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Christina 'Mouse' Jennings Wants to Inspire Young Girls With Chest Scars

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Christina 'Mouse' Jennings Cover

Christina ‘Mouse’ Jennings has no problem showing her scars if that means it will help others. Jennings was born with a rare congenital heart disease known as tricuspid atresia. Since then, the 30-year-old has had four open heart surgeries, the last of which left her with a pacemaker protruding out from her abdomen. “My biggest scar, from the top of my neck to my belly button, has been there since my first open heart surgery when I was 5 months old,” she said.

Jennings also has a large scar on her abdomen from a feeding tube she had as a baby, scars from where her pacemaker is in her abdomen, a large scar on her shoulder blade, and small circular scars on her chest from chest tubes.

Since Jennings, a revenue analyst at the University of Iowa Hospital, has grown up with her scars, she feels comfortable showing them. “I am proud of the all of the large scars that are especially noticeable in a swimsuit,” she said. “[My scars] show people who I am and are a glimpse into my life story.”

While Jennings feels comfortable in her skin, she does wish she were more toned. She’s tried training with her husband, a personal trainer, but that hasn’t always worked out well for the couple. “Trying to have my husband ‘train’ me was difficult,” Jennings said. “I am a bit sassy sometimes, especially if I am doing something I don’t like to do. So when my husband tries giving me instructions and is in the position to be able to ‘tell me what to do’ – like how to lift the weights, what weights to lift – it doesn’t go over very well.”

There are certain exercises Jennings can’t do, like lifting heavy weights above her chest. “My pacemaker I have is also located in my belly which makes certain exercises like doing sit ups and squats uncomfortable for me,” Jennings explained.

Growing up with what she calls “fairly good confidence about her scars,” Jennings wants to help other young women and girls with heart disease. “I want to inspire other young girls with heart surgery scars,” she said. “[To do] so I must be comfortable in my own skin and about my own scars. I shouldn’t be ashamed of what I look like and the life I’m fighting for.”

Read More: This Is What It Looks Like When You Feature Disabled and Chronically Ill People in Magazines

Next: Tristen Wuori, on Going to the Beach in the Summer With Lupus

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What My Husband Says When I Ask 'Do You Think I'm Dying?'

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Christina in the hospital
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.

 

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What 'Finding Dory' Can Teach Us About Acceptance and Inclusion

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I just got home from watching the much anticipated movie sequel, “Finding Dory.” Even though I took my kids to it, I have to admit, I’ve been excited about it. “Finding Nemo” is one of my top 10 favorite movies of all time. It had to be. It was on repeat in my minivan back when my kids were still shorter than I am, and I have probably listened to or watched it over a hundred times. I’m pretty sure I can repeat almost the entire movie. So when I found out “Dory” was coming out, we had to go.

It didn’t disappoint! Endearing, funny, beautifully animated — it delivered on all points. But what delightfully surprised and impressed me was the incredibly positive messages it subtly teaches. As I felt for Dory and her story, I suddenly realized the whole movie is a huge lesson on inclusion.

(I might give some of the movie away here so… spoiler alert.)

Dory deals with short-term memory loss. At times she is misunderstood by others around her, at times she feels bad about it, at times it provides funny moments and all the time, it’s just who she is. As a mom to a child with autism, I can relate.

In the scenes when she is young, you see her parents lovingly teach her the things she needs to know to be safe with her “disability” (I put that in quotes because they never refer to it as such). Again, this definitely struck close to home. How do you teach a child safety rules when she can’t remember? Dory’s parents are excellent role models for special needs parents. They patiently and lovingly and repeatedly guide Dory. Ultimately, they do give her the tools she needs later in life. They also worry about her future. Disney / Pixar even describes them this way, “They celebrate and protect her, striving to arm her with the skills she’ll need to navigate the world with a faulty memory.”

Celebrate her! I love love love this message. (Kudos Pixar!)

The movie is filled with characters who don’t let their differences get in the way of living life. Hank the octopus is missing a tentacle, Destiny is very nearsighted, Bailey had a head injury that affected his echolocation, Nemo has his little fin. Becky, the very disheveled and non-verbal loon is a valued member of the quest. They are presented in such a matter-of-fact way and it’s so wonderfully inclusive. Even in the original “Nemo” movie, Nemo’s new school friends make him feel better when his dad explains his little fin. They all chime in with “This tentacle is shorter than all the other tentacles,” “I’m H20 intolerant.” (See, I can quote the movie!) Everyone has their imperfections.

Through the course of the movie, Dory moves from constantly apologizing for her condition and seeing it as a hindrance to recognizing it is her strength. She’s a problem solver and endlessly optimistic. She begins to value herself. “What would Dory do?”

A person (or sea creature)’s perceived disability might just be their greatest asset. If Dory didn’t have the short-term memory loss, she wouldn’t have lost her way, wouldn’t have found her loving friends and wouldn’t have the fearless nature that allows her to think outside the box and solve problems creatively.  She compensates for her memory loss by following her gut instincts, which often simply means following her joy. Which ultimately leads her home. “Finding Dory” teaches kids and adults to believe in yourself, no matter what. Doing things differently is valuable. And a perceived disability might just be a different ability.

I give “Finding Dory” two fins up for its positive message on inclusivity!

The Mighty is asking the following: Describe a scene or line from a movie, show, or song that’s stuck with you through your experience with disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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What Not to Say If Someone Says They Can’t Have Children

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I have heard it all. Complete strangers at christenings have told me, “It’ll be your turn next” or “It’s amazing what doctors can do nowadays.” I’ve even had family members ask me, “If you could have children, would you?” And one person actually burst into tears.

Let me get this out there here and now: If a woman or a man say they can’t have children, don’t ask why, or worse, ask what’s wrong. The implication that you’re somehow broken is upsetting. Just accept it and move on. Not everyone’s life goal is to have a baby, and if someone is infertile, people questioning it really doesn’t help. The questions can actually make us feel bad.

At 29, I had a total hysterectomy and bilateral salpingo-oophorectomy, which meant my cervix, womb, fallopian tubes and ovaries had been removed, and I went straight into surgical menopause.  

Therefore, no matter how amazing some of the advances in medicine are, there is absolutely no chance I’ll ever carry or have a child of my own. The hysterectomy was the right decision for me. I had recurring cancer cells in my cervix that were getting progressively worse with each treatment. I had ovarian cysts that would grow to about the size of a tennis ball and then rupture, and I had a lot of issues with extreme blood loss, resulting in anemia, pain and adenomyosis.

Interestingly, after discussing this with my doctor who diagnosed me with Ehlers-Danlos syndrome (EDS), I now know this was part of the EDS (apart from the cancer). I lived with most of these problems during my teenage years, and believe me when I say the hysterectomy was the last resort. Before that, I had undergone 12 gynecological surgeries, countless treatments to try and resolve the issues and I was hospitalized twice because of blood loss. However, I shouldn’t actually have to explain all of this to people.

Being in my mid-30’s and married, I’m going through that phase in life where a lot of my friends are having babies, and, of course, I’m happy for them. However, there will probably always be a small part of me that feels a little sad that it’s an experience I will never have. But I still consider myself very lucky. I met and married a single dad, so I’m a stepmother to three wonderful children.

So the next time someone tells you they can’t have children, please don’t question it, please don’t force them to explain why and please don’t try and offer helpful advice. Just accept what the person says and move on.

I have very purposefully used non-gender specific wording because infertility isn’t specific to women. I think men get left out a lot in the discussion despite the fact that it affects them as well.

Also — and this might be the biggest point of all — please never say, “You’re so lucky!” because your own children deprive you of sleep. And yes, I’ve heard that one as well.

Follow this journey on From the Heart.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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To My Julianna

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This is the letter I read to my daughter Julianna at her Tea Party Celebration of Life. I am usually a nervous (i.e., avoid it like the plague) public speaker. This time, it was not an issue. (J would have said “Don’t freak out!” or “Relax, princess.”)

As I wrote this letter, I felt her presence and the peace of God.

Michelle and Julianna

17 June 2016

Dear Julianna,

My darling girl, how I miss you. I can’t believe you are gone.

I sit here in your princess room, in the familiar chair. It has all of your things, the stuff I once thought of as clutter and now consider treasure, because you loved it all. If there is a way to truly love inanimate objects, I believe you did, because your love is just that strong.

I knew this day would come. I tried to deny it for the longest time, but I knew, early on, that my time with you on earth would be way too short.

Even before your CMT declared itself to be the beast that it was, even as we planned a long life with adapted everything, I worried. There was this gnawing fear I tried to shove deep down.

You see, I believe that children whose time on earth is short are special. It’s not just a platitude, or something I say to make myself feel better. It actually made me feel awful. I recognized very early (after the nasty colic stuff went away, that is), that you were not an ordinary child. And it scared me.

What kind of a child never feels sorry for herself? Or refuses to pick favorites because you don’t want people (or things) to feel left out?

I described it this way in an email I wrote in October 2014:

If you have been around Julianna, you know that she is one of those kids – her spirit is incredible and resilient, and she is wise beyond her years while being delightful and funny at the same time. She is exceptional.

I recognized this, and it scared me. If it had been up to me, I would have made you more ordinary, so you could be with us longer. It’s selfish, and not very wise – but it’s the truth. That’s how hard it was to imagine a life without you.

So now, we are here. I was right to be afraid of this, because it hurts – more than I can describe or even think about for any length of time. That’s the price I pray for loving you so much. But it’s OK, because the love you gave me was epic. I’m still coming out ahead – by an enormous margin.

And this, my sweetheart, is your greatest gift, your legacy. More than anything else, you loved. Your love was so expansive, so thorough, it gave you a lightness and joy that was otherworldly.

You said it best, darling girl. Love is a superpower.

Just look at what it’s done:

It made an introvert bare her soul to the world – via CNN.

It let a little girl who had a hard time just going out of her princess room be known — by the world.

It made the laconic very, very verbose – this would be Steve, in a 1,115 word-count Facebook post about Making a Moment.

It makes converts out of pinka-phobes – because it was your favorite color. (Steve again…)

And love is the only thing powerful enough to get us through life without you: God’s love, manifested so obviously in every fiber of your being. I believe you took His greatest gift and shared it with all of us.

Love is a superpower. It is the reason and the answer. It keeps broken hearts beating; it turns judgment into kindness, fear into courage, grief into joy; despair into hope. It is the greatest.

My sweet Julianna. You have taught me so much, but this is your most important gift: that the thing I feared most has happened, but I will survive. Because of your love.

You will always be my baby.

With all my love, and a million zillion kisses – until I see your beautiful face again…

Heart,
Mommy

Michelle and Julianna
Photo credit: Charles Gullung

This post originally appeared on Michelle’s blogRead Michelle’s first story on The Mighty: My Daughter Wants to Choose Heaven Over the Hospital.

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What I Want to Tell Well-Intentioned Friends Who Say I Look Healthier

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“Oh, no cane today! You must be feeling better!”

“You look a lot healthier than you did last week. Things must be going well.”

“Your new meds must be working. You seem to be moving pretty easily.”

Actually, no. I’m not using my cane today because my hands are swollen and in pain. It hurts too much to lean on them. I am healthier than I was last week, but only because I finally caved and started taking a steroid that makes me sick to my stomach and causes me a lot of anxiety and panic. Based on my blood work, my condition has actually gotten worse since starting my new medication, but I don’t want to admit that to you (or myself), so I’m trying to be upbeat. I’m pretending it doesn’t hurt to move. I’m really good at pretending.

These are the things I want to say when the people who care about me tell me how much healthier I look. I want to tell them that looks can be deceiving. I want to explain that my disease does not affect the same joints in the same way every time. I want to explain that my legs might feel better today, but that doesn’t mean my shoulders (or hands, or neck, or elbows…) aren’t acting up. I want to explain for the hundredth time that I’m not going to “get better” and I’m never going to “be healthy” by their standards. My disease isn’t going away. My disability is permanent. How I look isn’t going to change that.

But I don’t tell them these things. Strangely, I might if they were strangers. I might go into the whole process of describing how chronic conditions work and how my disease ebbs and flows from day to day. But for these people, they’ve already heard that story. They know that I’m “sick.” And when they tell me that I look better, healthier, stronger, they aren’t doing it because they don’t know what I’m going through. They are looking for hope. They want me to be better. I can see it in the looks that pass across their faces when they see me walk into a room without my cane, or when I dance a little to the music at work, or when I choose the stairs instead of the elevator. Relief. Maybe she isn’t in pain today.

Usually these are well-intentioned friends and coworkers who are trying to be supportive. When they tell me I am looking better, I usually take it as a sign that they are trying to be attentive to my condition. I think they are trying to be supportive and show that they care about my well-being. I appreciate the sentiment, but I can’t deny the fact that is makes my life more difficult. I wince every time I hear one of these well-intentioned comments. When someone comments on how good or healthy I look, I am instantly reminded how invisible my disease is and how hard it is to get people to understand what my daily life looks like.

When I get one of these comments, I worry what will happen tomorrow when I have to use the cane again. How will this well-meaning friend react? Will they be disappointed all over again? Will they be frustrated? When they assume that improvement in one joint means total recovery, I wonder if they will take me seriously when I express pain or frustration about a different part of my disability. Will my working legs mean they won’t understand why I can’t use my hands? The truth is, my physical appearance trumps my physical experience every time.

These are the comments I find the most painful and the most difficult to deal with. They are the comments that I have yet to find a way to respond to in the last 10 years. I want to explain. I want to make people understand that they can never understand. I want them to know that there is so much more to my disease than what they can see. But I don’t want them to think that their attentiveness is unnoticed. I want them to know how much I appreciate their desire to see me healthy. I want them to know how much I wish it was as simple as what they can see. I value their friendship and support. I value their good intentions. But good intentions don’t equal understanding.

I’m looking for a way to clarify. A way to politely and compassionately disagree. A way that doesn’t require a speech on the details of my condition. One that acknowledges the good intentions without ignoring reality.

“No, I’m not feeling better, but thank you for asking.”

“I’m feeling better than yesterday, but my health is still complicated.”

“It’s really too soon to tell if the meds are working. I’m just trying to stay upbeat about it.”

None of these quite work. None of them communicate what needs to be said. So for now, I just smile and pretend their good intentions are my reality.

The Mighty is asking the following: What’s one phrase you wish people would stop saying about your (or a loved one’s) disability, disease or mental illness? Why? What should they say instead? Check out our Submit a Story page for more about our submission guidelines.

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