"...suffering is not good in itself. What is good in any painful experience is, for the sufferer, his submission to the will of God, and, for the spectators, the compassion aroused and the acts of mercy to which it leads." - C. S. Lewis
I'm sorry, but I HAVE to vent this. I do not think I have so blatantly gotten this out of me on a blog before.
I've told God. I've told a select few people. I've hinted at it. But I have never thrown it into the universe. But understand I am saying it just to get it out of me. To get these sticky, heavy, dark, evil EMOTIONS out of me. They are festering and growing and I hate it. I just hate these emotions dragging me down and throwing me all about. Making me FEEL like something is true when it probably isn't.
It SEEMS and FEELS like I don't have a support system to help me through Stills Disease.
Yeah, there's mom and dad but they can't fully understand and they can't do it all. Yeah L--- understands more than any other person on this planet but we are both such a mess and so far away from each other...and there are a SELECT few more, but I'm talking about people going out of their way to support me and be here for me. People researching this disease and my meds and anticipating my needs before I am experiencing them. I had someone do that before, so I know it is possible. But where are they now?
I see it on tv and in movies and in real life all the time. A hoard of family and friends gathering around the one they love who is struggling. Where is my hoard of people? Where is my support system?
I often wonder if it's all my fault or theirs.
Yeah while I was healthy I was either self obsessed or with only one set of my grandparents. That was my fault. I am NOT proud of that. But...I don't know.
Or is it my fault for not calling these people, having them over, and then ripping my heart out right in front of them, handing it to them and telling them what it felt like to be dying, and how I worry every day I will be hospitalized. And how every day I think about what it will be like to die early since I probably will, and how even if I don't, by then it will be so bad I will want to. Is it my fault for not doing that? Is it my fault I don't want to tell them how bad it is and that's why they aren't around? Because they don't know? Because I never spent energy I DON'T have telling them how horrible this whole thing is? Is it? Is it all my fault?
Maybe it is. I dont know anymore. Ive spent the last almost eight years wondering where my hoards are, if they even exist, and will they ever show up, and what will it take for them to show up? Ive wondered if will take something like cancer for me to finally have their attention. Is that all that we deem as important enough for us to finally stop what we are doing and be there for someone these days? And I HATE how I'm often thinking about if that happens, God forbid, will I even want them around? Often I think I wouldn't want them anywhere near me because they missed out on helping me for eight whole years. But maybe things will be different in the future. Maybe things will be so bad my heart will finally soften and I will accept their delayed support anyway...
I wonder how many people have given up on me, if that's the problem? I don't have people over and I think that hurts their feelings or something? Like its my fault for not letting them visit? It doesn't matter that I'm barely functioning, I'm completely depleted of energy, I haven't showered in days, they NEVER stay for a SHORT visit, and often they are carrying so many germs that could seriously attack my body and put me in the hospital. Its ALL my fault for never inviting them over! Right?
And maybe I don't love them as much as I used to because I never go to events anymore. Because I haven't been in seven years. Not like that timing should mean anything. Oh no, it's just a coincidence! And it doesn't matter that I never leave the house except for a doctors appointment. All that matters is that I never show up to THEIR important event. Right?
All I can do is shake my head and try not to cry.
I give a shrug of my shoulders to the whole scenario.
I look up at the ceiling as if God lives sitting somewhere just beyond it and ask Him what I should do or say now.
I don't know. I just don't know.
It's been eight years of fighting this on my own, and I just don't know what to say or do about it anymore. I honestly don't. And I'm scared as hell of what I'm gonna do if this gets any worse than it already is because I truly believe we (my parents and I) will not be able to do this alone very much longer. And I can't think of a single person who will stop everything in their own lives simply to help us with ours. What happened?! Why?! And what are we gonna do?! What am I gonna do?! I can't support myself by myself at all, let alone up until the day I die!
I'm afraid all will crumble before me at any moment and I will be all alone. I'm afraid. I'm horribly afraid of being alone. Because I know I CAN NOT get through this alone.
Where is the compassion? Where are the acts of mercy? Where are my people? Lord what did I do to lose my people?
Lord why are these emotions getting me so worked up about this, even eight years later?
Lord...let logic, Your Truth, constantly and ceaselessly remind me that sometimes the pain in our own lives is so loud we can't hear the pain in anyone else's.
Help me.
Soften my heart.
Tell me the Truth.
Tell me Your Truth.
And make sure I know every moment of every day that You are my support system! You are my people! And You should be more than enough to get me through this! Amen (so be it truly).
