Since I don’t exactly have a whole lot to do lately, I am on the internet far more than I probably should be. One of my favorite internet things, besides puppies and Netflix of course, is a website called PostSecret. If you don’t know what it is, the site, postsecret.com, describes itself well:
PostSecret is an ongoing community art project where people mail in their secrets anonymously on one side of a postcard.
Every Sunday, also known as Secret Sunday, I wake up with floating bubbles in my eyes, and while I blink a million times to convince them to leave my sight, I load up the website on my phone. Each Sunday, new anonymous secrets are posted, and many of them hit close to home for me. Last week, I saw this one:
I feel like the majority of people, especially Americans, would have one of two reactions to this secret. They’d either:
- Think the person writing this is selfish, ungrateful, and a horrible partner. They would probably shame the owner of this secret easily and feel that they were supporting the solider in doing so, or
- Think that the owner of the secret has every right to feel that way and defend them, because while many people don’t want to say it, the truth is, people who are sick mentally or physically are often times a burden on those who aren’t.
As a both physically and mentally ill human being, I can understand both of these views. However, just like in any situation, any extreme to one side or another is usually somehow ignorant, stubborn, and naive. What I am about to write is not going to be sensitive. This is what I really think. I am a very blunt person, as anyone who regularly reads my post knows. And because of my own situation, I refuse to sugar coat the fact that being me, or a person like me, really fucking sucks sometimes.
Here’s the thing; people like me will always be the “Others.” When I say Others, I suppose what I really mean is people that belong to minorities. I could just say that people who are ill are a minority, but the reason I chose to use Others instead is because it feels a hell of a lot more honest. The definition of minority is the smaller part of a whole: but that fact is, regardless of what minority groups you may belong to, you rarely feel like a part of a whole. You feel like another whole all together, usually a far less privileged one, and the main whole generally rejects you because you are simply different. By illness, ethnicity, and sexuality, I am a minority in America. I’ve been ostracized because of all of those by many people in my life. I know what it’s like to be rejected because of race, religion, illness, and all other differences that make up who I am. But for now, let’s stick to the illness one.
The truth is rarely easy to hear, especially when you’re on the worse end of it. And in my life, I generally am on the worse end of it. The secret I shared is the deep, ugly truth, and though this particular person was brave enough to write it out, there are millions of others that feel the same way. I don’t think there are any people in the world who don’t think about the possibility of a loved one becoming ill, and what they would do if they did find themselves in that situation. Certainly, most people would automatically say they’d care for the loved one, that they’d stand beside them through anything. Sure, we’d all love more than anything to take their word for it. But the fact is that caring for someone sick is extremely difficult; it requires flexibility, an incredible amount of patience, tolerance, the ability to adapt quickly and for many people, the ability to handle emergency situations that often times come out of nowhere. Loving someone who is ill is just not an easy job, and it is not for everybody. Those who can’t commit to being a part of our lives aren’t necessarily bad people, either. While it really pisses off people like me to be left behind by people who can’t handle us like we hope they could, we can’t actually blame them like we so badly would like to. They’re just not capable of being all the things we need them to be. For us, the Others, that is far from encouraging. If that’s how it will be, and we will forever be disappointed and rejected by those we love, what’s the point in trying to have relationships at all? Why try?
And for the majority of people, does all that mean they shouldn’t even bother with people like us? Should it just be decided that people like us don’t deserve love or attention outside of medical necessity?
Hell. Fucking. No.
Yes, loving someone who is sick is hard. And it is not for everyone. But if you do, you will see your life in more color than you could imagine. You will learn compassion on a level that is far beyond what you thought you had in you. Not only will you be compassionate towards the one you care for, but you may be able to understand human beings on a new level altogether. You will learn about yourself; how strong you can be, how resilient, and how smart you are on some of the most difficult days. I am not romantisizing illness, mind you. But the fact is that though my family, many friends, and many boyfriends have all given up on me and left me because I am ill, I have also seen a few people blossom through the experiences we share together. Not only do people learn a great deal about what it is like in the Others pile, but they learn about themselves. And that’s kind of amazing.
I have been called a burden on my family. I have been called a mistake by boys I really, really cared for. I have been told that I should not even be alive because of my medical history by doctors. I have been told that I will always face the fact that at any moment, someone I love could simply run out of compassion, flip the light switch in their brain, and give up on me while blaming me for it all. I have experienced this more times than I can count on my toes, and trust me, it truly destroys you. However, I remain strong in my belief that while there are so many that give up on us, the few that won’t, and will choose to grow with us, are out there, ready and willing.
We are never going to belong to the great, general majority. But we do belong. We belong to our little squiggly lined circle of being the Others, we belong to those who rain love down on us without making us feel guilty that we need extra care. Those people that envelop us in pure love and kindness we are beyond grateful to, because they certainly are rare. I have often times reminded myself that I could not be friends with or date certain people because I can’t be what they need, but likewise, they cannot be what I need. Though I have been raised to feel ashamed of that, in reality, I shouldn’t at all. I didn’t choose the life that I live, but it’s what I’ve got. Through every tube I get jammed into my nose, for every panic attack, for every arthritic bone in my body and every part of my body destroyed by my disease, I still deserve love. In the end, the fact is that not everyone can love everyone else; but everyone truly deserves love.
If you are someone chronically ill reading this, I hope that you can see the light in the darkness, because while it’s awfully hard to see sometimes, it is there. And if you are a caregiver, or someone like the owner of the PostSecret I shared who is not sure if they even can be a caregiver, I hope you think about it fully before deciding you can’t do it. We know it’s hard. Being like us isn’t exactly a breeze either. And if you can’t take it, it does not make you an evil or immoral person. But to those of you who can take this life with us, and help us to carry the load a little, you are extraordinary for not rejecting us, but rejecting those who tell you all the time that we’re not worth your struggle.
Above all, this is what matters most to me: I am not like everyone else. I can’t do all the things that I want to. I am very, very different. However, if you were to zoom out, forever and ever, until you were looking at Earth from the farthest part of space, you would see a great image, where a great truth lies. You would not see different piles of people. You would not see black people or white people, sick people or healthy people. All you would see is a microscopic speck of light. All you would see, would be us. Whether we feel it or not, whether we fight it or accept it, in the end, that’s all there is.
There’s only us.
*Disclaimer: I hope that those reading this are aware that while I state that being a chronically ill person or being a person of a difference race or religion are all minorities, I do not, by any means, imply that being of difference race, gender,sexuality or religion are the same as being ill, that something is wrong with those who are any of those things. While in the American media we speak of minorities mainly in terms of race and religion, again, the true definition of the word minority is a smaller part of a whole, and that is the definition I am going by in this post, because as chronically ill people, we are a minority.
I know that I can’t tell you my mind is running circles,
My eyes have begun to swirl, like death that is not as sterile,
I ain’t gonna let you down, I ain’t gonna let you leave me.
I’m sorry, but I can’t tell you that life, that it makes me crazy
So I just like to daydream, cause dreams, yeah they make me happy
Will you come along, my love?
Will you come along here with me?