Dazed

Is that the hope?” I ask. “To go back to being the old Ned?” “I mean, it would be ideal, but it’s just not realistic,” he says. He shakes his head. I open my mouth to speak, then close it. What can I possibly add? Ned has just summed up what’s taken me almost a year to untangle for myself. There is no restitution for people like us, no return to days when our bodies were unscathed, our innocence intact. Recovery isn’t a gentle self-care spree that restores you to a pre-illness state. Though the word may suggest otherwise, recovery is not about salvaging the old at all. It’s about accepting that you must forsake a familiar self forever, in favor of one that is being newly born. It is an act of brute, t terrifying discovery. -Suleika Jaouad “Between Two Kingdoms”

This memoir was recommended to me. The author was diagnosed with an aggressive form of leukemia in her 20s and is speaking with a fellow survivor in this quote. Obviously her story differs from mine, as leukemia is a horrible painful disease with extremely harsh treatments. But what did resonate is how confusing and lost you can feel once you’re ‘well.’

Franky I’m struggling a bit.

It’s ok. I’ve sadly had enough surgeries to know this happens after (at least for me).  The mental game.

And obviously it happens to others as well, I just don’t have many people that can resonate with my strange set of diseases and circumstance.

I know it will get better. There is just this uncomfortable liminal space after you get ‘well’ in which everything is frustrating. I should speak for myself. I don’t feel like myself. I guess I don’t know who I am anymore…and that is uncomfortable. One has to have a certain amount of patience to allow the body to recover, especially after a less intense surgery, because you feel like you can do most things, so you do them. And then the next day, it hurts. And then you ruminate and wonder if you’ve really fucked things up this time. And the cycle repeats.

You ruminate as to when they are going to tell you they missed something else. Or that some other part of you is broken.

I’m not broken. I know that. It’s just the foreboding joy of wanting to be happy the cancer is gone, but the apprehension makes everything feel hard. I haven’t slept the last few nights, which just intensifies it all. My soul feels tired.

Then life’s questions start to roll around in my brain.  Trying to figure out why I survived…again; when so many don’t. And what positive can I do for the world to ‘make up for it.’ It seems to me that if I’ve lived through all this shit, I should be doing something helpful for the world (I know, ick to shoulding oneself, but it’s been on repeat since the autoimmune thing in 2013.)

It’s a strange dynamic. And every moment is a flurry of emotions.

In the meantime, I try to focus on the important things: Gratitude. Playing with McKenzie. Appreciating the people that hold me up. Hugging Jeremy tight every chance I can. Enjoying the beauty in the moment.

All the while, letting the constant flood of competing emotions just flow through me, doing some form of meditation (whatever it looks like) each day, getting my job done, maintaining the house as best as I can, and holding myself together.

I’m not entirely sure what all is next, which might be adding the heaviness. I do know that I get another xray on Friday. I see my endocrinologist later this month and I’m sure she’ll want to re-run the bloodwork to check the tumor markers. I also see the pulmonologist later this month as well, which works out cause he can review the xrays I already had. I should also get the results of the molecular testing they did on the lymph node, which will need to be provided to the oncologist in Portland to see if he has any additional recommendations based on that.

But, the good news is, for the moment, nothing major has to happen. Which does make me happy.

I guess I just need to take day at a time as a navigate this ‘act of brute, terrifying discovery’ once again. We’ll see who I emerge as.