Christina Jennings

@christina-jennings | contributor
Christina ‘Mouse’ Jennings is a 30-year-old, congenital heart disease survivor. She lives with a rare heart disease known as tricupsid atresia.  She has gone through many surgeries including four open heart surgeries. She has outlived doctors’ expectations year after year. Mouse is married to her husband of two years and lives in the Iowa City area. She has her “dream job” at the very hospital that has continued to shape and save her life, The University of Iowa Hospital. She enjoys writing about living, dying, and finding peace and faith in the hardest of circumstances.

Tricuspid Atresia: I Wear Makeup to Feel Healthy, Not Pretty

It sounds ridiculous, and as a 30-year-old, I actually feel ridiculous writing about this, but I just have to. I have to because it’s more than just about makeup. It goes deeper — deeper to a different kind of level and a different kind of difficulty that’s associated with people who live with invisible illnesses. All illnesses are hard. What I think is most hard are ones that are invisible. There are illnesses other people have a hard time understanding. They don’t see the constant psychological and physiological struggles people go through day in and day out. I personally live with a few illnesses myself, including on and off depression and anxiety and the biggest one is my rare heart condition, tricuspid atresia. On the outside, I look completely “normal.” To others, I look completely, healthy and happy. But if you wipe away the makeup I put on almost every morning and that pretty pink blush I almost never leave the house without on my cheeks, I look sick, tired and like there’s something wrong with me. I know a lot of woman who joke about how they look “tired” without their makeup on, but it’s different with people who are actually constantly tired and are sick. It’s that depressing “I don’t feel good about myself, I don’t feel pretty today” feeling and taking it a few notches deeper. Without it on, it’s more of a realization and reminder that I am sick. During my 10-day hospital stay after my last open heart surgery (the fourth one I’ve had), I could barely walk five feet without being out of breath two days in. But before I would even have considered getting up to do my “daily” walks I had to do that one thing first: Put on my makeup. I’m sure I looked pretty ridiculous — a 25-year-old woman who just had major open-heart surgery — and here I was concerned about what I looked like. Most people might chalk it up to being superficial, but it wasn’t that and it never has been about that. It was and is about feeling healthy, even though I’m not healthy. When I meet people for the first time and they hear I have a heart disease (and that I’ve had four open-heart surgeries, two ablations, countless other surgeries and, oh yeah, I also have a pacemaker), I usually get the same type of look. It’s a look of shock and confusion. Most people’s responses are almost always the same: “Wow, but you look so healthy!” Well, yes, I do! I look so healthy, and what’s even better is the magic potion I put on my face makes me feel healthy and normal, too! I feel a certain sense of pride when people tell me they would’ve never guessed I had a heart problem. That’s because I’m reminded of my dad’s advice to me growing up with this heart disease: “Just live your life as normally as you can.” I never really understood the significance of his advice, but over the years now, I get it and it’s because acting normal — or, in my case, trying to look healthy — is the foundation of feeling normal and healthy, too. And so, because I love looking and feeling so normal and healthy, despite what my medical records may tell you, I will continue to wear my makeup and the blush I can’t go a day without, no matter how ridiculous and superficial people might think I am. Because even if people know some of your life story, you don’t ever need anyone’s approval, whether your face is beautifully natural or beautifully “makeupfied.” We want to hear your story. Become a Mighty contributor here . Lead photo by Thinkstock Images

Choosing to Have Children Despite My Tricuspid Atresia

Over the summer I went to my first writers workshop. While talking to a fellow writer, a woman around my same age, an author who wrote children’s books, we got to chatting and asking each other the typical get-to-know-you questions. But when you’re at a writing conference it usually starts with, “So what do you write?” I answered shyly, still uncomfortable with this question. What do I write about? How can I put it into words? I don’t have a particular genre. And then the corniness came out: “I just like to write about inspirational things. Sometimes it’s people I have met and learned from, people who have inspired me; or sometimes it’s my own personal experiences. But eventually my goal is to write a memoir.” She looked at me with surprise, the usual surprise I get from people when I tell people this is my ultimate life goal. I usually guess what the person is thinking when I tell them this: “Of course, some young 30-year-old wants to write a memoir about her life. How cliché. I mean really what has she gone through at the age of 30, that she wants to write a whole book about it?” “Oh, really?” she continued. “What about?” “I have a heart disease, I have outlived doctors’ expectations and continue to year after year,” I said. “I want to write about it in hopes to inspire other heart disease survivors or I hope I can provide some hope to mothers and fathers who have children living with little prognosis.” “Oh, wow, that’s awesome!” she said. “I couldn’t imagine living with a weight like that.” Up until that point I never had the right words, but she had nailed it. That “weight” was a true weight. Survivors guilt is a real thing, and being constantly reminding (especially every six months at my cardiology checkups) that I’m doing so well, especially for only having half of a working heart, is a remarkable thing. So the weight I feel is the constant pressure I put on myself to do better, to be better,and I am constantly trying to find my purpose. Sometimes people searchtheir whole lives to find their purpose, but the pressure I have to find mine before it’s “too late” is an anxious pressure. “So what is your disease called?” I gave her the quick non-sob story about my four open heart surgeries, my pacemaker and living with my heart disease, tricuspid atresia. What came nextwas the first time in my life I had every reason to cry, but somehow, in some miraculous not-myself way, I kept my shit together. Me, someone who could cry at the site of a dead cat in the middle of the road, didn’t cry at this. “So do you have any kids?” she asked. “No,” I said. “Well that’s good,” she responded. Wait, wait… what did she just say to me? Well that’s good? Good that we don’t have any kids? What did she mean? I wanted to scream, reach across the picnic table we had been sitting at and pull one of her perfectly curled hairs out. What did she mean by “that’s good”? Like we shouldn’t have kids because I have a serious heart disease? Like I shouldn’t try to live my life as normally as possible, like I shouldn’t still do the things I want to do (like become a mother) because I was born with a disease that makes my life expectancy less than hers? I shot back at her without hesitation: “No kids… well not yet anyways. We’re actually going to be going through surrogacy soon; I can’t safely carry my own child.” I stopped for a brief second and imagined her inserting her petite foot in her own mouth. She looked at me with surprise. “Oh, really?” She continued to ask even more questions about this. I was actually happy to answer all of them. “Because of my heart disease, my doctors don’t think it’s a safe idea to carry my own, so instead of putting myself and our baby in danger; we decided to go this route.” Since this conversation happened a few months ago, I reflect on it almost daily. It bothers me more than it should, but I am also thankful for it in the most ironic way. I’ll never understand how people can assume such things, why someone might assume that just because of my heart disease I wouldn’t have my own children. I may never understand how people can have such judgment and opinions on a person’s situation, but I am grateful for that day and for that conversation. Yes, I have aheart disease, and yes, choosing and deciding to have children living with a sooner-than-desired “expiration date” is hard, but what would be harder is not living out my dreams because of my heart disease. My hope for anyone and everyone living with unthinkable, disheartening and life-shattering sadness like the sadness and the realization that your life is going to be coming to an end, or that your life might be shorter than you thought, shorter than you want, my hope is that those people keep living… and keep living like you don’t give a shit, like you don’t give a shit that people are surprised you’re doing the things you’re doing knowing you might be dead soon. Keep surprising all those people. It’s important for everyone in this world to hold on to the hope in their hearts, but for the people living with shortened life expectancies, living with unbeatable odds, it’s important for us to keep going after what we want in life. After all, that is what keeps us alive. We want to hear your story. Become a Mighty contributor here . Photo by Tharakorn

Learning to Cope After Surgery for Tricuspid Atresia

Christina. Something amazing and scary happened four years ago. I faced death and I kicked its butt. Actually I’ve been kicking life’s butt ever since I was a baby, when I was born with a rare congenital heart disease known as tricuspid atresia. But, the butt-kicking four years ago is my favorite. I’ve had a ton of surgeries in my lifetime (and, by tons I mean if I counted them on my fingers it would take both hands). Although I’ve had a lot of surgeries, the one four years ago was my first one as an adult. It was a serious, life threatening surgery; my fourth open heart procedure. It was the first time that I would sign away my life to the doctors. It was the first time I would draw up a will — with a lawyer I had never met before. I barely understood what I was signing, but I signed it. I stated my wishes: what I wanted my death to look like if it got to that point. Yes, please resuscitate me, but no don’t let me live like a vegetable.  I learned that life and death is confusing. It was the first time I truly understood the magnitude of my heart disease, a disease that has no cure. So, four years ago I went through a terrible and painful surgery. They cut out a piece of dead tissue from my heart because it was no longer functioning. My body was working extra hard to pump blood into an area of my heart that could no longer handle the blood. I also got a pacemaker implanted. A “precautionary” pacemaker — not because I needed one at the time but, because I may need one in the future. What better time to do it than at the age of twenty-five when they were already ripping me open? So the surgery happened, and it was painful, horrifying, maddening, spiritual and life-changing all at once. Most importantly, it was life-changing. I’ve been told that I’ve changed since that last surgery. Sometimes when people say “change,” the immediate reaction is a negative one. But change isn’t always negative; it may just mean that you’re growing. I have no doubt that I have changed. I know for certain that I have. But the surgery itself isn’t what changed me; it was the experience that changed me forever. It was the experience that awakened me to life in a new way. In the last four years I have felt over and over that someone has been shaking me. “Get up, live your life, and live it the way you want to live it.” In these past four years I have done things that have changed my life. I broke up with a terrible, manipulative boyfriend. I finally let go of someone I loved for years. I quit a job where I was no longer happy and had me drinking almost every night. But, most happily, I found the love of my life and I married the love of my life. I started a dream job at the very hospital, The University of Iowa Hospital, that changed and saved my life four years ago. I’ve changed and I live differently now. I say what’s on my mind a lot more. I book myself to the max. I’m always busy because I try to see everyone who is important to me, just in case I die tomorrow. Sometimes I think irrationally because when death is on your mind constantly, it can eat at you. It brings every second of my life to the forefront and forces me to look at it constantly. A life or death experience is life-changing. And with it comes even more life-changing things happen. That is the truly amazing thing! I say to my husband often,“Dear, do you think I’m dying?” And, his sweet patient, self always responds the same way: “ Dear, we’re all dying.” It’s the most perfect, and reassuring response he could ever say. And, he’s right; we are all dying. You are dying just like I am dying. I may think about it more than is healthy (roughly at least ten times a day, seriously). Most of us think about death when we see someone who is sick or when someone dies. We think of it when we get sick ourselves, when we face a surgery or face some other crisis situation. But it is the same for everyone; we are all dying. So, say “yes” when you mean it and “no” when you don’t want to do it. Dance on the bar when your feeling the urge, and stay home when all you want to do is cuddle with your dog. Say what’s on your mind and do what you want to do. If you are doing things from a place of kindness and happiness then you are probably living your best life. Just do whatever it is that will bring you happiness and if you can make other people around you happy too, then that is a bonus. You know what is good for you and your happiness, so try to avoid letting other people tell you how to live your full life. Dig deep. And most importantly, say what you need to say. Let your heart open up and explode. If there is anything I have learned in these recent years and living with a congenital heart disease, it’s that life changes you and people change you. So, embrace the changes. Embrace that person you are today and not the person you were a year ago or five years ago. Live your experiences, grow from them and let them change you. No one will ever continue to be the same person. We are surrounded by so many opinions and those willing to give us advice and suggestions on how we should live our lives. I recently came across a quote that I feel addresses this: “The most beautiful person is the person that is true to themselves.” I fee this is the only piece of advice we need and the only one that matters. Follow this journey on Peaces of My Heart The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.