Fear THIS

I was talking to a new friend last week about fear, having just watched Divergent with my roommate and being in the midst of another year of Delusion. If you are unfamiliar, in Divergent, people are placed into a video game-esque simulated situation within their own mind, where they must confront and conquer all their greatest fears, and Delusion is interactive horror theater where the audience must participate in order to advance the story. My friend mentioned the usual situations, like being trapped inside a car that is sinking in a lake, and then turned the conversation on me. The only thing that came to mind was getting sick again.

Most people fear outlandish or extraordinary circumstances that are highly unlikely and that they will probably never actually experience. My fear is something I've lived through. Something I'm familiar with. Something I'd be horrified to live through again.

And it has been on my mind, because my stomach felt ucky for over a week, which always kicks me into survival mode. I got it checked out, and, surprise, it's because I'm not eating the things I should be eating. I've gotten a little lax in my diet, and that's just inviting this junk to come back, so I'm cutting back again. Way to go, Genius.

That being said, I'm now realizing that what I told her wasn't the whole story. Yes, I'm afraid of having to tailor my life around this illness my whole life and I'm afraid of it always being in the back of my mind. But, I'm more afraid that I'm becoming bitter and resentful about it, and I'm afraid that I was actually a better person when I was sick. It's amazing how thinking you're dying changes your perspective.

Some of my closest friends have taken to jokingly point out when I say I don't like something, and it's upsetting to think that I've become one of those negative people. I've always been honest with my feelings, but I was never this vocal or curt in my life, even when I was in immense emotional or physical pain, and this is not who I want to be. I think I got to the point where I had nothing left to lose, and was so embittered about people not saying the things that needed saying when they had the chance, that I let my tact and grace filter out with the toxins in my blood, and now I'm left with a toxic viewpoint.

I thought I processed everything that's happened, but it's becoming apparent that I didn't and that is also scary. (I know it will take time and I'm working on it.)

I guess what I'm trying to say is that my fear is that I'm not allowing myself to be a better person after having lived through all this and if that's the case, then what was the fucking point? And even scarier, I know that there probably wasn't a point, because shit just happens, and I'm supposed to create a point, but I'm still so upset that it happened in the first place that I'd rather project that anger onto everything else in my life and poison the atmosphere around me than to fashion the point. And that is the scariest thing I can imagine.

I was given a second lease on life, and I'm happier than I've ever been in my life, so how dare I put out any negative energy! From now on, I'm going to stop saying I don't like things unless specifically asked and I'm going to start putting forth as much positive energy as I can muster. After all, you get what you give, right? I owe it to myself and to everyone around me. If I'm going to be a total asshole, then I may as well have just died. And that's probably the scariest thing I've ever written throughout this whole blog.



"Fear keeps us focused on the past or worried about the future. If we can acknowledge our fear, we can realize that right now we are okay. Right now, today, we are still alive, and our bodies are working marvelously. Our eyes can still see the beautiful sky. Our ears can still hear the voices of our loved ones." -Thich Nhat Hanh

Is this real life?

On Monday, I had a colonoscopy, some more scans, another blood panel, and a bone marrow aspiration. I'd never had a BMA before and was pleasantly surprised that it was less of an ordeal than most people make it out to be and I conclude that I'd rather have one of those than a teeth cleaning.

They said I'd maybe hear back that afternoon or the next day, and I didn't. Then they called me at 7 am  this morning (seriously?) to tell me the results. My Mama texted me the day of the tests to wish  me well...at 5 am. Remind me to put my phone on silent tomorrow, will ya?

Anyway, turns out, there is no Aspergillus in my blood. Let me repeat that. There is NO Aspergillus IN MY BLOOD. One more time for effect: THERE IS NO ASPERGILLUS IN MY BLOOD!

There is also not any Aspergillus in my GI tract or my lungs, which I kind of suspected, since I hardly ever throw up or poo for hours anymore and I've been exercising without coughing up an octopus. And my white blood count is normal, which doesn't explain why I got the flu, but you can't win them all. And my intestinal flora is replenished, which again goes back to no rapid exits from either end.

There is still Aspergillus in my marrow, but it didn't actively show up anywhere else. We weren't really sure it would happen so soon, but the plan for the past two years has been to make my Aspergillosis go dormant. It looks like it is actually happening and I'll be able to continue my treatment as it is right now.

My life is INSANELY busy this week, so I don't have proper time to write about how I feel about this, or really even think about how I feel about this, so I'll have to revisit it soon, however, I will end with this: HOLY FUCKING SHIT!

"We are here to laugh at the odds and live our lives so well that Death will tremble to take us." -Charles Bukowski

McKinze's Crusade

This is McKinze. She is a little girl with Leukemia, which led to pneumonia, which led to Aspergillosis and she is fighting for her life.

Healthy McKinze before

McKinze's Aspergillus infection

Her family is searching for an oncologist familiar with Aspergillosis to treat her and I really hope they find one in time.

Here are links to McKinze's sites:
www.facebook.com/McKinzesCrusade
Twitter: McKinzesCrusade
McKinzesCrusade@gmail.com

I can't fathom her having to go through what I went through with Aspergillosis, AND she also has pneumonia and Leukemia. This terrible, aggressive disease needs more awareness so we can prevent kids like McKinze getting, and possibly dying from it.