One of my goals for myself this year was to learn how to be quiet. I have a need to fill the silence with anything. Music, my voice, TV, anything that can cut the silence. The silence was always uncomfortable for me. It made the thoughts in my head that I was trying to ignore oh so loud. My anxiety would take over. With this constant need to fill the void that I felt silence created, I missed out on so much.
So, I decided that I would slow down and accept silence. I would practice the art of being quiet. I started being quite more when around my family. Not because I didn’t want to talk to them, but because I wanted to really hear them. You’d be surprised what you can learn about someone when you sit in silence with them. Or when you shut up and actually listen to someone other than yourself talk.
I didn’t explain this goal to anyone. I decided it was something I was doing for myself, and it was better left unsaid. When I got back from my trip to Hawaii with my sister’s family, she asked my mom if I had fun because I was quiet. This broke my heart a little. My sister thought I didn’t have fun because I was actually quiet for a change 🤦🏻♀️. I was so quiet because I wanted to be genuinely in these moments with them. I tried to soak in every little detail. The experience, the scenery (which will leave you speechless anyway), and all those little moments with them that I’ll never get again. I was quiet and present. I loved every second of that trip with them, but my seemingly sudden behavior change had my sister confused.
This year has been the perfect year to start the practice of being quiet. As we all know, this year has been a shit show. All of the unknown, drastic changes to normal everyday life, and forced quality time with your loved ones, known as quarantine, I honed my ability to be silent. I’ve finally mastered the art of comfortable silence. I no longer feel a need to fill a void.
This morning I wasn’t able to fall back asleep after being woken up. Most mornings, it’s easy for me to slip back into slumber, but today not so much. I laid in bed. The only noises were coming from my fan and Eleanor with her labored breathing. Staring at my ceiling, I was overwhelmed by the stillness. The stillness I tend to miss because even when being quiet, I’m usually moving or active in some way. I eventually moved myself out to my back patio. Sitting here now, I’ve listened to birds and neighbors awaken. I’ve watched the sun slowly creep into the sky. I’ve heard Eleanor and Herschey hunt for lizards. I’ve felt the air go from crisp and slightly cool to humid and warm. I soaked in all of this because I woke up with the weight of the world on my shoulders. I was lying in bed this morning, and the shock of yesterday had finally disappeared. My indifference was gone and an overwhelming heaviness was sitting in my chest. I felt the need to sit in silence and observe. I feel the need to be quiet more than ever now. The need to soak in every second of the next 5 1/2 weeks.
Virginia Woolf once said, “If you do not tell the truth about yourself, you cannot tell it about other people.” When I write, that is what I try to do. I try to tell my truth. I try to make sure that when I tell my story, I try to be unapologetically truthful. I talk about things we all try to keep hidden, anxiety, depression, mental health awareness, etc.. I try not to be redundant in my writing, and I try my hardest to be relatable. To let others know that they’re not alone. We all have heavy stuff we carry.
My life has been filled with heaviness. Heaviness that I have a hard time sharing with others. Heaviness that eats away at me. Writing has been my way to lift some of that weight. To be able to talk about it. To be able to grow as a person. The last couple of weeks have been profoundly heavy on me.
The saying when times get tough, you find out who your friends are, is true. Over the past few years, I’ve let go of people who showed me they were only surface friends. In the last six weeks, I’ve learned a few more hard lessons with friends. People whom I would’ve bent over backward for proved themselves not to do the same. I’m aware that we’re all at ages now where we are adults and have our own busy lives, but part of being an adult and a friend is knowing when to be there for someone else. Those of you that have been there that have genuinely cared to know the real answer to “how are you” and those of you that have shown up; I can not thank you enough. You’ve helped me open my eyes to who is more than a surface friend. I’m finally at peace with my circle becoming smaller.
The last six weeks weren’t just about opening my eyes with my relationships in my life. There was a great deal of reflection about my life. I’ve repeatedly been told my options are limited and I’m complicated. I’ve come to have a love-hate relationship with this complexity. I love that everything about me is complex. I’m a light, bubbly person, but once you get to know me, you see that there is much more beneath all of that. As my best friend, Madison, told me last night, “there’s so much concealed under your outgoing, upbeat personality.” She’s not wrong and what she said sat with me all night. I love the complexity of my being in that sense but hate it in the medical sense. Being complicated in the medical world is not a hidden beauty. It’s messy, and no one wants to be messy. It’s caused me to be filled with fear. I live every day with fear. Fear of the unknown because the unknown in this situation usually points to death.
People are always saying things about how quickly life can change and how we need to live in the moment. How often do you find someone doing that? I feel as if we only think about life that way when something terrible happens. In the last few weeks, I’ve repeatedly told myself that if it doesn’t bring me happiness or serve me in a positive manner that I need to cut it out. But we rarely take our own advice, do we? It wasn’t until I spent a Tuesday morning with my friend Lilly that it all came full circle. Everyone needs a Lilly in their life, and for those of you that know her, aren’t we lucky. She has provided me with an endless amount of entertainment, a safe space, and a love like no other. Sometimes we view things differently, and one of us has to adjust our outlook to overcome the disconnect, and that, my friends, is a healthy friendship. So, we’re sitting on her couch on a Tuesday afternoon after having a good morning. I’m getting ready to leave for a doctor’s appointment, and she can visibly see the fear on my face. For some reason, just to have her acknowledge that she can not begin to comprehend my fear, but has genuinely tried to, as well as how much she sits with it because she loves me, was precisely what I needed to hear. I felt seen at that moment. I had someone look me in the eye and hold back their pain to tell me that they didn’t understand mine, but they tried to, and she wasn’t going to give me advice but that she supported me in whatever choice I made. This was exactly what I had needed at that moment, and Lilly tends to always deliver in those moments of need. I found myself reflecting on our conversation the whole way to Pensacola, reflecting on how I needed to take my own advice, how I needed to remove things that no longer positively serve me. I need to do what makes me happy and stop caring if others understand what that looks like because I have people other than my family, like Lilly and Madison, who will always support me. I have friends that are genuine.
So now I’m at another turning point in my life. I’m lying in a hospital starting a new medication that has the potential to help me or severely cause damage. I’m discussing possibly having another surgery. With all of this unknown and all of the potential life-changing things that can happen, I’m trying to remind myself that I need to take my own advice. I’m no longer going to sit at tables where I might be the topic of discussion when I get up. I’m going to stop caring about what my happiness looks like to others. I’m going to continue sharing my truth even if others don’t understand why. I’m going to try to continue to share my heaviness and make sure others know they’re not alone. I’m going to try and live unapologetically.
Recently I’ve been asked to describe myself to others. Or to tell someone about myself. I never know how to answer this question appropriately. I don’t think someone wants to hear how I would describe myself or how I see myself. I don’t think it would come out in a socially acceptable way. I’d much prefer to hear how others see me. So I thought about it long and hard. This is how I see myself.
Last night while driving with my windows down the hot, humid air on my skin, and The head and Hearts- Rivers and Roads turned up, I felt overwhelmed. That kind of overwhelmed that makes tears silently fall down your cheeks. Something triggered an emotion that was just under the surface and was needing to be released. There it was a few simple tears while singing the words that were making the emotion show itself. This happens to me a lot. It is situations like this that made me realize that I was a little different.
I always knew I was a little different, and I knew at a young age. Not the kind of difference where I don’t have friends and was socially awkward. The type of difference where I didn’t fully relate to others. I have always had what has been described as an old soul or sad eyes or a sense of sadness about me. Many different people, from family to strangers, have told me this. “It’s that tortured soul that makes you artsy” or “You can tell you suffered trauma, and you carry it.” Doesn’t everyone suffer some kind of trauma? I mean, hell, no one has perfect parents or a perfect life. Isn’t that what makes us human? I know I am a little damaged. I was born damaged, and I do carry the weight of that with me. I have experienced emotional trauma because I’ve allowed myself to be vulnerable. And the older I get and reflect on myself, the more I grow and find myself, the more I realize that maybe there is a sadness to me.
Maybe I’ve always known it, and that’s why I’ve felt different. Perhaps that’s why I talk too much. I talk to distract so it isn’t as noticeable or I’m too boisterous so you can’t see that it’s there. Because being different wasn’t something I was okay with, and I’ve always cared what people thought of me. I have overcompensated my whole life just to please others. The more I grow, the more I am embracing this part of me.
I like sad books, movies, and songs. Especially the songs. I’m a lyrics person. When I can relate to a song, it’s because I can tell that the person who wrote has the same sense of sadness to them too. Hell, I’m the person that cries when I hear a song that moves me—case in point, last night. I can recognize this sadness in art. In paintings, sculptures, and photographs. I like stories that are real and raw. That don’t have the perfect ending. It creates a beautiful kind of sadness. I would describe it as an air of melancholy. Maybe I have it because I am such an empathetic person. Or it’s the trauma. Or it’s that I have an old soul. Or perhaps it is because I am meant to show it to others, in the hope that it moves them.
I’m the kind of person that finds solace in little things. Like when I’m feeling sorrowful I want to go outside and stare at the stars and moon. Or go to a library or bookstore and get lost in the stories. Or drive with the windows down and a song filled with emotion turned up. Or go to the beach and become engulfed by the water. I want to feel everything in those moments.
I’m also the kind of person that is full of contradictions. I want to be fiercely independent but have someone that will take care of me when warranted. I like to be alone but feel lonely. I am creative and lazy at the same time. I want to feel everything and, at times, nothing because it’s so overwhelming. I want someone to see me truly but I have walls I’m not sure anyone can handle. I am afraid I’m a disappointment to others, yet I demand respect and hold myself accountable. I’m all over the map, and I know it. I know that I’m different and sorrowful. I’m empathetic and constantly overwhelmed by emotions. But how do you tell a stranger that? That’s never the things they want to hear. They want you to list off your accomplishments or generic descriptions about yourself. They don’t want to hear, “I like sad music and have an annoying laugh.” Y’all my cackle is out of control, and I know it. Earlier my friend told me my laugh was angelic, and I thought, “yeah, okay, for sounding like a demon is cackling.” I’m sorry if you’ve ever heard it.
How does one describe themselves in a light that doesn’t reflect that they’re their own worst critic? The guilt we feel for our failures and moments of harshness. Or the insecurities we have with ourselves. If we only focused on the good things, we’d come off as conceded. I can’t appropriately describe myself with accomplishments and generic descriptions. I’m full of failures and depth.
I always thought that airports would play a much larger role in my life than they have, much like I did when it came to the Bermuda Triangle. Was anyone else overly concerned about the Bermuda Triangle around the age of 7 or 8? I was terrified I’d fly over it or go on a cruise and BOOM disappear. Why aren’t we still concerned with that? I digress, my point is that when I was younger I thought that airports and airplanes would be a huge thing in my life.
Who can blame me though, right? We watch movies and television shows where in the airport there are pivotal moments. Tearful goodbyes, declarations of love, and huge over the top reunions. We read in books about how sitting on the plane there was this moment of clarity, some great life altering moment where everything clicks and all the fear or doubt fades away. Then there is this whole aspect of travel. How travel changes your being and your outlook and how it is immensely important that one travels in life.
The closest thing I’ve had to a life altering moment on a plane was when I was “that person”. I had recently ended my relationship and been working nonstop. I was flying late at night, after working a close then double and then open shift, and I was on my way to Tampa to be with my Aunt while she had an ICD placed. I was overly exhausted and experiencing emotional overload. Well fast forward to my point. There I was traveling alone and I decided to watch a movie on the plane. I watched Table 19. It’s a good romantic life lesson type of movie. It had its happy, funny, shocking and sad moments. Well there was a moment when the couple it was focused on had this emotional fight turned reunion. In that moment I realized that my weak hope of my ex ever “coming around” to being an adult was null and void. I wept. I balled my freaking eyes out. I cried for feeling like I had wasted the last 4 years of my life and for being naive enough to think that movie actually would be something that happened in real life. Y’all, the poor teenage girls sitting next to me thought I was a psycho. Other than sitting next to a screaming child or a Bonnie Raitt fan that “toured with her” and gave me a lifetime of meaningless knowledge about Bonnie Raitt, absolutely nothing profound has happened to me on an airplane. I’ve never been in a life saving experience, like Greys anatomy, or realized that I was deeply in love with some like Rachel in friends. I mean she got off the freaking plane for Ross. Instead my time on planes have been meh. I’m typically reading or busy watching my friend Jes sleep with her mouth open 🤣. Love you Jes!
I’ve never had a tearful heart wrenching goodbye or a beautiful run and jump into one another’s arms kind of reunion in an airport. Instead I’ve been that girl who didn’t have a napkin and licked chocolate off of her phone screen while waiting to board the plane. I really have no shame, that’s kind of endearing right? In September I purposely chose to fly home hours later than my friends. One it was cheaper and I’m a cheap ass. Two I thought a little quiet time after a bachelorette weekend would be nice. And three I hoped I would have some life altering moment. Instead I sat looking out the window at the runway contemplating my life. I sat there and cried silently over my medical saga and my current state of affairs. The only significant thing that happened that day was I realized airports, air planes and air travel had not lived up to the hype. I also didn’t throw up from my hangover so it was a semi successful day.
I haven’t traveled nearly as much as I’ve envisioned for myself. I had big plans to see the world and to keep my mind open to new experiences, different cultures, and all the things that I could learn from. I’ve traveled more than others, yes, but not near as much as one should. The world is a scary and beautiful place with the knowledge that can help everyone find what they’re searching for in life. I’ve been far too boring this past decade and have not explored enough. Maybe it’s because I am overly excited about my upcoming trip to Hawaii or because I recently watched Julia Roberts in Eat Pray Love, but that wanderlust that’s ingrained in my soul is yearning to be unleashed. Maybe my goal for my 30th year should be to just say, “Screw it, let’s do this” and cross off some of these places on my must-see list. Maybe then I will have one of those climactic moments on a plane or in an airport. Something to live up to the hype I developed in my childhood. Maybe I’ll be like Kate Hudson in Almost Famous. That realization on the plane that changes everything and sets in motion bigger things leading to that window seat to Morocco. (If you don’t understand the almost famous reference we can’t be friends, I’m sorry.) Anything has to be better than sitting on the tarmac for 3 hours learning about Bonnie Raitt…right?!
I’ve been in my own world lately. A world filled with doctors visits, medical testing, sleep deprivation, and anxiety. I’ve been working extremely hard at not letting myself spiral down a deep dark hole of depression. When I say working extremely hard I mean doing everything humanly possible to keep myself from completely shutting everyone out and becoming 300 pounds while binge watching everything I can stream on my TV. I haven’t been the most hands on version of myself when it comes to my relationships. I have not been the most attentive friend, sister, daughter or granddaughter. The balance between keeping myself from being consumed by my anxiety and being present is a tiresome battle.
For the last several months I’ve traveled to New Orleans, Nashville and Pensacola to see doctor after doctor. Trying to find some rhyme or reason to why my heart and oxygen seem to do whatever they want. For 13 months I’ve been dealing with trying to get a handle on my tachycardia and all that comes with it. I have requested referrals to see specialist. I have tirelessly fought to find a solution. Recently I discovered my oxygen levels like to dip down a little too low. Hence my recent photos with a nasal cannula or an oxygen pack strapped across me. Also you can notice my increasingly dark circles under my eyes. All of this has been consuming. Wholly consuming. Mind, body and soul. It’s taken EVERYTHING in me to maintain my sense of humor and to keep my head above water.
I constantly feel like I’m treading water. I have days where getting out of bed seems like the hardest thing I’ve ever done. I have days when making my bed is my biggest accomplishment. Most nights I toss and turn, stare at the ceiling, and mull over every possible scenario that the doctors could throw at me. I’ll be in a room of people and not be present. I get lost in my thoughts at times while having a conversation with someone I won’t have heard a word they said. I get tired of talking about it and feel like everyone is tired of hearing about it all. Mainly because I never have answers. I keep having to ask off of work for appointment after appointment. I’m afraid to ask off for a mental health day and I’m needing those more increasingly. Even when I am at work it’s hard to stay on task, my mind is always elsewhere.
For those of you that follow me on social media and see all of my self care posts it’s because I am struggling. It’s because I need to be reminded that depression and anxiety are normal. That I need to be told from time to time that it’s perfectly okay to not be okay. So I post it to remind myself and because I know that someone else might need to be reminded that they’re not the only one going through it.
Last time I wrote I had just been called a “ticking time bomb” by a doctor. I then waited days to hear from a team of doctors that they all agreed. That I was too complex of a case for them. I was consumed with anger and frustration. My mood has since turned into one of worry, fear, and doubt. My weight is fluctuating. I’m stressing so much my skin is breaking out. Some days I stare into the mirror and think, “what if this doctor can not do anything? What if I have only two extreme options? One that results in more side effects and ailments. Or one that could result in paralysis and relying solely on a battery to make my heart function?” What do I do then? Do I risk the extreme? Do I continue to fight and be “brave” or do I let go? Give up and live life like I am in fact a time bomb?” Do I do that whole “live life to the fullest” thing that we all say we will do? Live with no regrets. Stop waiting for my life to happen after I get well and just accept that at any moment my heart could stop beating. That my defibrillator could go off and revive me until one day it can’t. Do I risk it and fight or do I live my life until I succumb to ventricular fibrillation? Hence my aloofness as of late.
These questions are debilitating. They weigh heavy on my mind, my soul and my physical body. My sisters recently joked about why I take such long showers. They said I was contemplating life in the shower and well, they are right. I get lost in the hot water and steam. I imagine scenario after scenario and how I will handle them. But now I am doing that all the time not just in the shower. I’m fighting for answers and fighting depression. I constantly get told by friends and acquaintances how they admire my strength and grit. But I feel like such a fraud when complemented by them because I feel anything but strong. I put up a great facade of humor and strength, but I’m struggling to not cry constantly. Every time someone asks about my appointments, asks how I am doing, or every time a stranger stares at me toting around my oxygen. I needed to break my facade and show everyone that I am indeed struggling. I am fighting for my life right now. A life I want to live and I live that I have been greatly blessed in. I have a very dysfunctional family that I wouldn’t trade for the world. They’re my biggest support system and despite not always seeing eye to eye, they have NEVER let me be alone in anything I do. I’ve also managed to be blessed on the friend front. I have somehow managed to find some of the most amazing individuals who support and understand me. They check on me regularly and love me endlessly. I haven’t been the best or greatest friend lately and ultimately I know everyone will understand and accept it. Depression and anxiety are a hell of a beast.
The whole purpose of this post is to let others know that the taboo of discussing your depression and anxiety is not okay. Tell someone what you’re going through. Don’t put up a facade. I can not reiterate enough that it is OKAY TO NOT BE OKAY!!! Go to counseling and don’t be ashamed of it. When someone asks “are you okay” say no. This post was not for attention but for help. I want my words and my story to be read by someone who also has days where getting out of bed seems like the hardest thing they’ve ever had to do. I want them to know that being open and honest about struggling is perfectly normal. I want my story and my words to help. I want people to know what I am actually feeling and going through. That social norms and expectations set by society and social media are not how we have to live life. That it’s okay to feel sad and to try to get help for that. That by taking care of yourself you will let others down and you don’t owe anyone an explanation when that happens. For those of you that sometimes feel like giving up, don’t. Keep pushing. Keep trying. Find your meaning. Your soul satisfying moments and relish those. Keep fighting that deep dark spiral that is depression even when you feel like you can’t. Take mental health days and don’t feel guilty. Cry in the shower or on the bathroom floor. Feel it and learn to let it go. Continue to move forward even if it’s at the pace of the tortoise not the hare.
Sitting here waiting on my parents to arrive for dinner, I was actually on time for once, and I find myself thinking…”Holy shit! You’re about to be 29!” Where did my twenties go? This panic has set in a few times over the past 5 months.
Where did my twenties go? Why did I think I had all this time to accomplish things? Why am I so unsatisfied with where I am at in life right now? Did I even do anything meaningful in my twenties? Questions like these have been plaguing me and leading to what I can only assume is an existential crisis. Quarter life crises are played out. I’m taking this one to a whole nother level.
Existential crisis is also known as that moment when one questions if their life has meaning, purpose or value. I’d say mine definitely started brewing after my brush with death in November. I started thinking about what if I wouldn’t have been lucky enough to have my defibrillator? Would my short time on earth have made a difference? Have I made a difference to anyone other than those genetically programmed to love me? With these circumstances and 30 looming around the corner, I find myself pondering the deeper questions in life.
Recently I had someone ask me what the one thing I wanted from life was and I did not even have to think about it before responding. I want to make a difference. I couldn’t figure out exactly how to communicate it at the time, it was late and there had been drinks involved, but after thinking about that conversation I now know how to convey exactly what I meant. I want to make a difference, not in the sense of changing the world, but in helping others. I hope that my kindness, vulnerability, empathy and hopefully my words can make a difference to someone. To help them in their journey through life.
How do I go about doing that? How do I figure out what I want to do in this life that will help me achieve my goal in life? I thought it was Nursing. To be a good nurse, the kind of nurse that makes being in the hospital bearable. My health made it clear that that wasn’t it and now here I sit almost 29 feeling a little lost. Do I continue to write and eventually write a novel? Do I work to eventually open my own book and record store, since books and music are things that changed my life? Do I work for a charity like the American Heart Association? Do I move or do I stay in my comfort zone? How do I figure out the answers?
In January I had someone recommend the book 30 before 30. As I have slowly read this over the past few weeks I have been all over the map. I have related to the author, been inspired by the author and been envious of the author. She writes about how she made a mess of her twenties and accomplished all these small goals she set for herself. While reading this book in public I get unsolicited advice from strangers like, “Don’t worry your twenties are for figuring things out.” First of all, this isn’t a self-help book and what exactly are we figuring out in our twenties? Did I do my twenties right? Did I make a big enough mess? Did I accomplish enough? Does anyone else feel this way?
I spent my twenties in serious relationships and having heart surgery. Reflecting on my twenties I guess I can say I have realized just how strong I am. I was put through emotional and physical hell with 5 separate heart surgeries, all differing in severity, and I overcame every obstacle thrown my way. I never gave up and I continue to fight to be the healthiest version of myself. I don’t accept the answer “no” from my doctors. I loved with all my heart and in two completely different ways, two people. I learned to let go and how to take time to heal from hurt. I learned to be careful with who I trust and what I won’t put up with. I learned that sometimes the tough decision is the right decision. I learned what a broken heart feels like and how cold the bathroom floor is at 3AM when you’re sobbing and wondering why someone doesn’t love you. Most importantly, I have learned how to forgive and grow from disappointment.
I have all these questions heavy on my mind and heart as I approach my golden birthday and I have the typical late twenty-something shit going on too. Will I be forever alone? Is there anyone worthwhile to date? Do I have too much baggage? Why am I dissatisfied with my job? Do you ever feel like an adult? Being single at 29 was definitely not where I thought I would be when I celebrated my 20th birthday with my new boyfriend. My ability to self-sabotage relationships at this point in my life is uncanny. I seem to either put my foot in my mouth or retreat into my shell (there is your turtle joke, Alexandra!) and become too nervous to be myself, to text or call first, or to innitiate anything. Navigating your late twenties trying to figure out when you’re supposed to feel like an adult and how to act like one blows. I feel stuck in a transitional state. Every decision I make has so much weight to it now.
All of this being said, or written out… whatever, it has made me decide to develop my own list of 30 before 30 goals. Some big, some small and some that may seem silly to others, but they’re my goals. My goals to make sure I successfully make a mess of my twenties and figure things out. In the last year of my twenties I’ll be bolder. I’ll fight my fear and text or call first. I’ll live a little more, unapologetically. I want to be able to go into my 30’s and know that I made the most of my twenties. Take this last year by the horns and “figure things out.” Maybe answer the question of what can I do to make a difference? It may seem like a silly goal to some, maybe naive or make me seem like a dreamer, but I don’t think that being a good person who wants to help others is a silly dream.
Since people relate to and like photos. Here are some photos of some of my birthday celebrations through out my twenties for your viewing pleasure…enjoy
February is American heart month. For some that may not be important, but for me it is HUGE. While every month is essentially heart month for me, February is the month that brings attention to cardiovascular disease for everyone else. It is only appropriate that February was chosen for heart month with Valentine’s day being the day you’re supposed to profess your love and hearts desires for others(insert eye roll here). There are hearts, everywhere. So, why is February so important? Did you know that heart disease is the leading cause of death for men and women in the United States? Every year, 1 in 4 deaths are caused by heart disease and most of the time the first symptom is the heart attack. Did you also know that heart defects are the most common type of structural birth defect and occur in 1 out of every 125 births? Congenital heart defects are classified into 35 different types…35! Out of these 35 types, there are different variations and they all differ in severity. Heart disease is a BIG deal and commonly overlooked in one’s everyday life.
This month I acknowledge, with much appreciation, the fact that I was born with a congenital heart defect and that I live my life daily, battling the side effects of heart disease. I was 6 weeks old when my parents heard my pediatrician say, “Uh oh” whilst listening to my heart. I can not begin to imagine what that moment must have felt like as a parent nor will I ever know. When I was diagnosed with an atrial septal defect and an abnormal pulmonary valve the outlook on life with congenital heart defects was much grimmer than it is today. There was not a large number of adults living with congenital heart defects and today the community for adults living with CHD is growing! This is exciting because it means we all got a chance to fight, a chance to live longer and that medical advances have helped each and every one of us. But what about the side effects?
When you’re having your second heart surgery, first open heart, just 3 days before your 4th birthday, all anyone focuses on is getting you through the surgery. I don’t remember much from this experience. Mainly trivial things because at 4 that was all I understood. Dealing with doctors and being in the hospital was a normal thing for me. I remember making everyone laugh because I couldn’t get my bed situated just right. I kept demanding ” A little bit up! A little bit down!” I remember I had a few meltdowns over panties and socks not fitting right. I remember being poked and prodded all hours of the night and how much I hated it. I would scream and cry. I remember the playroom in the hospital and loading the car up to go home. I believe I got a gift from every nurse in that unit. We had a car full of toys and stuffed animals. What my parents and family remember are the risks. The gravity of the situation. They asked the questions, they sat around waiting for hours, they dealt with a child who didn’t quite understand what was happening. They dealt with the insurance and financials. I did what I had to do, I had surgery and I healed.
Things were great after my repair of my ASD and my valve being reconstructed. I flashed my scar to strangers because I was proud of it. As I got older I realized that probably wasn’t the best idea(Sorry fellas no more dress lifting). I grew up knowing I was different, despite not feeling different, and knowing I had limitations. I grew up with a scar right down the middle of my chest and the insecurities that came with it. Growing up with a special heart was normal for me. It wasn’t until middle school that it started bothering me again. I had yearly appointments with my cardiologist for check-ups. I would have an EKG and echo, I always requested to watch space jam during my echos because if you have the opportunity to watch space jam you do it. I looked forward to the visits for that reason. My heart never felt weird or abnormal to me, but 7th grade it started to. The only way I could semi-accurately describe it was as if my heart had butterflies and not my stomach. While I was a boy crazy teenager I definitely wasn’t in love and having butterflies of the heart. I went to the ER, wore Holter monitors like crazy, and went to my cardiologist multiple times. We could not figure out what was going on and as quickly as it started it stopped.
Fast forward to my junior year of high school and my heart starts acting crazy again. I wore a heart monitor the majority of my junior year. I am not exaggerating. I wore one long enough that I had permanent red circles on my skin. My skin was thin and raw in those spots. It took MONTHS for my chest and abdomen to look normal again. Not to mention those old school monitors sounded like something out of a sci-movie when recording and transmitting over a landline phone. It was a nice excuse to step out of class whenever I wanted, I didn’t want to distract the class or draw attention to myself. I don’t like drawing attention to myself, as hard as that is to believe. Wearing the monitors for a total of 6 months, yep half a year, paid off. We finally were able to see that I was having premature ventricular contractions as well as runs of tachycardia and ventricular tachycardia. Here is what I learned from that diagnosis. 1) Those are electrical issues in the heart. 2) There is no easy fix for them. 3) They were caused by my heart being cut into previously. And 4) this meant surgery. So I did what I had to do. I had an ablation the beginning of my senior year of high school. Nothing like ringing in the new school year with heart surgery. I was lucky this time because it wasn’t an open heart. It was a procedure done through my femoral artery and I would be out of the hospital the next day. I went to Jacksonville and had my surgery. If you don’t already know, you will soon realize, if it can go wrong it will when it comes to me. This surgery did not go as planned. It was a LONG procedure and they had to tape my arms above my head. You know how if you lay on your arm for too long it goes to sleep? Well, imagine having your arms taped above your head for over 6 hours. My arms were like noodles and all I could feel were pins and needles. It was pretty funny for my family and boyfriend at the time. I kept knocking things over and hitting myself in the face, but that is not all that went wrong. When you have an ablation you can not stitch an artery. You have to lay flat and let it clot on its own. Well, I woke up as they were removing my breathing tube. I felt them pull it out of my throat and mouth. This caused me to gag. I then proceeded to lift my head, turn to the side and vomit. Well, I continued to vomit while they moved me from the operating table to the recovery bed. Causing my artery to start bleeding and a nurse to hesitate and move my leg. I passed out. Maybe it was the drugs making me fall back asleep or the loss of blood, I don’t know. I woke up to nurses applying the pressure of their full body weight to my groin and sandbags on my groin. I had to stay in the hospital longer, I was bruised from mid-thigh into my abdomen, and this made my recovery even harder.
The surgery worked, for a while. I tried different medications after surgery to no avail. They made me feel worse and lowered my heart rate. The procedure did show us that my QT interval was slightly longer than normal, but it was dismissed as not a big issue, this will come into play later. From the age of 17 to 19, my life was as normal as could be. I graduated high school, started college, experienced young love, and got my heart broken. My heart hurt in a normal way for the first time. I moved away from home because I got my heart broken and it felt like the end of the world. After moving back home, I realized I moved for the wrong reasons (never move over a boy, ladies), I began to feel off again. The butterflies came back and brought lightheadedness with them. I went to my annual cardiology appointment and relayed my symptoms. An echo, EKG and stress test later, I found out I was complicated. Who knew? I had to try more medicines and again no luck. Some of them I had to stay in the hospital for 4-5 days to be monitored because my heart rate would drop alarmingly low. These hospital stays are when I became an expert on how to hook up an EKG machine. I repeatedly had to hook it up to myself when I felt anything cardiac related. After medicines failed we resorted to another cardiac ablation. It all happened quickly. On a Friday in May, we scheduled me for surgery on Monday. My sister, Devon, drove me over to Pensacola that Monday morning and cracked jokes about how I was fasting and she wanted to stop to get breakfast. I got her back by trying to hook her up with the Nurse Anesthetist assisting on my surgery. Fair, right? This procedure was not successful and I ended up throwing up once again. Resulting in me staying in the hospital longer with sandbags on my groin. Knowing this procedure didn’t go as we hoped for we started to explore my options and I was referred to a specialist in Boston to have a cryo-ablation.
8 months later in January, I flew to Boston. The day we arrived they had their first snow. The Patriots won the playoffs and were headed to the Superbowl, imagine that. The next day I was prepped for surgery. An old lady came into my pre-op area with a lady bic razor and shaving cream. Y’all, they sent this poor old woman to shave my bikini region. I don’t know who was mortified more, her or me. Needless to say, I did not need her assistance. My mom and dad were brought back and I told them about this and we had a nice laugh. I was given my sedative because I have to have one before surgeries to avoid panic attacks. According to my mom, once it hit me, my feet fell to the side, my flip flops fell off and I yanked my glasses off all the while saying, “Oh that’s good!” My surgery was semi-successful. I learned that some of my problem areas are on the outside of my heart and my pericardium was stuck to the outside of my heart. Therefore making it physically impossible to reach the areas without causing more harm. Not the best of news, but also not the most discouraging. Before my surgery, I told the doctors about my history of throwing up so we prepared for it this time. All was well and I was in the recovery bed in the elevator going to my room…then it happened. Once again I threw up and lifted my head whilst doing so. I arrived in the CCU with a hell of an entrance. My parents and grandma got pushed out of the way, nurses rushed to me, and I was being rebandaged and then came the sandbags. While I was at Brigham and Women’s in Boston I met with a cardiologist who consulted with mine at home about some things they had discovered.
One cardiac MRI, multiple phone conferences, and lots of deliberating later we realized it was time to replace my pulmonary valve. After consulting with my parents we decided we would aim for October of 2012 so we could get through the busy season, for everyone at work, and then focus on open heart surgery #2. Well, October was a great goal for a date, but we didn’t make it that far. Everything happened what seemed like overnight. I woke up one day and realized I was exhausted. Getting out of bed and making myself do anything was taxing. I was short of breath walking from my bedroom to the kitchen. I got in with my cardiologist for him to tell me that this is what happens, “One second you’re fine and the next you’re not” and the executive decision was made that in a month I would be back in Boston having open heart surgery. My sister swept me away to St Augustine for memorial day weekend as a sister trip before surgery. 3 Weeks later I am back in Boston 6 days before my 22nd birthday. I did get to attend a Braves vs Red Sox game at Fenway the day before my surgery and it was AMAZING! The morning of the surgery I stood in the shower and cried while I scrubbed my entire body with a special loofah and soap. I got dressed in my comfy clothes and put on a brave face. I knew more this go around. I was having my chest cracked open, my lungs rolled up, and my heart would be in someone else’s hands. I knew the risks and I knew the statistics. I was terrified which made me antsy and ill-tempered. I tried to focus on the book I was reading and not discuss my impending doom while waiting. When it was finally my turn, I was starving, nervous, terrified and asked for a sedative. They gave me propofol, which I knew was what Michael Jackson overdosed on, so once it hit I proceeded to sing thriller and dance by myself while being wheeled to the OR. At least I am entertaining.
I don’t have much memory from the first day after my valve replacement. The surgery was successful and long. I woke up a few times while in the ICU. The first time my hands were restrained so I wouldn’t pull any tubes or wires. The second time I woke up and they were removing my chest tubes, I felt the pain of the first one being pulled, the morphine had not kicked in yet. Then I woke up when they moved me into a regular room. I did not throw up until I attempted to eat a few days after surgery. My hunger got the best of me and I ordered far too much and too rich food. Throwing up when your chest is super glued together is not fun. Don’t recommend it. I was hunched over like Quasimodo, too afraid to straighten up my back, and I was in extreme pain. My first shower was difficult, as well as my first walk around the floor. I had minor difficulties after getting released. While watching Magic Mike with my Aunt and mom, I noticed my breathing was labored and it was not because of Channing Tatum. We ended up in the ER on the 4th of July with my lung partially collapsing. Once I got back home to Florida I went in for my checkup with my cardiologist and got admitted to the hospital with pneumonia. Other than that I healed and recovered fantastically. Things were great for 2 years. I had felt better than I have EVER felt. I did not realize how tired I was until I wasn’t. I could breath better, I had more energy, and I no longer slept for 10-12 hours a night. I experienced heartbreak again and let my heart hurt in normal ways. I found new love and experienced butterflies in healthier ways. I was finally living with no worries again.
Then the fainting spells and lightheadedness started. My heart would feel as if it was going to beat out of my chest, my head would feel like a hot air balloon, the sound would disappear, and everything would go white. I couldn’t breathe and couldn’t make it stop. It would happen whenever it wanted. I had no control, not that anyone has control over their health. I was scared, angry, and confused. After becoming a frequent flyer at the ER and many heart monitors later my doctors decided on another ablation. So July of 2015 I had another ablation. Things went well and I did not throw up!!! I did, however, get up too early. The nurses told me it was okay and I could go to the bathroom on my own. So, I wanted to be independent and walk myself from the bed to the bathroom. As I was walking I felt warmth running down my leg. I half-jokingly yelled out to my mom, boyfriend, and nurse that I was either bleeding or peeing myself. I couldn’t move my gaze down or I would topple over, so once I sat on the toilet I noticed all the blood. I panicked at started crying and yelling out. Everyone panicked. The next thing I know I had a nurse applying pressure to my groin while I finished peeing. That was awkward and mortifying. I swear these surgeries are filled with more terribly awkward moments for me than you would think. I was swiftly carried from the bathroom to the bed where I had 3 nurses rebandaging my leg, cleaning the blood off me and changing my gown. I was legit buck-naked in front of, easily, 6 people. It’s a good thing my dignity went out the window years ago. I went home the next day and recovered quickly. Two weeks after surgery I was required to wear another 30-day heart monitor. This heart monitor saved my life.
Day 30, 6 weeks after my surgery, I was leaving work and walking to my car when it hit me like a ton of bricks. Rapid heart rate, no sound, everything went white and I couldn’t breathe. I pressed the button on the monitor, leaned into my car, and slid down the side of it onto the concrete. I came to and felt fine. I got in my car and proceeded to drive home. On my way home the people from the monitor company called me to check on me and tell me they were contacting my doctor. I got home and ordered a pizza and made a bowl of cereal. I did not get to take a bite of the cereal. My phone rang with my doctor on the other end. We finally caught it. I was experiencing deadly rhythms of the heart. My heart wasn’t beating. It was fluttering. I rushed to the hospital in Destin and was escorted via ambulance to Pensacola. I was in the hospital for 3 days then I had my ICD placed. I had a foreign object permanently implanted in my body. It is noticeable, it changed my life, and I hated it. It was painful and the mental recovery worse than any other surgery. I eventually got used to it and life got back to normal. Once again experienced heartbreak unlike any other before and forgot about my arrhythmias. I was finally doing better and feeling better. 3 years after being implanted it charged and fired up. Once again my life was saved. Now I won’t go into extreme detail since I have previously written blogs regarding getting shocked, but this shock is leading me to face another difficult path of living with heart disease.
I finally faced my diagnosis of Long QT syndrome. There is no cure for it, at this time. Just last week I did my genetic testing to determine which specific form of it I have. There are 16 different types of LQTS and they all are a cause of a different gene mutation. Not only is this happening but I am having to deal with side effects from my aortic stenosis. In the last week, I have had 3 veins blown while having labs drawn, been to 3 different hospitals and had an echocardiogram done. I am trying to patiently wait for my results, but I am beginning to feel that level of tiredness, I once felt before, creep in. Sleep is all I think about. I am constantly short of breath and any exertion makes it worse. My arrhythmia and lightheaded spells are increasing despite taking medication. It came on suddenly and now I am stuck in limbo waiting for answers. I am once again not in control of my body and it BLOWS!
I am telling you about my long cardiac history because it is February. I am shedding light on what people living with congenital heart defects, congestive heart failure, and heart disease in general deal with daily. Not everyone has as an extensive history as I do. Not everyone is as complicated as me, but heart disease is common. You could have subtle signs and genetic markers. Go to the doctor and have a cardiac panel performed. Have a stress test, an EKG, or an echo done. Stay ahead of the game. Have it done once a year… Have it done in February. Take it from someone who has been cracked open, you don’t want to be the one on that operating table. Here is to cardiac awareness and to American heart month!