You found the secret message! Hi.
Our school play was so boring, I was about ready to claw my eyes out.
After ninety minutes of misread lines and overly dramatic underclassmen, the spring production of Bullshot Crummond was proving to be almost unbearable to sit through. It’s not that I didn’t love my friends whom I was there to support--of course I did! That being said, I didn’t argue when the lights came on for intermission.
Pulling my phone from my pocket, I tapped the screen to check Facebook, as any teenager would. I scrolled past statuses expressing anxiety for tomorrow’s chemistry test (which I probably should’ve been studying for) and gushing about newly found soulmates. Nothing new, nothing new. Scroll. Scroll.
“They say you are never given something you can’t handle . . . but losing your best frien--”
Wait . . .
I’ve never been more frustrated with shoddy wi-fi than I was at that moment.
Sprinting from my seat in the loud auditorium to the double doors of the main entrance, I waited outside for the rest of the post to load. My heart felt as if it was melting onto my ribs. Tears fell to my screen, but I didn’t wipe them off. Maybe they would cover up what I didn’t want to face--erase it. After what was quite definitely the longest three minutes of my life, I was able to read through the post in its entirety. My knees gave out. My phone fell to the concrete.
Alex was dead.
I met Alexandria at Bronson Methodist Children’s Hospital on a rainy day in 2011. I had been admitted to the pediatric floor a week into her “tune-up,” and since we were both cystic fibrosis patients with tired lungs, we ended up resting them in adjacent rooms.
Because we’re only contagious to each other, two people with CF shouldn’t ever be in the same room. In the hospital, they take that rule very seriously, and growing up as one of only two people in my county with the disease, I had no one to confide in. I constantly felt isolated by an invisible illness, and no one seemed to understand--but all of that changed the day my nurse’s gloved fingers slipped a green index card into my palm.
Ten digits followed by a bubbly “Text me!” unlocked the most substantial friendship I’d ever come to know. We clicked instantly. Despite the fact that Alex’s cystic fibrosis was significantly more advanced than my own, we were able to offer each other identical support. We shared an oddly high number of interests (US Women’s gymnastics, writing, Coldplay, etc.), only enhancing our obvious medical connection. Soon, we weren’t just “cysters”--we were sisters.
Alex was the kind of girl who would go above and beyond expectations. She made YouTube videos about her struggle to breathe, each reminding you to live your life for every moment--to savor every breath. The pageviews on her blog exploded exponentially, and they still climb every day, topping 18,000 total. Even after her passing, Alex continues to inspire others.
If Alex had been born with healthy lungs, she still would’ve found a way to leave her mark, believing that it isn’t a person’s situation that defines them, but rather what they do in spite of it. My life is a bit emptier without my best friend, but it’s ten times fuller than it ever was before her. I will always miss her phone calls, birthday packages, and mixed CD’s, but much like her loopy surgery videos, Alex’s words will live on: “I have cystic fibrosis, but it doesn’t--and never will--have me.”
Our school play was so boring, I was about ready to claw my eyes out.
After ninety minutes of misread lines and overly dramatic underclassmen, the spring production of Bullshot Crummond was proving to be almost unbearable to sit through. It’s not that I didn’t love my friends whom I was there to support--of course I did! That being said, I didn’t argue when the lights came on for intermission.
Pulling my phone from my pocket, I tapped the screen to check Facebook, as any teenager would. I scrolled past statuses expressing anxiety for tomorrow’s chemistry test (which I probably should’ve been studying for) and gushing about newly found soulmates. Nothing new, nothing new. Scroll. Scroll.
“They say you are never given something you can’t handle . . . but losing your best frien--”
Wait . . .
I’ve never been more frustrated with shoddy wi-fi than I was at that moment.
Sprinting from my seat in the loud auditorium to the double doors of the main entrance, I waited outside for the rest of the post to load. My heart felt as if it was melting onto my ribs. Tears fell to my screen, but I didn’t wipe them off. Maybe they would cover up what I didn’t want to face--erase it. After what was quite definitely the longest three minutes of my life, I was able to read through the post in its entirety. My knees gave out. My phone fell to the concrete.
Alex was dead.
I met Alexandria at Bronson Methodist Children’s Hospital on a rainy day in 2011. I had been admitted to the pediatric floor a week into her “tune-up,” and since we were both cystic fibrosis patients with tired lungs, we ended up resting them in adjacent rooms.
Because we’re only contagious to each other, two people with CF shouldn’t ever be in the same room. In the hospital, they take that rule very seriously, and growing up as one of only two people in my county with the disease, I had no one to confide in. I constantly felt isolated by an invisible illness, and no one seemed to understand--but all of that changed the day my nurse’s gloved fingers slipped a green index card into my palm.
Ten digits followed by a bubbly “Text me!” unlocked the most substantial friendship I’d ever come to know. We clicked instantly. Despite the fact that Alex’s cystic fibrosis was significantly more advanced than my own, we were able to offer each other identical support. We shared an oddly high number of interests (US Women’s gymnastics, writing, Coldplay, etc.), only enhancing our obvious medical connection. Soon, we weren’t just “cysters”--we were sisters.
Alex was the kind of girl who would go above and beyond expectations. She made YouTube videos about her struggle to breathe, each reminding you to live your life for every moment--to savor every breath. The pageviews on her blog exploded exponentially, and they still climb every day, topping 18,000 total. Even after her passing, Alex continues to inspire others.
If Alex had been born with healthy lungs, she still would’ve found a way to leave her mark, believing that it isn’t a person’s situation that defines them, but rather what they do in spite of it. My life is a bit emptier without my best friend, but it’s ten times fuller than it ever was before her. I will always miss her phone calls, birthday packages, and mixed CD’s, but much like her loopy surgery videos, Alex’s words will live on: “I have cystic fibrosis, but it doesn’t--and never will--have me.”
That is so beautifully written but so sad :-( I also have a child with cf and can only.imagine how things may be for her.in the future. My heart rejoices that you found a sister but also aches for such a deep loss my thoughts and prayers are with you
ReplyDeleteThank you so much. My biggest advice as a young adult with CF would be to let your daughter meet and befriend others with cystic fibrosis. For years, my mom kept me from talking to others with this disease--she wanted to protect me. But, what Alex and I always used to say was that sometimes the emotional needs of CF outweigh the physical ones. Your daughter is going to need people to talk to, and she's going to need people who understand. And even though it hurts like nothing else in this world when cysters and fibros get ill and pass away, I've never regretted letting them into my life.
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