I am aware that I am less than some people prefer me to be,
but most people are unaware that I am so much more than what they see.
— Douglas Pagels

Tuesday, March 20, 2012


It has been very hard lately. Physically and otherwise. I guess anyone who has been paying attention is aware of that. Being debilitated is not only difficult on the body, but the soul as well. Life is one big emotional...well...roller coaster. Ha. As always, I named the blog right.

In looking at past entries, I've noticed that in one post, I said I was handling things pretty well and I wasn't depressed. That was true. The next post, I was not coping well at all. That was also true. The fact of the matter is that there are a lot of ups and downs. Days when I think "Ok, I can do this, I'll make it somehow", and days when I absolutely, positively cannot by any stretch of the imagination...do this.

I'm sure I'm far from alone on this road. I can't imagine anyone in this condition feeling any differently, although I realize that many people with systemic disease are in better shape than I am. I was one of those people just a few years ago. I was mostly functional. Working, making plans for the future, kicking butt and taking names in the corporate world. It was difficult, yes, but I was managing. Now, I'm hanging by a thread at times, lucky if I can stand up in the kitchen long enough to prepare a meal. Sometimes, I can't do that. I had to quit campus classes at the college because I'm unable to sit up in a chair long enough, unable to complete any piece of artwork I attempt, unable to do more than prop up on pillows in bed most of the day. I had to turn my job and my students away because I'm physically incapable of being there anymore. There are days when I can't lift my limbs enough to step into the bathtub and wash my hair. Is this the end of the rope? Because it sure seems like it.

I've filed out an application for Social Security Disability because I have no other options. I have zero income, living on charity...thank God for charity. But God help me, I'm at the complete mercy of others and it is a helpless way to live. Things are rough right now. This is not what I wanted my life to be. I had dreams and goals and plans just like everybody else. Amazing plans. I wanted to do great things. Had I been given a real chance, I could have done great things.

I'm angry. Broken. I feel cheated and defeated. Dragged around, beaten down, and left to die a senseless death from a worthless existence. No other way to say it, at least not without using a lot of ugly words. I'm not like this every day, but it is where I am sometimes. It is where I am today.

But I'm still breathing. And because I'm breathing, I'll never stop hoping. I'll never stop hoping for a better tomorrow...for a life worth living. I'll never stop trying to make it happen. It's all I can do. Hope is all there is. Hope is all I have.

Yet somehow, hope is all I need. I have to believe I am here, in this Hell on Earth, for a purpose. One that is bigger than what I can see, or hear, or feel. One that someday makes this entire journey...both good and bad...worth it.

Where there is life, there is hope. So I'll keep breathing, until I can't breathe anymore.