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.
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.