I don’t like it when other people get sick – especially other members of my family. Me and my brother have both come down with the cold. He picked it up first, so he is a little more sick than I am. But we’re both sick. It’s hard to watch someone you care about suffer, unable to communicate to them what you’re really feeling.
I happen to be sick all of the time. I have had a chronic illness for the better part of three years. I have lived every day in the fog of malaise; so a few aches and a stuffy-nose is nothing new.
My brother on the other hand isn’t so use to feeling constantly run-down. He’s a young healthy guy in the prime of his life. He has a full-time job (salaried, no less). He has a loyal group of friends. And most importantly, he has options. If he decides he wants to become a marathon runner, he can. If he wants to backpack around the world; no problem. If for some reason he wants to break his arm, he can. And he can sit back for a month while it heals, waiting for everything to go back to normal. So I can imagine feeling trapped is a real shock to his system.
Growing up we didn’t have the most emotionally supportive parents. Our mother is a bit of an apathetic spaz, and my father is an anxious, disabled alcoholic. There wasn’t a day we weren’t hit or yelled at, or a Christmas eve without explosive anger and an abundance of alcohol. After we stopped being cute, and the scars of emotional neglect became visible, our parents pretty much stopped caring about us altogether. They didn’t try to undo the damage they did; not even one apology. There were no age appropriate discussions about sex or plans for the future. We weren’t prepared for life, and unfortunately the suffering we did experience fostered this insanely stupid illusion that we’d already had the worst life has to offer. So when bad things did happen, we refused help because we imagined life’s coping tools were already paid for in-full.
Over the years I’ve come to understand that the hardest part of being sick isn’t necessarily the illness itself (the pain, the fatigue, the depression). It’s the loneliness. Every day I feel like I’m living in the shadows; in some dark corner of the room watching everyone else have a good time. Only there’s nothing I can do to get anyone’s attention.
My brother went all postal today when I asked him for help doing the dishes (I was pretty spent from lugging the laundry between the basement and our ninth floor apartment). He came at me with ‘can you not tap your fingers when I’m over here sick doing YOU a favor).
God I wanted to yell at him so badly. I wanted to tell him that this is how I feel every day. Every day I feel nauseous, cold, faint, achy – and more. Yet no body acknowledges that I’m ill. Nobody asks me how I’m doing. No one helps me with my dishes; for Christ’s sake, no one even knows the name of my disease!
Instead I left the room and flung my ragged, worn out body onto my bed and yelled at him from the privacy of my own mind. I asked him to pretend our roles were reversed. I said Imagine this is how you live every day: you feel worn out, tired. Like any moment your body is going to rebel and just say ‘I’ve had enough. You’re on your own, pal’. So you retreat into your memories or try to wrestle with the idea of some sort of solution to all of these new problems. But your mind is your own worst enemy and all you want to do is to talk with people. You don’t know why this is happening to you; you just know it’s wrong. And you want so badly for someone else to agree with you. Only nobody does.
I don’t acknowledge that anything’s wrong. Your subtle pleas for attention seem to fall on deaf ears because I make no attempts to understand you. And every day I’ll ask you to do things I should know you just can’t do. Things that I can manage without giving them a seconds thought, but don’t because it’s unfair when you don’t “chip-in”. But because I don’t ask you any questions, I have no idea that you’re in constant pain. You’re aware this is a problem and it frustrates you like crazy. Every day you’d watch in silence as everyone around you enjoys their life; taunting you with happiness. After a while when you finally freak out I’ll give in and empathize because you’re being too annoying. I’ll tell you things like ‘I know what you’re going through. I love you and you’re just over-reacting. Things will be different’.
But you can tell by the questions I don’t ask, the concern that I don’t show, that my words are a lie. To you happiness is some kind of sick mirage; constantly disappearing and constantly beyond your reach. Imagine living that every day, because that’s what I go through’.
The hardest part of being sick is usually something that you can’t change. It’s something we discover when we think about what happiness means to us. If I had one friend, someone who would take the chance to find out who I really am, life would be good. People need love. Being sick has taught me that in order to grow, you need someone to grow with. My life is a mixture of avoidable loneliness I have no control over, and unavoidable pain I have no control over.
The hardest thing for me and my brother growing up was knowing that nobody really cared about us. I mean, Mom and Dad said that they loved us, but they never acted like they did (like that uncle who ‘says’ he’s a millionaire, only he drives a Ford Focus and is always borrowing money from your parents). And because no one showed us what love was like, we aren’t even able to care for each-other now.
Becoming the things that you hate, that’s the easy part. Trying to redo all of the good things you missed out on is the confusing bit. And unfortunately life can be a total dick, and some people never figure it out.