This universe inside

Last summer I went to Maine with my sister, cousins and some friends for my cousin’s bachelorette party. I had a PICC line and couldn’t swim, was throwing up most of my food and the loop of bowel behind my stoma twisted on itself. I slept a lot and spent all day in the hotel room with air conditioning in order to muster enough energy to go out at night. I still had a good time largely due to good company, but it was a good time I fought pretty damn hard for.

This past weekend, I went back to Maine with the same group of girls with a couple of substitutions. We stayed in a hotel with a pool about 200 yards from the ocean. It was sweltering in a way that makes even healthy people tired. I crossed my fingers and hoped for the best.

On Saturday night, we all went out and had a nice dinner at a restaurant in town. After, I went for a long walk before bed. It was still hot and sticky out, but the wind blowing off the ocean felt like a big hug. It was one of those nights when you feel connected to the world. The waves crashed on the beach, this soft, wet percussion. The stars were bright.

It felt like I could look all the way across the universe. It felt like I could look all the way across my universe, the one I contain inside my body. I walked along the water and thought about my limits, the limits of that expanse.

The next morning, I deaccessed my port, put on my bathing suit and sunglasses, and went to the beach. I waded into the ocean. The water was cold, but not frigid. I floated in the shallows, rising and falling with waves. It was very serene.

I took some IM benadryl at lunch since I was deaccessed. I went swimming in the ocean again. I swam in the pool. I reaccessed my port. I ate a fancy dinner at a nice restaurant. I fell asleep at a reasonable hour, slept all night and woke up in the morning. The trip was completely uneventful concerning my health. My body worked fine the entire time.

It doesn’t feel like this is my body. It is like I borrowed one, a better model. It continues to demonstrate its new durability. Eating sweet potato fries with ketchup. Taking the train to and from work. Being in the office 3-4 days a week. Walking in oppressive heat. Swimming in the ocean. Thirty minutes of cardio. It is tolerant. Sturdy, even.

I am torn between being cautious in this capable new vessel and pushing all the limits. I am afraid of not knowing how far I can go. I am scared that all of this will go away.

But it’s here now. It feels like the universe inside me is expanding, the boundaries pushed further away with every beat of my heart.

3 Responses

  1. Judie July 17, 2015 / 6:47 am

    You deserve it girl! I have learned to keep up levels of function as much as possible so my body stays used to it. I need more caution on food vs activity. I don’t push to exhaustion, just pace and listen to your body. I live near the gulf and it’s my serenity in a crazy world and my beach walks are meditative time of healing!
    You are as prepared as anyone could be with your knowledge! Enjoy the new you.
    Judie

  2. Joanell July 17, 2015 / 10:28 am

    This is a beautifully written piece, on top of the hopefulness it gives me for others who struggle with these illnesses. So glad for you to have had this lovely trip.

  3. Karen Neill July 18, 2015 / 4:51 pm

    What a great thing to read. I’m having an awful flare due to the wildfire smoke out here, but I know that it won’t always be that way. I do hope you don’t have any set-backs!

    Karen

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