The Cathedral of Belief

I have a GI bleed. This isn’t new or surprising, I have had bleeds off and on for years. But this is worse. Worse enough that I called to ask at what point I should go to the hospital. After some back and forth, we decided I could stay home as long as it wasn’t enough blood loss to significantly drop my BP or to alarm me personally. So home is where I am.

After approximately 4,679 phone calls and emails, a scope was scheduled for me for this week. Similarly, I have previously had 4,679 scopes. I am a frequent user of hyperbole but I honestly can no longer remember how many scopes I have had. I have had several flexible sigmoidoscopies, several full colonoscopies, a few proctoscopies, several endoscopies and the very rare and elusive colonoscopies via stoma. It’s like my own demented version of Pokemon Go except they don’t happen outside and I have to drink two bottles of what smells like lemon Pledge and I never wanted to catch them all and it’s all bullshit.

Despite the general terribleness of my GI tract, which is, as a general rule, quite terrible, things are improving. I’m not sleeping all day. I am getting back into a rhythm of sleeping at night. My cousin found me a protein shake mix that I can drink safely and which tastes good instead of the least bad. I’m not bruising everywhere and haven’t had blistering hives for a while. I have gained back a few pounds which is a good sign.

I also finally feel like I have my mind back. For me, it has never felt that my actions were what anchored me to my place in the world. It is my thoughts that ground me. We are never more wholly ourselves than when we are in the labyrinth of our own thoughts. We are what we think because what we think turns into what we believe.

Belief is a powerful thing. Maybe the most powerful. It is that ether that makes us more than our bodies and that holds us together when those bodies fail us. Believing strongly in a choice you make confers upon you the ability to make the most of that choice. The power of the words swirling around your mind cast a magic upon it that makes that path stronger and you stronger for being on it. It makes it easier to be grateful and to be happy.

I struggle a lot with my personal outlook and how I portray my life to others. Specifically, I struggle with being happy and what that means for me. I am happy, often. But there’s a guilt there, that I know my experience is sometimes dissected and applied to other rare disease patients for whom this may not be their reality. I don’t want people to think this life is easy just because I’m happy. And there’s an anger there too, that I shouldn’t be happy when I am frequently so sick and my friends are so sick or the existence of rare disease patients is so very precarious. There is a sharp side to this happiness.

What if I had chosen this life? What if I had somehow chosen to have these diseases and the broken elegance of this struggling body and everything else that came with it? Would believing in that choice have given me the strength to feel happy without this internal conflict?

I didn’t choose this life. But recognizing that it is still a good life is a choice, too. A powerful one. Maybe the most powerful.