Emily Hendricks-Jensen

@emilyhendricksjensen | contributor
Hi, I’m Emily and I was born in 1986 with a condition called VACTERL. It’s rare and you have to have 3 out of 7 abnormalities at birth to qualify, and I ended up being the in the 10% that has all 7. I have had 150 surgeries, landed a job at my small town newspaper when I was 16 and still managed to get a couple of bachelor’s degrees in journalism and creative writing. I was way over ambitious and it came all tumbling down on Feb 16, 2012 when I had a routine surgery that went really wrong and I ended up coding and spending 300 days in the hospital. I knew them I would never turn to straight journalism again. Instead, I write articles about chronic illness, things about ways I’ve found to cope and how to handle the emotions of it all. I’m also recently became the librarian for a small foster residential facility. My husband has VACTERL as well, we met at a support group in 2005 and got married in 2011. We live in Austin now and we love it.
Community Voices

2917 Days in the Making

<p>2917 Days in the Making</p>
Community Voices

How My Tragedy Built Me a Community

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?”

I'm a Woman Who Pees Standing Up for Medical Reasons

I’m a 29-year-old woman and, for the past 17 years, I have urinated while standing up. I’ll let that sink in a little bit. OK, are you back now? You good? I wasn’t born this way. For the first 12 years of my life I had urinary drainage tubes because my bladder did not form correctly and could not function. In 1999, between sixth and seventh grade, I had a long and complicated surgery that gave me a new manmade bladder, the ability to get rid of the tubes and just catheterize through my bellybutton. I felt like I had a whole new lease on life. It was fantastic and still is, with very few drawbacks, most of which got better and more manageable with time. But there’s one drawback that has started getting worse, and I’m scared it will continue to escalate: the harassment I get in public bathrooms when women look under the stall door and see me standing up in front of the toilet. I’ve been called all sorts of names in public restrooms over the years, most of which I’m not going to repeat here. I’ve been asked questions when I’ve come out of stalls after I’m done, some from curious people and some from not so curious people who are disgusted about what they think they saw and who they think I am. The most infuriating one was maybe two years ago, when I came out of a bathroom stall at a local restaurant in my hometown in Missouri, completely oblivious to the mother and daughter in the facilities with me. As I moved to wash my hands, the mother pulled her daughter, who couldn’t have been a day over 10, close to her and told her to “never go near people like that.” When I asked what she meant, I was informed I was a pervert and to go back to the men’s restroom where I belong. With transgender bathroom rights now being questioned, I know it’s going to get worse. The looks I used to get coming out of restroom stalls every six months or so are now happen nearly weekly, and it’s awkward and uncomfortable. I wish I could manage to avoid using public facilities, but I have to urinate every so many hours, so sometimes I have absolutely no choice. Women like me aren’t transgender, but we often experience discrimination. Our medical conditions and situations take us out of the “normal and acceptable” bathroom behavior category. I don’t mean to compare my experience to transgender people because I know the actual transgender community faces different and complex obstacles. It’s a struggle that may never end, which is ridiculous. There’s so much more in this world to be upset about, so why are we so determined to focus all of our attention on exactly how and where people pee? I just don’t get it. Image via Thinkstock.

VACTERL: A Rare Disorder Nearly Killed Me, but Brought Me My Husband.

Dear VACTERL, I love you, but I hate you. I don’t know why I was born with you. No, that wasn’t a philosophical question — I truly don’t know why I was born with you. Some say it’s genetic, others say it’s random. I’ve even heard people hypothesize there could be some sort of environmental factor playing into it. All I know is you are rare, you are complex and you can be unforgiving. Thanks to you, I will never have a normal life. That’s something I made peace with a very long time ago. I’m OK with it because I don’t really have any other choice, now do I? I will be on a variety of medication the rest of my life. Some of these medications have unpleasant side effects that I essentially just have to tolerate because living without it would be much worse. It’s hard to have many friends because my health can be unpredictable on occasion. This keeps my social life in shackles for days to weeks at a time. Because of you, I’ve had more than 100 surgeries and several close calls with death (including the one about three years ago my body is still trying to sort out). During the last close call I became severely malnourished to the point where I weighed roughly 70 pounds and my hair, which I later realized I’m particularly vain about, fell out. Then, when it finally grew back, it came out gray. My nails still won’t grow much, and my memory was severely screwed up. Even though my memory improved drastically, I still have to color my hair and wear acrylic nails. I’m missing one finger (my right thumb), a few organs and I can’t get pregnant. I have a metal and plastic contraption planted in my right breast and threaded up my jugular vein that is basically a permanent IV, because my veins finally gave up when I was in high school after 16 years of assault by needles of all gauges. I have metal in me that makes traveling by plane a hassle. Whatever they put in me nearly 30 years ago, when I was an infant, makes navigating through airport security a rather lengthy process because I tend to set off the metal detectors. Even though they both deny it, my parents got divorced in part because of you. I know there were other reasons as well, but you played a role. I sometimes miss holidays and other family gatherings because I’m hospitalized. I missed my niece’s first birthday party last year and that crushed me. I would have cried about it, but thanks to the lingering issues that remain from my bout of malnutrition, I can’t really cry. Even when I want to. Because of you, I’m prepared. I’ve lost three stepparents to cancer in eight years and, while each and every one of their illnesses and deaths sucked, it helped that I have so much medical knowledge. I knew what was going on and most of what their lab work results meant. I was able to look at each of their illnesses realistically in order to prepare myself for what was to come. Because of you, I was able to advocate for them when necessary. I had enough medical knowledge to know what to ask for. You’ve also given me a place where I belong. Thanks to the Internet and biannual conferences around the country, I have a support system like you wouldn’t believe. While you are different in every single person you show up in, you are also the one thing we have in common. I met my husband at one of those conferences, actually. That’s right, he has you as well. While you struck my life much more drastically than you struck his, he still gets me through the hell you are known to put me through. Because I have you, I can indirectly help others. My cousin, who is my age and I’m pretty close to, has a home daycare. She is quite familiar with you, so she knew what was going on when one of the children she watched was diagnosed with you. That was one of the moments I truly believed in fate. Because of you, I know deep down I am a fighter. I have long surpassed my initial life expectancy — something I’ve been told means I’m strong. I’m determined to live the best life possible. I’m so grateful I still have a life to live. For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post tocommunity@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to celebrate the human spirit? Like us on Facebook. And sign up for what we hope will be your favorite thing to read at night.