We all wear masks so only our eyes are visible. Each set representing their own darkness and light. Some are with their spouses, their parents, their support. Some are alone. Some are frail. Some wear oxygen. Some are wild-eyed and observant. Some are boisterous with laughter.
I want to question the intriguing, but I’m unsure if they share the same wonderment as I.
No one dare touches the magazines. We are all germophobes.
I hear deep, aggressive coughs. I hear the painful struggle to breathe. I hear the scratchy voices from life-long trachea abuse.
The mothers’ quietly comfort their children and the friends joke about anything to ease the thick, suffocating air.
We all carry sputum cups, each of us hiding them politely. We breathe into big machines that measure our lung function and then we either celebrate the outcome or sit solemnly with our negative results.
We reflect on our lives, the things we could’ve done differently, and wonder how much time we have.
When my name is called I get sad because for just a few moments I’ve felt at home with the only people who truly understand me and my body, yet we don’t even know each other's first names.
My stepfather and father are two very important and special people in my life. Both share their own stories about having a daughter with CF.
"My Little Angel"
My name is Jimmy and I’m Alexis’s dad. About six months after Alexis was born, her mother and I found out she had cystic fibrosis. Whenever my little girl got a cold it seemed like it would take forever for her to get rid of it. Her pediatrician would prescribe antibiotics but the colds kept coming back. One trip to the local doctor’s office in Frederick, MD changed our lives forever. Her pediatrician took a sweat test which came out positive for CF. Before we knew it, we were at Johns Hopkins Hospital in Baltimore, where they performed the test again. The results were the same - positive for CF. Her mother and I were stunned because we didn’t really understand the disease. We quickly learned about CF and started treating Alexis with proper nutrition and chest physiotherapy. You would never have known there was anything wrong with Alexis, but on the inside things were different than my wife and I. Understanding the disease made coping with it easier. She was only “different” because of a single defective gene.
I’d pray every single night while rocking her to sleep. “Please give this to me, not my little angel Alexis.” It seemed like God wasn’t answering my prayers. As time went on, Alexis got a little healthier. Before every meal, Alexis had to take enzymes that we’d mix in applesauce. She was so good at complying with this “chore.” I wonder to this day if she hates applesauce considering she ate it three times a day or more. When she was old enough, she started swallowing the enzymes with water, which I am sure was like Christmas to her. When Alexis was old enough to realize there was something different about her she began to ask questions. I could only answer to the best of my ability, since she was just a toddler. She understood.
My little angel is the toughest and smartest daughter any father could have. She is my idol because she goes through so much each day. God has answered my prayers in different ways that I now understand. Today, she is independent and traveling and doing things that remind me of myself. I see a lot of myself in her, as well as her mother. She is one determined angel ready to conquer the world.”
“Wow. Where to begin? Alexis was eight years old when her mother, Nesha, and I started dating. Meeting Alexis for the first time was a bit nerve wrecking for me. Nesha had invited me over for dinner where she introduced me to her little girl. I had brought a few games over because I figured Alexis and I could get to know each other through playing pick-up sticks and other silly games. Alexis was very stand-offish and wanted nothing to do with me. It took her quite a bit to warm up to me. She had been let down before, so earning her trust became my main mission. Once we started spending more time together, our relationship quickly changed for the better. She was able to feel comfortable around me and secure enough to talk about cystic fibrosis. It didn’t take me long to fall in love with this little girl who was born with such a terrible disease. Upon this, Nesha had informed me about cystic fibrosis, but I hadn’t expected the wild rollercoaster of a ride that was ahead of us all. Nesha and I were married two years later. I didn’t just exchange vows with her mother, I also vowed to Alexis that I’d be by her side forever. I even promised to her grandparents that as long as I lived, Alexis would be my top priority.
Throughout watching and listening to Alexis, I have learned so much. She has taught me how to be a better person and to live each day, happy. She has proven to me that laughter is the best medicine.
Alexis and I have been through a lot during our 19 years together. Tears, laughter, and everything in between. She’s not always an angel, but it’s never long before I’m back to being proud to be her stepdad. We’ve spent holidays in the hospital together, just her and I. I was there to watch her graduate high school, celebrate her 21st birthday, and watch her take the CF wonder pill, Orkambi, for the first time.
Life with Alexis and cystic fibrosis hasn’t changed much for her or myself - bottom line, she wouldn’t let it. As you can tell my perspective on being a stepdad of a child that has CF is a bit different. No gloom and doom and sadness from me, and guess who taught me that?”
-Stoney, my amazing stepfather
Some of my dearest friends have contributed their own experiences of what it's like to have a best friend with CF. These ladies truly mean the world to me.
“When I first found out that Alexis had Cystic Fibrosis, I was confused and unsure about what that meant for her and her future. I was young, and hearing that one of your best friends has an illness that there is no cure for, was a scary thing to comprehend. I had never met anyone with CF before, so I was completely oblivious to what Cystic Fibrosis was and the severity of the disease. Over the years I have come to understand a little more about the disease and I believe this has helped me learn more about who Alexis is as a person. Anyone who meets her can tell you that she is special, and within minutes of being in her presence you are guaranteed to be laughing. She is happy, positive, and strong; Unapologetically herself. At first glance, you would never know that she is sick by her attitude, and I think that is really inspiring. Her outlook on life is one that I admire and aspire to adopt for myself. While I believe it is human nature to be protective of the people you care about, I think being close with someone who has a disease makes you even more protective of that relationship and that person. I can think of many times being in a situation that would be considered "unhealthy" for a person with CF, such as being around someone smoking, and wanting to speak up on her behalf. Sometimes I have, and sometimes I have held back because if theres one thing I have learned about Alexis, it's that she is not afraid to speak up for herself or anyone for that matter. From this friendship I have gained the idea that everyone is given certain circumstances, and you can either choose to let it destroy you or uplift you. While I believe that living with CF has definitely shaped who Alexis is as a person, it has not defined her or prevented her from living her life to the fullest, even though at times it gets hard. Thankfully, advancements in medicine have made it so Alexis has a better chance at a longer life expectancy. However, time is still a very precious and wicked thing that my friendship with her has taught me not to take for granted.”
"I first met Alexis when we were 14. I was super bitter because I had just been moved from an English class that had been over-filled with my closest friends. I was the only one in our “group” that was forced into a strange new class. I knew no one, until I met the girl sitting next to me. She was new in town, dressed a little different than me, and she had the craziest, loudest laugh I had ever heard- but it was infectious. Little did I know, that laugh would become one of my favorite sounds in the whole world… and the girl behind it would grow to be my best friend, my first roommate, and through the years- my family.
From the get-go, I knew Alexis was hilarious, loving, kind, and completely filled to the brim with personality and life. There was never any sign of anything holding her back or making her any different than me. She was an active, social, strong young lady. It wasn’t until about 4 months of our quickly growing friendship that Alexis rocked my world with news that she had dealt with since she was a toddler.
One random night as we danced around her bedroom and gossiped about boys, Alexis suddenly started to cough. And it wasn’t just any cough- it was deep and aggressive. It scared me to the point that I asked if she needed some water, some help. This is when Alexis told me- she had Cystic Fibrosis.
“What the hell is Cystic Fibrosis?!” I had never heard of it. I almost didn’t believe her, I didn’t believe that someone so much like me could have such a severe, life altering illness. I remember going home the next day and talking to my mom about it. Even though she has worked in the medical community my whole life, my mom didn’t even know much about CF. But the more I fell in love with Alexis, the more I researched. I wanted to learn all that I could about what my best friend was dealing with. I wanted to know why the hell her life expectancy was so much shorter than mine.
It wasn’t fair. Call it selfish, but I would get so upset thinking about the possibility of losing her. I will never forget the day Alexis and I went to the funeral of another local boy with CF. He was our age. He had a lung transplant and everything- but his disease won the battle. This reality knocked me out cold, I started to think about how I was actually going to deal with the loss of my best friend. We were so young and so full of life- the thought was consuming. And the more I learned, the more I wanted the world to learn. I wanted everyone to know what she was going through and how awesome and resilient she was- but I was sworn to secrecy. At that point, she wasn’t quite comfortable telling just anyone about her battle. She kept it to herself and silently fought for a “normal” life.
There were times in high-school where we tried to be too “normal,” doing things we knew were idiotic and detrimental to her health (and mine, now that I reflect on it). There were also times where Alexis and I would fight like true sisters because I didn’t think she was taking care of herself. I would nag her like a mother asking, “have you done your vest lately, I think it’s been a while?” Living together got intense at times. I cared so much about how Alexis treated her body that I forgot to care about her emotional health and well-being. After a few months, we parted ways from our shitty little house on Carolina Beach Road. There were even times when we didn’t talk. I didn’t know how to be the friend Alexis needed back then. But as I said earlier, we quickly remembered that we aren’t just friends, we are family.
Now that almost a decade has gone by since we lived together (holy shit we’re getting old) I am so completely aware of the beautiful, strong friendship we have. In that decade I have witnessed miracles. I have witnessed the research, development, and introduction of Orkambi- a treatment with the potential to give her the quality and length of life she deserves. I have seen Alexis accomplish so much. She has taken chances, been brave, lived on the edge, pushed her boundaries, and discovered her true calling. She is here to inspire others that they are beautiful, capable, invincible, and important. I am constantly reminded of the independent, healthy, courageous, badass woman that Alexis truly is. There is nothing holding her back. Through all the things she deals with on a daily basis- she has still been a constant support for me and for all our friends.
Through it all she inspires me to be strong, be kind to myself, to enjoy every single minute, and to laugh as loud as possible!"
I've asked some very special people in my life to write about what it is like to have a daughter, family member, friend, girlfriend in their life, who has cystic fibrosis. I did this so people could develop a new frame of mind about loving and living with someone who has a chronic illness.
I've come across many people who view my disease as unfortunate, depressing, and ultimately feel that my existence is a burden on others. This is NOT how my life should be idealized. In fact, it's purely insulting to my loved ones and I.
The first writer to contribute a brief summary of what it has been like to have me, a CFer, in their life, is my ex-boyfriend, Eric. I asked him to write because I wanted every perspective possible. In my dating experience, I have found that it's very hard for other people to want to be with someone with a chronic illness. It's all very pathetic to me, however, I get that some folks aren't emotionally willing and able to care for someone with a disease like mine. Eric was different in that none of this was ever even a thought for him. He supported and loved me for me, not because of my disease.
Below are his own words of what it was like to be my significant other...
"I was asked to write about my experience about dating someone who was diagnosed with cystic fibrosis. To be truthful, when I met her, I had no idea that she was any way different than any other girl I have ever met. I couldn't have been more wrong but not in any way that had anything to do with her illness. She is outgoing, social, funny, spontaneous, and very pretty. She cares about her friends and she cares about herself, and she was never afraid to tell you her opinion. When we first started dating, I didn't even really know what it was to have CF and I never knew what the symptoms were. She was very upfront with me and told me what was going on. In finding out about the illness, I remember going with her to the hospital when she had to get IV treatments and getting results for PFT tests. I remember her getting very excited or very concerned based on those test results. But through every roller coaster ride at the hospital, I always knew she would be ok. I cant explain it or quantify it in any medical way, but she really was/ is full of too much fire for me to think of any other outcome. While we don't date anymore we remain very good friends. My family loves her and my friends love her and they always ask how she is doing. And the thing that makes me happy is that they are generally not asking about her health. While they know she has an illness, and certainly that is a concern, but they don't see her as ill. And I love that."
Above is a diagram of all the symptoms and manifestations that occur in people with cystic fibrosis.
Personally I have experienced and developed the following:
- Vitamin A, D, E, and K deficiency
- Chronic cough
- Mild clubbing of the fingers/mild "barrel chest"
- Inguinal hernias (left and right) due to the pressure and intensity of coughing
- Gastrointestinal bleeding (recurring)
- Bronchitis & recurring lung infections
- Hemoptysis (blood in sputum) due to broken blood vessels in airways and scar tissue in lungs
- Decrease in lung function
- Insulin deficiency (hypoglycemia) due to abnormal pancreatic functioning
- Chronic fatigue
- Sweat glands producing salty sweat due to the sodium chloride correlation of CF
Some patients with CF show different symptoms with different severities. No patient is alike, therefore it is important to know each individuals case and experience with the disease.