Born with gastroparesis, dismotility of the intestinal track and hyperalgesia everything I do in life is intertwined with my disease. In simpler terms my stomach is paralyzed, my intestines don’t move well and I’m super sensitive to stimuli, meaning I experience pain on a much more intense level than the average person. I can’t eat food and I receive all my nutrition and hydration through a little device in my chest called a central port. My food is called TPN (Total parenteral nutrition). I have a tube that goes into my stomach (G-tube), which lets me drain liquids out of my stomach to keep me from vomiting. Another tube is in my small intestine (J-tube), which is used for medication that I don’t receive via my central port. I’m on a wild ride, on this roller coaster called life, but I’m on a mission to show how a physical, spiritual, psychological or emotional battle can be someone’s greatest blessing. How what they thought was once a curse can really be a blessing in disguise. So let me show you how the holidays can be that much brighter when you’re living with a chronic disease.
1. Holiday parties are the bomb
I love going to holiday parties! Just because I can’t eat or have a chronic disease doesn’t mean I don’t want to be invited to holiday festivities. Yes there will be some days where I’m too drained or tired to be able to attend, but other days I’ll be okay and I’ll want to join in on the fun. Getting an invitation to a party makes anyone feel special, including me, so please don’t hesitate to invite me to something, just because I’m sick doesn’t mean I don’t know how to party ;) I may not be able to eat the food there, but I can sure enjoy the beauty of decorated cookies or the warm smell of honey baked ham or roasted turkey. And even though I can’t swallow the food I can still chew it then spit it back out, so I still get to enjoy the taste of the food. Furthermore, lots of people play games at parties and more often than not I’m able to participate in these games, but even if I can’t play I love watching.
2. Christmas songs rock
Living with a chronic disease I’ve learned to live with people’s stares. So when I hear my favorite Christmas song come on, whether I’m at home, in a store or the car I’m not afraid to sing right along. Who cares if someone is staring, I’m going to enjoy my moment with the song and no one can take that from me. Just listening to old Christmas carols, songs from Christmas movies or new Christmas tunes bring a smile to my face. Most of the songs contain a cheerful message and provide an escape from the daily pain and suffering. An escape to a place where snowmen come alive, where wishes are made for a white Christmas, and where a tiny baby rests in a manger.
3. Decorated houses are breathtaking
Because I have a chronic disease I’ve learned to value the little things in life. That being said a house decorated with Christmas lights is a masterpiece in my eyes. The twinkling lights seem to tell me a story as I gaze at their sparkling hue. It’s not just a display, but a pictures of someone’s hard work as they tirelessly applied lights to banisters, trees and rooftops. It’s a work of art and something that I can capture in my mind to think back on when days are hard.
4. Baking is better
Baking is more exciting when you have a chronic disease. It’s a game of do I have enough energy to finish the festive treats? In reality baking can be a tiring ordeal, but it can also encase so much fun. I love rolling out soft dough and creating fun shapes with cookie cutters. Mixing a cake is always pleasing as the warm spices filter up into my nose. Making caramel and watching it turn a warm golden hue is fascinating. Plus it’s fun to be able to make something that will bring joy to someone else.
5. Christmas Movies are more magical
Christmas movies remind me of my childhood. A childhood where days were more normal. Where there was a pattern and safety to life. Those days all I could dream of was becoming an adult, but now that I’m an adult my childhood seems like a much safer place to be. So when I sit on my couch and watch a red nosed reindeer find acceptance, or an ugly Grinch experience joy or Jack Frost discover love, the magic of my childhood seems to return and fill my heart with happiness.
6. Family time is so precious
Living with a chronic disease and fighting for my survival has made me grasp how precious life is and that time is better spent making memories than collecting things. I love each and every memory I’ve made with my family and good friends. And plenty of memories are made around the holidays as the holidays have a tendency to bring people together. I have also seen how fleeting a life can be and how quickly someone can die; through a car wreck, disease or other type of accident. So cherish each and every moment you have with those you love because you never know when your last moment may be.
7. Christmas cards are extra special
Don’t lie you like receiving mail just like every other person on this earth. And I’m not talking about junk mail or bills, but a letter or a card sent to you from a loved one or friend. Letter writing seems much of a lost art, but around the holidays the art still rings true. It’s exciting not only to receive people’s holiday greetings, but also to send them out. Sure writing someone a Christmas card takes time and you have to make sure you have a stamp and then you have to literally send the card instead of just pushing a button, but it’s all worth it in the end. Why? Because you’ve had the chance to brighten someone else’s day when they receive the card and open it up! But you don’t have to wait until the holidays to send someone a card because finding a card in the mailbox, on a random day in May, might be the spark of happiness someone needed to get through their day. So let us make sure letter writing doesn’t become a lost art.
8. Shopping is chaotic but exciting
Everyone knows that malls and stores are incredibly busy around the holiday season. While I’m not a huge fan of shopping or crowds, going Christmas shopping is an exception. First of all finding gifts, for those who mean the most to me in life, is exciting as I picture their face when they open the gift. Second of all when I get tired and need to rest for a little bit an empty bench in a crowded mall becomes very entertaining. It’s priceless watching the people hustle by, wrapped up in their own thoughts, juggling gifts and kids. I’m fascinated as I watch, wondering what each person’s story is. Furthermore, who doesn’t like a good sale? And stores are notorious for running lots of great sales around the holidays!
9. The reason for the season is deeper than any one of us
If you live with a chronic disease you know holidays can be up or down. I can’t program my body not to have a flare up around the holidays. I can’t command my headaches to go away or the vomiting to stop. And I can either let my disease control me or I can work to control it and not let it take all the fun away. Sometimes I’m not home for the holidays because I’m in the hospital, but again I can make the conscious choice to either let that ruin the holidays or turn it into a different type of holiday. In all reality each holiday is about celebrating something and even if everything isn’t going right in your life doesn’t mean that should stop you from taking a step back and joining in on the celebration. I’m not saying it’s always easy being cheerful when it feels like your insides are falling apart, but when I take control over my disease and participate to the best of my ability I’m happier in the end. Why? Because I’ve made memories that can’t be taken from me. Memories that I can fall back on when I’m down, discouraged and depressed. It’s mind over matter and it’s a hard feat, but it’s doable. So that brings me to the essence of my point. The real reason for the season. It’s not about how many gifts we give or receive, it’s not about songs or movies or decorations or any of that. It’s about cherishing the time with those we love. It’s about making memories even if those memories are made in a hospital. It’s about feeling blessed for the things we still have and can still do even if it’s something as small as moving our arms, drawing a picture or going for a walk. The holiday’s are a time to reflect about what we do have, to love others and show that love to them and to thank God we’ve made it to another holiday here on this earth.
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