People get too wrapped up in the package of things. If it looks shiny and pretty it must be good. If that apple is polished to a gleaming red and blemish free it must be great...forget that it's pumped full of chemicals and pesticides and horrible for you...Same with people. Same with me. I'm young and people look at me and apparently because I don't look like a total train wreck with they see me - because for whatever reason it's the Southern girl hidden deep inside me (or the Russian) and I will not let you see me flinch or falter and I'm not going to let you see me off my game if I know your coming round. So, I brush my hair (or have my hubby help me) and I put on comfy gear and people tell me how great I seem, how good I look how great I must be doing. I smile, I grind my teeth and I do my best to not cry. Sometimes I giggle and I do my best to not let it bubble up and laugh like some crazy lady.
People tell me how great I deal with things. People are also happy to tell me that God never gives you more than you can handle, that God will give you something to help you grow/grow closer to Him. That I am so lucky that I don't have cancer. That I need to make sure I focus on my child. That I need to be grateful for my child because so many people aren't able to have a child/have children that are sick and mine is healthy and luckily it's me that is sick and not my child. Etc. etc.
People tell you a lot of things when you have a disease with no cure that isn't terminal....per se. I mean, this will eventually kill me. That's the funny thing. Unless something else creeps up, this is going to be what kills me. I've talked to my pain therapist about it. We were able to even go through the things that people say and laugh at some and talk about how to respond to them (other than just chucking some of them on the head because really?! You must be pretty sure that I am not well enough to cause harm is all I can say....) and what to do to make me feel better about ignoring them too. This disease takes most people down with suicide. The pain is so unimaginable and so unbearable, and to live a lifetime with it...well, most people just can't. So they check out. Then there are the collateral damage problems/diseases that happen. Something will take me down. But....I don't want to think about it. I try not to. But the one that scares me...the aneurism/stroke....that scares me. I hope if that happens, that it's a lot further down the line. Like way down the line. I want to see my baby graduate college at least, preferable get married. But when I go, I want it to be quick. I don't want to linger. I want it to just zank me out of this world and into the next.
As for the number one reason most people with this disease don't stick around. I'm always surprised when people seem so shocked that suicide is the number cause of death for this (well, as much as it can be reported, b/c the numbers get tricky, but, yeah, widely reported it is) disease. I am baffled that people are shocked. I mean, imagine the WORST pain EVER in your ENTIRE life, then MULTIPLY it by 10 and imagine it never ending. Well, it can go up 9 more notches or down 1, but that's essentially it. I mean, you feel stripped of all your flesh, then dipped in gasoline, set in fire, put out, doused with vinegar, rubbed with salt and sand, pounded with nails, lit back on fire and repeat over and over with pounding and punching and other awful feelings. Would you want to keep going? Especially since no one else can really SEE that you are on fire. I mean, you skin is kind of blueish and things, but overall, people just tell you how "great" you look. They want you to just suck it up and go on. How well would you be able to go about your life.
I think most people would start to crumble. I think even the strongest person in the world would struggle to keep pushing through. You are essentially a prisoner of war to your own body. You are being tortured over and over day and night, there is no rest or break or reprieve from the pain. You don't get holidays or weekends off. No date nights or sporting events or school plays or special days where it leaves you alone to be normal. No, it's always hounding you. But you look normal, so people bump into you, hit you, shove you and in general hurt you further and knock you with their shopping carts, brush against you in line, etc. And you want to scream and shove them away.
And work. Yeah, good luck with that. So, it's of little wonder that this normal looking, 30-something, young, happily married, mama that looks fine, sometimes thinks about just what if I didn't have to be here. Is there a heaven because I can't do this. Because the pain is so bad that the undertow starts to pull me under and suck me down and I can move my arms and legs anymore. I can't kick for the surface. I can't breathe and the bubbles trailing up to the surface are getting smaller and smaller. And so I let go. I don't fight it. Because I don't have the energy to fight, and sometimes I just have to remember, remember my husband, remember my baby, remember my dogs...and my heart swells....and it carries me to the surface. I'll float there, bobbing along, taking breathes until I'm ready to start paddling again. I'm not ready to go yet, but I understand. I don't need some stranger to tell me how grateful I "should" be for my husband and baby. My heart swells with love for them. The only reason I haven't been pulled under for good is because of them. I've got my demons. It's ok. I've also got my saviors.
People tell me how great I deal with things. People are also happy to tell me that God never gives you more than you can handle, that God will give you something to help you grow/grow closer to Him. That I am so lucky that I don't have cancer. That I need to make sure I focus on my child. That I need to be grateful for my child because so many people aren't able to have a child/have children that are sick and mine is healthy and luckily it's me that is sick and not my child. Etc. etc.
People tell you a lot of things when you have a disease with no cure that isn't terminal....per se. I mean, this will eventually kill me. That's the funny thing. Unless something else creeps up, this is going to be what kills me. I've talked to my pain therapist about it. We were able to even go through the things that people say and laugh at some and talk about how to respond to them (other than just chucking some of them on the head because really?! You must be pretty sure that I am not well enough to cause harm is all I can say....) and what to do to make me feel better about ignoring them too. This disease takes most people down with suicide. The pain is so unimaginable and so unbearable, and to live a lifetime with it...well, most people just can't. So they check out. Then there are the collateral damage problems/diseases that happen. Something will take me down. But....I don't want to think about it. I try not to. But the one that scares me...the aneurism/stroke....that scares me. I hope if that happens, that it's a lot further down the line. Like way down the line. I want to see my baby graduate college at least, preferable get married. But when I go, I want it to be quick. I don't want to linger. I want it to just zank me out of this world and into the next.
As for the number one reason most people with this disease don't stick around. I'm always surprised when people seem so shocked that suicide is the number cause of death for this (well, as much as it can be reported, b/c the numbers get tricky, but, yeah, widely reported it is) disease. I am baffled that people are shocked. I mean, imagine the WORST pain EVER in your ENTIRE life, then MULTIPLY it by 10 and imagine it never ending. Well, it can go up 9 more notches or down 1, but that's essentially it. I mean, you feel stripped of all your flesh, then dipped in gasoline, set in fire, put out, doused with vinegar, rubbed with salt and sand, pounded with nails, lit back on fire and repeat over and over with pounding and punching and other awful feelings. Would you want to keep going? Especially since no one else can really SEE that you are on fire. I mean, you skin is kind of blueish and things, but overall, people just tell you how "great" you look. They want you to just suck it up and go on. How well would you be able to go about your life.
I think most people would start to crumble. I think even the strongest person in the world would struggle to keep pushing through. You are essentially a prisoner of war to your own body. You are being tortured over and over day and night, there is no rest or break or reprieve from the pain. You don't get holidays or weekends off. No date nights or sporting events or school plays or special days where it leaves you alone to be normal. No, it's always hounding you. But you look normal, so people bump into you, hit you, shove you and in general hurt you further and knock you with their shopping carts, brush against you in line, etc. And you want to scream and shove them away.
And work. Yeah, good luck with that. So, it's of little wonder that this normal looking, 30-something, young, happily married, mama that looks fine, sometimes thinks about just what if I didn't have to be here. Is there a heaven because I can't do this. Because the pain is so bad that the undertow starts to pull me under and suck me down and I can move my arms and legs anymore. I can't kick for the surface. I can't breathe and the bubbles trailing up to the surface are getting smaller and smaller. And so I let go. I don't fight it. Because I don't have the energy to fight, and sometimes I just have to remember, remember my husband, remember my baby, remember my dogs...and my heart swells....and it carries me to the surface. I'll float there, bobbing along, taking breathes until I'm ready to start paddling again. I'm not ready to go yet, but I understand. I don't need some stranger to tell me how grateful I "should" be for my husband and baby. My heart swells with love for them. The only reason I haven't been pulled under for good is because of them. I've got my demons. It's ok. I've also got my saviors.
they say it's what you make
I say it's up to fate
it's woven in my soul
I need to let you go
your eyes, they shine so bright
I want to save their light
I can't escape this now
unless you show me how
Demons ~Imagine Dragons
