Seth Rogan Plays Me in the Movie

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Cancer is the new Black

I walked Rocky and locked the house up for the night. Sal was already in her pajamas and on her iPad, playing her games when I walked into our bedroom.  We had just finished watching the first episode of “Orange is the New Black" and I was still digesting it.

"Did that seem familiar to you at all?" 

She didn’t look up. “What do you mean?

"I mean, that show was like a metaphor of our lives right now."

Sal was very used to me walking Rocky and coming back stoned, full of random thoughts that made perfect sense to me, but baffled her.

"Huh?" Still not looking up. I’m not sure she was even listening, which bugged the shit out of me.

"How do you not see you are Piper and I am Larry?" Then: "Put that down and talk to me," I pushed the iPad onto the bed. She had started falling into her old ways of pulling away and isolating herself mentally, physically, and — worst — emotionally.  Deep talks were few and far between those days.

"Piper once had this exciting, exotic life but then grew up and settled down with Larry.  Just when everything was going for her, she had the rug pulled out from under her and was sent to prison.”

I took a breath, continuing my thought: “Larry found this beautiful, smart, funny girl; the complete package in his eyes. This was bliss. And then — by no fault of his own — he is forced to pivot practically his entire existence because of her sentence.”

I felt like I was rambling, but pressed forward.

"You are Piper. I am Larry."

"But I’m not going to jail," she said.

"Sal, in a manner of speaking, aren’t you already in a jail?  You feel trapped by your cancer and there’s nothing you can do about it. And just like Larry, I am on the outside looking in, but having just as intense experience."

She didn’t get it, which frustrated me. 

As we binged on the show over the coming days, I continued to be amazed how Piper and Larry wading and stumbling through their situation as a couple and individually mimicked our lives.  They would excitedly tell one another about their day-to-day triumphs and failures but the news never seemed to resonate, as the other had trouble understanding how their individual experiences wasn’t more important.  Anger, resentment and distance followed.

Holy shit…this was our life, and she still couldn’t see it. When we finished the series, I never brought it up again. I was angry and frustrated.  

And incredibly ashamed.

How dare I? I wasn’t the one dying. Who the fuck did I think I was? It made me feel bad about myself, and I committed to working harder at making her feel better. I’d get upset when I didn’t feel like I was being acknowledged for putting in so much effort.  Then I’d feel ashamed again. 

This went on and on, and as surgery started to get closer, I began to get more anxious that she would die on the table.

My shrink and I talked about this anxiety, and throughout December, I began to coagulate an idea about where it was stemming from, but I fled from it: it was simply too awful to accept, too callous to think, too selfish to even say out loud.

Once we were on the other side, and I had kissed her forehead while she lay unconscious, recovering in ICU, I had the space to breathe and reflect. I could allow myself to admit the inconvenient truth that had been burdening me:  

A part of me would have been relieved if she died. This nightmare would finally be over. I could move on with my life.

And that is scary as shit to admit.

I got an email yesterday from someone whose wife was diagnosed with MS many years ago and wanted to share his experience as a caregiver:

"I had feeling of poor me, when she was the one going through it. Guilt from being selfish. Guilt from constantly feeling like I wasn’t doing enough. Guilt from having to go back to work at some point."

This thoughtful note helped me get around the corner on my feelings, and understand it’s okay not to have shame with this thought anymore.

I am an individual having my unique experience in life, and I have the right to my feelings.

That’s even scarier to write, but I’ve started on a path this week that is helping me realize it’s okay to have these types of thoughts. To be selfish. To self-preserve. To not want to be dragged like a kite behind a kid running through the park. To be free of someone else’s problems. 

Sal making it through is nothing short of incredible, and I’m not scared for what’s to come anymore.  I want to continue to work hard at being more honest with myself, more vocal in my needs and to live a more authentic life.

About two hours ago, when everyone had finally gone: "I want to tell you something, and I don’t want you to take it the wrong way."

"I’ll do my best," she said, putting her iPad down, and giving me her full attention..

And with a quivering voice I told her what I had been feeling.

She smiled and looked at me, “that’s normal. Of course you do. This sucks.” She took a breath, “and one day, it will be over.”

That’s gonna suck. 

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