So yesterday, or maybe it was the day before, all the days are blurred right now, I posted about going to the ER with a nosebleed that just wouldn’t quit. I talked about the doctor and the epistaxis kit and the blood work and the funny little thing they put on my nose and all sorts of other things, in a very matter-of-fact way, and relayed to you the information about what they did to me. I tried to be as upbeat as possible, given a bad situation, and the truth is, I did sort of laugh all the way through it while we were there–the doc was great for helping with that. He was a riot.

But there’s more to the story I’m not telling you.

What I didn’t tell you was what happened after I left the hospital, that was more traumatic to me than anything that happened at the hospital.When we left the hospital, I sat staring out the window watching the scenery go by. It’s a pretty drive from the hospital on Galveston Island to where we live, over the bridge of the ocean, and I often like to watch the birds and look for dolphins in the water. I love the ocean. But on this trip home, I don’t recall even seeing the ocean. It was hard to see anything through the hazy numb feeling.

I put my head against the window and felt the buzz of the vehicle moving against my forehead. I hate the numb feeling, that feeling that warns of depression on the horizon (you know the black dog type of depression), so I picked up my cellphone and I called my mother. I told her what happened, and then I told her about the mask and how I’m not going to be able to wear my cannula any more.

Without the cannula, having to wear the mask, I can’t eat easily, can’t talk on the phone well, don’t want to go out in public wearing the mask… I finally broke down and started to cry and I told her, “It’s like the fucking universe is chipping away at me one little piece at a time, and they’re going to keep taking away pieces of me until there’s nothing left.”

There was a long pause before my mom said, basically, “Well, ‘Chelle… that’s sort of what happens in your situation.”

Her voice was gentle. She was being kind, and she was being honest. And she’s right. When you live with a terminal illness, this is what happens. You stabilize for a time and you get comfortable thinking that everything is okay, and that you’ll just be able to live your life like this forever. And it’s like just when you get used to being a certain way, something new comes along to remind you, oh, yeah, you’re sick, honey, you’re going to die from this, you know, don’t get too comfortable.

I’m not in denial. I’m not. I  know I’m really sick. I know my situation is really serious. I do. I know this.

I told my friend Beth something a while back in an email, basically saying: it’s like every time I get sick, then I get better from that little sickness, but I never get ‘quite’ as well as I was before I got sick. It’s like a slow slide into death instead of a big bang of any sort. I adjust and think, hey, I can handle this, and then something else comes along.

Like I said, chipping away at me, a little at a time. For the last two years after the acute episode, I was fighting to get better and better. Now, I’ve stabilized and it’s like I’m fighting to maintain, and I feel like I’m losing ground.

And for some reason, I feel like it’s my fault. Like I’m doing something wrong. I keep feeling like if I would just do something different, better, eat better, exercise more, try harder, sleep better, move more, meditate, something, anything… I keep feeling like I have some control over this, and there’s some guilt involved in it. I don’t have any control over it. I don’t.

But there are moments when I have a lot of hope too, moments when even my doctors have a lot of hope, that I still have a few years of good life left in me, as long as I keep doing the good things I’m doing. I can have more than we originally expected, even, but at the same time, I’m constantly reminded that one little thing can take all that away from me too. Then I remind myself that no one has anything guaranteed and maybe they’ll find a cure for my condition before it takes me out. I don’t know. I just don’t know.

And maybe I do believe in miracles. Maybe.

Or maybe I really am in denial.

I don’t think I am.

But maybe I am.

Maybe I am.

 

Or maybe I WANT to be… I readily admit that I’m keeping several writing projects open-ended, ’cause there’s no way I can die in the middle of writing a book. The universe wouldn’t do that to me. What’s that one song say? “Who could ever walk away at chapter 21?”

My mother says she’s amazed at how well I handle things, how upbeat and positive I am most of the time. And the truth is, most of the time I really am. I have a lot of love and good people in my life.

But every now and then, I break down and I lose it. Every now and then, I get numb and depressed. Every now and then, it all gets to be too much to handle.

And I do cry. And I am sad. And I do ask Why?… I do all those things. I get angry. And I yell and I rage against the system and I question the existence of god… and I do all that you would expect someone in my position to do.

And it’s not easy.

And that’s the truth.

Love and stuff,

Michy