“You must be cursed. I mean there isn’t any other feasible explanation for why you’ve had to live your life battling a chronic disease. A disease that causes you to live each day like you're sick with the stomach flu. It’s just doesn’t make sense” he told me with a look of confusion in his eyes.
“Sometimes life just doesn’t make sense.” I replied with a small smile, “but perhaps instead of being cursed I was given a blessing in disguise.”
I was born with a chronic disease that ultimately was diagnosed as gastroparesis with dysmotility of the digestive tract and hyperalgesia. In simpler terms my digestive tract is almost paralyzed and I'm super sensitive to pain. This disease has progressively become worse over the years until the point I'm at now. A point where I'm unable to eat food or drink beverages without vomiting. So I receive all my nutrition through a central port (basically a big IV). My nutrition is called TPN (total parenteral nutrition) and is delivered each week to me from my medical supply company. The TPN is a highly sophisticated IV solution that is tailored just for me and my needs. No two people have exactly the same TPN formula. My battle hasn't been easy, but I have learned many important things through it and have grown stronger as a person.
Battling anything, whether it is a physical, psychological, emotional or spiritual fight is incredibly hard. Many succumb to the depression, despair and turmoil that this fight brings and ultimately decide that the fight is no longer worth it. There have been numerous times that I have wanted to stop fighting. Times where I think giving up would be so much easier, because I'd go Home to Heaven, a place where no pain or suffering exists. Yet, I've realized that if God is still putting air in my lungs, then He must want me to keep fighting, so fight on, I will.
Let me tell you why living with a chronic disease is really a blessing in disguise.
Do you know how we all say that we would fight for those we love if we could? Well, I get the privilege and honor to fight for those I love, like my family and friends, every day because I have to fight to live. As I mentioned earlier, every second of every day is a battle. I have to fight against succumbing to my disease, to letting it win. I have to make the conscious decision to keep fighting no matter what I'm up against. So regardless of what you're suffering from, be it something psychological, emotional, spiritual or physical, each of you are fighting for those you love when you fight, one more day, against whatever you are suffering from.
I love fighting for my family for they are an incredible group of people.
I am my father's daughter. Tim Fox is an incredible man full of wisdom, patience and integrity. As a retired Navy Captain he knows nothing about the medical field. Yet he does his best to learn what's going on with me so he can support me through each struggle. He is my king and I am his princess. He was the man I first loved and I wouldn't be the woman I am today without his love and support.
My amazing mother, Cynthia Fox, is a nurse. And boy am I blessed to have a nurse as my mother. Even after I turned 18 she told me she would still come to doctors appointments with me and she has kept her word. She has traveled around the country with me. Acting as my advocate, supporter and had wrapped her strong arms around me countless times when I didn't think I could press on anymore. She too has made me into the woman I am today. She has become more than my mother, for she is also one of my best friends.
Kevin Fox is the brother anyone would wish for. His carefree nature reminds me not to take life so seriously. He was the first boy I loved and is my world. I used to pray more that God would spare him from my disease than that God would heal me. Although he hates hospitals he still sacrifices his time and wants to come visit me when I'm hospitalized. When he walks in the door life just seems better. He is my protector, my best friend, and one of my greatest supporters. I love you to the moon and back little one.
I have absolutely amazing friends. When you suffer from a chronic disease you learn that many people will walk out of your life when they realize how sick you are. They are trying to protect themselves from the pain of losing you, but when they leave they leave wounds on the your heart. Losing a friend is never easy but it's even harder when you have a chronic disease because your support group is what gives you the drive to keep fighting. That being said those people that stick with you through the ups and downs are true friends. Friends who won't balk when you're in the hospital. Friends who make your life worth fighting.
Let me tell you a story. I have the privilege of knowing an amazing woman whose name is Nicole White. We began our undergraduate career at The University of Florida (UF) together. I met her because I joined the club lacrosse team. Now let me tell you, even though she'd never admit it she is an absolutely incredible lacrosse player, she was first string from the moment she joined the team. However, I was on the other end of the spectrum. I'd never touched a lacrosse stick in my life and when they told us to bring a penny to practice I thought they meant an actual penny. Yes I was that naive about the sport. Anyway over my freshman year I learned how to play the sport. I was deathly afraid of Nicole because she was an absolute beast on the field. She was never mean to me, but I still was still afraid of her. After my freshman year of college I went home to Colorado for the summer. During that summer my disease took a turn for the worst and I was hospitalized. I was told returning back to Florida, for my sophomore year of college, would not be possible. I was heart broken. I thought I'd lose all my friends down there especially the ones on the lacrosse team. But guess what? I only became closer to the lacrosse team because of the amazing Nicole White.
That fall her, Katie Weizs and Sarah Sarnoski collected letters from the team for me. They had each player write a letter to me, whether the player was a new one or a returning player. Then they sent me a giant box of letters, which made me cry and gave me hope that I wasn't alone.
But Nicole White didn't stop there. It was February of 2012 and I had been readmitted to the hospital for a third time that year. I was heart broken and didn't have any fight left in me. One day while in the hospital I started getting Facebook notifications. It said I was tagged in a series of pictures. I was so confused. So I logged onto Facebook and saw that a cardboard cut out of me was traveling to California, with the lacrosse team, for their yearly tournament there. I couldn't believe they had done that for me. That simply act of kindness gave me the extra push I needed to keep fighting. And who orchestrated that, you ask? Well none other than Nicole White.
When I returned to Florida for my Junior year of college I was welcomed with open arms back onto the lacrosse team. I wasn't able to play but I stood on the sidelines ready to cheer on and support my teammates like they supported me. I became close to a number of the girls. And even though I couldn't drink alcohol they still invited me to go out with them and to their house parties. They are one of the number one reasons why my time at UF was as incredible as it was.
Let me tell you one more story. Remember that year I was in Colorado? Well that summer before I started getting sick I met this girl named Erica Emanuelson. When I got sick she was the first person who came to visit me after my first set of operations. She is always real and honest with me and is not afraid to make fun of me and she brings lots of laughter with all she says. Erica left for college that fall. But during the time she was away at school, I got a part time job at Target. While I worked I had to wear a backpack on my back. It held an IV bag which was attached to a tube in my stomach. Many people gave me strange looks but three girls in particular took me under their wing and refused to let my medical issues stop them from becoming friends with me. One of the girls, Jourdan Squires, created orange and blue (UF school colors) livestrong type bracelets that said "We love Kristen Fox". She distributed them to the other employees at the target store and even sent them down to my lacrosse teammates in Florida. I was touched very deeply by this act and couldn't believe that people had bracelets for me!
Those are just two stories that demonstrate the amazing people I have in my life but there are countless people who continue to keep me going. Like Meghan Neary, who texts me every single day and has saved up her money twice so she could fly out to Colorado to come visit me and let me tell you those tickets aren't cheap. Or Mike Spegle who is basically my big brother and took care of me during my last two years at college and who still calls me to check in on me regardless of the fact that he's incredibly busy. Or Dan Jones who's brightened my life in countless ways. Irregardless of the fact that his friends have asked him numerous times how we have fun since I can't eat. Well he's taken me on trips to the zoo, a wildcat animal refuge (where I held a baby tiger) and many other things! So you see I have been blessed with many true friends.
Many ask if it was possible for me to be born without my disease would I chose that? My response may surprise you, but I would say no. I've prayed for many years that God could use the bad of my disease to bring good to others and I have begun to see that being played out. If I hadn't suffered first I would never understand someone else's suffering to the extent I do. There are countless lives I never would have had the opportunity to touch if I didn't have my disease. So no, if I had the choice, I would chose to have my disease. It has given me a perspective on life I never would've found. It has prompted me to pursue the medical field. I plan on going to Physician Assistant (PA) school this coming January. I look forward to the day where I can look into my patient's pain filled eyes and let them know that I understand what it's like to suffer and to hurt, but I am here to help them and will do everything in my power to ease their suffering. Then hopefully I can watch those pain filled eyes slowly transform into eyes full of hope.
Living with this disease has inspired me to write two books. To be honest I never envisioned writing a book, let alone two, but God had different plans. I began writing essays about what it's like to live with a chronic disease for a lady who was studying kids with cystic fibrosis. Her goal was to learn what life was like for someone who grew up with a chronic disease. While I didn't have cystic fibrosis, I did have a chronic disease so I asked her if she wanted me to write about my experiences. She readily agreed and so I began to write. Each essay I wrote I posted on my caringbridge page. Pretty soon people were telling me I should write a book. I told them they must be joking because I knew nothing about writing a book, but they insisted. My surrogate grandma, Mel Kenaston, suggested I send some of my essay to Janis Long Harris, the director of publishing at Tyndale House Publishers. I agreed to send her some of my essays, never thinking I would hear back from her. But less than a month later I had an email in my inbox from her. She said my writing style was one they had never seen and that I could very well publish a book. I took that as a sign and began the self-publishing process. On January 12, 2015 I published "A Blessing in Disguise". Nearly seven months later on July 8, 2015, I published my second book, "Blessings in Hidden Places". Through writing I realized that I began to heal from psychological and emotional trauma I didn't realize I had sustained. My greatest wish with these books is to bring hope to others and maybe show them how they too can heal from what they are suffering from and find peace. If you'd like to check out these books you can find them on my Amazon author page: www.amazon.com/author/kristenfox
I have had the opportunity to travel around the country and see many different doctors. I am thankful for the healthcare I do have as I know many people in this country and others are not able to receive the care they need. I have been blessed to have many fantastic doctors take care of me. One such doctor, Dr. Phil Rogers, was my pediatric GI doctor for many years. Even though I no longer see a pediatric doctor and I live halfway across the country from him, Dr. Rogers still takes the time out to call me and ask how I'm doing. He is one of the greatest doctors I know and I wish every knew doctor could train under him. I believe one of the biggest crises facing our health system is that too many health care professionals lack bedside manner. I believe bedside manner is crucial. Patients want to be treated like a person, not a chart. When a health care professional shows genuine care and concern for their patient this can make their patient more willing to trust the health care profession and share information with them. Vital information that the health care professional may not hear if they make the patient feel like they are just another block on their checklist of patients they need to see.
As a result of my disease my faith has grown stronger. If you've never heard of the "Footprints in the Sand" poem, I highly recommend it. It tells the story of a young man who is looking back on his life after he has died. His life is represented as a path through the sand. In the sand he sees two sets of footprints. His own and those of Jesus. However at some of the toughest times of his life he notices that there is only one set of footprints in the sand. He turns to Jesus and asks him, "Lord why did you leave me during the hardest times of my life?" Jesus answered, "My precious child I would never leave you. Instead it was during your times of pain and suffering that I carried you." I know if I were to look back at my life over the past few years I would only see one set of footprints in the sand.
I've learned to appreciate the little things in life. Whether it's the gorgeous sunsets over the Rocky Mountains or watching my parakeet, Sky, take a bird bath, I have learned to value the small things. When you have this outlook it makes the big things seem even more fantastic. No one knows how long they have on this earth so while you're living why not appreciate the little things that life has to offer. For example, I used to take showers for granted. I took them for granted up until the day when I couldn't take a shower without having to cover up a part of my body so it wouldn't get wet. Once a week the needle in my central port is changed out. So from Friday morning to Friday evening I don't have a needle in my chest. This is simultaneously the one day a week where I don't have to wear a shower guard over my port. Instead I can take a shower freely and let the water and soap run everywhere on my body. It's a great feeling, but a feeling I took for granted until I couldn't shower normally. So don't take those little things for granted because you never know when you won't be able to enjoy those little things like you used to be able to.
I also took for granted food and the concept of eating. Right now I can't eat or I'll vomit. It's as simple as that. Where it gets complicated is that even though I can't eat, I still crave food. So in order to compensate for this craving I chew food and then spit it back out before I can swallow it. It's a weird way to do it but it helps keep me sane. I've also had to learn how to use moderation in the form of "eating". I used to "eat" tons of different things in one sitting. I knew deep down inside that this wasn't the best course of action but I couldn't stop myself. I desperately wanted all of this food. After talking to my parents I realized I need to break this habit and overcome my addiction to food. You may ask how can you be addicted to food if you can't even eat? To be honest I'm not sure how, but I know I was and I'm working daily to break that addiction. Ultimately this battle will also make me stronger than I am now.
So you see, living with my chronic disease has become a blessing in disguise. A blessing not a curse. A means by which I can bring hope to others who are fighting similar battles. So I encourage you to also look at your suffering as a hidden blessing and find ways you can turn the bad into good for those around you.
If you need to talk. If you feel as though the fight has left you. If you don't think hope exists. Email (email@example.com), tweet (@kfox__) or Facebook message me and I'll show you that hope is still out there.
For More Information About Kristen Fox, please email: firstname.lastname@example.org