Month: January 2016

Death is not the end to a story. 

I don’t know why people die, I wish I did but I don’t. And well if I did then that would make me God and let’s be honest I don’t want all the responsibilities he has, but it sure would be nice to know why people leave earth when they do. It always feels like it’s the wrong time but it must really be the right time for them, otherwise I believe they would still be here. While ultimately death isn’t usually our decision I do believe we have some sort of soul that says when it’s time for us to go. I guess I can’t quite figure out how to explain what I feel. 

It seems as if quite a few people have passed on recently and while that hurts it also opens up the old wounds of others lost that have begun to heal over. I say begun to heal because we’re never truly the same after we lose someone. Each person that holds a place in our heart I believe is like a heart string, and when they pass well the string gets broken. It hurts and you can’t really replace that string because well there’s never one quite the exact length as the one before. 

Sometimes we have warning before hand when someone is going to leave their earthly bodies. Of course it doesn’t make the loss any easier but it does give those around to prepare their souls for the loss, to say what they’ve never previously had the courage to say. 

Other times people leave earth suddenly, it happens out of nowhere and it feels as if we are left with a deep gaping hole in our chest. It leaves you struggling to catch a breath and takes what feels like forever for the reality to sink in. 

While death is just not fair it is ultimately something that will happen to everyone. There’s truly no way around it, unless of course you’re like Walt Disney and get frozen in hopes you can somehow be defrosted, I never quite understood that. I would like to live forever some days but others I find comfort in knowing that my time here is not eternal.

I feel as if I’ve been exposed to the passing of souls maybe more than others my age and I know part of that is due to the last three years of my life and the people that have walked into it. It never gets easier but each time I realize more and more what I believe to be my reason for still being here.

You see my illness has never been terminal and it never will be. I have struggled with that from the very first day, I find relief in the fact that POTS itself will not kill me but at the same time I feel greedy that I have been given the diagnosis without a shortened life. I believe with all my being though that it was for a reason and while I am no God each day that a soul passes I am reminded more and more of my job here on earth.
I like to think that we’ve all been given jobs for our souls here on earth and once we fulfill and complete these jobs the big guy up above says “okay my friend you have done your job, you have made your impact now come join me in your forever home and watch the work you have done unfold down below.” Maybe that’s a silly thought but it helps me justify the passing of people because there’s really nothing just about that.

My freshman year one of my best friends committed suicide, I was never the same after that, and never will be. Matthew taught me the value of self love and the importance of asking for help. My grandpas both passed away and through them I learned the importance of taking joy in the simple things in life, to stop and be silly and appreciate earth. Christina, a college student with POTS committed suicide last spring, she taught me to never let my battles win, to always remember the strong me deep down inside. Laura and Eibhlin two tremendously strong cancer Warriors taught me the importance of fighting no matter what is ahead of you, that even though you may not know what tomorrow holds its important to push through. Today my elementary school principal passed away, she jumped in front of a bus literally to save the lives of her students, she taught me to put others first, to be selfless in my actions, that your actions are how others will remember you. She taught me to have the courage I often wouldn’t have.

I don’t think anyone simply leaves this earth just because, I believe there is a reason and I could be wrong but at the end of the day you and I will never know while we’re here on earth. The idea of death is quiet scary because well you never truly know when the time will come. 

I hope that my earthly job is evident to others in my everyday life even though I might be unaware of what it truly is. I hope that others are able to see the light through the darkness of losing a close soul. The human body is not invincible but it is strong in will. Death is not an end to a story it is a reassurance that a story is there and ready to be heard should one open their ears to listen. 

May Matthew Waters, Jerrel Brooks, Donald Jiskra, Christina Tournant, Laura Kelly, Eibhlin Ewald, and Susan Jordan all rest peacefully with a sense of comfort knowing their earthly job is completed. For you have all touched me and I will carry your lessons with me until my work here on earth is complete. 

The other M to my M&M. 

Yesterday I saw the movie  Sisters with my Sister. I don’t think the two of us have laughed that much since last summer when I drew a face on my stomach with a marker. We giggled as the ticket checker asked if we were 17 and we both said yes sneaking in, even though only one of us was. We drank cherry slushies and put our feet up on the seats. We drove home screaming Hello by Adele at the literal top of our lungs, I’ve never heard my sister so loud and goofy until last night. 

Growing up Mallory and I have always been close, we’re only 14 months apart but over the last three years our sister bond has grown tremendously. I’m the older sister but often times Mallory has stepped up to fill that gap when I’ve been too weak to do so. We don’t really talk about it much, it’s a lot easier to share secrets about boys, go to the mall, and watch netflix together but I know that we both know we’re different people because of it. The two of us share something undescribeable. 

As this year gets closer to ending I’ve found that we’ve grown closer together than we ever have. We have sister dates often, I’d rather spend my Friday night with her than anyone else. I know we both secretly know it’s because I’ll be going away to college next year and she’ll be the only kid in the house. 

I wonder where life will take our sister bond and who we will become. Mal plans to attend the University of Alabama as of now which means my other half will be 8 hours away from me, the longest time we’ve ever spent apart from each other was a week. 

As we sat in the theatre yesterday I watched a story unfold of two sisters who reunited in their home town to throw a crazy party. Hidden in the movie was a bond these sisters shared miles apart from each other but yet still looked out for one another. I’m not sure if Mal was imagining the two of us as the sisters in the movie but I know I was, of course in my mind we weren’t throwing a banging party and buying more booze than one could imagine but who knows maybe we will turn into party animals down the line. (JUST KIDDING MOM!) 

I’ve never really looked into my future much as a child, granted my biggest dream when I was younger was to own an ice cream store, I really set the bar high for myself. I’ve thought about what I wanted to do but I’ve never planned out much of my life, unlike Mal who already has a Pinterest page set up for her someday wedding. I find joy in the unexpected, there’s a comfort in not knowing.

I’m sure I take comfort in the unpredictable because very much of my life has formed to be a life of unexpected events. Some of them being the greatest things to ever happen to me and others to dig deep into my soul hard, through all of it though Mal has been there. 

I’m definitely the loudest of the two of us, I’m also certain this quality of mine annoys Mallory often. Somehow though through all of my chaos Mallory’s presence in my life is loud, she doesn’t have to say anything, but I know she is there, she is loud in my life but her voice is quiet. 

It’s funny the things that can stop you in your tracks and make you think about all that’s going on around you, like a silly movie. I find joy in knowing that the time ahead of the two of us will bring so many new adventures unlike any that we’ve ever known, but I feel loss in knowing we are ending a chapter of life the two of us have spent 16 years forming. I look forward to visiting each other in college, being maids of honor at each other’s wedding, being aunts to each other’s kids, and hopefully growing reallllyyy old together. Imagining the future isn’t so bad when I’m able to imagine it with her in it, and I am certain she will always be in it. 

While I have no idea what tomorrow brings, or the day after I know I have a sister that stands tall beside me, or in Mal’s case short because I’m taller. (;  the best gift I’ve ever been given in life is the gift of a sister to do life with.

As the sisters in the movie said “home is a feeling”, and she is my  home. 

The kids behind the glass walls.

As time passes emotions tend to soften but the memories stay, a reminder of how it felt stays but the tenacity of the actual emotion fades.

Through all of my journey  there is one feeling that I remember so vividly, granted not quite as much as I used to but it still sticks with me.

Thinking back to it now I wonder if my mind has exaggerated the feeling, probably not but I like to tell myself that because the thought of it really being as bad as I remember it is well, sad.

I don’t even really know how to explain the feeling, it’s one of those  “you have to experience it to understand it fully” kind of things.

I consider teenagers to still be babies, so yes I consider myself still a baby. There’s much to be learned in life and I don’t believe we begin to actually comprehend what we are experiencing until we are much older.

When a child is sick they are forced to grow up, and grow up quickly. They  have to come to terms and accept the fact that they are no longer like everyone else, that their life from that very day forward will not be the same. This is huge.

Nobody should ever have to miss out on life, let alone a young child.

So maybe I remember this moment so much because it was the time in which I began to grow up, and realize the extent of exactly what was taking place in my life.

I don’t remember the actual day or even the events that took place prior to this moment, I just simply remember the moment.

My mom has always stayed the night with me whenever I’ve had to “sleep over” at the hospital. This was the first night she couldn’t. My dad was out of town and it was flu season so siblings weren’t allowed to stay the night at the hospital, so my mom had to stay home with my sister.

In theory I realize this really isn’t that big of a deal, kids stay overnight at the hospital by themselves all the time but in that moment it was a big deal,  it was the realization that I was growing up and that I would have to learn to advocate for myself.

As I laid in my hospital bed alone that night the room was dark, the only light was the blinking from the helipad landing outside my window. The nurse came in and hooked me up to IV Potassium.

IV Potassium is harsh it burns your veins as it flows through them. It’s one of those feelings that could probably make a grown man cry, it definitely made me. There’s not really anything you can do to lessen the burn you just  have to ride it out, so that night I laid there as it rushed through my veins. It’s a surreal moment really to have something be pumped through your body because you’re not stable enough on your own,  to be hooked up to a machine that’s keeping you from being much more ill than you already are.

I say all of this because I don’t think we often realize what children are put through when they have to live their life in a sick body.

I’ve met a lot of kids over the past three years who have been battling illnesses, kids all across the country, even the world. And though many of them I have never met face to face we share a bond that very few can.

One of these people is Nate, we met three years ago through instagram, Nate was battling cancer around the time I was diagnosed with POTS and while our stories are very different they are very much the same. That night when I laid in the hospital all alone I had Nate to talk to and I think that’s what made it all a little bit easier, knowing I wasn’t alone.

I’m very proud to say that Nate has kicked cancer to the curb and shown it who’s boss, but just because kids are able to beat their illnesses that doesn’t mean they are free. For so many the harsh treatments they have received are life altering, they will experience certain side effects for the rest of their lives. But it really doesn’t end there, not only are they left with the aftermath of something that once raged inside their body they didn’t get to experience all of the little things that children deserve to experience. This is when the handful of us grow up, we have to trade in the toys for the doctors appointments, we swap the candy for the medication, and the adventures for the safety of our own homes.

Maybe we don’t get to have all the fun, and maybe we have to swap out some things in our life but that is what I believe makes us exceptional. WE see life in a way you will never know unless you have lived in a sick body. The flowers are a little brighter each spring, the air is a little fresher each morning, food tastes more amazing, and friends are more treasured.

So maybe I don’t know how to explain to you what it’s like being sick but I do know that because of it I am different, I am stronger.

It seems I am more aware of younger children now a days that are sick, most likely because I am more involved in fundraising and charity events. While my heart feels so heavy that these kids have to go through the pain that I am somewhat familiar with I am comforted in knowing that they will come out on the other end the most strong and beautiful people.

I’m not sure what the intention of this blog post was, maybe I just wanted people to realize and stop to think. Maybe my intention was to get you to stand up and take action.

The kids that have lived behind the glass walls are the strongest kids that will ever walk the halls.