Wednesday, March 13, 2013

the secrets we must keep

About a month ago, I posted a cryptic note on twitter. It's just the kind of post I hate, because a) what do they mean!?! and b) they're plain annoying. So here, let me repeat it:
"I hate to have to be the one to keep scary secrets. And later suffer for having kept them."

In the span of an extended weekend, my brother called me up with work troubles, relationship issues and--having gone to the cardiologist because he wasn't feeling well--health concerns. The kid has been working from home, lives in a town where everyone he knows he knows through his girlfriend, and was now under directive from his physician not to travel. That week, he was essentially alone. The worst part was that he wasn't even going to tell us.

He prefaced the conversation with the caveat that whatever he was going to tell me must not, under any circumstances, be repeated to our parents. And if I gave the slightest hint of freaking out, he was going to hang up and not tell me another thing. Apparently, his oxygen levels are low, his white blood count is low. He's relying on his pacemaker way more than the original 13%. That cut he's had on his ankle from last spring? Still hasn't healed, even with the help of a wound-care specialist. And then he said his cardiologist mentioned the possibility that if things don't get better, he may need to consider two words that have never been up for discussion in the last 30 years, two words that made my blood run cold: heart transplant. I'm not sure I even processed the rest of the conversation after that.

Apparently, this boy had transferred his records, found this doctor in St. Louis, went for preliminary tests and scheduled himself for a cardiac catheterization. He's had them before--they run a tiny camera in through the femoral artery and check out how the blood flow is going. He wouldn't tell me when or where this was going to happen and forbade me from telling my mother. I spent the next week of nights crying on Jon and days pretending all was cool--trying very hard to act nonchalant over the telephone. Jon was right, I had to respect his wishes, at the very least if I wanted information.

I see my parents often. And keeping this from them made me feel like a fraud. Listening to my father complain about the government or the fact that the old car didn't pass emissions made me want to stand up and scream at the top of my lungs about how he is wasting his energy on stupid shit that is NOTHING compared to things he really ought to be worrying about. And my sweet mother saying things like, "oh your brother hasn't called. he's probably really busy with work." It was killing me.

After weeks of subtle cajoling, I convinced my brother to tell my parents. It just wasn't right. They were upset--and looked at me with the eyes of the betrayed. But they realized that being angry was pointless. The kid was going to do what he wanted.

Monday, my brother had his cardiac cath. He did not allow any of the family to be there. His girlfriend, M, was there for him every step of the way, despite also supporting her family through a medical crisis of their own last week. Thank God for that girl. She texted and called us with updates and made sure he was doing ok. After the procedure, it was revealed that my brother had "coils" or Arteriovenous Malformations between his veins and arteries (that mix oxygenated and non-oxygenated blood, making it even harder to breathe and function). They were able to remove about four of them, but they "weren't able to solve the oxygen problem," whatever that means. So it wasn't a routine checkup. This thing was a full-blown procedure.

Who knows what the next steps are. Hopefully this new cardiologist is going to have some answers. This is the first time we were not there to see him groggy and high as a kite in the recovery room (but he did not disappoint over the phone--I'm pretty sure I got a Tupac Shakur serenade). That was really hard for us. But I can't even fathom what going through all this--and trying to protect us from it--must be like for him.

4 comments:

Ale said...

holy.........s******t!
your brother is super awesome. i mean he is just so tough. On the other hand if he was my brother i would seriously fly down there and beat the crap out of him. the ONE thing that would make people that love you GO CRAZY WITH WORRY is if they suspect you might hide any tough news from them!!!!!!!!! he needs to understand that!

Ananda Mind+Body said...

I'm sorry to hear this. your brother is trying to take on so much on his own! I can only imagine what you were feeling not telling your parents. I'm glad it's out in the open...it sounds like it means a lot to him to deal with it with his own doctors etc. and tackling it his way.

Guyana-Gyal said...

My head started spinning, reading this. I agree with Ale one hundred percent.




Librarian Girl said...

This sounds so hard, for all of you. Internet hugs to you. [[[]]]