Laura Keating

The first time my illnesses made me dependent on another person, that person told me I was worthless. “She’s such a liability” and “she should really take better care of herself” were just a couple of comments that shaped the way I viewed some of my chronic illnesses years before I even had names for them. I entered the world of chronic illness with the mindset that being dependent on others meant being valueless, that any health issue I saw as an inconvenience to myself was an even bigger inconvenience to those around me who had to “deal with it.” Years later, the feeling of being a burden is still my biggest struggle. In the past year, as my symptoms have put me in more and more situations where I rely on others, I’ve struggled with muting the voice that tells me I’m too needy. But it’s hard to mute that voice when it’s always been there. When I am in the midst of full-blown vertigo and my body is fighting the most epic battle against gravity, my mind fights an even more epic battle against the conscience that tells me how inconvenient this is for everyone around me. The hardest parts of my illnesses are not the symptoms or the drug side effects or even the illnesses themselves. The hardest parts are the internal battles between wanting help but thinking I shouldn’t need it, between knowing it’s out of my control and shaming myself for not controlling it. The worst symptom of my illnesses is guilt. I know I’m not alone in feeling like my chronic illnesses make me a burden. I also know I’m not alone in often trying to “tough it out” to avoid being that burden. I think we all hesitate to be vulnerable. To a certain extent, we learn to do it alone. Recently though, I’ve realized that perhaps the only person I’m burdening is myself. So, I remind myself that though I can do it alone, I don’t have to all of the time. The first time my illnesses made me dependent on another person, that person told me I was worthless. The last time my illnesses made me dependent on another person, I knew that I wasn’t. Today, I remind myself: The people who are still there are the ones who want to be. So, let them be. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via kieferpix.

If I were you, I would have assumptions about my daughter and me, and they wouldn’t be the nicest judgments. You see us walk into Target hand in hand, with my daughter enjoying a McDonald’s smoothie. You know where we are heading — aisle F14 — straight to the “girl” toys. And you know my daughter will be walking out of the aisle with a toy or two. You see us at the self-checkout. You see that we are always buying a silly “laugh-out-loud” doll or other small toy. You watch us as my daughter wants to do the scanning and paying all by herself. We make the machine freeze up. We ring up too many things, or sometimes not everything. You even smile when she uses the gun to swipe her gift cards. You notice us sit down in the Starbucks after our purchase while my daughter quickly opens her new surprise toy, curiously trying to figure out which one she got in the set. And the whole time, you are smiling — looking us in the eye, making sure our lane is ready for us, giving us a coin to scratch off the passcode on the back of the gift card, and even right there to fix the register when things ring up the wrong price. You make my day, my week, and my month. And you have no idea. You see, what you don’t know is that I am really sick. I have autoimmune autonomic ganglionopathy, which has caused my digestive system to be paralyzed, and makes me feel like I have the stomach flu everyday. I don’t get out of bed most days. I don’t drive very often because I get sick. I can’t take care of my preschool daughter because I am sick. So, when you see us at Target, all smiles, spoiling my kid rotten, it’s because your store is less than one mile from my house. And so is McDonald’s. And on days that I don’t want to pull the covers over my head and give in to this awful disease, I excitedly and proudly take my daughter the only places I physically can. And then, she excitedly ventures off to grandma’s house because I’m too sick to even take care of myself. And you have become part of our story. We look for you each time we are there. My daughter talks about you to her big sister. She tells her that our “Target friend” was working today, or how he let us use his coin. She even brought her grandpa with us one day to see you. So while you probably have no idea, you are a giant light of positivity and joy for my daughter and me. I actually look forward to your kind smile and the cute little head nod you give us each time you see us. We won’t be seeing you for a while because I am getting a bone marrow transplant. But, please don’t forget about us. And please don’t forget that you helped create a happy memory and tradition for my daughter and me.

Since I was old enough to answer, if someone asked me what I wanted to be when I grew up, I always answered, without hesitation, “A mom.” It was something I knew I wanted my whole life. As a child, I liked playing house, and always had a baby with me. When college came around, I wasn’t sure what I wanted to study since “mom” wasn’t one of the majors I could choose.  After many years in college, I finally realized that being a teacher was the next best thing to being a mom. I could get paid to spend my whole day with kids? Fast-forward to three years ago, and my life was exactly everything I could have hoped for. I was happily married with two daughters, ages 1 and 3, and I was an early childhood special education teacher. I was getting paid to play with 3, 4, and 5-year-olds all day, and it was fun. Now don’t get me wrong.  My life wasn’t perfect. I was sleep deprived. I can’t remember the last time I’d worn makeup. My husband and I would pick fights with each other over nothing. My house was a mess. And, I often woke up to find a Cheerio glued to some random part of my body. But, I had everything I wanted. And I truly was happy. Then, in an instant, that life was over. Done. Gone. A distant memory. A fairytale in a book I read somewhere. My new life began — a life battling chronic illness. While eating lunch one day with my coworkers, I became very ill. What I didn’t know had happened was that my entire digestive system shut down. It became totally paralyzed. I was diagnosed with gastroparesis and chronic intestinal pseudo obstruction. I became TPN dependent almost immediately and have been unable to eat much of anything since. After two years of traveling the country seeing doctors, the Mayo Clinic discovered that I have a rare autoimmune disease called autoimmune autonomic ganglionopathy. While I was struggling with this illness that caused the flu every day of my life, I was struggling more with the mental part of my disease. Suddenly, I went from a cheery, fun, silly mom to a bedridden lady with all the blinds closed, on medications, sleeping through HGTV reruns. My dream of being a mom had come true, but not at all like I had hoped. I wasn’t the mom at all of the school functions, cheering my kids on at soccer games, transporting the neighborhood kids to the park. I was the mom who practiced bedside parenting. Bedside parenting? What’s that you ask? That’s my version of trying to teach my kids about kindness, love, sharing, telling the truth, reading, fashion, and life in general all from the (un)comforts of my bed. Let me tell you. I’m not very good at it, and it’s not easy. I have been sick for three years, and being an early childhood educator, I know how important the development of children is during the early childhood years. Am I ruining my kids? Are they going to be failures because they didn’t have a mom who could show them what a real mom is like? Recently, I saw myself slowly spinning into a downward spiral. I was falling into the dark hole of depression that I have gotten to know pretty well in these last three years. So, I texted my mom. I told her I was falling apart. I told her I was afraid for my kids. I told her I couldn’t handle the guilt of knowing that my husband has to be the mom and dad, the husband and wife. I told her I was lost. And I told her I was going to fall asleep and forget about it all until tomorrow. Instantly, I received this text back: Talk to you tomorrow. I love your strength, your courage, your spirit, and the intense love you have for your husband and your girls and all of us. You are an amazing young woman. I will always be proud to be your mom! Rest well, my sweet girl. And like that, my heart and my head were calm. Because I just needed my mom. And I realized that I will never be too old to need my mom. And then I realized that I wanted to be a mom with such ferocity because of my mom; not because she was at all of my class parties, or driving my friends around town. It was because of how she loves me. It was because she knows just what to say when I’m feeling broken. It’s because her love for me is like no other, and I can feel that. And that’s when I realized bedside parenting is not as bad as I think. Yes, I miss out on lots of activities, but when my girls come home from those activities, jump into my bed and smother me with hugs and kisses as they excitedly tell me all about their adventures, I know that we share a love that can’t be squashed by chronic illness. To all of you moms out there struggling: Please know that your children know no love like the love of a mother. You are doing a good job. Keep fighting. Keep trying. You are an amazing woman. You have strength, courage, and spirit. Believe me. My mom is always right. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Ableimages

Dear…? Well, actually, I don’t know what to call you. I could call you “gastroparesis,” but that’s just your first name. I’m still trying to find out what your last name is and how many middle names you have. My digestive system wasn’t enough for you, so you’ve taken up residence in other parts of my body as well. You don’t have an official name yet. But name or no name, the struggle is the same. You make every day a challenge, and you make being alive more complicated than it should be. I can’t eat because of you, so I eat through a tube in my abdomen and a central line in my bloodstream. I take medications to help my body do the things it’s lost the ability to do on its own since you showed up. There are so many things I hate about you. I hate that you make me doubt myself and doubt my instincts. I hate that nothing in my life can be spontaneous. I hate that I can’t just have fun without paying you for it. And I hate that no matter how hard I try, no matter how carefully I track you and no matter how conscientious I am, you still surprise me, exhaust me and leave me confused on a daily basis. Thanks to you I had to give up a job I loved. Thanks to you I had to drop out of university. Thanks to you I spend more time with my doctors than I do with my friends. And thanks to you I watch those friends move on without me and achieve the same goals I’ve had to set aside. But thanks to you, I’ve made some new friends. I’ve met so many wonderful people. Doctors and nurses, yes, but also fellow patients and kindred spirits. I’ve learned that shared experiences can bring people together in a way that overcomes the geographical barriers keeping them apart. I’ve been lucky enough to find my tribe. They’ve given me unconditional support, and I’ve learned how to offer that support in return. I kind of hate what you’ve done to my family. I hate the stress, the worry and the helplessness they feel. You haven’t just taken away my freedom; you’ve taken away some of theirs, too. But on the other hand, what you’ve done to my family is kind of beautiful. You’ve strengthened our connections, and you’ve given us a lot of opportunities to be there for each other when we’re most vulnerable, which is also when we’re most honest, when the knots are tied the tightest. Throughout the past five years, I’ve never felt more discouraged, frustrated, tired and lost, but I’ve also never felt more loved. I know that’s because of you. You’ve caused me a lot of hurt. I grieve my old, normal all the time. I grieve the me who was always on the go, who thrived at school, who was involved in everything and actively trying to make a difference. She was motivated, hardworking and full of energy. She was smart, and she was going places. I liked her. My new normal is different. The new me is quieter but wiser. More tired but more patient. The new me is better at giving others the benefit of the doubt and has a better awareness of the fact that everyone is going through something. She’s slower to judge and quicker to empathize. She knows how to ask for help, and she keeps going no matter what. And you know what? I like her, too. I miss the old me, and that hurts, but I like the new me, and that heals. So how can that be? It doesn’t make sense that you can hurt me and help me, that I can hate you and appreciate you. There are more challenges in my life now, but there is also more joy. You’ve taken a lot from me, but you’ve made me more grateful. How is that possible? It’s possible because of what you’ve shown me: that there are two sides to every story. There are triumphs in every hardship and successes in every failure. There is good in everyone and everything, just as there is bad, too. The thing is — I get to choose what I see. And if I look for the good, I know I will find it. You taught me that. 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 to community@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 .

When we met, we were so young and had our whole lives ahead of us. Getting married, having two sweet daughters and buying our first house were like dreams come true. Don’t get me wrong, your sharp tongue and my inability to let things go made for some pretty good fights. But we were still so happy. Then I got sick. In literally one day, our lives completely changed. That life we had, the one that made me so happy, was gone. You kept telling me that it wasn’t gone, and that it had just changed a little, but I was sure it was gone. Gastroparesis had taken my life and turned it into painful, dehydrated, weak, lonely and depressing days. I became completely lost and couldn’t stop thinking about who I used to be: a wife, a mother, a sister, a daughter, a teacher, a neighbor, a friend. All I could see was a woman who could no longer work, take care of her kids alone, eat anything or drive herself places. It’s been two years since our lives were turned upside down. And guess what? You’re still here. You stuck it out. Every time I questioned why you would stay, you looked at me like it was a crazy question. Thank you for that. And thank you for all of the small things you don’t even realize you do that make my heart feel full. Thank you for making our bed in the morning after you get up. It’s my “office,” and it’s nice to see it clean. Thank you for changing our busted TV to the channel I like before you turn it off. That way, I don’t have to watch your sports shows while I wait 20 minutes for the remote to start working. Thank you for holding my hand when I’m in the hospital. I know how holding hands “isn’t your thing.” But when you grab my hand in the hospital and hold on for dear life, it helps heal me even though I may be too sick to say anything. Thank you for cheering me on when I poop. Who knew we could find so much joy and giggles from something so smelly! Thank you for laughing at me when I lose my self-control and eat something I shouldn’t have instead of yelling at me and saying, “I told you so!” It sort of eases the pain. Thank you for understanding when I get mad at you over nothing. I’m still learning how to control the monster that comes along with chronic illness. Thank you for turning the shower water back on after you get out of the shower and it’s my turn. I don’t think you realize why showers aren’t fun for me anymore because of my central line. So stepping in for my “quick” shower with warm water is amazing. Thank you for carrying my TPN and supplies upstairs from the basement refrigerator every night. That saves me tons of spoons. But mostly, thank you always loving me. Thank you for sticking around even when I tried to push you away. Thank you for sticking around even when I wouldn’t stop trying to pick a fight. Thank you for sticking around when I was too depressed to shower and smelled pretty gross. Thank you for sticking around when all I did was whine and complain. Thank you for giving me hope, joy, support, comfort and love. I wouldn’t be here without you. I love you. The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

The following is a list of “the directions” that come along with me and my chronic illness. But first, a little background: I have gastroparesis (my stomach is paralyzed), and I get all of the nutrition (TPN) I need to stay alive through a port in my chest. Most of the time, I don’t eat or drink much. The diet that makes me feel the least gross is saltines and Gatorade. I  know, it’s pretty unusual. But if you read my nine tips, we can totally be friends at a holiday party! 1. If I ask to help set or clear the table, please let me. It keeps me away from the actual eating food part. 2. Please let me have my cell phone at the table. I’m not trying to be offensive. My phone is like my security blanket when I don’t know what to do with my hands (like at the dinner table). Your hands are busy stuffing delicious food into your mouth while you talk to me. I really need to keep my hands busy, so doing meaningless things like taking pictures, liking Facebook posts or playing Candy Crush all the while still engaging in conversation with you is not me being rude. It’s my willpower and is keeping me from breaking down in tears because I just want to taste that Christmas ham. 3. When you ask me how I am, and I tell you I’m fine, please believe me, and don’t give me a look that says, “It’s me. You can tell me the truth. How are you really?” If I say fine, it’s because I am. For me, fine is a good day. If I’m not fine, I will tell you, and you will know. You will see the pain in my face. 4. Please eat and drink in front of me. I can’t take the guilt of thinking other people can’t enjoy food just because I can’t. It’s too much to handle. Tell me how good it tastes or how you made it. I’m still interested in food, I just can’t eat it. 5. Talk about yourself! Please! My life consists of having fake relationships with characters in books and TV personas because while the rest of the world works and goes to school, my full-time day job is to rest, which includes lots of books and TV. It can get pretty unrealistic,  so I really do like hearing about your “regular old daily life.” 6. If I curl up on your couch or chair and you ask me if I want to go upstairs and lie down, please don’t force me when I say I don’t want to. You see, I’m exhausted, and I don’t feel good, but I don’t want to miss out on anything. So if my eyes are closed, you don’t have to whisper. You don’t have to move to another room. You don’t have to worry you are waking me. I want to hear what you’re all talking about, but I just can’t keep my eyes open right now. And if I do fall asleep, don’t worry, blowing a horn in my ear couldn’t wake me. 7. If I say I have to go make a phone call, or that I’ll “be right back,” or some other excuse, don’t make a big deal about it. I just need to go upstairs (or downstairs, or wherever your secret bathroom is) and poop. And I really don’t want to succumb anyone to the awful smell that is my butt. 8. If I do have to excuse myself and go lie down (depending on how well I know you) or tell you I have to leave because something came up, trust me, it’s me, not you! 9. If you don’t know what to talk with me about, ask me about my kids (unless you don’t want to hear me talk for hours!). They make me so proud. I could tell you anything and everything from the minute they took their first breaths to the tantrums they had before we got here. Most of all, please know I wish you a happy holiday season no matter who you are, what you celebrate or how your story began, because you took the time to care. The Mighty is asking the following: Create a list-style story about the holiday season related to disability, disease or mental illness. It can be lighthearted or more serious — whatever inspires you. Be sure to include an intro for your list. If you’d like to participate, please send a blog post to mentalhealth@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

My husband and I try to shelter our daughters from my chronic disease. We try not to talk about my health problems around our girls. But they know. They see it. They see me take a bite of a cracker and then become violently ill.  They notice when I’m so sick I sleep all day, unable to get out of bed.  They see me constantly on the phone with doctors, having my nurse come to the house to care for me and being driven from appointment to appointment. They know how to help me hook up my port to fluids and total parenteral nutrition (TPN). They each have their special jobs they can do. It breaks our heart to know that they have so much stress and worry at such a young age. Questions my husband and I have fielded are, “Is Mommy going to heaven soon?” “Will Mommy be able to watch me at my dance recital?” “Why won’t Mommy wake up?” “When is Mommy coming home from the hospital?” “Why are Mommy and Daddy always gone? Why do we always have to sleep at Grandma and Grandpa’s house?” When it comes to going out to dinner at a restaurant, my husband and I still feel awkward when it’s time to order. What do I say when the server asks me what I’d like to order? When I say, “Nothing for me,” do I explain that I can’t eat, or do I just leave it alone? Will the server be mad I’m taking up a table but not buying anything? Well, in this certain instance, I said I wouldn’t like to order anything.  The waitress said she’d have to talk to her manager, because since the restaurant had entertainment, he would probably make me pay something. Finally, the manager came over and said he would have to charge me for a kid’s meal. I calmly responded, “But, I’m not eating anything. I’m here to be with my kids.” The manager then replied, “Well, eating or not eating is a choice. I’m charging you for a kid’s meal.” My 4-year-old daughter suddenly turned to the manager and said, “I don’t think you understand. My mom has gastroparesis. She can’t eat or drink anything because it makes her sick. She has a port right there under her shirt and TPN goes in it. TPN is her food. If she eats she could have to go to the hospital again. I really don’t want that to happen.” My husband and I looked at each other with wide eyes as our jaws dropped. How did she know all of this? Did our sweet 4-year-old just leave a grown man speechless? Our daughter looked so proud of herself that day. We realized she just wanted to be able to help me in any way she could. And guess what? She did! I didn’t get charged for a kid’s meal, and the manager never came back to our table or even made eye contact with us. The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “ Share Your Story ” page for more about our submission guidelines.