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I Don't Want to Live Like This

I Don't Want to Live Like This

My infant daughter had unexpected surgery at three days old. We knew she would need it eventually, but anticipated it would be around 6 months. Instead, things were insane for the first two months. That first surgery included an external bag that drained a blocked kidney, and after many subsequent tests and appointments and emergency hospital stays with scary infections—always in downtown Seattle or the children’s hospital wherein both require navigating hellish traffic and a near impossibility to fit into our already hellish schedule—she had major surgery to repair said kidney at only 5 weeks old.

Lily & Mama
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I hardly remember any of it. There was a lot of exhaustion, forgetting to eat or drink anything,  tears, minimal sleep, guilt for how it was affecting my other children, and the realization that the NICU is one of the worst places on earth and my heart is with every parent whose child spends any significant amount of time there. And for as hard as it was on my family, I’m quite certain that a baby died one day when we were there, in one of the other rooms (our hospital had three rooms with 4-8 babies each). That added a lot of perspective for how lucky we still were in so many ways.

Something else significant happened during that stay, though. Because our sweet girl’s kidney was the size of a can of Coke in her little 9 pound body, I had to have a caesarean lest she either get stuck in the birth canal or her kidney burst during her exit. During the procedure she was a little difficult to get out and there was quite a bit of yanking and pulling for awhile. That meant I was wheelchair bound for most of her initial week long hospital stay. The helplessness of not being able to open doors or get myself anywhere or pick her up on my own was awful. I tried so hard not to overdo it but still had multiple nurses and my husband jumping to do things and stop me before I hurt myself.

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And then one day, when she was 4 months old and we were mostly in the clear, I took her in for yet another follow-up. My back was sweaty because I get way too hot easily, every single muscle from the top of my neck to my tailbone was screaming at me to just get off my feet already, my rosacea-inflamed cheeks were on fire, and I was exhausted to the point of delirium because I simply don’t sleep well. She slept great, upwards of 12 hours through the night at 8 weeks, and my husband has her be his alarm clock and he takes the first feed of the AM. 

The problems were all me, my inability to do something simple like sleep and take her to a medical appointment. And, it occurred to me, I’m nearly 37. Someone my size will need knee and hip replacements—women 75 pounds less than I am in my family have needed them—and quite possibly I could be wheelchair bound again in the next 20-30 years as my body breaks down from carrying so much extra weight on top of the autoimmune illnesses I have.

I looked in the mirror and I wasn’t sure who was looking back at me. The woman wasn’t just big but she was miserable. In pain and barely getting through her life. Her eyes said, “I don’t want to live like this.”

I knew it was a significant moment. I didn’t know why, but I knew I needed to remember it. I got out Xena, my iPhone, and clicked a few pics into her memory banks and went on my not-so-merry way.

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There’s no single instance where everything clicked together, but my SBC (sister by choice) started coming over on Wednesdays around that time. She has become so healthy in the last year. It’s not just that she has gone down nearly 100 pounds, but she’s STRONG. Strong as in this lady stacks 200 pounds of weights onto her pelvis for hip thrusts and laments that she can’t do more until she’s able to join a gym. 

She sent me some progress pictures of roughly when she started changing her eating and working out and, at the time, the current pic of her in similar clothes. Her body looked amazing for sure. She stood taller and just looked fit and athletic. But what caught me was her eyes—in the photo from last year her eyes said, “I don’t want to live like this.” Her entire body screamed in agreement. 

And I knew the look. Not recognized it—I knew it. It was the same one in my eyes when I was in the hospital bathroom.

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To put words to it, that look says, “My body is a prison and my soul feels there is no escape. I have tried. I have tried everything. Nothing ever works. Maybe it’s me. Maybe I don’t try hard enough. But I don’t want to live like this, in constant pain and under persistent scrutiny from myself and most who see me. What even is a life like this?”

In my knowing what it is to live that life, my seeing more than her body but into her soul, I recognized myself. For a few days I felt envy. Some parts had gone more smoothly than others, but when she changed her eating habits weight started coming off. That felt good, so she added strength, and she loved it and her body reflected her effort. 

Things never work that way for me. I put in the effort, I steel my willpower, and nothing. Maybe a couple of pounds. My history of weight loss is one also of gain. It’s nearly impossible to get it off, and I follow extremely strict diets so perfectly that when I don’t get results the professionals, be they a medical doctor or diet program coach, don’t believe that I’m being honest. Then in discouragement I give up and have a slice of Dave’s Killer Bread three times a month and weight jumps back on.

 

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And I think that, once I discovered The Body Keeps the Score and the effects of severe childhood trauma, the beauty for me was that so much of my experience suddenly made sense. There was a release in knowing that my belief that I don’t try hard enough was wrong and needed to be eradicated. My body suffered so much and carried so much stress and inflammation from the trauma that by 30 it began attacking itself. But the downside is that somewhere deep inside of me I just became resigned to this body. Accepted that I don’t have control and I guess I can try but this is it. 

This is my life. 

But also I don’t want to live like this. 

So now what?

More to come on Thursday, 8.9.18

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This One Fucking Life

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