Mark passed away not too long after that post was published, and one year later, there's one thing I've learned from this journey. 

Grief is a process. You would think that after having the five stages ingrained in my memory during college and grad school that I would be well aware of this, but it's different when you're actually facing it rather than reading about it in a textbook. Sometimes it will hit me at the oddest times. 

When I'm sitting eating lunch and a memory will pop into my head that causes me to tear up. 

When I'm laying in bed late at night fighting a case of insomnia and I find myself wishing that I could just tell him one more time how much he meant to me.

When a thought of him pops into my head and I can still hear his voice, plain as day like he's still sitting right next to me. 

It's a weird crossroads to be at. On one hand I question whether I have the right to feel these emotions so strongly when I hadn't seen him in four years. On the other, I realize that he, in his own way, played a huge part in helping me become the person I am today simply by being my friend. Plain and simple, I just miss him.  

I remember when everything first happened, my friend Mel gave me some advice that has stuck with me to this day. She said "Be kind to yourself and don't let anyone tell you how you're supposed to feel." I should note that she has been absolutely amazing, and wise beyond her years, in supporting me through this. I am so grateful for her. 

A few months after Mark died, the woman who had been like a second mother to me during my teenage years, and for a good chunk of my adult life, also passed away. It was a true lesson in the fragility of life. 

But the point of this post is not to be depressing or melancholy. Even though 2013 was a rough year it also taught me to take a hard look at my priorities. 

Anyone reading this blog probably knows that one of my big dreams was always to move to Los Angeles. I talked non-stop throughout grad school about how I was going to move to L.A. and work at LA Children's Hospital. To all my Georgia friends, I apologize for how obnoxious I must have sounded. 

It's taken me a long time but I've slowly realized that Los Angeles is not my dream anymore. A few months ago, I was enjoying a long overdue catch-up call with my college roommate Katie and she asked me if I was still thinking of moving to L.A. It was the first time I could honestly say no and mean it.

 I will always love the city and I enjoy venturing there on my yearly vacations, but my heart no longer yearns to call it home with such intensity. It may just be a sign of me maturing or that my practicality has finally won out over the desire to be spontaneous, but it was a bit of a refreshing realization.

Another thing that losing Mark taught me was to stop delaying doing what I love. What's that saying: Never put off until tomorrow what you can do today? As most of you know I've been working in Public Relations pretty much since I finished grad school. But, if I was being honest with myself, I knew that a large part of my heart would always be drawn back to Social Work. After all, I'd devoted six years of my life, countless sleepless nights, and many rounds of tears to get my degrees in the field so I could do my part to help those facing hardship in the world. So, with a bit of a heavenly nudge from Mark and an even bigger push from Mel, I finally worked up the courage to send an email to the head of a foundation I'd long admired for their work in saving lives by encouraging people to "Recycle Their Bodies": adding their name to the bone marrow registry, becoming an organ donor, donating their baby's cord blood at birth, etc. The organization was founded in honor of a sweet boy named Evan Cousineau who fought a brave battle against a rare disease called Adrenoleukodystrophy. I followed Evan's journey by way of a great site called Caringbridge from almost the beginning until the day he journeyed to Heaven right before his 10th birthday in 2007. His mom Gina founded the Be A Hero Become A Donor Foundation in his honor and she has given me the great privilege to be the Outreach Coordinator since earlier this year.

Every time I learn the story of a new Leukodystrophy family, I know I was meant to be doing this.

Every time I get an email from a parent thanking me for highlighting their child's story, I know I made the right decision to take a leap of faith and send that email to Gina all those months ago asking if there was any way I could help.

This past Thursday, California's Governor signed Assembly Bill 1559 into law, adding Adrenoleukodystrophy to the Newborn screening panel of diseases that babies are tested for at birth. Meaning that the disease that claims so many young, beautiful boys like Evan can now be diagnosed earlier than ever before.

At that moment, as I wiped tears from my eyes, I wished I lived in California. Though I certainly can't take any credit for this monumental event, I know how hard Gina, the foundation, and her fellow ALD parents worked to get to this point. It's life-changing and my one wish is that more people understood that. But, that's part of our mission: to educate, to empower, and to motivate.

I recently traveled to California for the Foundation's annual board meeting, and it was truly a wonderful experience getting to work with Gina face to face on our all-important mission. We went to the beach one day and, as I sat in the ocean listening to the waves crash around me, I couldn't help but think about how my life has come almost full circle this past year. From the pain of losing a best friend to the fulfillment of being part of a cause I truly believe in, it's been quite the rollercoaster.

Thanks for watching over me on the ride Mark: holding my hand when I need it and kicking my ass when I need that too. I miss you and I love you. 

Because Sometimes Life Just Isn't Fair

I found my way back to the blog today to publish an entry that I never imagined I'd have to write. I still wonder how I'll find the words.

As I sit here tapping away at the keys on my MacBook, it is Friday night. If you're seeing this entry on Saturday, it only means one thing: I've lost one of my best friends.

I've always wished that life would come with a guidebook, Life for Dummies, or some other resource to help me navigate through the difficulties brought on by my teenage years, college, and the uncertainty that follows graduation. I've never hoped for that instruction manual to appear more than I do in this moment.

Because even with six years of formal Social Work education under my belt and even a graduate class in bereavement, I'm still not quite sure how to process my feelings when it is my own heart that is breaking.

It was nearly two weeks ago when I was enjoying my working vacation in L.A. As we drove downtown on a sunny Sunday to enjoy a Dodgers game, I got a Facebook message from one of my college roommates, Jenny, that our friend Mark was in the hospital in critical condition. Out of respect for him, I won't go into too much detail but I will say that my heart dropped to my feet as soon as my brain comprehended the message.

I enjoyed the game but my mind was a million miles away as I thought about Mark and mentally prayed for a miracle against what, medically, seemed like pretty insurmountable odds. When I got back to my friend's apartment, she left to run an errand and I was alone. As soon as the door shut, I started sobbing.

Sobbing for Mark because he didn't deserve to be in this situation. Sobbing for his family because no one should have to see their son and loved one in such a fragile state. Sobbing for myself because this was the first time I had faced the prospect of losing a close friend.

But, in the interest of not making this post totally depressing, I want to focus on telling everyone about Mark because to know him was to love him.

It was the Fall of 2005 and the beginning of my Junior year at Wright State. I had made the decision to take advantage of my status as an Honors student and move into the Honors Dorm with my longtime roommate Katie and her trusty guide dog, Holga. I'm not sure what we were more excited about...the convenience store that was now merely an elevator ride away or the fact that we now had a bathroom in our suite and no longer had to travel down the hallway and wait in line to use the facilities.

At that time I couldn't have imagined how my college experience would change by making that move and looking back I'm so grateful for it.

My social circle expanded and I met some great people. Leah, Dave, Jenny, Julia, Nicky, Kelli, Lori, Jeremy, Mike George, and many others that finally gave me the large group of friends I'd always yearned for.

And then there was Mark.

He rolled (literally) into my life a few weeks into Fall Quarter. One day he just showed up at our door and introduced himself, saying he lived across the hall. Little did I know at the time that he would become one of my most cherished friends. His form of Muscular Dystrophy required the use of a wheelchair but he never let his disability get him down and he had one of the biggest personalities of anyone I'd ever met. He was outgoing, funny, and one hell of a smartass. Deep down though, he was the type of person who would do anything for anybody. I always admired that.

I'm not even sure how it started now, but soon after we met, Mark and I began to go to dinner together every night at the Hangar, the closest cafeteria to our dorm. He'd drop by my room to pick me up and we'd roll over there together. As we ate, we would discuss life, our classes, and just enjoy each other's company. The tradition continued nearly every night for the next two years and I came to cherish those dinners as a much needed sanity break from my hectic class schedule. Sometimes on Saturday's we'd take a stroll to the Student Union across campus to change up the food options a bit, but to lunch we went.

And no matter how many times Mark had to listen to me vent about classes, life, or other issues that seem momental to a college-age female, he never complained. He was always there with a listening ear and some sort of advice that calmed me down. He really was wise beyond his years and the true definition of a best friend.

Sometimes if we were feeling lazy on a weekend, we'd order in take-out and watch movies in his room. Wedding Crashers was a favorite and we quickly dubbed it "our movie." I have fond memories of the time we were in his room watching the Steelers/Browns game. He was a diehard Browns fan and I liked the Steelers so it was quite spirited. We were screaming at the TV and got in trouble for being too loud during finals week. Ooops. We weren't happy about it at the time (how dare anyone interrupt our football?!) but now I just look back on that moment and laugh. Oh, the lives of college kids.

One of my most vivid memories is from my Senior year. It was June, which meant that Spring Quarter was ending and Mark would have to head home for the summer while I stayed for Summer Quarter and finished my degree.

I was a wreck. The thought of graduating and entering the real world was scary enough but the thought of saying goodbye to one of my best friends and not being sure of when I'd see him again made me so sad. On his last night on campus before he left, he came over to my apartment to say goodbye. As I cried, he hugged me and said "It's not goodbye, I'll see ya later." And he left.

Lo and behold, a few hours later I heard a knock at our door and it was Mark coming back for another visit. I'm not totally sure now but I think we watched Wedding Crashers and talked. All I do know is that it made me feel better in a very uncertain time. And I was so grateful for that.

As it turns out, the only picture I have of us together is from that night. I'm in my pajama's and he's wearing a shirt that says Beer Delivery Guy. When I found it a few days ago, all I could do was smile because that was so typical of him.

After I graduated, I didn't see Mark again for about two years. I went back to campus in 2009 to visit Jenny and Julia, my old roommates. He came over to visit and it was almost as if I'd never left. He admired my new tattoo and listened as I talked about my plans for grad school, which at that time, I thought would take me to USC. It made me miss the college days when everything was simple and all that mattered was going to class and relaxing on weekends.

Fast forward to today. I haven't seen Mark since that day in 2009. Am I proud of that? Not one bit. I guess you could say life got in the way with grad school, my move to Georgia, and my busy work schedule now that I'm back in Ohio. But, as my Dad has often said, with some friends it doesn't matter if you saw each other five minutes ago or five years ago, when you get together or talk it's just like old times. That was Mark and me.  I've continued to think of him often and last time we Facebook messaged each other, he said "I was just thinking of you the other day...call me sometime."

I never got a chance to make that call. And there will never be a moment that I won't regret that.

I vividly remember a conversation we had once as we crossed the pedestrian bridge back to my apartment after one of our dinners. I think one of our dorm mates who also had Muscular Dystrophy had just passed, and Mark said something to the effect of"When I die, I want you guys to have a party and drink beer." He always did things his way and that was totally him.

At the time I tried to steer him away from the subject because I certainly didn't want to think about it, and I didn't think I'd need to for a very long time.

I will tell you that now, as we've reached that fork in the road, the idea of having a party isn't quite fathomable just yet. It still hurts too much and I'm not sure when it won't.

Mark, thank you for being you. For teaching me to not take life so seriously and for being one of the best friends anyone could ever ask for. Rest easy, you've earned it.

Save me a seat in Heaven, I'll see ya later. I love you.

This One's For You, Cory

I've found my way back to the blog today because my urge to write is intense. I hope all of my loyal readers (all two of you), and any others who may be checking out this entry will forgive me as I take a little detour from the normal purpose of this little space on the internet.

Some of you know that I spend my days behind a desk working as a Junior Publicist. It's a far cry from the Social Work degree I went to school for, but I really do love my job. It combines two of my favorite things: writing and working with people. It's also allowed me a number of opportunities that I wouldn't have had if I'd made the decision to pursue a Social Work job right out of school. I'll get there eventually, but I want to see where this journey takes me first. If there's one thing this career has taught me it's this:

The entertainment world is a brutal place. Don't get me wrong, I've met some truly amazing people along the way but this field is not for the faint of heart. Even when your day is long (this job doesn't end at 5:00pm, y'all), you have to plaster a smile on and move forward. It can be hard sometimes but usually the successes outweigh the negatives. When they don't, I treat myself to chocolate and hope that the next day is better. But let me in on a little secret I learned this weekend. After nearly two years in the business, I can tell you one thing:

When the entertainment world comes together it's a beautiful thing. 

One of the things I've always struggled with as an industry professional is walking that fine line between publicist and fan. When I'm working I try to exude the utmost professionalism. I answer my emails promptly, I address people as sir and ma'am in phone conversations (an ode to my time in the South where I learned that's just the polite thing to do). I treat people the way I would want to be treated.  In short, I do my best to create relationships so it will benefit the clients I work with. But when I'm not working, I do enjoy the same TV shows and pop culture trends that America finds cool these days. One of those shows is Glee. 

Admittedly, I haven't watched a full season since Season 2 or so, but I vividly remember trying my best to tune in every week when I was in Grad School. It was my form of self-care. I loved the show, I loved that the writers were pushing the envelope with a character in a wheelchair.  I loved the character of Finn Hudson, who as most of you know, is played by Cory Monteith. I can't bring myself to write that sentence in the past tense yet. 

When news of Cory's death broke on Saturday night, it was 1:00 am and I was trying my best to fall asleep after a long day relaxing in the sun. I was tweeting some friends when messages started to come across my feed of a "death rumor involving a Hollywood actor"that many people thought was Cory Monteith. If you follow Hollywood at all, you know that someone starts a death rumor for an actor at least once a month via the internet and it's usually proven a hoax soon after. I waited for the press conference like the rest of the world that was up at that hour following the story. 

And when they announced that Cory really had passed away, I did something that most people in my line of work try never to do. I cried. 

Because long before I was a publicist, I was a Glee fan. 

While I never had the pleasure of working with or meeting him, I found myself saddened for him, for his family, for his cast mates, and for his representatives who now faced the nearly impossible task of answering inquires and issuing statements in a time when I'm sure they were also grieving the loss of a client and friend. 

The next morning, and even today, I found myself still deeply affected and wondering why. I usually try to steel myself to these type of events, if only because it is a necessity in my line of work...but this time was different.   Was it because has was close to my age or simply because I was a fan? I wasn't sure but I did know that I didn't want to feel this way. Then I started reading some tweets of some editors I know and I sensed a common theme. 

They were hurting too and that was okay. One of them summed it up by simply saying "it's okay to be sad about whatever you feel sad about."

I've been asked why I think this affected me so much, especially since I was no longer an avid viewer,  and I'm not sure I'll ever have a true answer for that. I considered it an accomplishment that I could make it through part of the Glee Concert DVD last night without tearing up. As a Social Work major, I am well aware that there are much bigger things going on in this world that trump the death of an actor. I get that. On that same token, I also understand that it is important to grieve for things or people that mean something to you. If anything it has shown me that I have managed to accomplish my goal of not being jaded by Hollywood. That's what I've learned this weekend: the entertainment world and the fans are grieving for a man some of us knew and others only had the pleasure of meeting through their TV screens...and that's ok. 

So, in closing, this one's for you Cory. I hope you have found peace. 

Brutal Honesty is My Policy

In my initial post on this blog, I said that I wanted to inspire people living with disabilities while at the same time keeping it real and not sugar-coating my feelings. This will be a non-sugar-coated post served with a side of sarcasm.

Sometimes, no matter how you slice it, having a disability sucks. Most times I try to maintain a positive attitude because I realize that I could be much more severely affected than I am, but there are other times when I want to drive my powerchair off a cliff and do a victory dance as I stand above and watch it fall. I almost accomplished this goal once when I accidentally drove it off a curb in pitch blackness one night during college, but that's a story for another post;). The thing that bothers me the most is always having to plan whenever I want to do something. Even a simple trip out to lunch with a friend requires planning and advance notice. My move to California will require much more planning and logistics for this very reason, and even though I feel more prepared for that than anything because I did so much research when I was deciding between USC and Georgia, it is still a daunting task. I realize though that I have to do it, not only for myself but for the people who don't believe I can. I know I shouldn't even give these people a second thought, but proving them wrong would give me such satisfaction.

I've encountered various attitudes toward disability throughout my life. Some people choose to look past it, while others simply choose to look past me and my talents because I live life from the comfort of a wheelchair. The attitude I have seen during my time in graduate school has been, quite simply, toxic. The students and my friends and professors have been phenomenal in making me feel welcome and wanted, The South in general though is just behind the times when it comes to disability awareness. The most glaring example of this came when a prominent organization told my school that they didn't want to take me on as an intern because of my mobility impairment. I went from devastated to livid in about 2.5 nanoseconds. It felt like I had been slapped in the face, especially considering that I had done the same type of work in a previous internship with glowing marks. That was the first time I realized that equality doesn't always exist. I often get the feeling that people expect me to play the victim because I was dealt a different hand in life and, though the tone of this post may speak to the contrary, that is something I refuse to do. As I often like to say "my brain works, my legs don't" and that will NOT stop me from living my dream.

Sometimes, coping is hard. There are less than a handful of people that really know my true struggles and insecurities. I can call them or tweet them and say ''I'm hurting today'' and they are there for me without hesitation. As weird as this is to say. and I may get judged for it, but a large majority of my friends are people I've met online. In some ways it's easier because I control when and what I disclose about my disability. And for the most part people are not judgemental. Yes I am aware that it may not be healthy to rely on online friends but I do what I need to do to cope. And in truth, these are the friends who have really stepped up and helped me through my struggles of the past year...and for them I am eternally grateful.

Welcome to the Madness

Most of you reading this, i.e. the people who are not my friends and didn't find this on my various social networking pages, are probably wondering who the crazy person is that think she's cool enough to have a blog. By way of introduction, my name is Mel but I'll also answer to Lanie and pretty much anything else that isn't insulting. I'm a rising second year grad student and my passion is helping people, particularly children. It is my goal upon graduation to work in a Pediatric Oncology unit as a Social Worker. I could spend a whole blog post explaining why I feel compelled to go into this field, and I may tell the story at some point, but suffice it to say that I believe it was fate.

Others of you reading this may be curious about the blog title. If you haven't clicked over to my About Me section, let me explain. I was born with Cerebral Palsy, a condition that affects my fine motor skills and ability to walk. For that reason, and perhaps due to some laziness on my part;), I cruise around in a pretty awesome power wheelchair. She's pink and she's been instrumental in helping me gain my independence. I hope to use this blog and writing about my everyday life to inspire people living with CP and other disabilities. This blog will will also be an outlet for me so I'm not promising sunshine and flowers all the time, but I am promising to keep it real.

Another big purpose of starting this blog is to chronicle my journey as I work to accomplish one of my longest-standing dreams. For as long as I can remember, I've dreamt of living in California. Now would be the time for people to start rolling their eyes and asking "why do you want to live there?" These are usually the responses I get from those I tell. I suppose a lot of it might have to do with the fact that I was raised in the Midwest where California was always considered the weird place no one should go. I don't know what it is, the beach, the ocean, or the very idea of escaping that Midwestern mindset, but something about the Golden State appeals to me. Thus, I have made the decision to relocate there as soon as I'm finished with school next May. I'm a dreamer by nature and that seems like the perfect time to follow a dream. So I hope you'll follow me as I work to make that dream come true...all from the comfort of my Pink Hot Wheels.