NOT KNOWING

In my last post I described a moment in which I allowed myself to think, “Things are really going well for us.” This sentence was significant because I formed it very deliberately, feeling out each word in my head against my strongest instincts to not let myself get too hopeful.

There’s a second reason why this thought was significant, though, and that reason didn’t even occur to me until several minutes after the thought came into existence, which just amplifies the reason why it’s so very significant:

I had this thought while L was still on TPN.

If you had asked me a year ago – a few months ago, even – I would’ve told you I couldn’t feel like things were good while L still had a central line. And there I was, gushing to myself about how great my life was going without even registering that L still had his line.

I’ve already outlined why his line is the bane of our existence. That hasn’t changed. But somewhere along the way, it’s become so normal for us that it doesn’t feel horrible anymore. We’ve adapted.

For a very long time I clung to the thought that someday L would be fixed and we could move on. It took me a very, very long time to wrap my head around the fact that we might never reach a point where we could say things were finally, definitively good. I think in the first weeks and months my brain might have refused to entertain that notion out of self-preservation – if I had really comprehended from the start that we would be living in this state of NOT KNOWING for the rest of our lives I’m pretty sure I would’ve short circuited right then and there.

So I spent L’s entire first year devoting all my energy to trying to get rid of his central line, and thinking that once it was gone we would finally be in the clear to move on with our lives. I threw a party when he became line-free. And I explained away the signs that he was slowly declining, even though in retrospect it is obvious that he still needed TPN. That summer was The Bad Summer, and it was hell – but GI was trying to let him succeed without TPN, and I refused to admit to myself that we might have to take a giant step backward until his labs suddenly plummeted and we wound up in the hospital for an emergency blood transfusion. Even then, I fought tooth and nail for anything that might keep us from having to re-place a central line; I raged, I cried, I yelled at residents; but he needed it back, and back it came.

After our first round of trying to shed L’s line failed miserably and I realized how much better things were for us after we took that big step back, I thought that I had become more okay with NOT KNOWING. But I hadn’t, not really. I had realized I probably needed to be more okay with dwelling in the in-between space – progress! – but I still spent all my energy trying to claw back out of it. We spent seven months last year living month-to-month, thinking all the while that maybe this next appointment will be the one where she says we can pull it, or maybe just one more month, and now just one more month again. Only he didn’t gain weight, and at every appointment he showed one deficiency or another or several. But going without TPN wasn’t failing either; he didn’t lose a significant amount of weight and his deficiencies weren’t that severe. And so we waited, in medical purgatory. I thought that I had grown stronger, but I still had a long way to go.

There is not a single point at which I suddenly became okay with that pervasive NOT KNOWING. But there have been several small moments that made me realize how far I’ve come. That day in the car was one of them – for a brief moment, the fact that I could forget about TPN took my breath away. Another came last winter when a fellow intern and I were commiserating over job search woes; neither of us knew what was coming next, and I recognized in her the same kind of overwhelming anxiety-riddled impatience with NOT KNOWING that a few years ago would have kept me up at night and tied my stomach in knots, and realized that instead I was strangely calm in the face of this particular round of NOT KNOWING.  

Don’t get me wrong on this – I have not transcended to a higher plane of zen acceptance of uncertainty. I had not found some noble way to be at peace with the fact that the final weeks of my already-pitiful intern income were looming and if I didn’t land a job we would be plunged into exponential debt almost immediately, andplusalso I might have made a really bad gamble with signing on to be a 30-year-old intern to begin with and my whole entire future was hanging in the balance and could come crashing down at any minute. No, I can’t say I was really at peace with that. If I were to guess, I’d say the parts of my brain that should’ve been going up in flames about all that are just burnt out. They have been overworked to the point that they have packed it in and are waving a permanent white flag.

But you know, if those fried neurons allow me to have moments of calm where there used to be moments of rage and panic, I’m okay with being a little burnt out.

I promised I wouldn’t spit shine things that ought to stay ugly. I would never, never, promise someone going through hell that things will get better, because sometimes they don’t. But honest doesn’t mean devoid of hope. So here is an honest message of hope for anyone who might find these words at a point when you think you can’t keep going:  

Sometimes it doesn’t get better. But you get better at it.

Follow @ThisGutsyLife on Twitter

Advertisements

4 thoughts on “NOT KNOWING

  1. Pingback: On World Prematurity Day, here’s what “thriving” really means | this gutsy life

  2. Pingback: Line free is the way to be….I think….probably….Yes, okay, we’re definitely maybe ready for this. I think. | this gutsy life

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s