Breathing in the Dark

Posted by: 
Erin Evans

I was admitted into the hospital six days ago with my lung function being the lowest it’s ever been in my life. I feel like I've been here for almost a month.  Anyone who's ever spent a lot of time in the hospital knows that five hospital days feels closer to 30 non-hospital days.  There are times in here when an hour literally feels like an entire day.  I always think that I will be able to get things done while I'm here or that I'll at least read several books and catch up on e-mails, but every time I've been in here, the moment I am alone in my room with those primer gray walls, the burning fluorescent lights, and the constant beeping and blinking of machines, I am instantly transformed into a "patient", and the waiting game begins.  There's something about being in a place among people who are all watching or waiting, surrounded by that familiar hum and buzz of a building that never rests that puts me in a certain state of mind.  Even when I sleep, it’s not really sleep, it’s just a different kind of waiting patiently.  

A few years ago I went on a whale watch in Maine for my birthday.  Whales have always been my favorite animal, although I never really understood why, except that I'd just always felt a strong connection to them.  In between pointing out the tip of a whale's tail or the almost unnoticeable small burst of water shooting into the air in the distance, the tour guide told us a lot of facts about whales.  The one that really stood out to me is that whales never fully fall asleep.  If they do they will drown.  They have to constantly be thinking about their next breath, when they're going to come up for air again.  There is rarely a time that I'm not at least somewhat aware of my own breathing and my lungs, at night I'm even more aware of it as it’s often more difficult to breathe and therefore hard to fall asleep.  Lying in bed I often think about whales hovering half asleep in the dark depths of the ocean, half sleeping, half counting down the minutes before they will resurface and breathe again.

My first hospital stay I was 24, and it was really the first time I understood how sick I was, that I wasn't exempt from all the hardships that come with having CF.  I'd always been so "healthy" and now here I was at the mercy of my illness and I had fifteen days to sit in bed and roll it over and over again in my mind.  On the nights when I couldn't sleep, which was most nights, I would go for long walks around the hospital.  I'd wander up and down the different floors and wings.  Even in the very early hours of the morning the hospital still had that hum and glow that made it feel like I was walking around in a dream.  There were no dark rooms or completely shut off lights, the machines kept beeping and even then you could feel the weight of the patience that hospitals hold.  CF is a lot like that, even when things are quiet and at rest it’s still there, waiting for you, like a steady hum in the darkest part of the night, it cannot be turned off.  

It wasn't until I went into the hospital that first time that I finally understood why the verb and the noun "patient" are the same.  Having CF and knowing in the back of your mind that statistically you only have a certain number of years left, you want to move quickly through life to the next thing, you don't want to sit around waiting, or wasting time doing something you don't love.  But at the same time you are always being (a) patient on some level.  No matter how rushed and chaotic my day is I know for sure that two or (lately) often three times in my day everything will come to a screeching halt and I will sit by myself with the white noise of my vest and nebulizer and I will once again wait patiently as I try to make my body do what my brain wants it to do: which is get better.  Even when I'm not technically "sick" I can never stop being aware on some level of the state of my breathing.  Just like the whale, if I stop thinking about it I, too, will drown.

Sunset at Fletcher Allen Health CareThis is now the sixth time I've had to stay in the hospital for a few weeks time and yet it’s the first time I've gone into it knowing exactly what to expect.  I know that waiting patiently and being a good patient are one in the same and that the only way to get through a hospital stay is to know in advance that your patience and your ability to wait for things (meals, showers, medications, IVs, etc.) is going to be tested.  By now the steady hum of the hospital is more of a reminder to be patient than a reminder of what I am at the mercy of. 

Yesterday my best friend came to visit and brought my godson Wolfy.  As they were getting ready to go Wolfy said, "I want to stay and watch Erin get better".  I looked over and he was watching me very intently, maybe hoping to see me rise out of bed and magically transform into someone healthier and able to go home.  The thing is a lot of my time here feels a lot like that, waiting patiently for my body to heal, watching myself get better so I can go home, getting ready for that next big breath of fresh air.Wolfy

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