People get tired of hearing you complain. When you have the "flu" for a lot longer than three weeks, you're not allowed to complain anymore. I know it's hard to have the flu, I know it's hard to have a sprained ankle. It's hard to have a disease that progresses and can kill you. It's hard to take assisted showers. It's hard having four children that you cannot physically take care of. Ever. It's hard not being able to feed yourself. It's hard not being able to think about anything but the pain. It's hard knowing that being a dreamer is useless, you can never be like the dreamers. It's hard to know your family suffers because of you. It's hard to accept the fact that getting out of your bed is a good day. It's just hard. It's hard to look young, be young, and feel like I'm already dead. Most days you can handle it pretty well. Then there's day's like today, where you're only working on three hours of sleep. When you've only had one meal for the day, and then all your diseases hit you in the face. When life, once again, is being life, and it just becomes too much to handle. When you have to admit that you do have a deadly disease. That you are a disabled crippled, and cha, that pretty much sucks. When the physical pain is nothing compared to the emotional anguish ravaging your body. When pain that would bring most people down in instant tears is no longer your greatest pain. They say positive thoughts can heal everything. One, it does help, but doesn't stop anything, and two, if that's the case, I'm in big trouble. I'm not much of a positive person. I love life, I love to laugh, but I have a very sinister outlook on life. Most days I am better, but not days where it just catches up to you. My childhood could be a New York Times best seller. Think of anything evil that can happen to a child. Okay, welcome to my childhood. That child got thrust into adulthood completely unprepared to handle anything. Thrown into circumstances no less devastating than the childhood. Now coming up to my third decade I wonder what there is to life. How can you live so long and experience nothing but such intense pain? How can you not think of a single memory that wasn't wracked with pain, anxiety or fear? How can you be such a dreamer when you know it'll never happen to you? That as strong as your willpower and determination is, it'll never be stronger than the physical limitations. If the first thirty years have been this painful, what do the next fifty hold? Will M.S. let me live to be 80? Will it get worse than this? What will the final stages be like?
It gets so hard to get on Facebook on days like today. Seeing people be grateful for getting over their broken arms, never realizing how much they took their health for granted. Reading it, knowing you'd do anything to get better like they do. Reading petty squabbles when you're not even sure how much longer you'll live. Everyone deals with their own demons, with their own pain. I don't say they are any less important than mine, they're not. It's just painful to be in this position. Painful to be hurting so much. Inside and outside. Dealing with demons those closest to you don't know about. Trying to take on everything yourself, for fear of being judged, rejected, hurt some more. For the fear of hurting those closest to you. The fear of letting people down. The fear of not being allowed to be sick. I 100% feel I do not have permission to be sick. I haven't given myself permission. None of my family members have given me permission. I feel like I've let everyone down. That by not performing my duties I've let them all down. I don't feel my husband gives me permission. I know he loves me, but I always feel he's waiting for me to get better, to help lighten the load. I don't feel like anyone has accepted or given me permission to hurt. I'm always asked to put on the smile, pretend nothing's wrong. Someone asked how I deteriorated so fast. The truth was, it wasn't fast at all. I kill myself to pretend nothing's wrong around family. There's no one who understands this. It takes me weeks of recovery from pretending I'm well. Everyone was shocked to finally learn that I've been bed-ridden. That I've needed so much assistance. I try to play well so hard. I get relieved when I catch the flu or a cold when family is around. That means I have a "real" excuse to feel unwell. That me being disabled is normal. Not one family member has seen the true extent of my illness. Not even my husband. I try so dam hard not to disappoint him. I try so hard to help more, to do more, to be more. It never gets me far and it leaves us both frustrated. It's SO hard to have a crippling disease. It may sound hard, but until you've actually experienced it, as me, with my past, current circumstances, you'll just never know. I wish you could know. I wish you could feel how much pain there is. It might help people understand me more. Stop expecting so much from me. Asking me to give what I cannot physically produce. I wish I could allow myself the same respect I demand. Permission to be sick. Permission to accept my physical and emotional limitations. Oh how I wish there was more acceptance. Until that day, this girl has been broken. The girl who stopped crying from any pain at 6 years old. The girl who felt crying was weakness has now found that crying is the only thing that keeps me from going over the edge. Letting the pain, the heat, the anger come in the form of tears. Although soaking my pillow every night is a bit excessive, it's all I have for now.
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