Month: March 2016

As I Pack My Bags.

In a little less than 5 weeks my highschool journey will be over. I really feel pretty nauseous thinking about this for so many reasons. My brain is overwhelmed with “what the heck Mer, it’s time to get your $h!+ together, but then again it was 4 years ago too!!!” 

I’m feeling a tornado of emotions as I realize that a huge part of my life is coming to an end in so many ways. I understand that for every highschool kid now is a crazy time, but then throw in one that is medically complex and well AGHHHH, you get me right now!

Not only am I reflecting on the last 4 years but I’m (attempting) preparing myself for the next 4. If I  recall correctly, planning for highschool was a heck of a lot easier than this was, and I wasn’t sick then either! So here I am buried in my own little pharmacy, preparing to pack up my little home here in my little town, and travel to the city that I so tremendously love to start a journey I am very uncertain where it will lead me.

As I look back on these past 4 years I feel exhausted because my goodness so much has happened. I went from a normal highschool teenage girl, to a sick teenage girl trying to find her place again in this world. As I was talking with a coworker today who is also medically complex I somehow found myself spilling words and emotions I definitely wasn’t prepared to share. I don’t know this coworker well, I see her maybe twice a week but for an hour we listened to each other’s struggles and trials and I found myself ranting about missing out on the “highschool experience” so many around me have had.

It’s silly I know, it’s something that in the big picture doesn’t matter. But as I pack my highschool bags up in my head and prepare for college bags I am reminded that these bags aren’t filled with what I thought they would be 4 years ago when I set out on this journey. I am realizing the aspects of my life that have become far more mature, and then I find the aspects in which I have greed and envy that I didn’t realize I had for those around me that have experienced the things I long to. 

As I emotionally pack my bags I am left with tremendous uncertainty in the road ahead. I’m beginning to realize a little more each day that this is actually happening. You see for a while I was so sick I had begun to give up the dream of ever making it to college. I wasn’t sure I would ever be able to move out of my parents care and be on my own. But, here I am online shopping for measuring cups, and shower curtains because those are obviously the most important things to take to college!!

I really have no idea where this journey will lead. I have high hopes and dreams of making it to medical school and then traveling to the east coast for a surgical residency and then coming back home to the Midwest to take up a job as a trauma surgeon. It all sounds so simple and easily accomplished when typing it out on here but I know the journey ahead will be everything but simple. 

As I mentally pack my bags I am preparing my body for the years of healing ahead of me as I try to understand I will be navigating every other college kids journey but also while embarking on a tough process of physical healing. I have come to realize that the next 5 years ahead of me will probably be the hardest yet as they will be filled with trial, and error, and unknown experiences in attempts to restore my being to what it once was. My body will be pushed in ways I have never before felt, and the outcome is completely unknown.

So as I pack my bags mentally to prepare for this new journey ahead I am reminded of the journey I am completing, and how just when I thought I couldn’t make it through,  I somehow managed and came out even stronger. I’m packing my bags now, so that there may be room for new, far better ones. 

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I Feel Numb. 

I’ve been trying to write this post for three days now. I want to scream at this screen because I can’t get the words out to match the emotions.

I sat on an exam table Thursday in an old room exactly where I was six months ago. I only half listened per usual, waiting to hear the words “you’re cured Merideth.” It’s silly I know, this is something that I have been waiting to hear for 3 years now and I know that by now I should let this hope go and just appreciate the little things, and I do, I appreciate them so much, but I still hold on to the hope that I will someday hear those words. And I’m sure I will someday, but it just doesn’t feel like I’ll hear them soon enough. 

So instead I sat on that table and was reminded that nerves take years to heal, that this is not a race this is a marathon. And I felt numb. 

I was told that currently according to my numbers my body shows no symptoms of POTS. And while everyone else was tremendously happy for me, I went numb. I thought in my head “Gee I wonder why, maybe it’s the 30 pills I throw down my throat everyday, maybe that could be the reason why!!!” I tuned out the rest of what he said and picked up the part where he explained that the years to follow will be a long process of eliminating medications in hopes that this will show my body has healed and will no longer be dependent on the chemical drugs to function. 

And while everyone else felt relieved, I felt numb. I don’t question why it happened anymore, I let that go a long time ago. I’ve moved on to wondering when things will just be over and when I can just move on from all of this. So, as he explained the process that’s ahead of me my mind was suddenly filled with flashbacks to the first time my body came off of a medication and the withdraws that followed it. I remembered the feeling of bugs crawling on me, and the terrible exhaustion that covered every inch of my skin. And sitting there, remembering, my body went numb. 

Now I’m not saying I’m not happy here, I’ve come a long way, a really long way, I’ve become content in this body, but here, right now, I’m tired. I wish there was an off switch that I could temporarily turn on to escape this body for just a while and live in a healthy one, because I’ve forgotten the feeling of running down the street without my lungs feeling as if they’re going to give up on me. My legs twitch, and my body shakes, my eyes carry heavy bags under them and my muscles are so very weak. My body is weak, and there is no off switch.  And so today, I feel numb.

I’m not sure if I will ever let go of the thought or hope of being “cured,” I’m not sure if there even is a cure. After all there are so few patients in remission/no longer showing signs of this disorder that it’s so hard to tell a patient what a future life will look like after being claimed free of POTS. I’m not sure if my body will carry side effects from all of the chemical drugs over the years. I’m not sure if my body will regain the nerve strength it once had. I’m not sure if my brain will ever fully heal from everything that has happened. So maybe that’s the weight I carry so heavily every six months as I await the words. There just is no certain path of recovery, there’s no plan of what to expect. I’m walking into a dark cave with no pathway outlined. But then maybe that’s the good in all of this. I don’t have anything to compare this journey to, so I can’t feel defeated because well there’s no comparison. But as I stare out into the world today wondering where it will take me, I feel numb. 

Out of all of this though there’s one thing I am certain of: I am always stronger. Tomorrow will always be a new day and it will be filled of opportunities. However, today and tomorrow I will feel numb, because once again the unexpected is settling in all over again. 

Let’s Talk About Cancer. 

Death is hard to talk about, it’s far easier to just skip over the topic. Why should we discuss someone fading away when we could talk about beautiful beaches and gorgeous sunsets. I think the same way often. Why discuss me being sick when I could discuss where I’m at now.

But you see this is where we are causing more hurt. By not having these discussions we are letting our society pretend they aren’t happening. My friends death is very much a thing, it’s happening every day.

I’m not talking about the elderly, people, foolish decisions, or things out of our control. I’m talking about the times we brush over this topic when it’s answers are right in front of us.

I’ve talked a lot about cancer recently and I understand it is a very tragic topic but I’m bringing it up because people my age are living their lives oblivious to the fact that this can happen to anyone and everyone. It’s very easy to consider it impossible  to ever happen to you, but when it does then what? 

We live in a world where medical advancements and research are at their peak! We are at a point we have never been at before! I just recently read an article talking about genome sequencing and how it used to take 12 years and cost TRILLIONS, today it takes one day and costs a thousand dollars. 

The answers and cures are at the tip of our fingers, we just need to reach a little farther.

If we continue to brush over these topics though we are letting these answers and these cures slip out of our grasp. By not having these conversations we are making this research become irrelevant. 

It’s an awful thing to watch someone fade away before you. It’s very easy to push these images to the back of our minds. It is extremely difficult to talk about them. I’m to blame too, even I would rather just forget about it. But I can’t do that, it is not fair to all of those relying on people like me to speak up for them. 

As I’m brought more and more aware of those around me I have come to realize that it so important that I have these conversations with my peers.

Being proactive is key to solving any problem. I’m not saying that just by talking about cancer we will cure it, but I am saying that by talking about it we are getting a few steps closer than we are now.

Our voice is the most powerful tool we have. 

I challenge you to stand up to cancer with me. Don’t let the fear of it keep you quiet, by not speaking up we are letting it win. We are the key to research and education. It is our job to get people talking, to have these discussions, and to give reason for research.

The protocol for cancer treatment hasn’t changed in YEARS. We are in a medical revolution, we have more aspiring doctors now than ever. It is imperative that we find these answers, because they are there, we just have to look a little harder. 

I challenge you to get talking, speak up, have a voice. Let’s start a revolution. Let’s end the C word. Let’s fight back so hard that the word becomes one of the past. Let’s talk so much about cancer so that the generations to come will never have to experience what we are going through now. I guarantee if you think about it you can name at least one person that has been diagnosed with cancer. Some of us can fill handfuls with names. 

So join me friends, lace up your shoes and let’s kick cancer to the curb. #LetsTalkAboutCancer #KickingCancerToTheCurb

The Dentist and My Friend. 

I was late because I had a dentist appointment. 

“Oh thank goodness you’re here!” She said as she let out a giant sigh. 

“Why, what happened?” I asked.

“Oh he had a huge meltdown because you weren’t here this morning! He threw his things on the ground and it was just terrible! He will be so happy to see your face when he comes back from cooling off.” 

Every Tuesday and Thursday morning I internship at ArtMix, an organization that uses art to teach our friends with special needs life skills that they can use to get a job after highschool. Over the last 7 months I have been working with the same group of 9 highschool students. This has become such a rewarding experience for me but yesterday just proved even more how lucky I am to have this opportunity.

You see one friend of mine in particular has formed a very special friendship with me. While for the most part he is pretty non verbal. He does talk but it is very hard to have a conversation. I do truly believe he understands what is being said to him he just doesn’t always get his words out to respond back to you. But that hasn’t let my friend stop enjoying his job. Every single day he walks into the studio with the biggest smile, and let me tell you his smile is one you cannot forget! 

Usually I am helping teach my friends. Even though most of them are the same age as I am, some even older. However my friends in return have taught me many lessons, and yesterday this friend in particular taught me a very special one. 

You see I’ve been having a rough time lately, I’ve been feeling a bit down and out of place but I walked into the studio yesterday to find that my usually happy friends day had been entirely flipped upside down because I didn’t show up on time. He was so worried that he wasn’t going to see me that it put him in a terrible mood and caused him so much stress he couldn’t even handle it. Yesterday my friend made me feel important, through his actions he showed to others that I was important to him. 

My friend who very rarely vocalizes his thoughts in the form of words, expressed how much he cared for me. I usually have very little clue as to what is going through his mind. Some days I wonder if he is even happy to be where he is because he always does his job with little vocalization. But yesterday my friend showed me that I had become a VERY important part of his day!

The best part was what followed though, when my friend had cooled off he walked in to the studio and I turned around to greet him, and there was the smile followed by a big “Merideth!” You see for a while my friend couldn’t quite get the Merideth down, this has been a recent discovery. For about 5 months I was “Meridan” and I didn’t bother correcting it because it was my friends way of referring to me, but on his own over time he learned to correctly pronounce it. So seeing that big smile and my name be shouted across the room, well that was enough to make my year. 

I later explained to my friend that I was late because I had to go to the dentist and that it was all okay. He looked at me and laughed and said “the dentist?” I took that as him realizing how silly it was to get so worried! I told my friend that I was so sorry I didn’t tell him last week that I would be late so he could be prepared, I assured him I would do my best to let him know ahead of time when I was going to be gone so he wouldn’t have to worry. He then looked at me and said “Can I please have a hug?” I was so happy to share this moment because my friend was able to talk through the situation with me and understand that it was all just a little mix up and everything would be okay! I was so happy to share a hug with my friend after we made sure we were both okay. 

For the first time in months I felt important, and needed. Someone that really only slightly knows me was able to show compassion to me in a way I had no idea he could show. My friend was there for me on a day I needed him, and I was there on a day he needed me. Although my friend and I don’t have normal everyday conversations we enjoy each other’s company. Although we don’t discuss current events, or anything really we have still formed a connection between each other and that is truly beautiful. I believe my friend understands everything I say to him, he may not be able to show it all the time but he is incredibly smart.

My friend showed me I was important on a day I was feeling not so important, and that meant the world to me. 

Grieving over a Girl.

I’m grieving and I don’t know why. My thoughts are clouded and I can’t think straight. My palms are sweaty and my heart aches. 

I don’t understand grief. I mean I get the concept, I know what it is and I know why people go through it, I understand that part. But here I am a month after she has passed away and I find myself lying in my bed grieving over a girl whose soul I barely got to know. 

I don’t know why I’m grieving, we only met once. Her curly hair was like mine, and her outgoing personality and goofy soul the same too. But we didn’t know each other. We didn’t share secrets and we didn’t share inside jokes, we only shared each other’s presence for an hour but I’m grieving.

Today I was given back the hats I gifted to her. The tags still on most of them as she never got a chance to wear them. I held them tight because I knew they had once held her touch. 

I’m grieving over a girl I barely knew. My stomach feels sick to think about what her family feels. My knees give out when I imagine how it ended. I’m grieving over a girl I barely knew. 

We only had each other’s presence for an hour but in that hour I learned more about her than I thought I did. Her determination and will to fight. Her strength. Her humor, and friendliness was enough to fill the hearts of this entire world had she had the chance.

I’m grieving over a girl I barely knew and the anger I feel for how her story on earth ended is enough for me to punch a thousand holes in a wall.

I’m pissed off that this earth allows such tragedy to occur. I’m angry at our society for not figuring out the answer already. I’m beaten down because I can’t fix everything. 

I’m grieving over a girl I barely knew, and I’m mad at this world. 

Bruises and the Boots

I have a bruise on my knee. I got it from passing out last week. It’s just one bruise but it reminds me of the days when my legs were covered in them. It reminds me of the times I scraped my head on pavement from falling on it, from the scratches of hitting the corner of things when trying to catch my fall before passing out. The bruises fade but the memories don’t. 

It gets pretty heavy walking around in a body that has endured so much pain. It’s tiring to wake up each day in a  body that has been beaten down so many times. Some days it’s just so much easier to crawl back under the covers and forget it all. Some days the bruises are just too much to hide. 

“I remember those boots she said, they’ve come a long way, they’ve gone through so much” she said. “I remember when you used to pass out and I would have to hold your legs up, I would always talk about those boots and how much I wanted to steal them.” Everything is a reminder of what everything used to be, it surrounds me and often pulls me in so deep. I know this is something that will last forever, while of course the memories and the pain will fade deep down they will always be there, how the bruises sting of a weak body so helpless. How the dark blue veins that stick out remind of the countless times they’ve been poked and prodded. How chocolate icing tastes like crushed pills, not chocolate icing. 

Moving beyond and healing is a tremendous thing but some days it  drags you down to your very lowest and you are suddenly reminded of the bruises and the boots.

The bruises and the boots are all just material things that hold a feeling that is anything but material, a feeling so strong you can crumble beneath it.

How do you turn the bruises and the boots into a driving force? How do you rid the memories from the material things and begin a new? Will the bruises and the boots always last forever?