Go to Paramedic School they said!

Go to Paramedic School they said…it will be fun they said…

Just kidding, nobody says that.

My cap and gown came in the mail this week. It’s kind of funny if you think about it: you spend a year learning how to do everything you can to save someone’s life and then bang: insert your card number here and pay $75 so you can look like part of a cult and you can walk across a stage and get a diploma to certify you can save lives, but just kidding it’s actually blank because you’re extra and won’t be finished with school for another three months. Come back then if you’ve passed and we will give you the fancy paper to go inside the fancy paper holder, and if you don’t pass well at least you got to wear a cap and a gown, better luck next time!

But ah go to Paramedic School they said!

College is weird. You see I did the whole campus thing for two years, (minus living in a dorm and I know I know that’s the real college experience but I’m sorry I just can’t live in closed corners for a year with someone like that, heck they could give me measles or mumps now a days). But none the less I did the rest of it. The waking up early, or sometimes forgetting to wake up, walking the mile to class and showing up looking like someone plucked you off the corner only to realize class was cancelled, go back home and take a nap, and then try to make it to that next class on time. The big giant classrooms so distracting that sometimes you questioned wether you were even in the right lecture. And the ramen noodles, oh the ramen noodles. And while it was all lovely, truly just so sodium filled and sleep deprived and lovely, two years of it was enough. To think I had originally signed myself up for six years of that- what was I thinking.

But go to Paramedic School they said!

So I did, and being the smart person I was, or at least thought I was at the time, I cut the six years in half and made it three. I know I’m always one for the shortcut! Well three years has almost come to a close, and while I’ve realized I could have made it even shorter and done it in two years, I just really wanted to squeeze in an extra year of seeing how high my sodium levels could get while living on Ramen ya know? (Hopefully you don’t.)

I think at the end of ones college experience they usually say things along the lines of “I’ve grown so much as a person. I’ve made so many incredible memories. I met all my bridesmaids there! It was such a wonderful time! And oh the parties were so great!”

But go to Paramedic School they said!

If I’ve grown as a person at all it is not in the sense that I discovered some divine internal virtue and had an eye opening moment in my math textbook that made me realize how much I appreciated calculus and all it taught me. No. I’ve grown as a person in the sense that I now constantly speak at a 11/10 volume, because apparently my 10/10 volume required others to need hearing aids to understand me. “DOES THIS HURT?” 11/10 isn’t a big step but we’re getting there. I’ve also grown in the hospitality department, I’m really good at asking people to put their seatbelts on, and to “be careful on your step out of the ambulance”, I’m still working on the courage to remind my passengers to keep all body parts inside the aircraft while it’s moving, maybe someday, baby steps. Another big area of growth for me has been beating my previous records of how long I could hold my urine inside of me, and how long I could eat my insides before I required actual food because I had no insides left. I’m particularly proud of those last two. I suppose I have grown a little more in some far less exciting ways, I should probably include those too so that I make my mom proud. Mom, I’ve learned how to be semi-confident and to always remember to drink coffee before I open my mouth at 7am.

The incredible memories I’ve made haven’t been studying abroad and drinking Guinness in Ireland (did I get that right?). They weren’t made on spring break in Panama City. Kudos to you if those were yours, all the power to you bro-ski. For me though the incredible memories were my first field intubation, getting ROSC on a patient, a “good job kid” from my preceptor I look up to. Also on the list would be the first time I was called something repulsive by a patient that was quickly followed with “you’re a pretty white girl”, because well welcome to Indianapolis, it’s pretty incredible, and pretty memorable.

I can assure you I haven’t met my bridesmaids because well most of the people I’ve met average about 20 years on me. (And thank goodness for that because someone around here needs to be mature and make the big decisions- surely that won’t be my job in four months will it?) No offense Glenda, but I’m concerned that by the time I find a compatible human match (hopefully it’s a human) it might be time to attend your funeral, I’d really hate to get your hopes up. However, I have met some truly incredible people that have taught me more than I could begin to type. They’re just really good kinfolk if you know what I mean. I’ll take some good kinfolk over potential bridesmaids any day, sorry Glenda. Plus your bridesmaids won’t tell you the dresses you pick are ugly, they’ll just wear them, but the kinfolk- they’ll tell you they’re ugly, and that’s what I need in my life.

And as far as the wonderful time I’ve had, well…once I got peed on. So maybe that sums that part up for you.

OH! And I almost forgot the parties! Probably for a reason considering I can count all the college parties I attended on one hand. I could never enjoy the parties because I was too busy counting Jimmy’s respiration’s while he was passed out in the corner, someone had to be responsible there right? Me? Responsible? One breath…two breath…maybe 7 total? I don’t recall learning that was a good number…wake up jimmy!

But go to Paramedic School they said!

In all seriousness the last three years truly have been an incredible experience, particularly this last one, which has tested me in more ways than I ever thought possible. I definitely don’t always come out on the other end in one piece but I sure do try. And for all the random pieces that have been chipped away and put back together over the last year I guess you could say I kind of came out on the other end okay, or at least it appears that way. Image is all that matters anyways right? Who cares about sanity these days!

Cheers to college…and hoping I don’t trip over my gown, or sneeze off my hat, but most importantly that in three months I hopefully get the actual fancy paper to put inside my fancy paper holder.

And to all those that have given me the pep talks along the way, you are the true heroes in my story. This girl requires at least one pep talk a day.

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Bodily Fluids and Big Dreams.

Plot Twist.

I toured Columbia and Loyola, I dreamed of a future walking around a campus with a portfolio larger than my life itself. I created dreams of a future in which I explored the city of Chicago in my Metallic Bronze Doc Martins along side my fellow sculpture friends. In my free time I melted Macaroni and Burnt Sienna crayons onto Canvas to make wall art. I bragged to my peers about skipping intro sculpture classes because I had passed high school with AP Sculpture Credits from a unique Liberal Arts High School. I made myself big and colorful, what I thought was something that would make me happy.

It seemed like the perfect plan. I would forget about my accident, I would start over, create myself into something new. Nobody would ask questions because nobody would know. I would make that part of my life small, and tuck it away. Maybe I would even magically become healed if I ignored it enough.

And then one day I found myself sculpting a wheelchair out of wire. Next were deconstructed flowers showing the transformation and concept of healing. And before I knew it my entire college portfolio was centered around how my life had changed since my accident and what I had come to understand.

I thought about the people that had cared for me over the years and would occasionally find myself dreaming about a life like theirs. How cool it would be to be one of them. And then I would remind myself that a future like that was unobtainable. I remembered being told so often “that it was all in my head” and feared the judgement that I knew would occur should I even attempt to become one of the people I had learned to look up to and admire so strongly.

I’m not sure what ultimately convinced me that a life of Burnt Sienna and Macaroni crayons wasn’t the future that I wanted but whatever it was I suppose I should be grateful for, but then again there are days in which I still wonder if the crayons had been the better option, usually those are the days I come home covered in bodily fluids that don’t belong to me, but I guess that’s besides the point. Bleach is a good thing and Vicks Vapor Rub does a lot more than just clear the sinuses.

PLOT TWIST

Anywhom for whatever reason that I decided that the potential criticism was worth the overall satisfaction? giving back? healing? that I was certain I had to give the “dream” a chance, and I’m thankful I did. Typing this makes me feel like a little kid, or one of those happy fantasy stories you see in commercials “Gertrude has always wanted to give back and return the favor she received ever since she was dumped on her head…look at her now achieving her dreams, is it time for you to be like Gertrude, maybe it is because there is a nationwide shortage of Paramedics” HA but I guess it is true, it was just a dream once, one that somehow beyond my wildest understanding has turned into an almost reality.

And that’s the thing, I never thought I would get the true honor of asking you about the color of your bodily fluids, did they remind you of Coffee Grounds? I’m sorry I went there, no actually I am not, not at all. I never thought such a life would be my reality because I was so convinced that others would be so bothered by my desire to become the provider instead of the patient. And it’s true, there are people that don’t understand. I used to try so hard to explain to them and gain their acceptance, to be seen as equal by them. But I know that isn’t always going to be the case.

I’ve come to realize and hopefully soon truly accept and believe: Not everyone will understand, not everyone will be okay with, and not everyone will support me. I’ll have to work a little harder probably, maybe fight for the inclusion occasionally, and definitely explain more times than I ever thought possible. But I guess that’s all just a part of going after ones dream, and if thats the price, I’m okay with that.

Can’t we all hope and wish that the person whose worst day we showed up on was able to turn it around into something positive? Isn’t that what we should strive for? To attempt to leave an impact that might make them be like Gertrude with a sappy yet grateful outlook on life that someday ends with her on a commercial attempting to push you to follow your dreams?

If there’s anything I’ve learned its that not everyone is going to understand or support you but thats okay, there will however be people out there that are far greater and so much more patient and inclusive than you could have ever hoped for. There will be setbacks and times that make it seem easier to just leave the dream behind, but that is when your people will show up and remind you why you even went after the dream in the first place. I’ve found so many of those people and I don’t think I would have, had I decided to stick with the Burnt Sienna and Macaroni crayons. Chances are if you took the time to read this you’re probably one of them and for that I’m endlessly thankful. It is because of you and the support you give me that my dreams seem obtainable and my past doesn’t make me any less. Here’s to embracing the struggle, even when it gets tough, really tough. And here’s to showing up anyways. And also to recognizing the special people, and giving them the thanks they so greatly deserve even though chances are they won’t accept it anyways. And now I am doing that thing where I ramble and I will stop. Cheers to dreaming, and chasing them.

I am now booking motivational speeches on how to discuss bodily fluids as part of your everyday life. For inquiries and fees please contact my manager. 😉

 

Gertrude, your hair looks beautiful, but maybe you want to wear my hat? BTW, I have a ‘broken brain’.

“Your Heart Rate is a little high, you’re probably just nervous about the appointment” -The RN at my ENT appointment

I laughed and then announced “Oh no, that’s normal for me, I have a brain injury.”

My moms face turned upside down.

“You should have told her you have an Autonomic Disorder.”

Oops, you’re right, maybe that would have been a little more subtle. I mean after all my usual response to such things is “I have a broken brain”. I guess you could say I struggle with making subtle announcements.

I mean if it were up to me I’d get a name tag that stated “Hi my name is Merideth, I have a broken brain, please excuse me if I forget what I’m saying half way through a conversation, pronounce a word backwards, mix up the 10 digit number you just gave me, or just completely fall over onto the floor.” I’m all about those subtle gestures. I suppose it is up to me, and I could most definitely seek out the largest name tag known to man, but it’s far more interesting watching facial expressions when you rattle off some backwards word concoction and suddenly appear as if you’ve had a stroke. I don’t at all find pleasure in my twisted verbiage, and awkward temporary brain malfunctions, nope not at all. Don’t worry Alice, I don’t need your essential oils, and facebook thoughts and prayers, my brain will still be broken!

So yes mom I suppose I could have much more subtly announced I have an Autonomic Disorder as a result of a Brain Injury (; (see what I did there, we both won). But I lost all that was once subtle about me 6 years ago when I made the ever dramatic, absolutely far from elegant, up close and personal greeting with the basketball gym floor. My subtle days are long gone, they hit the floor running, well maybe not running, but they definitely hit the floor.

I traded the subtle days for the blunt days, the VERY blunt days. So yes Patricia, the Imaging Technician, I have had a CT scan before, in fact I’ve had many, bet you can’t guess why? That’s right, I fell straight on my head, and no Patricia I wasn’t dropped as a baby, no Patricia I didn’t fall off the monkey bars, no Patricia I wasn’t skydiving when my parachute didn’t open. Yes Patricia you heard that right, I willingly stood in peoples hands in attempt to cheer on the crowd when I did the exact opposite and scared them all shitless. Yes Patricia, I too hope my brain is still in there on that CT image.

Now I’ve had many lessons life has so graciously gifted, more like thrown at me, after I was thrown out of the air. Oh you fell on your head? Here let’s hit you in the face with big life questions because that initial hit wasn’t enough. Have I made it obvious enough yet in this post that I fell on my head?

Anyways the point I’m attempting to get at here is this: why do humans waste so much time attempting to leave subtle hints at their feelings and emotions when they could be straight forward and blunt instead?

Yes I could have told the kind nurse from Mississippi that I had an Autonomic Disorder, but you and I both know I would have done a disservice to her potentially questioning brain for the rest of her shift. Instead I killed two birds with one stone or whatever that saying is (take that PETA). Not only did I give the nurse her answer as to why I wasn’t nervous (do people actually get nervous for ENT appointments? Okay I can’t lie I suppose I once was one of them but can you blame me? Who willingly is prepared for a snake like camera to be not so kindly shoved down their nose?) Anywho I’m off topic again. I wasn’t subtle today, I was blunt. Yes I have an Autonomic Disorder but I got it from a Brain Injury. The sweet nurse now no longer has to agonize over what condition could possibly leave a sitting 20 year old with vital signs that indicated she was running a marathon. We both know homegirl don’t run no marathons. You’re welcome Martha.

Maybe you haven’t fallen (figuratively and literally-lol) into the same situation I’ve managed to land in (lol again). But I can guarantee there are at least a handful of things you are being subtle about, instead of being blunt and truly expressing how and why you feel such ways.

I’ve learned that by being straightforward about things, it has most often resulted in conversations that likely wouldn’t have occurred had I chosen to make my thoughts small, or tuck them away, merely hinting at the reason.

Now I’m not saying you need to climb into someones hands ten feet in the air to announce what you have to say, baby steps y’all, we can’t all be cool like me. But maybe pushing yourself more than you normally would to speak up wouldn’t be the worst thing in the world.

I’m certain had I not scared the at least 10,000 people by announcing I have a “broken brain” when I find myself in situations where it’s clearly obvious I’m different, then none of the opportunities I’ve had to educate others and create awareness about POTS would have occurred. Sometimes stepping out of our comfort zone to express something we would normally keep to ourselves, can result in a beautiful kind of magic. A valued conversation that results in all parties feeling explained and understood.

I feel like this blog post should also come with a disclaimer however; maybe take this with a grain of salt, trial in small amounts. I highly advise against putting on your blunt ego and suddenly telling Gertrude her haircut looks like ramen noodles, that might be taking the blunt thing a little far. However speaking your truth, and your feelings, (that aren’t about Gertrude’s hair) can often lead you to some of the greatest conversations you never once knew were possible, because you were comfortable with subtle and didn’t dare to be blunt, even though you longed for the conversation that would have occurred had you been blunt and provided the listener with an opportunity to question you on such feelings, but you were scared or nervous, so you made yourself small and subtle. Stop doing that! You are worth being heard, even your blunt exclamations, whatever they may be. Just leave Gertrude’s hair alone when you do decide to give yourself the voice.

GERTRUDE YOUR HAIR LOOKS BEAUTIFUL, BUT MAYBE YOU MIGHT WANT TO WEAR MY HAT.

It might Sting, but YOU can turn it into a Good Thing.

I recently read a new Abstract published in the “Journal of Internal Medicine” on POTS. It was written by a wonderful POTS Specialist, Dr. Arthur Federowski, all the way from Sweden. The Abstract is full of incredible and well detailed information and research, I might go as far to say that it’s the best document I’ve ever read on a detailed exploration of POTS.

In it Dr. Federowski writes: “The long-term prognosis of POTS is not well explored. It is estimated that around 50% of all POTS patients spontaneously recover within 1-3 years of diagnosis.”

…ouch that stings.

Next month marks the six year anniversary of my accident, the literal downfall of my health, and the ultimate reason I even find myself here typing this blog still today. So I guess in short I clearly am not part of that “around 50%” category.

…ouch that stings.

I’ve never allowed myself to be oblivious to the fact that my diagnosis is rather complex, and different than most POTS patients. I mean come on not everyone diagnosed with POTS fell 10 ft headfirst onto a basketball gym floor, and thank goodness for that! Therefore I obviously don’t fit all of the usual statistics and research, however after reading what felt like an exact autobiography of the last six years of my life, its still a bit difficult to read that part of information. Of course there are plenty of other POTS patients that “fall “(whether literally or figuratively – lol) into the other 50% category with me. I don’t wake up everyday hoping it might be the magical day that I am miraculously cured and join that category, but I would be lying if I said I didn’t think about the possibility of someday living without POTS.

With that being said I am incredibly thankful and tremendously lucky that in the six years since my accident I have recovered and healed as much as I have. I very strongly remember the days sitting on my moms office floor home schooling myself, wondering if there would ever be a day in which I actually returned to real school, let alone graduated high school. In my last year of schooling now for my career those days seem so distant and long ago, almost a foreign memory, yet they were all very real and possible outcomes to think about at that time. What would I do if I was not able to return to school? What would my life look like if I was stuck in my wheelchair for the rest of my time on earth? What would my quality of life be?

In my current days my diagnosis of POTS only occasionally makes an appearance in my everyday thoughts, it no longer consumes my every minute, and no longer seems to drown out all other thoughts. While this in itself is comforting to realize, I do still occasionally ponder the thought of a day occurring when it no longer enters my mind and how it has made certain situations different, but is rather just a distant memory of my past.

I’ve talked a lot on this blog about learning how to readjust to life after being diagnosed with a Chronic Illness that controlled most aspects of my daily life, and then learning to readjust again as my health improved and I gained a new sense of freedom I had forgotten I once had. While the physical aspects of a POTS diagnosis are incredibly difficult, painful, heartbreaking, and overall life changing, I think the emotional impact it leaves a person with are far more altering than anything else.

When I could no longer walk independently I found a way to fix the problem- I learned to adapt to using a wheelchair (shoutout to Bernard the Blue Chair that allowed me a years worth of participating, I might not have had without him). When the suggested lifestyle changes and dietary supplements didn’t work I found an alternative treatment- I accepted relying off of medications daily to function. When I was too weak to physically attend school I sought out a different option- I adjusted to learning from home. All of the physical problems had answers, and when there weren’t answers, there were other solutions available to manage the physical impairment. The physical disability aspect of the diagnosis never truly disabled me physically, it just provided road blocks along the way that I had to learn to navigate and adapt to.

that stung at first, but then it healed…

However, when I realized that a significant portion of the initial two years after my diagnosis was a time that I was unable to remember, and recall, there was no way to fix that and bring those memories back. To this day I still have only a handful of recollections from that time. When I sat in numerous doctors offices and listened to them explain to my mom and I that what I was experiencing was no more than a psychological problem, I believed them. There was no way to undo what had already started to be engraved into my mind. Yes I now know otherwise, and that they were incorrect, but I was told for so long that I was wrong, that I began to consistently question if others knew my body better than I did myself. This in turn produced a constant feeling of needing to second guess my everyday feelings and thoughts, and a desperate need for someone else to validate the thoughts so that I could be confident I was right all along. Something that still to this day I struggle with the most. When I thought the only alternative to suffering with POTS was to end my overall existence, I truly considered it. There’s no going back in my life now and undoing what I lead myself to believe then. When I explained for four years, and still do to this day that POTS is not an imaginary made up condition, I question whether people believe me. None of these things had alternative options. There isn’t any way to undo the memory loss, I can’t take back the doctors words and reverse the impact they have, there is no going back in time and assuring myself that someday I would find an answer, truly knowing people believe me and understand isn’t a thing. These things still stay. These things always will stay.

that still stings, it won’t ever fully heal…

Do you ever truly spontaneously recover, no matter how many years it takes?

Do you ever truly regain the entire Quality of Life you once had before?

Does it all truly just reverse itself, all of it; physically, emotionally, and mentally?

I might not be the 50% that got to wake up within 1-3 years after their diagnosis and gain their physical quality of life back they once had. I might not ever regain this. And yes it stings, it stings deeper than any swarm of bees, jellyfish tentacles, and all the other things that sting. It probably stings worse than Godzilla would if he could sting (Is “he” even a “he”?).

But I believe that in the end regardless of ones physical recovery, they will always struggle with the emotional recovery, in whatever way it presents itself, for the rest of their life. Because I don’t believe there is a wheelchair, a magic pill, or an alternative path to take in recovering from that.

But I also believe that Quality of Life is entirely what you make of it. Maybe had I believed the first ten doctors I would have made the choice to no longer exist anymore, or maybe I would have learned to find ways to continue to seek out the joy in life, even if it was all just “in my head”.

It’s almost been six years and I haven’t spontaneously recovered, but I’ve learned to deal, and most importantly I’ve learned to live with it. POTS may always physically be a part of me, I may never join the other 50% and that is okay, because as long as I continue to seek the joy, no matter how hard that may be sometimes, I am still living, even thriving. And no amount of physical limitations can take that away from me.

While I will forever be incredibly grateful for all the hard work and dedication that goes into continued research for such a desperately needed and uncharted diagnosis, I will always remember that statistics and percentages are just that. They are not Quality of Life determinants. They are not emotional prognosis’. Those are things that can only be made by the diagnosed individual, and how they decide those things is entirely up to them.

While this month stings a little extra than others, it is also an incredible reminder of how lucky we each are to undergo trials, and hardships, and to ultimately dig deep and find our will to not only live, but to thrive.

So amidst all the emotional hurdles life has created for you, whatever they may be, don’t define yourself by the numbers, dig deep, and create your own.

Do the Things.

“That has always been my biggest fear in life, that I would spend everything I had “fighting” my illness and have nothing to offer- and for me, living without being able to give something of yourself to the world, living without adding value to the world, is not a life I want. I do not want to fight for a life that consists of only self-care, I would rather die than live just for the sake of living. I can sense how fragile this life is, how fragile our futures are. How easy it is to let yourself be swept into a version of your life that you despise. It’s far too easy to let your life become something you resent.

You can’t put your life on hold until your “better” life begins. You have to fight like hell to make sure the life reflected back at you right now is one you want to be living.”

Claire Wineland(a bad ass role model for those living with Chronic Illness’ that left this earth far too soon.)

And so, you wake up and you do the things. You go to work, and you go to school, and then you go to your other work, and you go to clinicals, and you come home, and you try to keep a clean house, and to study, and to eat healthy, and if you’re lucky you get some sleep. You do all of the things to distract yourself from the part of life that involves fighting your illness. Because maybe if you keep yourself so busy you will be distracted, and you won’t have time to remember to be sick.

And when you’re at work you do what someone calls being “too attached” because it distracts you from your own reality. And you see the reflection of your former self looking back at you, so you do your best, and sometimes more than your best, so that when the reflection looks back at you, you feel peace. And it’s not every time you see your reflection but when you do you get “too attached” because you need to know that those that come after you don’t have to feel what you did, you try to change it for the better. You try to make it so that the reflection you see staring back at you doesn’t have the nightmares of the days you still remember but try so desperately to forget. So, you do more than your best, and in the moment, you let yourself get “too attached”.

And when you’re at school you sit in the back, because the possibility of being noticed when you struggle harder with something than others is too high, and you don’t want it to be obvious that you’re different. And when you don’t get the point for something that everyone else does you beat yourself up a little bit harder, and question whether you were really cut out for this. You know you were but the voice in your head from years back reminds you of your differences, and you make yourself small and sit in the back so that you won’t be noticed. But you get through the day, and you remind yourself that even if you have to sit in the back and sometimes make yourself small, you still showed up, and that is something to be proud of.

And when you go home, you most likely won’t clean or make healthy food. You probably won’t wash your hair, and maybe if you’re having a good day you’ll actually get your uniform ready for tomorrow. You’ll remember to feed the cat but that’s about it, and then you’ll fall asleep, and you’ll probably leave your lights on, but you’ve been blessed with a gracious roommate that will shut them off for you. You won’t remember to take care of everything at home, but that’s okay, because you have a sidekick of a roomie who is there to pick up the things that you fall short of doing, and she does it with love, not resentment. You are lucky to have a person like that in your life, and you feel thankful.

And then tomorrow you will do it all over again. And you will be exhausted, but you won’t have time to think about fighting the illness, and well isn’t that what it’s all about?

You do the things that bring you joy, and even though you do them differently than others because of your past, and even though you might do them more slowly or unlike most, you still wake up and do them.

And that, that is everything. Because you get the chance to do the things, you have the opportunity to do the things. For once in years you can keep up with others, and even though it feels at times that you’re slightly drowning, you’re still keeping up. You’re no longer just fighting the illness. You’re making a life for yourself, and its one you’re damn proud of.

So wake up, and do the things.

And when the things get hard, and overwhelming, you don’t quit, you keep going. You push through so that when you come out on the other end you can look back in the mirror, and you can be proud of the girl you see. Don’t make up excuses or reasons why you can’t do the things, because then you will find yourself back in bed fighting the illness, and that’s all you will become good at. And that is not what you were meant to do, you were meant to do more than just fight the illness, you were meant to succeed, not just at fighting the illness but at doing life.

You wake up, and you do the things. And you don’t for one second take for granted the chance you’ve been given to do them.

Because this life is precious, this life is your only opportunity, your only chance to make the impact you want, and to leave behind a memory of yourself you’re proud of. You don’t for once give the illness the opportunity to define you, because that is not what you were meant to be, you were made for more. So be more, be so much more that you leave others in awe at the fact that despite your illness, you still made your life something to be proud of.

“but God needed him more”…

WARNING: this blog post contains content that may be hard for some to read regarding the topic of child loss. I encourage you to be cautious before reading this if this is a topic that triggers certain intense emotions for you. with that being said I understand that this post isn’t easy for anyone to read regardless of their life experiences, but I am hopeful you are able to find the beauty in it that I was, and are able to take something away from it.

“but God needed him more”…..I continued to tell myself as I drove to what I knew was going to be an experience so far beyond what words could ever explain, far beyond what my emotions have ever felt before….”but God needed him more”……and I hoped it was true, and I had to believe it was true, because that was the only way I could ever begin to make sense of what I was about to experience.

I walked the halls feeling lost, I wasn’t physically lost, but rather emotionally. I didn’t understand how this could happen to anyone, yet alone someone I loved and called a friend. I mean I knew, I know that this happens, but I suppose it’s one of those things that I, and that we as a society, tend to tuck away, to turn our heads from, not because we don’t know that it happens because we do, but to think about the possibility and the reality of it happening is just well, painful. And so I walked the halls, and I felt lost…..

As I approached the door I took a deep breath, I muttered those words again “but God needed him more”…. I felt a sense of peace and calming wash over me, and I stepped foot into the room. The scene I had prepared myself for was anything but that. I was immediately greeted with an overwhelming sense of love, I knew I was in the right room but my heart did a double take, how could this be the right place, how did these people have so much strength, a kind of strength I was blind to. The room was full, in fact I had never seen a hospital room so full until then. I was hugged and greeted in a way I had yet to ever experience. Strangers that were family to my dear friend embraced me in the way they did their own. And then my eyes found my beautiful friend, and she was radiating beauty in a way I can’t begin to describe to you. The hurt I could only begin to know she was going through, and the pain I could only begin to know she was going through, but yet she radiated beauty.

And then my eyes found baby Drew, I couldn’t see his face but I could see his little body swaddled up in a blanket, with his little blue hat as his auntie cuddled him. “Would you like to hold him?” she asked. Of course I did, how could I not. After all, my sweet friend had given me the title of Auntie Mer so many months ago to this little bundle of joy, how could I pass up an opportunity, my only opportunity ever, to hold him. She placed his tiny self into my arms and my heart melted. Goosebumps covered every inch of my skin, and I felt the hair stand up on my arms. He was beautiful, no he was more than beautiful, he was perfect. “but God needed him more”…I whispered in my head. I rubbed each of his little fingers and toes, my hands gliding over his soft cheeks, his perfect little nose, and those sweet lips. I didn’t want to let go, and I didn’t want to think about the reality that stood behind this moment, the reason that put me in this place after all. I wasn’t supposed to be there that day, my friend wasn’t even supposed to be there that day, it wasn’t time, and yet here we were. And letting go of his sweet fingers and toes, that made it real, and maybe I was being selfish and wanting to feel his sweet skin just a little longer, or maybe I was just in awe that I had even been given the chance to get to love on him.

After I was certain I had loved every inch of little Drew there was to love, I knew it was time to begin what I had been brought there for. I handed baby Drew over to his momma, and I took out my camera, and I got to work. Capturing every image I possibly could. Creating as many memories as I possibly could, so that when it was time for my friend to say goodbye, she would have something to hold on to, something to remember. I took pictures as aunties and uncles, cousins, and friends, near and dear, loved on this sweet boy that was brought into the world that morning. They kissed his little nose, and they held his tiny hands, and it was beautiful. And then it was time for me to meet Dream, his twin sister. We walked down the hall to the NICU, and tucked away in a tiny crib, all bundled up, and sleeping soundly was baby Dream. And she was beautiful, she was sheer joy and perfection, a true miracle right in front of my eyes.

And then probably the most beautiful moment of that evening occurred. Baby dream was unwrapped from her cocoon, unhooked from her tubes and cords, and her sweet twin brother Drew was placed beside her. I held back tears as I watched her reach out to hold his skin, I could feel the peace I knew she felt being reunited with the person she had spent the last seven months with in her mommas belly. But as the peace washed over me, so did the pain, knowing that this moment I had been so lucky to be a part of was likely Dreams last of its kind. I took as many pictures as I possibly could. It was only fifteen minutes of time but it felt like an hour. The nurses helped me position and reposition the babies so that I could get the perfect shots, ones that I could leave with this momma to remember forever. I listened as their sweet grandma sang to them, and I watched as Dream wrapped her fingers around her brothers hand. I hoped that this moment would fill her with enough love to carry her through the rest of her life, that maybe somehow she would be able to remember the peace and comfort of her brothers presence. It was beautiful, and just when I thought it couldn’t get anymore beautiful it did.

We walked the babies down the hall and back to the room where their momma was recovering from all the hard work she had gone through that morning, and we placed her two sweet babies on her chest, and away I went with the camera. Making sure I didn’t miss a single moment, because this moment right here, this moment was the last moment she would have with both of her babies on her chest, and oh my goodness was it the most beautiful moment I have ever been blessed to be a part of.

When it was all said and done and the babies were loved on, and the pictures had been taken, it was time for me to pack my things and head home. After having spent two of the most beautiful hours of my life I gave my hugs and walked back down the hospital halls. My mind full of so many thoughts, but mostly it was just full of peace. A kind of peace my words will never begin to explain to you, and no matter how hard I try, they just won’t happen, because it isn’t possible to string together the right ones.

But I will leave you with this instead:

Somewhere tucked away in some hospital room, there is a mother. Maybe a new mother, or a mother who has been a mother before, but none the less a mother. And after waiting months and months, carrying and learning to love this child she will bring into the world, her heart will be shattered. Her expectations and her realities will not align and match. And she will do the one thing a mother never hopes to do, to outlive her child. And she will grieve, and amidst her grief she will try to remain strong and positive. And she will remind herself of every quote in the world, and she will plead to god, but none of that will help, because she has lost her child. Somewhere there is a mother that will have to pack her hospital room up, and head home without the one thing she came to the hospital for; her baby. Somewhere there is a mother, who may not physically have her child with her today, but she will always be a mother. And how she chooses to wear that honor is entirely up to her. And how she chooses to grieve is entirely up to her. Her title of mother will never go away, even though her baby may have. Her love for her child will never go away, even though her child has.Somewhere on this earth, there is a mother who has lost a child, and she is strong, and beautiful, but tired, and broken, but amazing nonetheless. Today that mother happens to be my friend.

To my friend, and all the other mothers grieving the loss of a child; we see you, we hear your cries, and we are here for you…..

In loving memory of baby Drew, may his short presence and love be strong enough to feel even on the darkest days.

***I am happy to share baby Dream is growing stronger everyday and will hopefully be home soon and reunited with her mommy. I thank my sweet friend for allowing me to be a part of her story, and allowing me to help share it.

Say it Louder, for the People in the Back.

Tonight I watched the Netflix movie “Brain on Fire”, based off the book I read so many years ago as I sat sick in bed.

My eyes don’t cry, but in my head I was on my knees, tears streaming down my face, yelling at the universe.

I watched what felt like a mirror image of a girl I knew way too well, that girl was me five years ago.

The girl was my fifteen year old self in the cardiologist after having spent a month hooked up to a cardiac monitor, and no pattern appearing.

That girl was me sitting in the allergists office, as he told my mother I should seek psychiatric care.

That girl was me after picking glue off my head from countless clean EEG’s, but still seizing on the floor.

That girl was me as a nurse picked me off of the bathroom floor, looked me in the eyes and told me to stop faking it.

THAT GIRL WAS ME.

That girl was me on the bathroom floor praying to God, and screaming to my family to help me.

That girl was me hoping and wishing that somehow maybe I would just die, so I didn’t have to go through it anymore.

That girl was me telling my mother to check me into the hospital because I didn’t want to live anymore.

THAT GIRL WAS ME.

There is only one combination of five words put together in a sentence that bring me to my knees, that hyperventilate me, that cause the sheer flashbacks, and anxiety attacks.

“It’s all in your head.”

Say it louder for the people in the back. Say it louder and make them feel the pain, and heartache, and utter nightmarish hell those five words bring.

Put a face to the story, a name to the people.

I cannot make you feel the nights I spent completely drained from crying, from being so defeated by my own body, and doctors. Simply living in a body fighting against you is draining. Simply trying to survive feels impossible.

To watch something that hits so close to home is so bittersweet. Sweet because it provides the comfort in knowing I wasn’t the only one left behind. Bitter because someone else knows the pain.

I have immense joy in the nurse that pulled my mom aside that night and whispered in her ear, “I shouldn’t be telling you this, but you need to go home and do all the research you can about POTS, I swear that’s what your daughter has.” Because maybe if it wasn’t for that woman I would still be stuck in my bed, and drowning on my bathroom floor.

I have tremendous gratitude for my team of doctors and nurses, that took me in, and ‘found me’ amongst all the broken that was inside of me, that pieced me back together again.

I have the utmost never ending love for my family that went through four years that I am certain were so many times worse than the nightmare I went through. It keeps me up at night, and I know if it does me, then it has to them too.

If you don’t read the book, then I urge you to spend the 90 minutes watching the movie, because as I sit here and type this, the tears I spoke about not having, are finally flowing.

My cheeks are left with tear drops because I don’t have the real words to explain to you how much of this story rings true to not only myself, but SO MANY others.

Say it louder for the people in the back. Make them listen. Make them hear.

If I say anything it is this: I believe in medicine far more strongly than I believe in just about anything. But I have been forced to hear the nightmares, and I know they exist. This is not a wrong doing by medical professionals. This is not a failure on someone’s behalf. This is a doing of the universe, a life that slips through the unfortunate cracks. Medicine does not have all the answers, and it never will. We will never know everything, but we can listen. We can learn the stories of those that have slipped through the cracks, and we can listen, in hopes that someday we might catch someone’s life before it slips.

So say it louder for the people in the back. Scream the stories until they’re heard, and if they don’t listen, scream them louder.

Nobody knows your body better than you.

Let’s be listeners, and let’s be keepers of the knowledge of others stories.

Let’s try our damndest before we ever utter the five worded sentence, that brings me to my knees.

Let’s listen.

Love the Roommate, and the Cats, and the Shower Drains…and Love them Hard.

I turned 20 yesterday, which I think means I’m supposed to put my big girl pants on now.

It’s time for me to adult now, and while I have officially finished living my second day on earth as a twenty year old I think this makes me qualified now to speak on the subject, because you know I’m wiser now of course.

So here’s what I’ve got for you…..

Tonight I spent the night cleaning out a shower drain with my roommate.

but today,

Today for 12 hours throughout my shift at my fire station I wondered about my fellow bothers and sisters that responded to the most recent school shooting, I wondered how they were doing. I thought about how they were coping after having cleaned up the horrific tragedy and selfishness of a cruel act. I wondered if they were okay, if they were going to be okay, even though I knew they weren’t okay, and they weren’t going to be okay.

and then,

Then I got to come home, to my roommate, and we cleaned out a shower drain together, and we played with our cats.

I turned 20 yesterday, and I shouldn’t be thinking about when I’ll have to show up to my nightmare, because it isn’t an “if” at this point anymore, its a when.

2 years ago I sat in a classroom as an eager baby ready to become the lifesaving hero, to live the life I saw on the screens.

Today I sit in the classroom knowing that I’m lucky if I get a couple saves in my entire career. It isn’t like the movies.

My sister asked me on the way home from work today, “do you ever wonder what happens to your patients, how they end up”. I told her of course, there are calls that I won’t forget, that will stay with me forever, but for the most part, no.

No I don’t wonder because then I won’t have time to clean shower drains, and play with my cat.

No I don’t wonder, because then I won’t be able to remember Raegan’s birthday, or her important plans.

And I need to have time to clean shower drains, and play with cats.

And I need to remember Raegan’s birthday, and her important plans.

I went into this 2 years ago not knowing what to expect entirely, but knowing that I was hoping to get something far more important than what I could ever give. I went in looking for healing.

While part of me has healed in a way that I can never truly explain, another part of me has broken, a part that was once whole.

Part of me has broken because I’ve realized that the “breaking news” on the TV every week is more than just something flashing on the screen. That even though it might not have happened in my town, or my city, my people are hurting. People, REAL people are hurting. I turned my head from this two years ago, and maybe some days I still do, days like today. Days when I need to clean shower drains and play with cats, because doing anything else is too much.

This last year has been the best year of my entire life. I might have broken in new ways, but I have healed, and loved in so many more.

The love I have for the existence of life, is one that will continue to endlessly leave me in awe. The sheer concept of life in itself brings enough joy to my soul to keep me content for the rest of my time on earth.

All of that hurt, the anticipation of the when, the broken, it is nothing in comparison to the chance at life.

If I had to break a thousand more times to get to the good, the very very good, I would. I would break over and over if it meant I got to know sheer joy.

And so maybe that’s why my life isn’t just cleaning shower drains, and playing with cats anymore.

Maybe it’s because I’ve found the comfort in not knowing what happens to my patients after I leave them, because I know that someday, eventually I’m going to get the joy, even after all of the broken.

and Maybe I’m able to get up every morning and know that the broken might come today, but that things will go on, because at the end of the day, the shower drains, and my cats, and my roommate will be there, because I get a chance at life.

I’m not sure that 19 taught me anything I din’t already know on the inside, but maybe it just made it a little more obvious.

And for that, for that, I am grateful.

Hold your loved ones close, really close, shout their worth, and don’t ever stop shouting it, even when your voice is gone.

Make sure those in your life, the real ones in your life, know their place in your life, and continue to make it known, even when they don’t doubt it.

Love hard, and love deep, because there aren’t any more chances to love after what we are given, so make them worth it.

But most importantly, don’t give up. Don’t let the broken overshadow the shower drains, and the roommates, and the cats, because they are your sun. The broken might be healing you, but the roommates, and the cats, and the shower drains, they are making it possible for you to heal.

And above all else, love yourself, because you are a rare gem, a special creation, one of a kind, and nobody else will ever get to share what is on your inside.

Cheers to 20……

Mercury is in Retrograde.

“Mercury is in retrograde” said the tattoo artist to his assistant as I sat on his chair waiting for him to put permanent ink on part of my body.

What does that even mean?

“It means that for like three weeks weird shit happens that you just can’t explain. Mercury is in retrograde.”

I felt the chills, as the hair stood up on my arms. Mercury is in retrograde, I thought to myself. Could that be the reason I’ve had so many universe moments lately? Because mercury is in retrograde? Isn’t Mercury like not even a planet anymore?

See these weird things have been happening to me lately that I’ve chalked up to be “universe moments”, the strange occurrences I haven’t allowed myself to think could be the workings of a “god” or spiritual being, so I’ve called them “universe moments”.

At first I thought nothing of it when suddenly almost every patient in a months time had been dying on me. I thought it was that weird “people die in threes” phenomenon just maybe on steroids, and somehow it was happening to me.

I’ve been fortunate in my almost two years as an EMT to not have witnessed/experienced much death. I’m considered a white cloud at work, not much crazy follows me. But lately I’ve found myself comforting patients and family members, one after another, as their loved one has been given a shortened life sentence. I figured it was just a weird coincidence. And then this week I lost my first patient.

It wasn’t what I was used to, me taking family members and their loved one home so they could pass in the comfort of their own peace, (I feel a special honor when I get the privilege of doing this. Even though it’s been an overwhelming amount of these calls lately, I still find pride in getting to help these families home.)

But instead of hugging loved ones and wishing them well, sending my condolences, this week I walked out of the ER and was left with a feeling I’ve yet to feel before. In fact I’m not sure I even know how to describe the feeling because it’s something I’m certain I have yet to experience. It was a certain frustration at the universe I’ve never known. A certain confusion with the universe I’ve never known. It was a certain feeling of helplessness I’ve never known.

And then I found myself 24 hours later in a car with my best friend discussing my feelings on my day prior. I told her about the “universe moments” I’ve become all too familiar with. And then I told her something I’ve yet to really talk about with anyone up until recently.

I told her about the 41’s and how after my friend passed away five years ago all these people that knew and loved him started to see 41’s appear randomly in their lives. (This was his football number.) It became an odd comfort to them in their daily lives, a reminder he was still around in spirit.

I explained that I have a hard time believing in spiritual things after having gone through his loss. I talked about how I felt silly that I was so angry about having not seen a stupid number, and that how it bothered me that in the 5 years he’s been gone I’ve never seen a sign.

This is something that makes me mad at the universe. How was I supposed to have faith that he, and the patient I lost were somewhere better, when I’ve never seen a sign? And then as I moved my hand to the radio in the car to change the music station there it was- a 41 on the screen. Plain as could be. My jaw dropped and I laughed as I wasn’t exactly sure what emotion I should feel inside. Another “universe moment”.

I changed the subject quickly to avoid having to discuss what had just happened. Out of habit I opened up my email and scrolled through the messages. Amongst what seemed like a million spam emails was one from the paramedic program, informing me I had been accepted into the program. I screamed at the universe in my head. “You have got to be kidding me” I thought.

And then a couple hours later I found myself sitting in a tattoo shop in Cleveland. I picked the one with the most stars. I wanted it to be done in Cleveland so it had the sentimental reasons attached to it, because yes I am that person. I found myself in conversation with my new found tattoo artist Jimmy. We were talking about Mercury in Retrograde. And then he asked the breaking bread questions, what brought us here, what are our plans while here, how did we become friends etc. Jane and I explained we met at work and are EMT’s on an ambulance. Then he opened his mouth and said “I’m a paramedic”. And at that moment I’m pretty sure my mind just exploded.

Mercury is in retrograde? Mercury is in retrograde.

I laugh because not too long ago I saw a meme that said something like “my girl said mercury is in Gatorade”. I thought it was hilarious because I knew it was referring to the phrase Mercury is in Retrograde, but what that meant I really had no clue.

I find myself sitting here, it’s the end of the work week which has left me with a handful of time to digest and process all that has happened lately. To try and understand where my feelings and emotions lie. But all I can really come up with at this point is this: Mercury is in Retrograde. I can’t tell you what that means, or how it’s supposed to make you feel, or if it’s even true. But I’m holding on to that because it’s the closest thing I’ve got at this point, the only thing I can find to explain the unexplainable.

Because at the end of the day, I just don’t know. I don’t have the answers. I don’t know why people die in unexpected tragic ways. I don’t know why we can’t save everyone. I don’t know why some people get luckier than others. I don’t know why we don’t all see the signs. I don’t know. I don’t have the answers. I probably never will.

So for now it’s because Mercury is in Retrograde, and maybe after that it will be because it’s the year of the Stink Bug.

I’ll hold on to the things I can find to explain the things I can’t.

Because the explanations are what keep me going. I need a reason to believe it wasn’t all for nothing.

Because Mercury is in Retrograde, and sometimes life sucks, and sometimes it’s really beautiful. “Weird shit happens”.

Thriving.

She dropped everything and agreed without even taking a second to think about it. “Of course I’ll go with you” she said when I asked her to join me on the 5 hour road trip to my annual neurology appointment at the Cleveland Clinic.

We’ve only known each other for a year and a half but she was willing to move everything around in her life to be able to show up for the most important thing in my life.

She didn’t know me six years ago before my life got thrown upside down.

She didn’t know me five and a half years ago when my life got thrown upside down.

She didn’t know me five years ago when I had to learn how to put my life back together again.

And she still dropped everything when I asked her to go with me.

But it didn’t come as a surprise because that’s who Jane is. She’s the most loyal friend I’ve ever had in my life. I can count on her for anything- even driving with me (actually most of the way, she did a majority of the driving) to see the man that continues to change my life. And Jane never complained, but Jane never complains about any of my shenanigans, she supports me. She continued to show up through my good and my bad.

If you’ve been following this blog for a while then you know that every year (used to be 2x a year) I make the journey to the Cleveland Clinic for my annual Neurology appointment. You also know that these appointments are the most stressful things that exist in all of my life’s stressful things. I love seeing my Neurologist, but I dread the many potential things that could lead to so many different potential things. It is a trip that fills me with anxiety. My mom had accompanied me to these appointments for the past five years, however with her new job she recently started she was unable to make it. This is when my Jane stepped in.

We made the most out of the 24 hour round trip. Eating our weight in snacks, getting lost like we always do, pretending to be functional adults in a city we are strangers to, eating our weight in Cajun seafood, and then again with ice cream. We even did something monumental and I got the tattoo I had been daydreaming about for years now (more on that later).

And then we woke up, put our big girl panties on, and we headed off to the appointment. We only missed one turn on the way to the hospital, and we soldiered on as if we were pros. In a weird, but oddly comforting way that’s really all there is to say about the appointment. There was no big life changing news. My body is in the best shape it has been since my accident, but it is still not healed. There was no conversation about the future, because I’m not at that point yet. But there also was no conversation about regression in my healing, because that hasn’t happened either. I’m doing great how I am, my body is maintaining “perfect” orthostatics (Dr. M’s words) but we know that is mainly attributed to the medications. And so we won’t change anything. We will keep on keeping on. And that was it.

We parted with a hug and the instructions to make the journey again in a year.

I caught Dr. M a couple times as he examined my physical abilities mention to Jane that what I was doing, walking heel to heel, was nearly impossible for me to do when he first took me in as a patient. Or how when I reported I hadn’t fainted once since he last saw me, mention to her that it was incredible news, as he shook his head telling her how bad of shape I was in back then.

I cringed on the inside as we sat there in his small exam room listening to him recount my past. A majority of it is just a blur to me now. I remember bits and pieces, but for the most part I’ve forced myself to forget the details- they’re too painful.

This trip was the first trip I’ve made to Cleveland in which I haven’t been a wreck. I didn’t stay up all night analyzing all the different potential outcomes. I didn’t cry, I didn’t have an overwhelming life moment, I didn’t worry.

This trip was the first trip I’ve made to Cleveland in which I felt positive about my body’s health. POTS is not who I am anymore, or no longer defines me, it’s just there, it’s on the side. I have merged into the healing stages, my body isn’t fighting anymore to survive, it’s healing. The healing could take a few more years, maybe more, but you know, I’m okay with that.

I’m not merely surviving anymore, I’m thriving.

I have wonderful people in my life, people that will drop anything to support me. I have two great jobs that continue to provide me with learning opportunities, and ways to test my abilities and skills. And as of yesterday I have a seat in the Paramedic program for next fall, the hurdle I’ve been striving towards the last two years. And I have a body that is healing. This friends is far more than merely surviving.