Monday, September 28, 2015

Alone in A Room Full of People

I'll be the first to admit, that for my entire life, the anomaly of depression; the action of being depressed, withdrawing from the entire world into your own, really confused me. It wasn't until I got sick that I began to understand it. At first I would talk about being sick all the time, just because I was so detached from it all that I never really thought I could be talking about myself. It's almost like an alternate reality that you put yourself into, for your own emotional protection. Breaking your leg, or having your appendix out yes, those are all traumatic things and I would never try to belittle them at all; thankfully nothing of that nature has ever happened to me, but having those things happen to you, yes that might make you a little disconnected with the world while you're healing, because it was traumatic for you. You could think oh no one understands, but then when you get better, you're back to your normal self, back to doing what you love. What if you woke up one morning and you just weren't the same, and no one could tell you, not even the smartest man in the world, IF you would ever be the same again? Oh yeah and add in that now you have chronic pain and every surgery you have from now until the day you die, will make you infinitely worse.... And then there's that looming cloud of darkness hanging over your head, How many surgeries will I end up having? Another unanswerable question. It's like have a nice day and oh yeah F You.

Having an illness, even one that is not so uncommon can be extremely isolating. Because in my mind, conditions are like fingerprints, no one is ever  going to have the same story as you. I know some kids/young adults who are sadly so much worse than  I am, but the converse of that statement is also true. I know some kids/young adults who are doing so much better than me right now. But now the majority of people I talk to are doing better than me unfortunately, well unfortunate for me good for them. When I started to realize that everyone in my life, from my school friends, to my family was "acting differently" than I was, and I seemed so different than I felt I was, I just started retreating into myself more and more. Even now, almost gosh 11 years, down to the day, (man that's freaky) my friends all ask me, why are you so quiet when we are in groups, or my parents are like OMG are you ok!? And I tell them, I'm fine......It's just when you watch the world around you that you truly don't feel like you're a part of anymore, it sort of freaks you out. It's like standing outside in a snow storm and looking inside a nice warm house with a fire going and cups of cocoa, and a Christmas tree, and knowing you will never be able to go in there and get warm. Sometimes I'm just sick of all the questions. Part of what makes pain actually painful is it's privacy and un-share-ability(if that's even a word) because like your fingerprint everyone's pain or version of what is painful is different. I can get up and go to work and then go to a party 2 weeks after brain surgery. Does that mean you should? Or could? Not necessarily.

The reason why I don't talk about it anymore, is because I know that everyone is trying to be sympathetic, and I truly genuinely appreciate it, I really do, but it's like the fingerprint thing, no two cases are ever going to be exactly the same, and you're never going to know what I went through. Because what is worse? Being in pain and being alone? Or being in pain in a room full of people where you're the only one who knows and understands it? I would honestly take being alone any day. There's always a window with invisible pain, and sometimes if you're really good, you can see straight through that window(ie my mom) and sometimes that window is cloudy and you can only see mist (ie the rest of the world)

One of the most devastating parts of chronic illness surprisingly is not the illness itself, or the annoying/painful (insert your adjective here) symptoms it causes. It's the loneliness and all the emotional baggage that comes along with it. So yes, I have hydrocephalus, SVS, aqueductal stenosis, a failed ETV, a shunt, a catheter, a ProSe, a gravity compensating device; any or all of which could fail at any moment, but oddly enough that's not where my worry is most of the time. But the stress of having all these things is multiplied and magnified because of the pain, but it is also what causes the pain and so it's like playing a game of ring around the rosy.  You're never really done with it until you fall down, well imagine if you couldn't just fall down and you were required to spin and spin, never really going anywhere, but just spinning. Any and/or all of these different things that I have inside my body, could possibly kill me, I've known this for a long time, and it's taken a long time for me to accept it, but I refuse to have any regrets, and I live in the moment, I know I'm as healthy as I'm going to get right now and that's all you can ask for if you're chronic. is How are you doing right now? Well right now, I'm alive, and I could never ask for anything better.

Yay I'm on google images! Never thought this would happen lol.

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