While serving a mission in North Carolina, I was incredibly blessed to meet miss Hayley.
We can all learn a lot from her and her example. Thank you so much for sharing your faith and experiences and wisdom with us Hayley! Without further adeu, I am going to let her take it away:
“Hello people of the internet! Nice to meet you, I am Hayley! I am going to give you a little background on my health issues that I have been facing for a while now. Almost two years ago, I lost one of the simplest, most human abilities. I lost the ability to eat. Every single time I tried to eat or even drink, it came right back up and I was stuck in the bathroom puking. I got so sick and malnourished that I ended up having a PICC line placed in my arm. It is essentially a heavy duty IV. It goes from my arm, into my vein, and goes to the beginning of my heart. Through the PICC line, I administer IV medication and TPN. TPN is essentially a two-liter bag filled with fat and electrolytes that runs on a pump, into my PICC for ten hours at night. It has everything I need to stay nourished.
After some testing, I found out that my stomach and esophagus were paralyzed. It was devastating to be 18 years old and told that my organs were paralyzed. Now I am currently experiencing issues with my joints, a bad hip, an undiagnosed allergy disease that is causing reactions to the simplest things like paper or plastic. I am working with several specialists to find answers to these other illnesses that plague me.
Even though I am nourished via TPN, there are a lot of side effects of not drinking by mouth, and the only thing I eat is toast and crackers. If I am having a bad stomach day, then I throw those up, too. I can’t drink at all. I can only drink a small sip of a Hi-C juice box to swallow pills. So, if I want to clean my room and move around, I end up thirsty. When that happens, I drink a little more juice, and about 30 seconds later, I run to the bathroom to puke. When I want to take a shower, I have to wrap my arm up in Press N’ Seal, and that is quite a lot of work. If I want to go out somewhere like the mall, I can’t touch a bunch of things because I can have an allergic reaction. I have very little energy, and I also suffer from iron deficiency anemia due to the fact I consume no red meat. The side effects of this disease is never ending. It isn’t all bad though, I will assure you that. Through these hardships and trials that seem never ending, I have been touched so much by love.
This is my love story.
I would have to say that one of the most powerful forms of love I have experience in life in general and since becoming sick, would be the love from my mother. Early on, she was always there for me. Anytime I needed to go to the ER for dehydration, she was ready to take me. Some days when I felt like everything I had in my life had been taken away, she reminds me that there is always hope. It is exhausting being sick and unable to eat. There are so many side effects of this disease known as gastroparesis. I would tell her I just couldn’t see another specialist, I couldn’t have another procedure done, but she was always there telling me that it would all be okay.
I recently had Botox injected into my stomach, which is a common procedure for gastroparesis… When I woke up from the procedure, my mom was right there. Her love is purely unselfish. She constantly reminds me, that even though I am sick, that my trials and illnesses can help other people. She reminds me that being in a research study, being a guinea pig, and not having all the answers right now, might just help another suffering person. Maybe me being so open about this illness, will help someone else, too. I think that is the ultimate form of love because love is unselfish.
Not only have I felt love from my family, but I have felt love from strangers, friends at church, and much more. Each Sunday, I am greeted by friends at church asking me how I am. Asking me how I feel and what they can do to help. Countless people have done small but mighty tasks of service for me. Some people bring me balloons or cards. Some people come to just sit and talk with me and visit. It doesn’t take grand gestures to show love to someone. I can tell you that every little text, phone call, message, visit, or hug, means more to me than they may ever know.
I would say that my view on love has changed since I got sick. Before I was sick, I had all these grand plans for myself. I was 18 and I was graduating from high school. I was going to go to college, and then onto medical school, I wanted to focus on emergency or family medicine. I planned on being an amazing doctor. All I ever thought about was medical school and being a doctor. I didn’t care if I got married and had kids, it would happen when it was supposed to and I was just going to live my grand doctor life.
However, when I got sick I realized as time went on, there was no way I could physically make it through medical school. I let my dream go and it was devastating. Currently, I take online college classes and am working towards a nursing degree. I want to be able to transfer to a four-year college, and finish nursing school there. However, making plans with an illness, doesn’t always work out. I am just winging life right now.
It’s okay though because I found a better dream.
Now, all I really want in the world is to have my own family to love. I found it won’t matter in ten years if I have a degree from somewhere, it won’t matter if I have my dream job. All those things can go away so quickly. All these things are so temporary. I won’t die one day saying, “Wow, I am so glad I went to work that one day.” No! All those things are so temporary. What matter is love, and family, and friends. Love is eternal. Love is strong enough to carry on after death. Love is unending. Love is what matter most on this earth.
My love story is unconventional. This isn’t some Taylor Swift song where you just say yes in a white dress. My love story is about pure, unselfish, kind, and unending love. The kind of love that makes you want to get out of bed in the morning. The kind of love that makes you want to make people laugh and be happy when they are down. My love story is unique and different, but it is mine, and guess what! I love it.