One of the biggest feelings CF instills into me is fear. That's actually the main driving force that keeps me alive and fighting. I am very afraid of what my condition is capable of doing to me if I don't, and even if I do, stay on top of things. Cystic Fibrosis, especially the type I have, is very unpredictable and dangerous. I may be healthy now, but there's always a chance I could come in contact with the wrong bacteria in life, and induce a severe, steady decline, similar to the decline I had from Pseudomonas that took almost two full years to recover from. In some ways, I still am recovering from my battle with that horrendous bacteria, and just can't thank God enough for creating these little bacteriophages, which can be bred and genetically modified to seek out Pseudomonas and other very dangerous bacteria cells and obliterate them.
However, Pseudomonas didn't leave me completely free of scars or trauma. That was the first severe illness that I'd gone through where I basically remembered every detail of what I was put through. I went in for monthly tests and check-ups, most of which brought more bad news than good news. One time, my doctors wanted to confirm if the problem rooted itself in my sinuses, so they brought in a bunch of equipment to get bacterial samples from deep within my sinuses. Instead of sedating me like I would've preferred, they sprayed some numbing stuff into my nostrils, which numbed some things up there, but not entirely. It certainly didn't numb what they were hoping it would. My sinuses were so clogged up with mucus that I failed to suck the numbing spray up into them like I was supposed to. Instead, I breathed it all the way into the back of my throat, and panicked when it felt like my throat was closing up.
A nurse looked down in there and determined that my throat wasn't actually closing up. Just some of my throat muscles had relaxed entirely due to the numbing spray. There wasn't anything to worry about, according to her, but I still remained very nervous and tense. I hated that feeling of a numb, relaxed throat. Just a few minutes later, a couple of doctors wheeled in a device they'd use to collect snot samples from my sinuses. They needed a tiny camera with a light to see what they were doing, and a very long and flexible sample swab to insert into my sinus cavities to pull out some snot. With me, they'd only have to go into the sinus cavity about a millimeter to get what they wanted, however they said that was still a very sensitive place, and to let them know if I felt any pain.
I clung to the armrests of my seat with white-knuckles, and shivered in anxious anticipation while the doctors readied the equipment. I don't know why I was so afraid. I just was. It's probably because in the past, most of the scary equipment I've come into contact with were hardly ever easy or painless. I gulped when the doctor asked me to lay back in my seat as much as possible so she could insert the camera and the swab. She gently pushed the tiny camera up my nose, following it with the swab. She pushed it all the way up into my upper sinuses, and then moved it into the sinus cavity itself. Instantly, a very sharp pain shot down my spine, making me jolt and yelp in pain. My jolt only made the swab go into my sinuses even deeper, and I began begging my doctor through my helpless tears to get the thing out of my nostrils. I was very afraid and in a lot of pain, and was certain that was not how that was supposed to feel.
She quickly pulled it out of my nose, and said that while she was satisfied with the sample she had, we still had to do the other side. She knew that the numbing stuff was working, especially when I told her how numb everything but my sinuses felt. However, she realized that the numbing spray did not go into my sinuses because of how clogged they were. She just told me to grit my teeth while she did it again, so I did. This time, I anticipated the pain, so I forced myself to stay perfectly still while she poked around in my sinuses for a quick second or two, which felt like an hour.
When she was finally done, she dismissed me and my mom and said she'd contact us in a few days when my cultures were grown and analyzed. All of that adrenaline gave me the energy to sprint out of that hospital, leaving my mom still waiting at the 3rd floor elevators while I stood outside by our car in the parking lot, panting and shivering from the adrenaline.
I don't expect to get out of therapy anytime soon after what I went through.
Fights like those are a stark reminder of what I've been born with. Sure, I am extremely healthy for what I have, but I'm still living in the Grim Reaper's shadow. And, I'll tell ya, that son of a bitch is persistent! The key to cheating death today is not toughing it out anymore. It's learning how to outsmart and kill the infection before it kills me. And, when dealing with bacteria such as Pseudomonas, it gets very, very tricky. There are over 200 different species of Pseudomonas, and one kind of Pseudomonas can evolve into another one of those 200+ species of Pseudomonas in less than 48 hours to avoid getting destroyed (this is known as becoming antibiotic-resistant). It can also colonize every millimeter of my airways in that same time, slowly eating away at my tissues as it progresses. The stronger it gets, the faster it eats, and the less time I have.
The key to surviving such an infection is not to tough it out, but to counter it with genetically modified bacteriophages that are like heat-seeking missiles, and will replicate themselves within a Pseudomonas bacteria cell up to 40,000 times in 45 minutes, effectively destroying the Pseudomonas cell and releasing another 40,000 anti-Psuedomonas bacteriophages to seek out more Pseudomonas cells. To me, the hardest part about Pseudomonas isn't the Pseudomonas itself anymore, but the clean-up job after. Unfortunately, not many people can say the same thing. Most of the time, they don't live to execute the clean-up process. And even those who do, are often left too weak to rebuild what Pseudomonas destroyed, leaving them completely defenseless against the next bacterial attack they are faced with.
Fortunately, or unfortunately, depending on how one looks at it, I generally look healthy after long battle with Pseudomonas, or any sort of crippling lung infection for that matter. That's probably because I feel like I have the flu afterwards, so I wrap myself up in layers that make me look much bigger than I really am after a fight like that. That extra heat also gives me some color in my cheeks, hiding the greyish skin-tone I usually have when I get very sick and during the months immediately after I kill the infection. Also, I'm so used to feeling like crap that I can live through the pain, hiding the fact that I'm still really sick behind a reassuring smile and the will of a workhorse.
However, when I'm alone, particularly when I'm in bed, my inner demons will exploit my temporary weakness. The nightmares I have when I'm sick, and especially during the recovery process, are usually extremely intense and vivid, leaving me shaking and drenched in sweat once I can finally snap out of them. As afraid as they leave me, I know nobody else can really help me process what those nightmares exposed me to. So instead of waking someone else up to share my pain, I just have to remind myself that what I saw in my sleep wasn't real until I can fall back asleep again. But, that usually means I just fall back into the same night terror, and the vicious cycle continues.
People often think I'm just being lazy if I return to life slowly after a bout of illness. Even my own family has been guilty of thinking this about me, which doesn't help at all with my sense of belonging, or lack thereof. Sometimes, I do wish my condition was a little more visible. Perhaps I wouldn't be scolded or scoffed at so much for slowing down if I looked a little more screwed up on the outside. Upon thinking about it, I could wear V-necks and crop tops to expose my heart surgery scars, but that would also make me feel extremely uncomfortable as it has when I used to wear bikinis to the beach. Instead of showing off those faded scars, there are much better ways of dealing with the ignorant.
It's not people's ignorance that usually gets to me. My own mind has a way of turning against me when I'm at my weakest, and has the ability to absolutely destroy me. It often reminds me of what everyone else around me is capable of doing, while I'm incapable of doing those things. I just love to remind myself just how sick and far behind I am compared to everyone else. Even now, I'm really struggling with not going to college right away, even though I'll only be out for a semester while I learn how to drive, finish this book, and make some extra cash at work. My parents constantly remind me that, given the circumstances, I'm years ahead of where I should be, and just need to give myself a break. However, that's much easier said than done. Either that, or it reminds me of everyone with CF my age and younger who has died from the same infections I often get, almost as if my brain's trying to tell me I'm next. After all of the near-death experiences I've had so far, it's not completely illogical to have a slight feeling that my luck might be running out. If a car gets just an inch too close to me while I'm crossing the road, my head's definitely on a swivel for the rest of the day.
Living with Cystic Fibrosis has definitely given me a hefty case of PTSD, just because of what it put me through for so many years. I've seen a lot of blood, mostly my own. I've felt a lot of excruciating pain from being stabbed with larger-than-average needles, pumped with insane amounts of heavy-duty antibiotics, and being infected with antibiotic-resistant flesh-eating bacteria. I've seen gurneys draped in white blankets being wheeled down the hospital corridor past my hospital room. I've been told by many doctors that I don't have a lot of time left, although I've lived past their predictions to the point they've stopped telling me to prepare a funeral for myself. I've heard about a lot of people with CF my age dying from the same strains of bacteria I've been infected with. I've met a lot of parents who've lost kids to CF, who are looking to me for peace and comfort, which are things I fear I cannot provide. And, worst of all, I know this war of mine will not be over with until I die. The way I count my victories is not by curing CF, but by living up to and past years I should've died during, knowing full well, one of these years, my mortality will finally catch up to me.
My own mental trauma doesn't affect me like PTSD typically affects other people. Perhaps that's because I can't really look back on my life and think in terms of the past, as in what I've been through will never probably happen to me again. A retired marine will never be called to serve his country again, effectively allowing him to come to terms with what he went through, and allowing him to heal and, in some ways, return to normality. What I dealt with in the past will eventually happen to me again. I will eventually have to fight another long battle with another severe lung infection, which could be a battle that I've had before, or I'll be faced with a new bacteria that requires a new strategy and set of medications to eradicate. Because of this, I often mentally break down whenever I'm faced with a new lung infection, because all I can think is, "Not again! Please God, not again!"
I'm constantly in fight mode, because everyday I have to be vigilant about taking all of my pills, doing all of my treatments, eating all of my food, and exercising to keep myself fit. When my flight-or-fight response is triggered, more often than not, I raise my voice, ball up my fists, and get ready to defend myself to the death. It's a miracle I haven't been in any real physical fight before outside of my old dojo, because of how easily startled I am by people to whom I've swung my fist at out of instinct before.
It's practically impossible to treat something like PTSD when it's ongoing. Even if I do manage to heal, something else will happen that will just dig a new wound in the same place as the old one. PTSD is a real, physical wound that can be found on brain scans. The chances of me ever healing from my trauma are minuscule. So, I've just had to learn how to live with it. Therapy has certainly helped in some ways, such as giving me a person to vent to, although most of my battles with my pain are fought when I'm alone in bed, either stuck in some vivid nightmare or held down by sleep paralysis while I gasp for air. In the past, I have tried to confront my memories with my therapists. But that has only resulted in me getting burned even more by the very thing I tried to get rid of. I have induced severe migraines and vomited in front of my therapists when trying to defang my worst memories, forcing me to cut the sessions short.
The best way I deal with my trauma is to turn my past into a set of jokes. While most people I know just cringe at how sick and twisted my humor can be, it's one of the best ways I can heal my pain. Laughter in that sense is truly the best medicine. Dark humor, like a kid with stage-4 cancer, never gets old, and the jokes I tell myself to get me through hard times have also assisted me in keeping my sanity. The only people who can share my humor, as far as I know, are war veterans who have lived on the front lines. My humor is probably not suitable for everyday people who haven't experienced the things either I, or my war veteran buddies have. While I do suffer from severe stage fright, the real reason why I haven't gone to an open-mic night is because I know, just from experience, that most people cannot handle my vile humor, even if they usually enjoy jokes that are very racist, sexist, homophobic, ableist, etc. My humor just goes way over the top, and make childhood cancer jokes seem like something a Fundamentalist pastor would tell to his congregation.
Most of my tamer jokes require some context to understand. For instance, after having a particularly rough time on the toilet, I left the bathroom and warned my dad about it saying, "I just bombed Hiroshima, so you might wanna stay out of there for an hour until the radioactive smoke clears. You don't want your eyes to melt out of your skull, do ya?"
Another time, when I was being introduced to one of my mom's many friends, he asked me, "So, what's up with your health? How do you deal with such a terrible disease?"
And, being sick and tired of being asked the same old questions about myself, I responded by saying in a monotone voice, "I deal with it by doing a lot of drugs and taking a lot of hits. I'm still alive though, so I guess I'm fine."
He didn't know how to react. He didn't know what I really meant, and I knew that. Otherwise, I probably wouldn't have made the joke. Regardless, his jaw dropped, his eyebrows shot up, and all he could manage to mumble was, "What?"
And, I almost got sent down to the principal's office in 8th grade when I was doing Tobramycin for the first time to treat my first Pseudomonas infection. That stuff was brutal, and I had to do it on the way to school because I didn't have time to do it at home. It stuck to my face and made my eyes very red and watery for most of the day. One of my peers asked within earshot of a teacher, "So, why are your eyes so red?"
And I responded by shrugging and saying, "I hotboxed the car." which was true. I did hotbox the car with Tobramycin, but everyone else who heard me (which happened to be the whole class), including the teacher, thought I meant I hotboxed the car with weed. I spent 10 minutes of my morning explaining to everyone that I was not actually high, but that I was really just inhaling a very strong antibiotic to get rid of a severe lung infection, and tried to make a joke about it. Thankfully, by then, pretty much everyone was aware of my issues, and since I was perfectly coherent, they believed me and let me off the hook. But, that joke went down in history at that school. Even when I was long done with Tobramycin, both my peers and my teachers still occasionally asked something like, "So, did you have fun hotboxing the car this morning?"
When I met several war veterans in Boston for a weekend conference about resilience and getting through hell, I decided to test them by letting some of my worst humor loose. I made jokes about my mortality, laughed about my experiences with my recent fight with Pseudomonas, and talked about death as if it was some guy I befriended at a bar once who I somehow pissed off enough to make him threaten my life. Instead of getting reprimanded by them, my new friends erupted in wheezy laughter, and my jokes were referenced during the rest of the conference. This opened the door for them to share some of their humor, including using it to explain concepts to the rest of us. Everyone who hadn't experienced the level trauma either I or the vets experienced in our lifetimes, were extremely uncomfortable, and my mom had to leave the room once or twice to fully digest what was being joked about.
Several months later, while I was at Clarke's, somehow Hitler and his atrocities came up in the conversation. This led to Clarke talking about how flawed Hitler's viewpoint of the perfect Aryan was. Hitler believed that strong, healthy, blue-eyed blonde-haired people were the ultimate master race, and everyone who wasn't a healthy, blue-eyed blonde-haired person wasn't worthy of living. However, Hitler wasn't blonde-haired or blue-eyed. In fact, studies suggest that Hitler had a lot of Jewish and African ancestry. If his own ideology was used against him, Hitler would've ended up in a gas chamber. And if we really think about it, I am Hitler's perfect creation. Cystic Fibrosis stems from a purely European recessive gene, and anyone who has CF has a very pure European bloodline. Pretty much every one of my ancestors is about as white European as one could get, as that's the only way the CF gene could've survived to get to me. So, if Hitler actually thought things through, I'd be his ultimate vision of the master race. Sieg Heil!
(For the record, racism is very bad and Hitler is the worst human being to ever exist on the face of the earth besides Stalin and Mao. His ideology is pure evil and should never be actually praised. Nazism should only be relentlessly denounced and/or made fun of, and never should it be taken seriously.)
Outside of verbal humor, I definitely have a lot of physical humor as well. For instance, when I'm at family get-togethers with relatives who have a childish sense of humor, we'll have burping contests, or someone will let one rip into the fire to see if they can trigger a small explosion. The "pull my finger" joke never gets old either. But, my favorite joke is called the Canadian Car Heater. When someone in one of the front seats of the car lets one rip, the windows are locked and the heater is turned up to full-blast, even if it's the middle of July, so everyone in the car except for the offender has to suffer.
Clarke taught me this long before my farts went from being pretty bad to being downright rancid. As time goes on, my pancreas gets worse at its job, and like I said, the enzymes I take don't digest everything. So, as you can imagine, things just straight up rot inside me sometimes, making the Canadian Car Heater joke so much worse when I participate in it. My CF has also taken its toll on my sinuses, so I don't have a good sense of smell. I can still taste food pretty well, but for the most part, the smell of rotting things does not affect me the same way it does to everyone else. So, I am usually not affected by anyone else's farts in the Canadian Car Heater, which makes it that much more entertaining for me.
I'll also use food in my humor, since it plays a very important role in my survival. My mom is very squeamish, so occasionally, just to get a reaction, I will lick my wild game while it's still raw. My mom is convinced I have parasites now, which I honestly cannot deny, although medical tests haven't come up with anything like that either. Unless a tapeworm crawls out of my ass, I won't worry about what may or may not be growing in my intestines. Even then, I might adopt that tapeworm as a pet.
When my dad and I had rocky mountain oysters together for the first time, I looked at him, smirked, and asked, "Isn't it pretty gay if you eat that?" to which he replied, "Not if I say 'no homo' first." which I couldn't argue with. From then on, my dad mumbled "No homo" each time before he had another rocky mountain oyster.
Not everyone gets my humor, or appreciates it, including most of my family members. Even my dad, who is known for taking jokes too far, can't always laugh at the jokes I tell, partly because he doesn't always understand them, partly because they cross his line. To me, no joke crosses the line. I have no line. However, I do dictate what should and shouldn't be shared with everyone else, including through writing, because I know most of my humor will not reflect on my mentality too well.
I think I deal with my condition well because I allow myself to make jokes about it, as well as about every other horrible thing in life. If I didn't turn to humor in my darkest times, I would've died a very long time ago. Humor makes horrible things bearable, even for just a moment. That brief moment in time is all I need to take a few breaths, before taking on the whole weight of my condition once again. People may get very upset by my humor, as they have before. People may lose their respect for me. People may even try to use my humor against me. However, I don't care what the average person thinks of my horrible humor. Dark comedy undoubtedly saved my life, and will continue to save my life until the very end.
And if you're the type to try and censor anything you don't agree with, including and especially humor, you're literally the second coming of Hitler, you book-burning nazi!
Besides humor, I have my other ways of coping with life as well. Music has definitely played a big role in my life, though severe stage fright and the fear of being judged stopped me from playing the piano for anyone except for myself, since I was in elementary school. But, when I'm home alone and have nothing else better to do, I'll usually sit down at my piano and play to my heart's desire. Playing the piano forces me back into the moment, allowing me to forget about everything that's bothering me so I can relax. I can't read notes, but I do play music by ear, meaning I can listen to any song once or twice, and be able to play it perfectly on the piano whenever I want to.
I've also gotten to extreme sports to help me reduce my anxiety. To the average, non-adrenaline junkie, much of what I enjoy doing is crazy, and well, I can't deny that. However, extreme sports definitely force me to stop thinking about everything, except for what is going on in the moment. When I'm riding my dirtbike in the mountains on a steep, narrow, and rocky trail, with a 20 foot granite wall on one side of the trail, and a 200 foot cliff on the other side, I can't let my mind wander, because one small mistake could end of my life. Dirtbike rides are my ultimate reset button. They simultaneously exhaust and energize me. They test my strength like nothing else. Just because I have an engine below my saddle doesn't mean I'm doing minimal exercise. In fact, enduro riding tests out my strength and tears up my muscles like no other physical activity I've tried so far, which makes it that much more rewarding.
However, working with animals, horses in particular, has been my favorite coping mechanism so far. Sure, humor, art, and writing are things I can do literally anytime I want to, but working with horses has been the most healing for me. Horses are prey animals, They are also herd animals. Because of this, they watch every movement of every little thing around them, including and especially humans. Horses reflect the behavior of others, and use the most subtle body language to communicate with the world around them.
A horse will tense up if I just slightly tense up one muscle. A horse will also relax if I remain perfectly relaxed in the saddle. Off the saddle, a horse can still tell when I'm even just slightly nervous, and will reflect my behavior in much more obvious ways. So, in order to safely work with horses, I've had to learn how to mask my fear in stoic bravery, to show the horse that I am not a threat, and there are no other threats nearby. A horse is about as worried about a cougar jumping out from behind a bush as I am worried about getting a Pseudomonas infection from drinking a stagnant puddle. In a horse's mind, every shadow, blind corner, unknown noise, and bushy tree poses a major threat. And, I can understand that fear. Perhaps, that's why horses are drawn to me, and I am drawn to them.
If every other coping mechanism fails, sometimes I just have to sit down and listen to some music. I like fast-paced music like bluegrass and hard rock, or a mix between the two, but when I'm anxious, those genres don't help at all. So, instead I'll listen to something tamer, like older country music from singers like Waylon Jennings and Johnny Cash, some of the soundtracks from World of Warcraft, or outlaw country blues like the stuff Dallas Moore and Ray Wylie Hubbard sing. Music brings be back to reality without fail. It helps to calm me down, or keep me focused when I need to be focused. It's my caffeine when I have none, as well as the one thing that slows down my heart-rate when it's skipping beats from anxiety.
People often criticize me for a number of things regarding my addiction to music, including my own family. My mom thinks I have a poor taste in music and listen to it too much. My grandparents, if they ever get to hear the music I listen to, would probably criticize it for being vulgar, loud, and ungodly. My dad said that the music I listen to is too badass for him to thoroughly enjoy. And Clarke can't help but cringe whenever I get a hold of the aux cord in the truck, and says my music sucks because it's not rap or alternative rock.
But, I honestly couldn't care less about what people think about my taste in music. The beauty of music is that there's a song out there for everyone. Taste in it is entirely subjective. However, if music taste was objective, mine would certainly be the right stuff.
