Note: Kinda sorta a memoir piece. At least some parts from this will end up in the final draft of my book, which is why I put it here instead of in the blog.
Nearly every day, I wrestle with self-loathing and deep-rooted resentment towards myself and the circumstances I was born into. I compare myself to others, knowing damn well that doing so will never do anything good, except for make me even more upset and pissed about things way out of my (or anyone else’s) control.
The only person I should be comparing myself to is...well… myself. After all, I have changed drastically for the better over the past months and years. It’s literally empirical (thanks to my medical charts), and the people around me have taken notice of how much I’ve grown, matured, and gained confidence, especially as I transition from childhood to adulthood. I’ve conquered numerous fears and phobias, done my best to take care of my body and keep myself alive, improvised and adapted to every challenge that came my way, done (and am doing) things I didn’t think were ever possible just a few short years ago.
Yet, for a slew of (mostly really stupid) reasons, my heart hasn’t been able to accept any of these personal accomplishments as anything to celebrate. After all, most people in America finish high school, learn how to drive, go to college, and so much more. It’s just expected of people in this society. What’s the big deal? What’s worth celebrating.
Of course, people point out the very obvious fact that I am not at all “normal”. I’ve been told that, given my circumstances and the hand I was dealt at birth, statistically speaking, I should be dead. Or, at the very, very least, very sick and hospitalized. Therefore, I ought to be much kinder to myself, and simply relax for once. Revel in the fact that I have plenty of time to chill out and simply be a much less tenacious and anxious version of myself. While most people think they’re being helpful in some way by pointing these things out to me, they’re anything but.
These days, I try my best to take advantage of my physical health and just live like everyone else! Nobody, except for the people who must know about it, is aware of my conditions in college. I seem to be hiding my physical symptoms and anxiety well, as I’m a little more than halfway through the semester, and nobody’s caught wind of my conditions. After all, I make it a point in life to hide my problems from everyone else. I make it a point to pretend to be what society deems “normal”. In some ways, I always have tried to hide my issues to make myself less of a target of bullying and pity. But, unlike ever before, I can now actually hide my physical symptoms, as they are largely not an issue anymore.
When people close to me point out all that I’ve been through, and all that I’ve suffered from, that most people in the western world will never deal with, it physically hurts me; like the sound of nails on a chalkboard or someone blaring an airhorn directly into my ear. It’s not the compliment or “wake up call” people seem to think it is. It’s just enraging for me. There have been times where I’ve been unable to hold back my anger, and have lashed out at those who have told me such things.
Most people haven’t pointed out my conditions like that out of malice. Most people who tell me my CF or Pulmonary Atresia have legitimately held me back for no fault of my own, are just trying to get me to stop being hard on myself. Yet, my heart refuses to accept the fact that I was, and still am, disabled and unable to do some things “normal” people can.
Having an invisible condition (or multiple invisible conditions), is kind of a curse in this way. Whenever I catch a glimpse of myself in the mirror while I’m out-and-about, I just see another average woman staring back at me. Yet, I know, damn well, that I am not all that average. My body still bears physical scars of my past. My internal organs are still very much deformed due to all of the shit my body’s dealt with since I was in the womb. I still have my moments where I simply don’t feel all that well, and my “mask” still slips off around others every now and then, momentarily revealing the real me.
Thankfully, most people seem to pass that off as me having a cold, or me waking up on the wrong side of the bed that morning, or me just having a brain-fart moment. So, I don’t really worry a whole lot about people at college or the grocery store picking up on my actual problems.
However, I do often think about what might happen if I let some people grow a little closer to me. What if I decide to hang out with a few of my classmates outside of college? What if I decide to go to lunch or a cafe with a few people I barely know? How am I supposed to explain the fact that I have to take enzyme pills with every meal? How am I supposed to explain the fact that I get really tired really fast in most social situations? So on, and so fourth. At this stage in my life, with numerous trials and errors, I don’t yet know how to open up to people very well. And, I don’t trust the vast majority of people I get to know and become friendly with, enough to open up about my health conditions.
Very few people I meet and get to know, ever find out about my health conditions from me. Most of the time, the second a peer gets within earshot of my mom, or enters my space (like my car or my house), they find out in a very uncomfortable (and invasive) way about my health problems. Either they’ll see an unusual pill bottle with my name stickered to it, or my mom will just walk into the room and start introducing Cystic Fibrosis to them (just the other day, I went to Natural Grocers with her to pick up some flax seed oil to take with my morning meds, and my mom just had to tell the cashier all about my CF while I stood helplessly nearby).
It’s never easy to explain to others why I have to take medication with everything I eat, or why I sometimes choose to not take my enzymes with meals/snacks, and instead just suffer the gastric consequences a few hours later. Oftentimes, people don’t know what to do with me after they find out that I am not as normal as I seem, and slowly start to inch away from me till we lose contact. Either that, or they become invasive, and start trying to help me with tasks that I am perfectly capable of doing on my own. It’s one thing to ask someone who’s clearly struggling if they need help. It’s something totally different when you reach to open someone’s soda for them without asking first, and then get offended when they sharply decline your “help”.
Very few people take the “news” of my conditions with any sort of grace. Words can never express how thankful and blessed I am for those few people in my life who don’t treat me any differently after learning about the things I work so hard to hide, but are also willing to help if/when needed (and vise versa). They’re a huge reason why I still attempt to make friends, set goals, and get up in the mornings. And, they inspire me to befriend and serve others who are struggling.
With all that in mind, is it any wonder why I am so full of envy and resentment? Why I spend my nightly prayers begging God for another miracle, so I can just be that much more normal? Why my knee-jerk reaction to someone reminding me that I’m not “normal”, is to snap at them about how wrong they are? Why I strain my ears at college to eavesdrop on others, silently fuming over how petty and weightless their issues are compared to mine?
Thankfully, when my mind is clearer and I am well-rested, I realize my mistakes, and make it an urgent goal to stop being an asshole towards myself and others (even if my assholishness is silently in my mind). After all, no matter how much my tenacious heart denies it, my health conditions have held me back in some ways. And, it’s a miracle I am as far in life as I am! So, why can’t I accept the praise and grace people closest to me offer me? Why must I be so damn hard on myself? Why do I compare myself to everyone else around me, even though I know damn well that there are a million things wrong with that?
Honestly, I don’t know. I’m sure I’ve been chastised by teachers or distant relatives for not reaching certain goals or meeting certain expectations, even if such shortcomings were never my fault. Perhaps, their words have seeped deep into my subconsciousness, and have begun to alter how I see myself. That, and I’m sure being exposed to media that romanticizes everything possible my whole life hasn’t helped. Though, I’m also pretty sure my low self-esteem and tendency to be horrendously harsh towards myself, comes from nobody other than me, and the frustration I have dealt with living life I have.
I think I'll always desire to be "normal" and live a cookie-cutter lifestyle. My frustration and envy are rooted in that desire (which is a very unrealistic thing for me to want as badly as I do). Logically, I know that no matter how far science progresses in my lifetime, no matter how healthy and normal I look and act on the surface, no matter what I do to try to shoehorn myself into being just as normal as everyone else, I will never, ever, ever, achieve a "normal" life. One where my body isn't scarred by medical procedures, where I don't have a spring and a stent in my heart, where I don't have to take copious amounts of obscure medication every morning and evening to stay alive, where my brain isn't constantly paying attention to every little detail right down to my heartbeat, where I don't have to go to an excruciatingly long doctor's appointment nearly every month, etc, etc.
For me, the fact that I'll never be as "normal" as most others around me, is an impossible pill to swallow. At least, right now. After all, I am extremely healthy and well, especially considering the fact that I have several conditions that should've killed me years ago. Doctors are routinely stunned by how physically and even mentally healthy I am, considering my circumstances. I am often told that I clearly have some sort of "important purpose" in life, almost as though I'm some sort of "chosen one" (which, by the way, really bothers me, as I don't see myself as someone worthy of that title). Because, otherwise I wouldn't be alive.
Yet, I'll forever be scarred and branded by my conditions, which I must go to great lengths to hide so people treat me like anyone else. I wish I could let people get close to me without them ever finding out that I'm a genetic abomination. I wish I didn't have to worry about health insurance, numerous doctors' calls and appointments, studies and trials, new experimental medications, infectious diseases, psychologist/psychiatrist appointments, or any of that bullshit! I wish I just had a normal childhood, where I wasn't wracked with anxiety and phobias and illness all the damn time. I wish I was far less skittish and much more brazen than I am. I wish I could just "be myself" without freaking out "normal" people. I wish, I wish, I wish...
But, no matter how much I struggle to accept and love myself, I know there is hope. I know that my heart is changing for the better, though the process has been and will continue to be very painful and gradual. There are moments, as fleeting and easy to miss as they are, where I don't feel so much anger and disgust towards myself and the circumstances I was dealt at birth. I can't say I ever feel very proud of anything, but I can say that in those short, sweet moments, I am at least content and fond of the life I've lived thus far. Up until recently, I never had such hopeful moments. And, as time goes on, those moments become less and less rare.
I still have a hell of a long way to go before I'm even remotely okay with myself for the most part. But, hey, that's what therapy, grace, and loving family and friends are for. However slowly I am going, there's no doubt that I am growing less angry and less resentful. But, to do that, I first have to let myself feel and express such horrendous thoughts and emotions. I can't process them if I just shut them down and bottle them up. Eventually, they will come back to bite me in the ass if I avoid them at all costs. I must go through the process of letting go in order to learn how to love and accept myself and the life I was given.
I'm not sure if many people understand that accepting yourself first requires you to grieve over the things you wish you were (but weren't). That grieving process is tough, and (at least to me) feels very similar to grieving the loss of a loved one. Indeed, there's a part of me that feels like I am burying the person I've always wanted to be, but could never and will never be. I will never have a perfectly normal, healthy, average body for as long as my flesh lives. I am stuck in this sick, disabled, diseased body until God calls my soul home. There's no way around that. I just must accept that, and accepting it is very, very hard, and even more excruciating.
But, I must admit that there's a part of myself I've never resented or had an issue with: my stubborn refusal to quit (unless I'm absolutely fucking forced to, but even then, I still put up a serious fight). However, I'm sure most people (particularly those who have known me for at least a few years) have been alarmed by my stubbornness and tenacity at some point or another. I'd be a multi-millionaire if I had a quarter for every time someone's told me something along the lines of, "Don't do too much, now" or, "You need to relax and get some rest.", or "Quit beating yourself up. Perfection isn't real."
I've never taken their advice unless I was absolutely forced to. Even then, I never accepted their help or advice with much grace. I've always bared my teeth at the mere idea of slowing down or taking things easy, or accepting help from others (even when I desperately needed it), or being less than what I consider perfect. I've never felt comfortable being sedentary or taking serious time to rest, even during the times when I was coughing up bloody bits of my own lungs. I have a need to stay active, stay moving, and keep progressing, even without any particular goals in mind. I just need something to do to keep my mind and body stimulated, or else depression and severe anxiety seep in and completely wreck me.
