“Sometimes reality has a way of sneaking up and biting us in the ass. And when the dam bursts, all you can do is swim. The world of pretend is a cage, not a cocoon. We can only lie to ourselves for so long. We are tired, we are scared, denying it doesn’t change the truth. Sooner or later we have to put aside our denial and face the world. Head on, guns blazing. De Nile. It’s not just a river in Egypt, it’s a freakin’ ocean. So how do you keep from drowning in it?”
- Meredith Grey, “Grey’s Anatomy”
“Look into the depths of your own soul and learn first to know yourself, then you will understand why this illness was bound to come upon you…”
“[…] It’s hard to see the pain behind the mask
Bearing the burden of a secret storm
Sometimes she wishes she was never born
Through the wind and the rain she stands hard as a stone
In a world that she can’t rise above […]”
- “Concrete Angel”, Martina McBride
Friday was the first anniversary of my blog. For the weeks leading up to it, I was really planning to make a big deal about it; about how much has happened over the past year and how far I’ve come.
But the truth is, I haven’t come that far at all…
Yes, I’ve become a pro at telling people that I have lupus and rheumatoid arthritis. What I haven’t become good at, however, is accepting my limitations. Well, I think I’ve come to accept them for the most part, but I haven’t gotten over the fact that I need to tell the people around me about them.
It’s really hard for me to admit this. In many ways, I thought I was coming to terms with illness. I thought I was beginning to grow into this body, starting to feel comfortable in this skin.
But it has come to my attention that my filling this semester with loads of stuff has been for one reason and one reason only: to act like I’m not sick. This attempt has, however, been an abject failure. Why? Because regardless of what I was trying to prove to myself and/or others, I ended up last on the list yet again.
I tried to take comfort in things that I assumed would take away the emotional, and maybe even some of the physical pain. But the truth is, all these things did was cause more pain than was already there.
And then my body fought back and put me in the most pain that I’ve been in, in a long time. It was only then that I realized what the problem was. I am sick. And I can’t continue to live my life as if I’m not…
Would I like to think that there is some cosmic occurrence behind all of this? Sure, but honestly, I’m not sure what I believe anymore.
I used to believe that modern medicine was truly amazing. But it just goes to show that when you end up with all of the symptoms at one time that modern medicine has learned to treat, it is powerless against them. I mean, I’m taking medications just to counteract the side effects of other medications.
The truth is that there is very little beauty to this experience, no real deeper meaning or truth. There is no hope that one day life will go back to normal. Maybe there never was a normal. Maybe there was only a time when life didn’t suck this much.
Because even today, I think there is a part of me that hopes one day I’ll wake up and be pain and symptom free. Not just for a day, though. I’ll wake up and the world will feel different because I won’t be sick anymore.
I get scared because there are days when I’m so down that I think I might just throw in the towel. Because if this is how I feel now, how am I going to be able to deal with this forever?
Anger is a funny thing. It is a dark beast that hides in the pit of my stomach and rears its ugly head at unexpected times, and in unexpected places. It is like lava rising up in a volcano and it relentlessly destroys everything in its path. It is especially dangerous when it is directed at nothing and no one in particular.
I do desire to be happy, I truly do. But right now I’ve hit a wall, and I’ve dug myself into a hole that’s too deep to get myself out of on my own. In some ways, I feel like no one is listening, like I’m trapped in a glass box that’s filling up with smoke, and I’m pounding on the walls, but no one hears.
Because the truth is, if I wasn’t having a hard time facing the reality of my illnesses, I would never consider not taking my medication, I would never have skipped out on my quarterly blood work to make sure the Cellcept isn’t killing me, and I would never even give thought to how many times I’ve stared down my medication bottles, thinking how easy it would be to swallow them all down and never have to deal with any of this ever again…
I’m trying to stop the cycle of self-blame and self-loathing. I’m trying to remind myself that we do not choose our illnesses, rather, our illnesses choose us. And I’d like to think that somewhere there exists a reason for all of this. But I’m tired of fighting with myself, with my body, and with everyone around me. I’m scared that no one’s ever going to love me, really love me, illnesses and all. But most of all, I’m scared that I’m never going to feel whole again…