So Much Has Changed

So Much Has Changed

It’s not that I don’t care about you. It’s not that I don’t remember all the moments we shared together. It’s not that I cloak my confidence in worry and stress.

I learned to live without you. For years, my friend was out of reach and there was nothing either of us could do to change the past. I don’t blame you. Actually, I am grateful that you don’t blame me. But we both know we have to walk forward and figure out where things stand here and now, not reminisce in where things used to be.

My heart skipped the first time I saw you after a couple years of basically silence – worse than silence. I didn’t know what to expect. I honestly prepared myself mentally to be hit by a tsunami of the past. I was ready to feel the pain. But it never was like I thought it would go down.

You actually apologized for the year of torture. You apologized and took it upon yourself to apologize for how tormented I was. And, that itself, meant a lot more to me than the others could possibly know. I couldn’t thank you enough. Despite, I was silent that day.

Now, it’s been a while since we both walked back into each other’s lives. But, really, I still don’t know where you stand with me. I still can’t give you an answer to that question you had asked. “You meant a lot to me, maybe you still do. Maybe you don’t at all, or somewhere in between. I don’t know…” I had told you that first night. I didn’t expect you to have an answer either. But the discomfort in this unknown makes me ponder.

I see you standing there, as a person I used to want to share the world with. But we can’t deny how much things have changed, how much we have changed as individuals.

I see you standing there, but I can’t disregard everything else I have going on. The chance and need of losing the house I’ve called ‘home’ for the past eight years. The stress and worry my parents are going through, and trying to hide from me. The sickness in health I deal with on the daily, and the distress the pain my dad goes through each and every day. The campus I’m about to leave, and the one I’m about to enter. The nervousness and the excitement in “starting over”. So forth.

It’s not that I don’t care about you anymore. It’s not that I don’t wish you the best. It’s not that I don’t want to share life with you and have you in my life still.

It’s that neither of us know where we stand, and neither of us have much more room on our plates to spend too much time figuring it out.

I apologized for how preoccupied I am. I apologized for how much I’ve changed. But I refuse to apologize for how much I’ve grown during the past couple years without you here.

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To The Men and Women Out There

To The Men and Women Out There

To the men who think they’re Superman. To the women who think they’re a miracle drug. To the people who think they, not only have but, are all the answers to every problem that exists. To the people who think their touch could save someone’s life in a spilt second. To the people who believe they are the unstoppable healer of all time. To the people who believe just their presence in someone’s life is enough to turn black to white.

WAKE UP!

To a man who just walked into my life.

WAKE UP! ….also, fuck you.

My team of a dozen specialists are struggling to find a cure for my condition and yet you have the nerve to walk into my life and say you have all the answers from “back in the old time”. Do you know what it’s like living a “normal” life only thanks to the little handfuls of drugs you take on the daily? Do you know what it’s like trying to breathe through the chronic pain that leaves you breathless each time it strikes? Oh, and by the way, it strikes every second of every minute of every day that I breathe. Do you know what it’s like being more comfortable in a hospital than in your own bedroom because there is actually people there who can administer harder drugs to knock you out instead of struggling to breathe? No? Let me tell you then.

You walk around like a normal person, sort of. You know for a fact that people do notice how pale you get somedays and how sick you seem on others. You feel immense gratitude for those who take their time to take care of you; the small “are you okay”s during their busy days; the “I think you should sit down”s when you are overwhelmed by side effects that you could faint; the strong arms that hold you when you know your insides are breaking apart. But at the same time, you feel this guilt weighing down your heart; you don’t want to be a charity case that they think they can rewrite their sins with; you hate seeing pity in their eyes, masked around their worry, because a part of you thinks they wouldn’t be so caring if there wasn’t anything wrong with you. It’s constantly a battle between needing people to watch out for you (since you could faint any second of the day) and knowing you deserve better than some friendships that are more fake than unicorns.

Your life consists of constant visits to your team of multiple specialists who are constantly doing a guess-and-check kind of procedure with your health (and I don’t blame them; it’s just exhausting). Sometimes you get more excited to see that specialist you really get along with than your friends who love you so much. Some people don’t know what a CT scan is but you know that negative fluid is what makes you go through multiple needles because the nurses keep missing your veins or your vein keeps bursting open. Some people think breathing tests are the easiest test you can get but you know those tests are what leaves your breathless, lightheaded, and feeling like you’re going to faint. Some people laugh because “stress tests” sound a little funky but you know you’d rather have your vein burst ten times than go through that hell day.

You feel this guilt sinking in your stomach constantly because you can’t imagine how hard it is for your parents to see you go through everything that you do, because though you have your good days you also have really bad times where you can’t shut up about freaking out about another health problem that showed its face, because you know your friends are sick of hearing about your next surgery or procedure. You know people have their problems and you should be grateful that you are even alive and breathing but it’s difficult when years of buried panic boils to the surface and seeps through the mask you constantly wore to fight these battles.

You are constantly proud of yourself for doing well on a really bad day or even show up when your body almost can’t move. But you also want to scream your head off when you hit yet another glass ceiling every time your doctors say they don’t know what else to do that could potentially help. You know you should probably go to therapy for all the emotions you trap under your skin but live in a family where mental health isn’t a thing. You cry yourself to sleep feeling more helpless than ever but always having to act like everything’s okay.

You feel like a badass when you tell new close friends your story. You feel invincible when they tell you they couldn’t even imagine what your life is like. You feel proud of yourself when your mentor is stunned to learn about your health and tells you he is so proud of how well you’re doing. You feel safe when you know you can always lean on your best friends for support, every now and then. You feel like a badass when you look back at your past and realize how much you’ve survived.

Let me stop there. I know this seems like a rant since emotions are all over the place – one minute it’s pride and courage you feel and the next it’s the fear and guilt pulling you down. But, honest, that’s how life is like. You know it’s kind of like when you first get a crush on someone and get the butterflies in your stomach, that immense nervousness mixed with joy and panic. Then you start getting their attention and the questions start roaming your mind about whether you should make a move or whether they are feeling the same way. When you start getting closer to them and they’re everything you could imagine and more, it’s like those feelings you get of flying through the clouds and sudden fear of falling all mixed into one unbreakable jewel. It’s like what people describe as an off-and-on relationship with the love of your life – the immense emotions of joy, and fear, and nervousness, and excitement, all twirling around in the hurricane of questions, doubts, what-if’s, and opportunities, along with the ticking time bomb you constantly hear in the back of your heart. It’s a mess, to say the least.

And, don’t get me wrong, I get that everyone’s life feels like a mess at times and everyone has their problems to deal with. I get that there are people who have it harder than me. I get that a lot of you will never understand because breathing is something you take for granted. I get it.

But nothing gives you the right to come into my life and claim you have the answers to every problem I’ve ever had. You don’t know me. You don’t know what I’ve been through. You don’t know what I’m going through. You don’t know. And you definitely don’t have the answers so, to be short and simple, YOU ARE NOT MY ANSWER. I dare you to spend a week in my shoes and see if you can handle the things I go through. I’d love to have you wake up and realize what it does to me when you come around and say you’re the miracle drug that could save my life. But, honestly, I wouldn’t wish my life upon you even if you were a monster. You deserve better.

I might not know what ‘war’ feels like, but it definitely feels like I’m constantly at war with my own body. Except I’m always the team trying to simply survive rather than fight.

Provoke

New Year, New Workout

New Year, New Workout

It had been before I was in middle school that I had been begging my mom to let me take martial arts classes. Learning karate looked awesome on TV, why wouldn’t a child want to learn how to fight? I grew up watching Vietnamese/Chinese movies based on martial arts. I loved Jackie Chan (the Rush Hour series? Twin Dragons?); he was the best! What did my parents expect? As a child, I wanted to learn how to be as badass as the characters I watched in the movies.

Unfortunately, the topic always got rejected when I was younger. We didn’t have the means for the cost. And, as a child who always had problems being active, my parents were scared of me getting hurt. Ultimately, the answer was always ‘no’.

In high school, a couple of my friends were black belts in either one or multiple martial arts. I remember learning how to correctly make a fist, so I wouldn’t hurt my thumb. I slowly learned how to punch and keep my wrist straight. Most days, I would stay back for half an hour after school and “spar” with one of my black belt friends (who always just humored me, and watched out for me so I wouldn’t hurt myself on the concrete). It was a lot of fun. Even though it was a merely for laughs, I enjoyed myself. I remember when he accidentally tripped me and I fell so hard straight onto my back, everyone yelled at him (laughing, of course). I remember getting Everlast wraps during my senior year, which simply collected dust in my closet. I remember having a lot of fun.

Now, in my second year of college, my interest in martial arts sticks. I went to my first taekwondo/karate class with my sister and a family friend (you could call her). The family friend is a second degree black belt and knew this dojo very well. We went to our first class for free, to see if we liked the class enough to sign up. The master was very welcoming and very friendly. I was learning how to kick correctly when he came over and put his hand in front of me so I had a target; I kept kicking too low. I eventually kicked his hand, a little too hard, too! He looked over at my family friend and jokingly yelled, “Stacy, you brought dangerous people!” Everyone laughed. Next time we went over kicks, he brought out a mat/shield (I don’t know what they’re called) that would block my kicks and punches so he wouldn’t get hurt. It was such an entertaining as well as demanding class! I was sore for two days afterwards!

Just the other day, I went to my first kickboxing class at ilovekickboxing with my sister and her boyfriend. I was very nervous for my first day on the mat. Not only did I have a tight schedule that day with class and work, and work and kickboxing overlapping a little, but I know I am terribly out of shape. I arrived right on time to the kickboxing class and went in to get paperwork filled out. One of the leaders, who lead warm ups, handed me my gloves and I borrowed some wraps from my sister. The warm up reminded me of PE in middle school, except WORSE! It was just jogging around the mat, but push ups and sit ups and burpees and lunges and squats and planks and “spiderman climbs” and everything else you could think of all mixed together. I had to take so many breaks to drink water or else I probably would have had a completely dry mouth at the end of warm ups. THEN, CAME THE FUN PART. I learned how to punch with my gloves and do roundhouse kicks. I was so excited that I could finally go all out and punch my hardest and kick my hardest without much worry of hurting anyone! I was having so much fun that I wanted to get a punching bag when I got home that night! I barely took into account how much my arms felt like jello. I can’t wait to go back! Good thing I paid for two more classes already.

I know I’ve had my difficulties with being active and “in-shape” but being able to go out there and be active has been a lot of fun. Not only has it been a stress reliever but it makes me feel a lot healthier. I really hope my schedule continues to allow me to do things like this.

If anyone has any workout tips, let me know!

Will It Fix Me?

Will It Fix Me?

I’ve gone through two open heart surgeries. I’ve gone through two surgeries to repair my chest wall – pectus excavatum repair. I’ve gone through a cardiac catheterization. I’ve done all the labs for my surgeries. I’ve gone through countless x-rays, CT scans, MRIs, echos, stress-tests, etc. I’ve done it all.

I’ve ran until I was blacking out, almost fainting. I remember the stress tests I had to do when I was younger. I remember vividly how nauseous I would be the day before. I remember dreading the sight of that treadmill. I remember running until I couldn’t breathe. I remember barely being able to walk to the chair a few steps away. I remember blacking in and out.

I’ve worn a cardiac monitor multiple times for various periods of time. I’ve had some bad cases of nausea, dizziness, lightheadedness, and migraines. I’ve had trouble breathing. I’ve taken handfuls of medication.

I’ve woken up scared to move because my chest hurt so much. I’ve fallen down unable to get up because it hurt so bad. I’ve done pain blocking injections. I’ve been to physical therapy. I’ve had multiple pain management specialists. I’ve dealt with the side effects of multiple medications, testing out to see which one actually helped. I’ve discovered that it may be impossible to make the pain go away. I’ve learned that I have nerve damage…and it can’t be fixed.

Why am I so terrified when it comes to this new procedure I need to go do? Worst case scenario, I stay in the hospital for a few days and go back to school in a wheelchair a week or two after.

Make It Go Away

Make It Go Away

She walks through her life with long strides, a little more confident than in her mind. She takes deep breathes and goes after what she wants, ignoring the pain or the fear she feels inside. She doesn’t know where her decisions will take her but she realizes she does not have the choice to hesitate to make up her mind. She continues through her life and faces everything that comes into her path but fears she will never truly have the answers she is looking for.

Almost every breath is getting harder to breathe. She feels her heart struggle and race as she walks just a little faster paced. The pain in her chest remains everyday despite the amount of medication she consumes on a daily basis. The symptoms continue and cause her to struggle throughout her days. The dizziness, the nausea, the headaches, the difficult breathing, the lightheadedness and the seconds of blacking out all drain every ounce of energy she seems to have left.

She doesn’t know who to turn to. Her doctors have done countless tests, sent her to many other doctors, and have found nothing that could be a solution to her pain. One of her doctors even said one day, “It’s permanent…I can ease the pain when it gets really bad but I can’t make it go away.” And that was before, when it was just the nerve pain, and now it’s her heart…again. She doesn’t know what to do. She doesn’t know who to go to.

If the pain would one day go away, if the symptoms would just one day vanish, if she could wake up one day and feel one hundred percent better, she would be living the dream. But that day isn’t going to come until the doctors find something else to do.

Panacea

Day In, Day Out

Day In, Day Out

“You might need surgery again.” He said for the second time after taking maybe an hour listening to my history. This was the first time I met with my new cardiologist; he had no current tests; he hadn’t done any CT scans, MRIs, ultrasounds, etc. on me. Maybe that’s the part that scared me the most.

At thirteen-year-olds, I underwent my third surgery to help my breathing situation. At eighteen-years-old, I was greeted with the line, “Wow you have a large medical history for your age!” the first time seeing a new pain management specialist versus the normal “Hi, my name is…” Now, at nineteen-years-old, I had not thought the mention or surgery would phase me but it sure did.

I remember the last time I got the news that I needed to schedule my next surgery. I hadn’t understood why tears were forming in my eyes. I hadn’t understood why it felt as if my heart was breaking as I watched my mother melt into tears and breakdown. I remember only panicking because she was. In my mind, it wasn’t a huge deal that I was going through surgery for the third time. But, that day that I saw my cardiologist, it was the mirror opposite of years ago.

One night, I just broke into tears and cried until I fell asleep, exhausted from weeping. I had wanted someone close to me to just hold me and tell me everything was going to be okay. One evening, I was briefly mentioning the doctor appointment to a friend and couldn’t stop the tears from forming in my eyes. One night, I fought back the tears as much as I could as a close friend stood by my side but the second someone came and asked if I was ok, I broke.

Day after day, the daily tasks of life seem petty in comparison to the thoughts that continue to run through my mind. But, what did I expect, this has always been my life…

Expect

Permanent.

Permanent.

It’s been over a year since I first felt a knife plunge into my chest that first night, or that’s how it felt anyway. I remember jumping onto my bed late at night after a wonderful. I laid on my back and smiled goofily at the ceiling about something. When I turned to grab my phone to reply to a friend, the pain I felt sent me gasping for air. I immediately curled into a ball and clutched at my side, the world around me becoming nothing but darkness and pain. I’ve been through open heart surgery, and yet I have never experienced that much pain before. That night, that moment, is when everything started.

After such an overbearing amount of pain, I continued to experience stabs at my chest through my days. At first, it would happen every couple weeks but, after some time, the pain became a constant reminder that I will never be the same. After no longer than three months, it stopped feeling as if someone would randomly sneak up on me and stab my chest but it started feeling as if someone was standing in front of me holding the knife in my chest twisting it and turning it so the pain never ceased. It was torture.

It’s been over a year since the pain became a constant factor of my everyday life. It came to the point where the symptoms of such pain no longer surprises me. I could say I’m used to it by now, but I know better than to think it is right just because it’s “normal” to me. A kid who gets beaten by his dad every week could look you in the eye and say he’s used to it, but that doesn’t make the pain go away…and it definitely does not make it okay.

For a year my team of specialists worked at finding a source of all this pain I was feeling, still nothing. For a year they ran tests and authorizes x-rays and all types of scans, still nothing. For a year I drank a handful of different medications each day in hopes of making the pain go away, still nothing.

Two weeks ago, I had one of my specialists try a kind of injection that would help my pain. It helped. For once, something helps significantly after my pain had worsen to a degree I could not bare. There was finally a huge amount of hope that my team of specialists could make the pain go away. I finally could look my father in his eyes and tell him everything was going to be alright and mean it because my doctors were going to fix me, again.

Today, I go in to see one of my specialists to get an update and see what I could do next to make the percentage of relief significantly larger and permanent. But, today, I was told my pain is permanent. There’s no way to make it completely vanish; there’s no way to give me permanent relief; there’s no way to get me back to “normal”.

I felt my world blacken into nothing but emptiness and pain once more as I did that first night. I physically felt the hope I had slowly drain out of my system and get replaced with sorrow and despair. I couldn’t believe my ears. Right when there had been such a high chance of me getting a regular life back, it was ripped into shreds right before my eyes.

And, here, I ask this:

What would you do? If you knew the nausea that made you skip meals for two whole days at a time, the dizziness that sent you walking into walls and falling down stairs, the episodes of blacking out that caused you to hit your head and potentially send you into a fatal car accident, the handful of pills you had to take every morning and night, and the everlasting pain in your chest…was permanent.