Five Feet

by Jade Hiltner 22 days ago in family

The distance between life and death

Five Feet
Five feet=sixty inches=one pool stick

Five feet, sixty inches is the distance teenager Stella lives her life by, organizing her medications, decorating her hospital room time after time again, living by every single rule made for her. The daily routine was the only familiar thing in her life until she met Will, another Cystic Fibrosis patient a couple of rooms down, he made her question the rules and believe there is life still outside of the hospital walls. Five Feet Apart was written by Mikki Daughtry, Rachael Lippincott, and Tobias Iaconis, published in 2018, it quickly became a favorite for readers because of the emotion, plot, character development, and real life struggles for CF patients that were brought to light.

Cystic Fibrosis is a terminal lung disease that you are born with but it's not always found right away due to the fact that unless you know you are a carrier of the gene, there is no physical way of knowing, which usually results in two people having a child with CF but unaware of why they are constantly sick or not breathing the best. According to Google this disease is considered rare, meaning there are less than two hundred thousand cases per year in the United States, but it doesn't seem like it when you chose to marry someone who was cursed with this disease. There is currently no discovered cure for CF, meaning the patient live day by day frightened that today is their last day, the authors of this book did something amazing and put the suffering of daily routine for a CF patient on the big screen.

My husband was twenty one when we met, he stands at six feet and two inches tall, but never weighed more than two hundred pounds, he looked like a bone rack and certainly wasn't my average taste in men, but my God he was the most amazing person. I was nineteen and not looking for anything serious but with him, it all came so easily that I couldn't see my life heading any other way. About three months after we started dating, he finally opened up while he coughed so much and couldn't go in a hookah lounge, which is where my friends and I would go every week to do homework and help one another out on projects for our college courses. I instantly went back to my dorm to do research because I had never heard of this disease and thought, is he just trying to impress me or is this something real that he is dealing with? I was always a very healthy person, who rarely went to the doctor and didn't like to take medicine even when I did catch a cold, so it was difficult to wrap my head around something so complex that he was on nine different medications just through his nebulizer, had a vest that got blown up with air and shook him for twenty minutes to loosen the mucus, and exercise was the reason of when he felt decent or not. When he did finally discuss his condition with me, he also informed that he was sixty-five percent sterile and there was a very good chance he wouldn't be able to have children naturally and maybe not even at all. I felt like someone has punched me in the gut and my lady loins, was I ready for something like this at nineteen years old, could I support this man the way he needed to be so young in my life, would our love be enough for me now and later on down the road, could I make it if something happened to him before I was ready? So many questions were raised in my head but it only took one look at him to decide an answer. This man told me about his condition to give me an "out" so I didn't feel obligated to take care of him or love him even though he wasn't a normal college kid and that to me took a lot of guts.

Five Feet Apart opened up my mind so much more than I ever thought it could be towards this disease, I thought I was educated on it pretty well after I stayed with him and we decided to get married but this book and movie just proved that my learning will never be done. I didn't realize the agony the patients feel restricted and confined, even though he has never been hospitalized, it still was a complete wake up call of how important it actually is to follow the rules and not live like you don't have a terminal disease. For the first couple of years, that's what he did, he worked jobs like crazy to pay for his insurance, he would go out late at night to the bars and hang out with our friends but would get a couple hours of sleep then have to go back to work and miss some treatments. I was too young and naïve to also realize that he was slowly adding to his death sentence before we even had to chance to explore children so I didn't push him to follow these rules and I didn't go to his specialist appointments so find out what he could be doing more of and how I could support him more. Much like in the book, Stella felt she lost a lot of her support when her sister Abby passed suddenly through a cliff-diving accident, she didn't have someone to constantly visit close to her own age, she didn't have someone to sing to her before every surgery she had, she lost a sister and a friend, which feels like your whole world when you have so many restrictions to begin with. Then she meets Will, the other CF patient that acts like he doesn't have the disease and follows no rules unless Stella makes him, she finds joy in helping him get his life back on track and educating him on how important it is to follow your restrictions but still be yourself. This book gave such a powerful message, that it had me in tears many of times because I could relate so well due to my husband's own stubbornness at taking his medications and keeping up with his health.

Fast forward to now, we have been married for six years in September of 2020, we have one beautiful baby girl who is now three and healthy as ever, and we have built the most amazing life together. Every morning we go on a family walk around our thirty-one acre farm first thing in the morning, we make breakfast together, take all of daily vitamins and medications, he plays a quick video game or two while he does his vest then we start our work day. They also very recently came out with a drug that freezes their condition where it is, meaning they don't get worse or better, it stops the condition from progressing either way which is a total win for us. People ask me all the time if it's hard being a wife to someone with CF and my answer is always the same, of course it is but I wouldn't trade it for the world because we have explored so many new places together, made a family, bettered one another time after time, grew up together and still learning new things every day about each other and the crazy world around us. Five Feet Apart taught me several different things but the most important being, everyone deserves to be loved sick or not because if I can give that love and support to someone, even if it's only for a year or two, then that would be my greatest accomplishment yet.

I would encourage everyone to read this book or even just watch the movie so you can be reminded of how humans should treat one another and how happiness should be a product of your daily routine. We may not always get to have the nicest car, biggest house, be debt free before the age of forty but that doesn't matter, if we aren't living our lives like it's our last day and supporting the ones who mean the most to us every single day. When it comes my husband's time, I want to be able to sit at his funeral and think of all the places we went, adventures we had with our daughter, and smile, knowing we didn't leave out anything and right now we are well on our way down that path.

Thank you to all that support us, the authors of this book for bring CF patient's struggles to life, and making people believe in living again no matter what they think is holding them back.

Jade Hiltner
Jade Hiltner
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Jade Hiltner

Wife. Mom. Boss. Helping create a beautiful world one word at a time, please enjoy some of my deepest thoughts, craziest stories, and hectic life as I continue on working towards expressing myself.

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