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.

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“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.

Tikkun Olam

“Tikkun Olam. It means that the world is broken and that it’s our job to put it back together again.”

I’ve seen more death this week than I have in my entire life.

Unintended death.

Intended death.

Unexplainable death.

But still at the end of the day, death.

When I was little a picture was painted in my head of a god that loves everyone, that forgives us of our sins, and welcomes us back into his arms when it’s our time to go. I was told of a place that took away all pain and suffering, and replaced it with eternal happiness. I was told of a place that washed me of my sins.

But what even are sins anymore? And what makes one persons worse than the other?

What if the person that robbed the bank was doing so because their children at home were starving?

What if the girl that lashed out came from an abusive home and knew no different?

What if the alcoholic that caused the car crash was merely drinking as the only coping mechanism left after losing everyone he ever loved?

So how are we supposed to know who gets to go where, whether we evened out our bad with our good. Wether we get the golden ticket or not.

I don’t believe in the picture that was painted in my head as a little girl, because I’m not the little girl anymore.

I am not naive to the awful in this world, but I am also not blind to the greatness in this world.

I do believe though that from the time we are born to the time we die, we are given an unknown number of days on earth, and what we choose to do with those days is entirely up to us.

I know that whether I like it or not, society will continue on for quite some time after I’m gone. Time does not stop, once my time stops.

So I’m going to believe in Tikkun Olam. I’m going to try to help as best as I can to put the broken back together.

How I’m going to do that I’m not entirely sure, but if it finds me in the back of my ambulance with someone on the verge of death then I’m going to do my best.

This week challenged my strength in more ways than I thought possible. Emotionally I’m feeling slightly numb. Slightly drained of my normal overflowing pot of comfort I usually have to give. But I feel comfort in knowing where it all went.

So when I found myself in the one, two, three, four, five different occasions of death this week it was okay. Because I was doing my best at piecing the broken back together, in the best ways I know how.

I don’t sing, I’ve told you this before, but yet I still continue to find myself in the back of my ambulance using my best singing voice I can muster up as I hold my patients hand and we sing together their favorite songs.

I don’t usually hug people, I’m not much of a hugger, or really a touchy person in general, but yet I found myself hugging my patients loved ones, as their tears left tiny spots on my shoulders.

I don’t pray, but when she said “I’ll pray for you Merideth”, before I even realized it I told her back “I’ll be praying for you too”.

This world stretches me thin some days, and when I don’t think I can manage to put anymore pieces back together they still continue to find me.

I know I will never know why I was put here, but I also know I am going to do my best damn job to piece together as many of the pieces that make their way into my life.

Healing isn’t my job, but helping is, and I will always be there to help, until I can’t possibly help anymore.

Tikkun Olam.

“We can do hard things.”

“It’s a new me!” “Newer than the ‘new you’ you talked about six months?” “Yep, an even newer new, the newest of new.” That indeed was the conversation I just had in my head with myself.

Yes, I still have conversations in my head with myself.

You see the thing is I very much am still adjusting to life outside of being the sick kid, and  I think more so now than I really ever have. I’m learning and adjusting to focusing on my emotional wellbeing now that I don’t have to spend all that time focusing on the wellbeing of my health. With that comes adjusting my attitude, and my personality, and my thoughts, as well as emotions in general that come with the craziness that is life. I’m learning and adjusting to focusing on my physical wellbeing outside of just merely trying to survive. That means working to keep my body in its best shape, and learning to eat things that are going to better my health instead of the latter.

The last month I’ve been rather negligent to those around me, I’ve distanced myself so that I could in turn give myself the best opportunity to really truly focus on me. This has resulted in more conversations with myself than I could begin to articulate to you.

I’m not saying that in a months time I’ve completely changed and evolved all the impact the last five years has had on me, but I’ve started to. “This is a marathon, not a sprint” who knew those words Dr. M spoke to me five years ago would ring true in so many different ways.

I beat myself up time and time again over the fact that I still to this day struggle with things as a result of my accident. I feel guilty for allowing it to interfere with my daily life. Saying that I have PTSD from it seems wrong, how could I have PTSD from something like a cheerleading accident? How can my daily life still be altered from something that took all of 60 seconds to happen?

But the truth is that’s just life, and life is hard. And as Glennon Doyle Melton, one of my favorite humans ever says, “We can do hard things.” And it’s true. Who am I to judge myself for how I am feeling. I find myself telling those around me all the time in their times of trouble that “Whatever you are feeling right now is okay, no emotion you feel whether it’s sad, mad, angry, happy, upset, none of those are invalid. Your feeling whatever they may be are valid.” so then why am I over here stabbing steak knives and into my head and legos under my feet for feeling things? Maybe because I’m still learning how to feel things again after telling myself I couldn’t feel things for so long?

So yes, I told myself it was a new me, and I vowed and promised myself to a few things, as part of the new me:

  • To FIND something that I enjoy doing, and to make it a priority to do it, for myself, and not for anyone else. (I wanted this to be something meaningful, and gaining my strength back is something I have longed for, for a while now. I knew that by doing this for myself it would in turn not only make me feel better about myself, but provide me with time to myself, for myself. I’ve started going to Pure Barre, I try to go every day that I don’t work, and it has been one of the best decisions of my life. I chose this over just vowing to go to a gym because I knew I would feel lost in a gym, the motivation wouldn’t be as strong, and I likely would lose the determination. With Pure Barre I’ve become encouraged by those around me in the environment, the class is structured so I know I am benefitting my body, and I simply enjoy it so I know it keeps me motivated to go.)
  • To FOCUS on eating healthier. (I by no means meant this as going on a diet with intentions to lose weight. I am not at an unhealthy weight currently, however I do often feel hat what I have been putting into my body has made me feel more sluggish, and overall just bleh. I knew that some drastic vegan or paleo eating style was not something that would work with my lifestyle, nor is it something I am really interested in. I decided that making this commitment would mean trying to cut down on drinking things like soda and energy drinks, and instead replacing it with more water. That instead of turning to picking food up for dinner or lunch I would make a greater effort to cook more meals at home. This is a little change type of thing for me. I’m not drastically changing my eating habits, I’m just bettering and adjusting them along the way, in tiny ways. 
  • To LISTEN to my emotions, and to put them as a top priority. (I have a very big habit of going out of my way whenever I can, for whoever I can. This is just my personality, and I know it is not a bad quality to have but it often leaves me feeling emotionally drained, and empty. I decided that I need to be better at listening to myself, and what I need for me emotionally, not what others need from me emotionally. This has caused me some conflict with myself because it at times makes me feel a little selfish, but I am learning to better understand that in order to be the best to those around me in my life, I need to at first be my best. This means taking a step back in situations and thinking them through, deciding what will truly be the best decision for me, instead of rushing into something because it seems like the right thing to do.)

 

Find, Focus, and Listen. These are my goals. I know it’s okay to have bumps in the road along the way of reaching our goals, and I know this isn’t a “snap your fingers” and it happens situation either. I also know I have plenty of more goals I want to accomplish in may life, but that in order to achieve each one to it’s best potential I need to take the baby steps, and to be patient, instead of just jumping right in full force like I tend to do.

“We can do hard things.”

But then…..

I blame him for the fact that I suck at feelings.

I want to scream at him every time I mess something up in my life that’s related to feelings, because I blame him.

I don’t trust the way I used to before him.

He changed everything in my life, and I know he probably didn’t even think twice or consider the fact that he was creating a snowball of a problem in my life.

I know he didn’t think about me.

Because if he did he would have understood just how much he was going to mess up.

I do not find light in him being gone.

I do not find peace in him being gone.

I do not find comfort in him being gone.

My soul is not at rest at the end of the day knowing he is gone.

My soul is ripped in pieces at the end of the day because of his absence.

I do not see out of rose colored glasses.

I cannot see out of rose colored glasses.

I do not see how anyone can see out of rose colored glasses.

Maybe they just haven’t experienced the soul ripping.

I over exert myself in every friendship/relationship I have ever had because of him.

I spend half my paychecks on pointless things for people who have done nothing for me because I fear that they too might disappear.

I over invest myself in every conversation I have ever had because of him.

I don’t shut my mouth and I speak over others because I need to be certain that it is obvious that I am still here, and that I haven’t disappeared.

The truth is Matthew altered every aspect of my future the day he ended his, and everyday since then has been altered.

The truth is I hate more than anything that people can feel helpless, hopeless, and unhappy in this world.

The truth is I feel this way sometimes too though.

The truth is that I spend my life worrying so much that others are content and fulfilled in theirs that it is eating me alive in mine.

The truth, the real actual truth, is that none of this is relatively easy.

This year is 5 years out from the time a permanent decision was made to a temporary problem, and I will forever be scarred by it.

I wish I could say that I understood what compelled him, and all the others, but I don’t.

I sometimes think about the topic, the outcome, should I have made such a decision.

But then I smell the air after it rains.

But then I feel the warmth of the sun after a long winter.

But then I remember the chirping of birds.

But then I remember the sound of thunderstorm.

But then I remember life.

LIFE.

And then I don’t think about it anymore.

And then I don’t desire for it to be over anymore.

And then I don’t wish for an end.

I wish for an eternity.

I wish for a lifetime, and then some.

I wish for every living soul to remember too.

I do not find comfort in his decisions, I find anxiety, restlessness, exhaustion.

I find pure let down.

I blame him for the fact that I suck at feeling because he took them from me and replaced them with overwhelming worry.

I blame him but I am trying not to because there are thunderstorms, and chirping birds, and warm sunshine’s, and crisp air.

And I get all of these things.

All of these gifts are entitled to me.

And suddenly I don’t even think about it anymore. Suddenly I am content, suddenly I can feel.

And it FEELS good.

Sometimes I get Attached…..

One of the first things they told me was to not get attached….

Your care ends after you walk out the doors, your job is done……

You can’t get attached…

and I don’t….most of the time…..

but sometimes I have to….

I NEED to.

I need to get attached so that I can remember why.

I need to get attached so that I don’t forget the feeling.

I need to get attached so that I can keep going.

I need to get attached because I need to remember that it wasn’t all for nothing.

See the thing is my job might be to care and provide for patients, but at the end of the day they’re providing to me.

In a weird emotional way it’s like every time I get the chance to care for someone the giant gaping hole in my heart from all the chaos being sick has caused me heals just a little more.

I’m not sure the hole will ever entirely be full again but I know that everyday I get to care for patients, a day farther out from being the patient, the hole fills a little more.

I remember my first hospice patient, and the month after that in which I checked the local obituaries every day wondering if they had passed away.

I remember the first child I said goodbye to, as I tucked them into their bed, whispered in their ear and brushed their hair out of their eyes. I hugged the mother knowing that I was the last medical professional she would see until her child passed away and I stood there until she was ready to let go.

A lot of the memories aren’t happy, in fact most of them are painful. It’s not a career full of glitter and balloons. It’s a rare day that we hear the ending to the story. We are there when it starts, when its happening, but how it ends, we usually never know. For us, it stops at the automatic doors leading back out to the ambulance bay, because we aren’t supposed to get attached.

The truth is talking for half an hour with an elderly patient about our pet cats isn’t just a distraction to them, it’s an assurance that I, me, MYSELF can be the someone, in that moment that someone needs. It’s the reminder that I am capable.

The truth is making stuffed animals talk and growl while dancing through the hallways before the patient goes in for radiation isn’t just to make them laugh. It’s the reminder to me that amidst all their chaos they still have a little bit of their childhood left. That they won’t be scarred forever, their holes will fill too.

The truth is explaining to parents that their child who wants to harm themselves, gets better and that this world is cruel and harsh and difficult for growing teens isn’t just to reassure them, it’s to remind me that Matthew’s pain was temporary, and that these kids that didn’t make a permanent decision to a temporary problem could have been him too.

The truth is that as much as I am there for them, I am also there for me too.

As much as I wake up each day and go to work with the mindset of helping others, I also go to work with the mindset of helping myself.

I find healing, in partaking in healing others.

I find comfort in comforting others.

I find strength in strengthening others.

I am who I am now, with the mindset I have now because of them.

So I have to get attached sometimes….

I HAVE to.

I refuse to be the robot like medical professional that provides care in a uniform way to every patient, every time. Who forms no bond with the patient, who shows no emotion.

I have to get attached, and I have to show emotion.

If those that cared for me didn’t show me the same attachment I have now I wouldn’t be here with this job. In fact I would be as far away from it as I possibly could. There’s some days I left offices and clinics and wanted to never face another medical professional.

But I refuse to be that way. I refuse to make others run anywhere but towards my care.

So sometimes I get attached, because I’m human, and it’s a human thing to do, but also because I need to.

Because it keeps me going.