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How My Tragedy Built Me a Community

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Nearly everyone has a moment in their life that gives them a “before” and “after.” Mine is something my entire family refers to as “Denver.” One word. One town. So much torture.

Before Denver, I was a completely independent woman. A newlywed with a thriving freelance writing business. Yes, I had some health struggles, but I had a rare genetic congenital birth defect, so it was to be expected. I was going to get sick from time to time, certainly, but this was a whole new level of sick. This made meningitis look like the common cold.

I fell asleep or passed out on a CT scanner bed on February 16, and that’s all I remember between that night and January of the next year. Over time, I have discovered “memories,” which I have been told aren’t real. They’re just things and events  I’ve heard so much about that my brain thinks it’s something I know because I saw it.

What came next is something I can tell you only because it’s been told to me… by doctors, nurses, family, friends, my parents, in-laws and husband. I’m not sure whether my mind depicts it accurately, but I remember the ICU room I was first in. I remember the Montel Williams infomercial on repeat on the screen of the TV mounted to a corner. I remember a lot of beeps, and I remember thinking I’ll never come out of this alive and praying that my family would have the good sense not to spend a small fortune on my funeral. I came out of my mother like a blazing wildfire, I want to go back into the ground weak and ready to be good soil for some pretty flowers.

When I was released on May 5, 2012, I had lost 35 pounds. I was malnourished, and I looked like it. I was supposed to travel to Europe with my husband that year while he finished his Master’s, but my health simply wouldn’t allow it. Instead, he flew with me to Missouri, where my family is and where I was born and raised. He stayed just long enough to help me get settled, then I kicked his butt out of the country so he could finish his Master’s. I knew, thanks to the cluster that was Denver, he was going to be the primary financial provider for our marriage for at least a decade. He needed that Masters.

For a month I lived out of the hospital, and it was glorious, but one night I had a sudden sharp pain in my abdomen that sent me back the local ER, which sent me to the big ER by ambulance two hours away, where I lived for awhile. They then sent me back to to my hometown, where I lived in an assisted living facility. Then it was back into the hospital. All told, in the year of 2012, I spent 300 days hospitalized.

After Denver, I required oxygen to breathe, and even then I had issues getting enough air. I was so malnourished my eyes couldn’t make tears, my bones showed through my skin and my hair fell out, first in strands and then in huge clumps. I had to turn my past-my-shoulders long, blonde hair into a buzzcut. When my hair finally came back, it was gray. I was 26.

As cliche as it sounds, there are life lessons to be drawn from this. Not all of them are great big lessons — some are tiny little pearls of wisdom you don’t get for years later. You find out who your friends are. That’s a cliche that’s been done over and over, but it’s the truth. Your friends are the ones who hold you when you don’t think the pain is ever going to end or who flies a thousand miles from their home to yours, even though she’s newly pregnant, just to be there for your birthday. Real friends bring you cards and letters and send funny texts. That’s what they do. I’ve learned that.

I’ve also learned to speak up for myself. To say, “That’s not OK” when it comes to certain medical procedures. I’m good with not doing medical procedures that make me sick or uncomfortable unless the doctor gives me a specific outcome their looking for. Doing a procedure just to do a procedure isn’t practicing medicine; it’s just plain practicing.

I’ve learned that even if you swear you aren’t vain, you are, at least a little. When those big clumps of hair fell out, my heart dropped to my chest. I cried (well, without decent working tear ducts, I just looked like I wanted to cry). It wasn’t just hair, it was me. My identity was falling out, and there wasn’t a damn thing I could do about it but cry, so I cried, and I cried a lot. My hair gave my face its shape, its beauty, its slope… or so I thought. Turned out, my face was just fine on its own.

I’ve discovered that some things are just little and inconsequential as hell and it doesn’t matter whether or not you think they’re that important, especially when it comes down to your health. If your pancreas and liver are crap, you don’t have to drink a whole bottle of bourbon (even though, some days I’m sorely tempted) — a single glass of wine will do, if that. Limiting your fats and sugars can get tricky, but there are ways to get around it to have some decent tasting food that won’t fry your damaged organs.

Finally, I’ve learned what the word “safety” really means. Safety is having a background of friends, family and the ones you trust to have your back and will take care of you even when you can’t take care of yourself. The people who know how much women underrate pain to medical professionals and how much medical professionals think women exaggerate about pain, so they know to argue to fight to get you proper relief when you desperately need it. Over the past six years, I’ve built a community of friends, families and loved ones. As I’m starting a new career journey, building a new career community, and I’m loving it.

But what I love more is the people who have my back from that first day when I woke up in an ICU room in February 2016 and asked, “What the hell happened?”

Getty image by diego_cervo

Originally published: July 16, 2018
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