Lately I've been questioning a lot about life. I wasn't raised religious at all- and while my family attempted to get us into church and all that good stuff, it never really set. So as a child growing up I had a lot of unanswered questions, like "What happens after we die?", "Why are we here?", Who is God and Jesus?" These were tough questions for a young child and so having them unanswered all while I watched my seemingly normal childhood crumble before my adolescent eyes.... I began to break. I lost my sister when I was 8, my bestfriend/ex boyfriend at 17 and then my mother at 27, Only to get this rare condition thrust upon me out of the blue. I was an angry girl and yet I still chose to go to church and seek God in the midst of all of these trials. One thing you are taught as a Christian is that suicide is a huge no-no. While my non denominational church may argue that, most Christians on the other hand still believe it is a one way ticket to hell if you commit suicide. That has been the only thing really holding me back from taking this option through the worst of this condition. However, lately... I've been struggling with my faith. I could give you a hundred reasons why I should believe in God... I mean just having a rare condition and actually having doctors studying the condition, to me, is a sign of answered prayers from God. But then my mind asks why would such an Almighty and Powerful Being allow a new mother to suffer. Why would she allow such a gap between herself and her baby and herself and her husband and herself and the world? Why would he allow such a rare condition to get worse each passing day and not only that, but to allow the rare symptoms to be even more rare with other not so common and debilitating symptoms in the VS realm.... When you start losing your faith, you stop finding reasons why you should be here suffering.
I used to enjoy life... a simple drive to the country with my windows rolled down and my radio playing, what some may call, 'noise', was my release. That was my refueling of life. I got pleasure from the simple things in life when it came to me and the outdoors. I loved traveling and going to new places. I would literally burn with excitement when anyone mentioned a road trip, be it 15 minutes down the road, or hours away. I always knew my calling was away from home. I was supposed to pack my bag and sporadically jump in my car and travel. Money was no option, of course it was, but Hey, it was my calling.
Now I retch at the thought of driving anywhere too far away. My vision has become so choppy that I would almost rather close my eyes and force my other senses to take over than allow myself the misery of watching life pace me back in fast moving fragments.
I went to lunch with some friends yesterday and I am forced to hear it over and over again about how normal I look.... beautiful they said. I'm beautiful..... I hear it all the time... yet it means nothing to me. I am hollow inside.... broken. I am nothing without my vision. I am missing inspiration. I am missing faith. I am missing......
It's hard feeling alone in this condition... it's very tough. You find yourself wanting to get closer to those who are going through it too, just so you don't feel so abnormal. Truth is we are all different, no matter how similar. We may have visual snow in common, but one may still be an @sshole LOL. That part doesn't change. My husband.... I don't know what to think about him anymore. You want to find the best in your life partner. We got married before this happened to me so I was unaware of how he would handle a situation like this. Hell, most couples would fear a lighter load than this and sometimes that's enough to break a marriage. This is HELL. There is no other way to say it. Hell on earth. He chooses to grade me on my exterior just as everyone else. And so if I look fine.... or beautiful... I must be having a great day with no issues. Truth is no... I do not have great days and every day is an issue. This bothers me.... sometimes I just feel like I have no support in this. I can't handle normal life and see him come home from his 'normal' job complaining about something so mundane and stupid. "Oh you're in a bad mood because traffic was slow on your way home?" How about I can't even FUC%ING DRIVE!!!! It takes everything not to lose it.........
Every morning I wake up and I've had enough. I tell myself "This is it, I'm not dealing with this anymore. Fuc% it!........... But then I hear my son and I am reminded of my responsibility. I began to think of what his life would be like without his mother who he loves so much and depends on. I don't want to hurt him, my husband or my family. I know that in this moment, and however long this 'trial' will last, it's going to hurt. I'm going to have days where I don't want to suffer anymore. There will be days where I am just supposed to put a smile on my face and pretend that everything is okay since I am only seen on the outside and my swirling mess cannot be seen on the inside. One day it's going to get better and I know, Lord knows, I will be a stronger person because of this. I owe it to myself to try whatever I can to be happy. To live this way until I don't have to anymore. And so I wait... I'm home now where my vision seems moderately normal to me, but I know that tomorrow when I step out into the ever revolving world I will once again have enough... and once again be reminded of my responsibilities......
