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."
At 25 years old I finalized my will. I welcomed this challenging process in a casual, nonchalant, even humorous manner. How else could I have handled such a morbid situation? The documentation took me about a week to complete. During this time I was pretty stable and comfortable with the planning. However, after it was completed, I succumbed to the Goddess of Wine and let the tears flow. I grieved my own hypothetical death.
I’ve compiled a satirical list of things to be prepared for when planning your death:
I hope you’ve gathered some valuable life lessons or in this case, death lessons. All in all, we shouldn’t take death SO seriously. It literally happens to everyone. Call me “morbid,” or “creepy,” or call me “death positive.” I don’t really care. Every life should be honored and legacies should remain, but death shouldn’t be so tragic.
Being recently diagnosed with the mood disorder, bipolar II also known as bipolar light, I’ve come to realize the roots and reasonings of my previous behaviors and actions. Having bipolar II is much different than bipolar I. I start by establishing this because the second I mention bipolar, people often misconstrue the meaning and aren’t aware of the different types. Bipolar II consists of episodes of severe depression and mild manic symptoms. Bipolar I is when a patient has extreme manic and depressive episodes. Basically, I have the low, low’s without the super high, high’s.
It’s no secret that I’ve battled bouts of depression. I’ve experienced four major episodes. My depression is cyclical, meaning I have recurring episodes every few years. This has been the case since I was 15. Sometimes I can recall depressive episodes happening before then, back to the age of 8.
Childhood anxiety and depression is terrifying, naturally. No child should have to endure that emotional pain and disturbance. I’d have night terrors, trouble sleeping due to the sheer fear of closing my eyes, obsessive-compulsive thoughts and habits (i.e. sitting at my table counting to 100 everyday before class began in the first grade), anxious thoughts about my loved one’s safety, any emotional disturbance making me physically ill, and more. I was an 11 year old girl carrying the fears of an overly-stressed, middle-aged being, relying on verses (that I did not understand, what-so-ever) out of my Precious Moments Bible to bring me comfort.
As I grew older, my symptoms of depression started getting more severe. Dramatic weight loss, major fatigue, loss of interest in just about everything but sleeping, etc. Sometimes I'm too tired to be sad. The physical toll depression takes is just as painful as the mental and emotional parts. Sometimes it's even worse.
The anxiety takes ahold of my thoughts. They race so quickly. My brain thinks of things I don’t want it to; scary things, and it doesn’t stop. I try and distract myself with pleasant thoughts like visions of pretty flowers and lyrics to sweet songs but nothing sticks. Times like these are when I have to dig out my bible and dive right in… Of course, now I have Google to help me out with verses I still can’t quite grasp.
On top of those lovely anxious thoughts, my social anxiety can get OUT OF CONTROL. To keep my thoughts and my voice relaxed when talking to someone else, I fidget with my hands, fingers, and jewelry (hello, that’s why I wear so many rings). If I focus my anxiety onto my hands, I have more flowing, normal thoughts while conversing with others.
Then, there is my mania. Mwahaha.
Oftentimes, anxiety evokes or develops into manic episodes. My manic episodes aren't severe as stated in the first paragraph, but definitely creep up on me pretending to be “fun and spontaneous” ideas, when they’re truly impulsive, dangerous, and unhealthy behaviors. Learning the difference of the two is the fun part.
Since my diagnosis, I have been backtracking my previous decisions and evaluating from which of the two reasons they were made. So far, most of them have been classified as the oh-so-fun, impulsive, dangerous, and unhealthy manic, me. I never really knew that this mood, a.k.a mania, had a rhyme or reason. I honestly just thought that mood was part of my personality. What made me, me.
This is where it might start sounding a little confusing. You see, that manic mood is still what makes me the person that I am, but there’s a thin line to that edginess. A line that I now know is very unhealthy to cross. The medications that I have been prescribed to stabilize my moods makes me pause and really evaluate my decisions and tactics when reacting to situations. I consider actions and behaviors that will positively impact me as healthy, where as the other ones that will negatively affect me as, not so healthy.
Yes, this all may seem so easy and simple to you as the reader, but to me, none of these thought processes ever processed! It’s humorous to me now. Not so much that I look back and think that my old train of thought was a complete joke, but that I never had the tools to realize that there was actually a biological answer to the (cough, cough) problems I was having.
After becoming quite acquainted with my mood disorder, many things have been brought to my attention as far as treatment. Bipolar is nothing to cope with alone, especially since you’re already isolated in the bubble that is mental illness. I said, “you’re” because I’m assuming that if you’ve read this far you’re still intrigued and want insight to how the disorder really feels, or you have mental health matters of your own. Either way, no one’s judging here.
The National Alliance on Mental Illness states that 1 in 5 adults in the US experiences mental illness in a given year. That means that when you’re at school, work, hanging out at a bar, or in any other public place, you’re going to run into someone who has experienced mental illness. So that means we should all probably be a little kinder and warmer to others considering the facts.
People need people to survive.