Settled

May 7, 2017

I never had a choice. With this body, this illness, this life. I never had a choice.

I never had a choice and this thought cycles through my mind as my friends and family lovingly tell me I need to just grieve and move on.

Grieve? Sure.

Move on? How?

Everything has been up in the air for so long that I feel suspended. Suspended between symptoms and diagnosis, answer and action. It's difficult to live in the tension. It's difficult to love someone living in the tension. There's a certain helplessness that comes with waiting and inaction. We want to be doing something, to be moving forward. We want momentum. Momentum at least makes us think we're improving some part of our situation.

But my brain surgery was a treatment, not a cure. My rib removal was a treatment, not a cure. My pernicious anemia is incurable. My hyperventilation-induced syncope is incurable. My tumor? Who's to say?

So when I'm told for the third time in one week by an important person in my life whose opinion I value that I need to just "grieve and move on," I kind of snap.

How can I move on when my illness is chronic? Which literally means “won’t ever go away.”

I want to scream this at the top of my lungs and throw my hands wildly around until someone gets it! I want someone to grasp that you can't just move on from chronic illness! It's there with you all of the time. It's with every breath, every pump of the heart, every opening and closing of the eyelids. That's kind of the point of it. Chronic illness is a lifelong, unwanted, unshakable companion that eats all your food, spends all your money, and never even takes out the trash.

You can't move on from chronic illness.

So what can you do?

I'm sitting on my front porch, on a swing that's weather-worn but moderately comfortable, and this phrase keeps rattling around in my head, "move on, move on, move on." It sounds like it’s coming from the squeak in the swing’s hardware that my friend swore he fixed. My leg out in front of me keeps me swaying back and forth lazily. The other leg is pulled up to my chest and the hand that holds my dripping ice cream cone is resting on it. I move to take another lick and my eye rests on the tree in front of me. It's magnificent. I enjoy studying the groves in its trunk and am appreciating its beauty. Tasting the sweet, creamy flavor, rocking gently, and contemplating the strong, rooted tree, as the wind blows softly around me, I feel settled in the moment.

It's the feeling I'm searching for at large. Settled.

I do not need to move on, I need to settle in.

I know that my family and friends are telling me to move on from the trauma of the illnesses, not the illnesses themselves, but you can't rush someone's response to trauma. I do need to grieve, but due to the sustained nature of chronic illness, the other side of grief here isn't moving on, it's settling in. 

I didn't have a choice.

But then again, neither did anyone else. That's what's so funny about this. I thought chronic illness made me different because it took away my control, my control over my body, my circumstances, my life. But no one has control. No one would choose my body's circumstances, given the chance. With choice, we'd all have healthy, fully functioning bodies. Maybe this is why when we do have health, we think we chose it, we think we have control because it's what we want. We do not have control over the outcome, whether or not our body's level of functioning matches our preferences and desires.

Before my illnesses, I had the illusion of control, but I have never been able to control my body's ability to absorb B12 from the food I eat whether I knew it or not. I cannot control the body that I have. The only thing I can control is how I take care of it, and what I do within its boundaries. The same is true for everyone else. This informs some of the variables my body has to work with, but it still isn't an A + B = C situation. Eating healthy and exercising does lessen the symptoms or outbreaks and guards against further complications but does not equate to a completely healthy body for me. Chronic and serious illness gives us the knowledge that we no more control the intricate processes and makeup of our body than the waves control the wind.

It's like a house that I inherited. It was just given to me. My inherited house turns out to be a bit more of a fixer-upper than most. Though I have to say, it is unique and has got a certain charm to it.

After I grieve, if I'm going to settle in, I need to reframe the relationship I have with my body.  

I remind myself that this is all a process. One that doesn't happen quickly or alone.

I'll take the first walk-through. I'll only see the damages and I'll wonder how many more are unseen. I'll need to check the date the roof was last replaced and I'll see that it hasn't been cleaned in a while. I'll be uncomfortable because it's different than what I expected and I'll be overly cautious at first. Once the keys are in my hand, I'll bring in professionals to take a look at the wiring and structure, making sure that is up to code and that the foundation is sound. If they find something that needs repair, I'll get an extra quote or two in order to be sure a repair is necessary and that I found the best option. I'll keep a record of what was done and another of who to call in case of emergencies. Once they've addressed all of the immediate concerns and given me instructions for maintenance, I'll start to clean up. It will require a deeper clean than I'd like and a lot more effort than I'd hope to expend. But it will be worth it. It won't look brand new or even like other houses, that's impossible, but I'll be fine with that because I know how it started and I appreciate the resources and work I've put into it. I'll have been getting to know it. Building a relationship with it. I'll have gotten familiar with it in the process. Knowing those floorboards that creek in the winter and the windows that stick after it's rained. Then I'll start to have fun with it. Decorating how I like, making the place my own. Eventually, I'll be able to sleep through the night and wake up in the morning without being confused about where I am. Sure, sometimes I'll wish I never inherited the place when I find leaks at inopportune times or discover costly repairs, but one day I’ll know that it is mine. I will know that I've taken care of it and that even though it's failed me a few times, it’s done its best to keep me safe and protected. One day, I'll be completely there. Dancing around, barefoot, to old country music, ice cream will be melting in my favorite bowl nearby and I'll be at ease in my surroundings. I'll be home in my inherited house.

I'll be settled. Not moving forward, not moving on. Settled.

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