When someone with Cystic Fibrosis dies, it hits me pretty hard, but not like grief or depression does. It makes me realize that I'm basically fighting a war, and what makes this even more real, is the fact that I connected so well with several war veterans at a leadership conference in Boston. In fact, one of them even said I was his hero, and that man had practically saved an entire city from terrorists single-handedly.
It's weird how similar I am to those war veterans, who fought in Iraq between operation Desert Storm and operation Phantom Fury. It's also weird to have a disease that makes people so sick, and kills them when they least expect it. It's weird, and it's also terrifying. No matter how much I hate to admit it, I have to accept that I'm living in the shadow of death, and always have.
During my open heart surgery when I was three days old, I was technically dead. In order to do a surgery like that, my heart had to be stopped and my breathing had to be slowed down. My rib cage was sawed in half and opened up to expose my crucial organs. My lungs and heart heart were replaced with tubes and wires. My heart was basically dissected like a biology lesson, stitched up after the pulmonary valve was cut out, and then put back into its place. My rib cage was glued together, and my organs were restarted. I was expected to recover with nothing but baby Tylenol to take away the pain. Most people can hardly take the recovery pain away with morphine, yet as a tiny newborn baby, I slept, played, and was calmly held despite being in so much pain. I also had Sepsis, although I'm not sure if that had anything to do with the surgery, and on top of that, I had a breast milk allergy, Pneumonia, and a few other known things. CF wasn't even detected until I was two weeks old. By then, I weighed four pounds and was barely being kept alive by wires and tubes.
I know so much more happened to me when I was a newborn, I just don't know what. I only learned about having Sepsis as a newborn a couple nights ago, when it sprung up in a conversation with my mom. So, as I get older, my past evolves and becomes more clear. In a way, that makes it scarier, but also so much more miraculous. I also found out in that same conversation, that my doctors offered to turn off my machines at one point or another, just because they didn't think I was gonna make it. But, after lots of prayers and desperate medical attempts, I made it. I came out mentally and physically scarred, but I lived, and that's what matters.
My past explains so much about who I am today. I would've grown up to be a completely different person if I wasn't put through what I was put though.
Only a very small handful of people can say they've died several times in their lives. I died those several times in just a span of a few months. My mom and I like to joke about how I'm on my 25th life or whatever, but it's true. I've cheated death and illness so many times, that to say I've cheated death so many times isn't so much of a joke as I'd like it to be. It really makes me wonder what purpose in life I have to fulfill, since God is willing to work well over-time to keep me around. You'd think that I'd feel invincible by now, but in fact, it's quite the opposite.
I know how fragile life is, simply because I've shaken hands with death so many times. I'm not afraid of death or dying, but there's so much I want to do first. I know that's cliche, but it's true. I'm really not afraid of death, but I don't want to die either. If I was, I don't think God would've chosen me to have CF in the first place. And I certainly wouldn't have a dirtbike parked in my garage either! Every second of every day and night, I'm cheating death and illness. Every breath and heartbeat is an act of defiance in my world, because if I'm gonna be honest, I really shouldn't be here today. I can't express just how blessed and glad I am to be alive.
I can't explain why God lets me live but takes others home so early. I don't know what my purpose really is, and I like to think I'll just live an average life, but I know that's far from the truth. What I do know, however, is that right now, I'm alive and well. My resting lung function is at 105% and increasing, I can eat my average 5 daily meals just fine, and I can actually function like a normal person. I can take my dog to the park and play fetch with him for an hour, until he gets tired and I have to carry him back. I can ride my dirtbike, and only stop when my dirtbike quits or it gets dark. I can drive, and harass my dad about fixing my jeep so I can actually put my license to use. I can take care of myself, and I can do so much more that not many CFers can do. The fact that I can drive is a miracle in itself, since most CFers are too impaired to drive.
When I really reflect and think about everything, there's so much to celebrate, and not enough to spend time complaining about. I could very easily sit down and tell everyone how horrible my disease is, and how my window keeps flooding my bedroom, and how my house is always freezing, and how inconvenient it is to take 50 pills and do an hour of physical treatments everyday. But I don't, because I don't want to, and it's not that bad. In fact, in a strange way, Cystic Fibrosis is a blessing. Every single struggle is a blessing, even my fish tank for a basement window.
My Cystic Fibrosis is the worst of its kind. CF can show up in many different ways, kinda like how there's so many different breeds of dogs out there, but every "breed" of CF comes from the same root. My CF just happens to be the most aggressive "breed" of CF, which makes it the pitbull. Yet, I seem normal. Unlike so many others with my same type of CF, I'm alive and I'm well. I'm confident I'll never need a lung, liver, or heart transplant, and I will be able to lead a normal(ish) life. I was given 15-20 years to live when I was officially diagnosed with CF, and so far I seem to be proving those numbers wrong.
I still can't help but think about all of those people who have died fighting the same battle I'm fighting. It sometimes weighs heavy on my mind, and puts me in a fog. Sometimes I'll see the CFers who have died in my nightmares, especially when I'm sick. I've stopped looking for people with CF on social media for a lot of reasons, one being that I can't really deal with or comprehend seeing them dying. Survivor's guilt weighs heavily on my shoulders some days, and I know I won't know why God chose me to live until my purpose is fulfilled.
So instead of begging God for an answer I'll never get, I've decided to just live my life and see what the future holds. I know my life is uncertain, but I'm at peace about it. Whatever life throws at me, I'll be able to take it. What is there to fear when God is on my side? Truth is, nothing. That doesn't mean I'm not afraid of things, but it means I can be at peace about many things, including my disease and my fate.
It's basically impossible for me to fathom how far I've come, but at the same time, looking back at my past makes me feel better about the future. My story is unbelievable; stranger than fiction some may say. But it's true, and it really happened to me. I have the scars to prove it. My chest is split in two by my foot-long heart surgery scar, and my torso is littered with faded welts where tubes and wires were inserted into my body to keep me alive. I have more scars from various childhood and dirtbike injuries, although I don't revere them as much as I do the medical scars. I take a lot of pride in my scars, but I don't like to show them off to people.
My scars serve as a constant reminder of all the things that have tried and failed to kill me. I've realized I'm so much stronger than I think I can be, and sometimes stronger than I ever want to be. I know that sounds strange, but sometimes I wish I can just be weak and let someone else take over the battle, but I can't. No one can fight my CF except for me. Sure, doctors can assist with medications, people can talk me through it, and God can come in anytime and save me, but for the most part I'm alone. I'm one soldier against an army of trillions of illnesses, and backup's never gonna arrive.
With that being said, I deal with death and suffering by living. Most of the time, death doesn't cross my mind in a way that makes me reflect back on my life. Even though the life expectancy for CF is currently only 41 years, it has risen drastically in the last decade.
When my great uncle was born, he had CF and died as a two-year-old in the 1950s. My therapist was best friends with four sisters who all had CF. She doesn't know where they're at now, but back in the 1970s and 1980s, the sisters weren't expected to live much longer than 10 years and they were almost always in the hospital. When I was born, medical research was starting to really understand what CF really is, and how to treat it.
I was born at just the right time I think; late enough to die, but early enough to live. To most people, that makes no sense, but it makes sense to me because I was technically dead several times in my life as a newborn. Pulmonary Atresia stopped my heart, and Cystic Fibrosis tried to stop my breathing. I also had a slew of other issues that should've been the end of me, but no one gave up. When they did, God came in and gave everyone hope.
I've come to the conclusion that if I didn't have CF, I wouldn't believe in God. I wouldn't be a Christian if God didn't have multiple chances to show Himself in impossible ways. I'm the only known person in the world to have been cured of Pulmonary Atresia. My heart surgery scar should've been kept fresh, and my heart should've been handled by human hands tens of times in my lifetime, but my heart hasn't seen the light since I was a toddler.
I've decided that while I'm not invincible, death won't cross my mind too often. If I find myself dwelling on it, pretty soon I'm looking up other people with Cystic Fibrosis on social media. I scare myself when I find out a quarter of the profiles are of dead people, and over another half are nearing death. That stuff is branded into my brain for life. I start to think that I'm next, even though that is irrational and far from the truth. I don't look sickly like 90% of the CF population. I don't feel sick. I don't act sick. I don't like to think about my disease. I don't use my disease for pity points, which by the way, a lot of people in the CF community unfortunately do.
Instead, I don't dwell on my disease unless it's causing me issues. Sure, I treat it everyday and make sure to take precautions to stay healthy, but I don't let it run my life. If I did, I wouldn't be in a very good place right now. It does run certain aspects of my life. I take a minimum of three huge bags for just a weekend-long trip, which have a combined weight of at least 80 pounds. I do have to take a handful of pills with every meal and snack I eat, and more pills to treat my disease in other ways. I do have to keep my lungs clear and breathing, and am expected to get my heart racing for at least an hour a day (which, I honestly don't get it to race for that long many days, mostly because I don't have much time, and I despise running since I find it boring and pointless. But God often lets things happen that will get my heart racing so I can meet that daily goal. More stories for other days), so I find it hard to sit still for longer than an hour.
But I have to give CF credit where it's due. CF has unlocked doors to many blessings and cool experiences. It has allowed me to complete my last year of high school at home, reducing the probability of me getting sick and making it so much easier to take care of myself. It has made me want to pursue extreme and exhausting sports, such as freestyle motocross, paintball, and hunting, and has toughened me up to the point where I hardly feel pain when I should. When I do suffer an injury that causes me to limp or hold something, I laugh, brag, and make jokes about it. But best of all, Cystic Fibrosis has led me to believe in God, which is a massive topic in itself. Without CF, I'd just be another cookie-cutter person in a cookie-cutter society, and that wouldn't have been the best thing ever.
Death is just a part of life, and while many doctors believe my expiration date is less than 24 years away, 24 is just a number. Every disabled person I've really known about and sought advice from have lived well past their "expiration date". And, so much can happen in 24 years, especially since pills that are almost cures to CF have been released in the last 5 years or so. Most honest doctors who know me well don't know my life expectancy. In fact, many of them think I'll live a normal life if I just keep doing what I'm doing. My best doctors tell me not to worry about it. Instead, put my mind towards something else, and stop looking at social media profiles of dying CFers!
The psychologist that visits me every doctors' appointment, hasn't given me any links to any CF social media pages, and says I need to work on living rather than worrying about dying. Those pages are for sick and dying CFers. She even said to avoid most Chronic Illness social media pages too, just to be a little safer. Death isn't something I need to worry about. I should be more worried about a coyote coming into my house through the dog door to see what I'm having for lunch that day. That is way more likely to happen to me where I live, than it is for me to die from CF when I'm 41 years old or younger.
With that being said, God forbid a coyote ever gets into my house, let alone sits down across the dining table from me when I'm trying to enjoy any meal at any time of the day. God also forbid that death becomes a major thing to me before I reach the age of 70. I have my whole life ahead of me, and am certainly no typical case of Cystic Fibrosis. I have to take care of myself, but also take advantage of my health. To kill two birds with one stone, I'll gladly ride my dirtbike and get pelted by paintballs, if it means having fun while also stressing my heart and lungs out! The harder my body works, the better off I am. (Tie into life and death. The choice to live)